Quick update on a few fronts...

First of all, I forgot to mention this yesterday but I finally shed the last couple of pounds from the dex this time out. It was a 15 pound swing up and down. I am now three pounds lighter than when I started treatment six months ago. Sadly, the composition of those pounds has shifted away from muscle to fat as the dex (and inactivity) has destroyed a lot of muscle. I can't say I look forward to physical therapy, but I do look forward to being on the other side of it.

Lab results from yesterday are generally good. In fact they are quite good, with the exception of the M spike which remains stable at "trace" levels. This prompts the question: would "trace" become "zero" -- and would it be immunofixation negative at that -- with another round of consolidation. Or is what I have had, plus what I will get in maintenance, enough. Obviously, this is a question for BB. We were originally supposed to meet with him on Monday, but our APN decided to cancel that since there wouldn't be a point in it unless I was ready to be discharged. She wanted to see if I would still be neutropenic.

And on that note, I turned the corner today. Yesterdays WBC was 0.55, and todays is 0.6. I suspect that by Sunday, I will no longer be neutropenic. Hopefully this will be the last time in my life that my immune system is destroyed!

I also got the last Velcade push today. This represents the final medicine of the primary protocol here. There's a lot to do in maintenance therapy, but that's it as far as killing cancer in Little Rock. Unless, of course, we decide that another round of consolidation therapy is in order. I was mulling that over today as we walked to the car, and all I could think of was the recurring theme in M*A*S*H where Hawkeye kept complaining about more points being required before he could rotate back to Maine. I'm struggling now to recall the town where his character was from...Wikipedia is just a click away but I think I'll let this one rest.

My hemoglobin is in the 12s, so I don't feel nearly exhausted as I have in the past. Hopefully this will continue to recover. I don't know what I would do with myself if it were squarely in the "normal" range! Platelets fell to 29 today. We'll see if that is the bottom or if they fall further. They probably won't infuse me with more unless it falls tomorrow to well below 20.

All the electrolytes look good. The RDW (the variability in the size of the red blood cells) is now normal. This is a common out-of-whack number for patients with MM so I take that as a good sign.

They also ran cholesterol, which was not fasting, and it came in around 254. This is high, were I fasting, but we don't know what it is without fasting so I asked the APN to include that with tomorrow's tests and I will not eat anything in the morning. It's a treat but also a headache to be focused on cholestrol in my blood numbers for a change. It brings me back to considering whether or not to go on Lipitor, since at least one crack-pot out there thinks Lipitor caused my cancer. I've also been told that Revlimind reduces cholesterol, and I've been told that the renewed immune system may better manage cholesterol production. We'll see how this all shakes out in the weeks and months to come.

That's about all I can think of right now...so off to bed it is.

Oh...Hawkeye Pierce was from Crabapple Cove. I had to look it up after all. ;)

The worst song by the band Rush...

...is probably one from their little-listened-to self-titled CD. The song is called "I Think I'm Going Bald." And it's appropriate. I've been running my hand over my head to check. I was JUST noticing that the hair is starting to come back in pretty evenly...and now my hand is full of hair.

Dammit.

Oh well. In the scheme of things, it doesn't matter at all.

This is a good time for me to note that while I am frustrated by the fact that I am not *quite* in CR, I remain humbled by the experience of those around me. Some have fared very well -- a few of the people that I've met along the way are in CR and look healthy, happy, and ready to resume their life. Others have struggled -- whether because the treatment itself has brutalized them, or the cancer has not responded as they'd hoped.

While I am by no means fortunate to have been stricken with this cancer, I remain very thankful that I have tolerated treatment as well as I have, and I remain very thankful that so far it appears to be directionally headed toward remission. My thoughts and prayers go out to those who struggle with MM and whose fight is more difficult than my own.

Nothing new to report, but one piece of info on shots for those about to undergo this...

Lab results from yesterday very normal. Platelets down to 87, as expected. Whites recovered to 4.4 or so, which is the peak before the crash. Everything else looks good.

The sole little tidbit of into today comes to the difference in pain between a Lovinox injection (which is given when on thalidomide and dex to prevent deep vein thrombosis / blood clots) and a Neupogyn injection (which is given to stimulate white blood cell growth).

Neupogyn hurts more.

That is all.

Consistent labs, inconsistent points of view on lesser matters

Well, they were quick in the lab and I got the results of yesterday's blood draw, which were consistent with last Thursday. Trace M-protein in the blood. On the whole, this is good -- I'd rather have two consecutive readings which confirm the low number than have it bounce up. Of course I'd gotten accustomed to the notion of it being gone, but I must remember these are very early days. We could be seeing the ongoing impact of my FIRST transplant, much less the second, much less the consolidation treatment. I am confident that "trace" will become "none" -- it's just a matter of time.

Having said that...SOON, PLEASE. :)

The APN confirmed that trace is less than 0.1. She said we might also see a marking indicating that they aren't able to tell whether it is there or not. She said that trace amounts of lambda is common in the general population. Perhaps. All I know is, I want CR in order to feel good about the likelihood of putting this all behind me forever, and in the event that I ever want to purchase more life insurance they will want to know more than "it's probably nothing."

Other labs were more or less as expected. My WBC was at 1.75 yesterday so today it's probably no more than 1 and on its way down. Electrolytes were all good. Liver numbers are even settling down -- perhaps it was the Melphalan that irritated the liver. Who knows. Kidneys are champs. I am anemic and platelets are falling, down to 117 and counting. All par for the course.

I asked a few things that I still don't get consistent answers on.

* Would I be likely to lose the hair? So far, so good...except it wasn't really until maybe 10 days after my Adriamycin last time that it fell out. Now obviously losing one's hair is no big deal at all in the scheme of things, but it did take five months to grow back to the state where it is now, and I'd just like some idea of whether or not I should be shaving it in preparation for it to fall out, or if it will come back in at this point.

* How long will I be neutropenic? This is of interest because we want to GET HOME and call our primary therapy a day. BB had told me (as had BJ, his assistant) that neutropenia from consolidation is less severe because the dosage is reduced. However the APN pointed out that unlike after the transplants, I'm not getting any cells, so the recovery isn't as quick. She thought, in any case, I would probably be out of it by next Monday or thereabouts. We shall see. I have been a quick responder in the past so hopefully my marrow's got another round of cells in it.

* Do I need reimmunization? This is a new one. I came across a mention of this topic in another MM blog last night, and I remember asking the question very early on of one of the doctors with whom I spoke but I honestly can't remember the answer. From the limited Google search I did, it looks like there (a) isn't a lot written on this, and (b) there doesn't seem to be a consensus. What a shock -- lack of consensus in Myeloma treatment! I will speak with BB about this when I meet with him -- the meeting has been pushed back from this Thursday to next Monday since I won't be able to be discharged on Thursday anyway, and that will allow Monday to be a more substantive appointment (including more updated lab data). My hunch is BB will say that no reimmunization is necessary. In fact from a conversation I had, which I believe was recorded here, one of his former patients said that BB believes the immune system is stronger post transplant than before. We shall see.

Lastly, I am trying to work out the logistics for maintenance care. More on this tomorrow -- I'm starving and it's time to eat!

Progress!

First, I am neutropenic. I know this because I am utterly exhausted. It started to hit me yesterday afternoon when I was inexplicably dragging. By now, it's all I can do to stand up. But this is par for the course and I'm not going to be concerned about it.

Second, that Lasix (the drug that induces urination to release the retained water) does work but it happened over several days, not the terrifying dam-bursting situation that I thought was going to occur. This has been hell on sleep, because I'm constantly getting up to use the bathroom, but I have lost 8 pounds in two days and have only 3-4 more before I am back to where I was before this last round of consolidation chemo.

Now...with that out of the way...the exciting news. Bear in mind, this is based on the blood draw from last Thursday, the 16th, so it doesn't reflect the full impact of this cycle of chemotherapy.

I'll give it to you straight from the lab paper: "Trace M-protein is present in low quantity in the gamma-region but cannot be accurately quantified due to presence of other immunoglobulins."

Some quick translation here. Immunoglobulins of different types -- called gamma, alpha, beta, etc. -- are present in the blood. Different flavors of myeloma can affect each type of plasma cell. I have the most common form of Myeloma, IgG (immuoglobulin gamma). Meaning that the "gamma" immunoglobulin in my blood contains both "good" immunoglobulin created by healthy plasma cells, as well as this monoclonal "bad" protein created by the cancer cells. So when they are looking in the "gamma region" for the M-protein, they are saying that within the gamma protein, there is some of the bad protein, but that there isn't enough to accurately quantify exactly how much. The margin of error of the test is probably greater than the amount of the protein!

"Trace" sounds very low indeed! Not zero, but very low. It's unclear if this is less than 0.1, or simply less than some other arbitrary number at which they stop measuring (could be anything lower than 0.4), but it represents a clear response to consolidation. As I mentioned there were two more days of chemo after this pull, plus more Velcade, thalidomide, dex, etc. So with any luck, I will be even lower right now. It seems to me they wouldn't arbitrarily cut off at 0.4 -- I would think "trace" means one less significant digit or something like that, but there's no way to know for sure (until I pester BB about it later in the week).

We will know more from today's blood draw on Thursday, which is when I am also going to be visiting with BB. In the meantime, I will have daily lab visits and hopefully a quick rebound from neutropenia. With luck, the data on Thursday will be even more definitive than this information.

Certainly this trajectory is a positive one -- I am headed in the direction of CR, which as you know I have been somewhat fixated upon. :)

The strata, one more time:

Very Good Partial Remission -- normal marrow under basic analysis, some residual M-protein (this is where I was)
Near Complete Remission -- as above with no residual M-protein under electrophoresis (the standard test)
Complete Remission -- as above with no residual M-protein under immunofixation (a more sensitive test)
Stringent CR -- as above with normal marrow under immunofluorescence (very sensitive test)

Thanks for all the well-wishes, prayers and support. I will keep focused, and keep you posted!

(Edited and updated and corrected!) No more chemo, no new information, other than tips on female facial hair

I went into the clinic today and waited for 90 minutes before they were ready for me...slow day but not a lot of nurses working in the infusion center.

My chemo bags were disconnected -- hurray! -- and my labs were uneventful. White cells have come back down from their peak and platelets are starting to fall, so I would guess I will be neutropenic in 3-4 more days. They do not have M-spike data for me from last Thursday's pull, and it will be anticlimactic anyway since I will not see the full benefit of the poison until the Neutropenia has set in. But frankly any movement off the 0.5 will be a good sign. My tastebuds are torched completely so I know the fast-dividing cells have in fact been dying.

A quick note to those following the GI issues, either for personal fascination or for a more legitimate reason (i.e. going through treatment). On balance, the prescribed amount of medication (2 Senna tablets per day for stool softener, 2 docusan tablets per day as a laxative) was appropriate given the thalidomide and dex but can probably be eased off on day 3 of 4. Enough said.

I have put on another 15 pounds during this course of Dex, hopefully entirely water-weight again. Although I'd been told it's better to get rid of this naturally as one's body releases the fluid, the APN wanted to give me an IV push of some kind of drug (sounded like Ricin but I know that is nerve gas so that can't be right...or can it?). I had previously been prescribed a pill, but was told they wanted to hit me with the high-powered stuff. So be it, I thought. Although I was worried a little bit.

I asked the nurse if I would make it back home. I told her that I was about 10 minutes away. She said, without a hint of irony, "you should make it." Then I asked "are we talking frequency issues here, or am I going to be stuck in a bathroom for 90 minutes unabated?" She paused for a long time. I pointed out that this was supposed to be a rhetorical question, asked for humor's sake, and easily answered. She finally said "well, it's 3PM now...you should be done by dark."

So after this warning that should have been enough to terrify most people...turned out nothing has happened. It's dark, and I've peed about three times, and I'm bloated as ever...or then some. So I am still waiting for some horrible dam-breaking event that will probably occur in the dead of night, which keeps me from taking the Ambien that I so desperately want to take.

So...to the facial hair comment which must again be filed under (1) minor faux paus from me, and (2) inexplicable offers of too much information on the part of nurses. My friend Matt, who is visiting, sports a goatee. The nurse (not the one who administered my meds but the one who took my vitals), who I have seen many times before, sat me down and asked how the kids were. I said that my friend was visiting me to give Jill a break. I then joked and said, "actually, this is still Jill, but her hormone pills have finally kicked in."

Then the nurse said "you know what they say about women with beards."

I gasped. She did, indeed, have tufts of beard beneath about one-third of her chin.

Here I was, making a harmless little joke that should have ended with a chuckle and that would be that. Instead, it was rolling out the red carpet for the Bearded Lady to strut her stuff. I will endeavor to do this more tactfully than did she. Women with beards, I am told by this bearded woman, are evidently accomplished in the marital arts. Or so she had been told, presumably by other bearded women.

To those women reading this: do not grow beards under the illusion this will impress men. I don't know who has been spreading this falsehood but trust me, beards are not considered an attractive element in a woman's appearance by most.

I noted upon leaving that my Potassium was 3.4, rather than the normal 3.5. Nothing to worry about, I was told. I asked about eating a potato and was told not to worry about it. So upon returning and deciding I wanted to sleep for a couple of hours, I was interrupted by a phone call from the infusion center. My Potassium had fallen in today's labs to 3.2, and I needed to come in to get an infuser. I asked if I could just eat some potatoes. I was told no, something had to be done, and I had to pick up the infuser. Any time before 7, I was told.

At 6:20, I went into the infusion center. It was a slow day, so the pharmacy had closed up and there was no infuser for me. I was told to...eat some potatoes.

Gunga Din vs. Carl the Greenskeeper, VGPR vs. CR and other errata...

Thank you for all the responses to my previous blog! I'm especially tickled that my Eduardo Gianelli references prompted my big brother to respond!

My knowledge of Gunga Din (including, evidently, the titular character's proper spelling / capitalization) pales in comparison to his. But as a child of the 1980s and a golf hacker, my knowledge of Caddyshack, including Carl the Greenskeeper's many soliloquies, is not to be trifled with.

From memory, the Dalai Lama speech:

CARL: So I make my way over to Hong Hong, and I jump ship over to Tibet. And I get there, and I sign on as a jock.

AWED ASSSITANT: A jock? You mean a caddy?

CARL: (of course, stupid, learn the lingo) Yeah, a jock. A caddy. You know, a pro jock. Anyways I tell 'em I'm a pro jock, and who do you think they send me out with? The Dalai Lama himself. Twelfth son of the Lama, the flowing robes, the baldness....striking. So we tee off, and the Lama WHACKS one -- big hitter, the Lama -- into the base of a 9,000 foot crevasse. And he looks at me...and do you know what he says? Gungada...Gunga la Gunga. Gunga la Gunga. So we finish 18, and the Lama's gonna stiff me!! So I say...HEY....LAMA (he is now prodding the listener with a pitchfork for emphasis)...HOWSABOUT A LITTLE SOMETHING, YOU KNOW, FOR THE EFFORT!!! And he looks at me and he says...oh there won't be any money. But when you die...ON YOUR DEATHBED...you will receive Total Consciousness. So I got THAT going for me....which is nice.

Thank you folks, thank you.

Okay, my dear friend Dr. Bill, not sure if you were striving for perfect verisimilitude in your citation of Rick Derringer's lyrics, but if you were you should of course know they are "Rock and roll, hootchie coo, lordie mamma light my fuse." A less impressive slice of 1970s ouevre than the early days of Saturday Night Live, but important knowledge nonetheless.

Lori Puente, I did in fact meet Jan and Bruce in the infusion center yesterday (they were kind enough to stop by and introduce themselves) and we had a very nice conversation. They both say hello; Bruce looks to be in good health and spirits and we hope to grab a glass of wine with them next week. Jill and I also had a nice lunch with fellow travelers PB and CB, who it turns out at one point consulted CS, whose wife was successfully treated here eight years ago under Total Therapy 2, and who was one of the people to whom I spoke (through a completely separate set of connections) back in February. It's a small world, as my employer is fond of saying!

The night before last, when we were out to dinner with BB's assistant BJ, BB drove by on his Ducati and saw BJ's car and stopped in. We wound up eating with him and having some wine and spending three plus hours together talking about everything from politics to cars to MM treatment to my daughter's vision challenges (she has a congenital defect in her eyes called Cone Dystrophy that is a pretty nasty thing) to his very funny wit and the nature of the prickly but undeniably successful professional relationship that he and BJ have had for twenty years. Some highlights as it pertains to my treatment:

* Finally got them to opine on the likelihood of all my hair falling out from consolidation. If pressed, 30% chance it falls out. So no point in shaving the head bald right now unless I like the look.

* Where does the M-protein come from if the marrow is clean? No certainty, some of it from residual plasma cells in the blood, some of it from undetected cells in the marrow.

* BB pointed out that in cases of smoldering myeloma, where one could have a very low M-spike (under 1, say) for years that would go undetected (certainly my primary physician would never have noticed anything wrong with total protein and wouldn't have ordered a second blood panel) CR might not be achieved. It might revert to a smoldering state.

That is not satisfactory to me. And this bridges the topic from correcting pop culture references to addressing some very important observations by some of my fellow travelers in yesterday's comments fields.

First, my bias: at the 50,000 foot level, MM physicians have one of two philosophies: eradicate the disease, or control the disease.

I do NOT believe, at this point in my life, in controlling this disease in a stable state. With my M-spike where it was and my marrow where it was upon diagnosis, trying to contain this beast with dietary supplements or anything short of proven western medicine was not an option for me, and I do not hesitate in this decision one iota. I have sought, from the moment of diagnosis, the closest thing to a complete cure. BB's data shows a cure rate on the order of 60%+ for all patients (including high risk) and over 80% for low-risk patients -- and these are conservative figures as they include mortality from non-disease causes.

This was no sleeping dog. This was an angry, vicious, rabid dog about to tear me apart. And I wasn't going to calm it back down to sleep through anything less than full-out assault by Western Medicine. Moreover, I don't want to simply transform it from a biting Pit Bull to a Chihuahua nipping at my heels. I want no dog anywhere near me.

BB has more than theories or test-tube results. He has hundreds of patients who have gone through the exact same therapeutic regimen. So when I say that achieving CC has a different result than achieving VGPR, this is based on precise data. In this case, of 214 patients with at least five years under TT3 (recall that at year six, if the cancer is gone, the likelihood of recurrence is extremely low):

- of 138 who, three years after enrollment in therapy, were still in CR, 138 were still alive five years after enrollment
- of 62 who failed to achieve CR, 9 died within the fourth year, and another 3 died within the fifth year -- 20% have died
- of 4 who achieved and lost CR, one died within the fourth year, and one within the fifth year

The first three years are excluded to ensure it includes only people who completed the three year total therapy program.

This is not a qualitative "what if" difference. This is stark. For those who fell short of CR -- including very specifically near-CR (one step above where I am) and VGPR -- there is a material difference in survival. Bear in mind, too, this is simply "overall survival." Not the true gold standard of "event free survival" -- since by definition anybody not in CR is living with an "event." IT TAKES SIX YEARS OF EVENT FREE SURVIVAL TO BE CONFIDENT THAT ONE IS CURED.

In the infusion center yesterday, I sat across from a woman who underwent a tandem transplant here three years ago. At that time, she had come in very ill, and didn't go through the full-blown Total Therapy program, but she did improve. She achieved a VGPR and went back to a smoldering state. And yet, here she is, three years later, undergoing more therapy. This is NOT where I want to be sitting in three years' time.

I do not believe in getting one transplant and waiting for the return of this beast. I do not believe in "the cure" or "the treatment" being worse than "the disease." The disease, unchecked, leads to death. The disease, absent the most aggressive therapy available, almost invariably leads to recurrence with reduced effectiveness of existing treatment (though to be sure, there is a lot in the pipeline and I do believe that within 10 years there should be a cure from these novel agents). The disease is far worse than anything that can be done to get rid of it.

Doctors who claim that VGPR is the same as CR have the burden of proving this point of view. And every one of them is completely colored by their bias that Total Therapy is not curative. The most they will say is that for a subset of patients, many undergoing the Arkansas protocol have done very well. But this turns a blind eye to the real, demonstrable accomplishments down here. And I think it is a false view.

I say this having had, I know, a very easy time with chemo relative to what many others experience, and relative to my own initial concerns. As I type this, the third of four days with this bag of poison is coming to a close and I've had no side effects, save the bloating from Dex which doesn't appear to be quite as bad as last time.

But I also say this having observed the preponderance of literature on dealing with transplants and how one's life "is never the same" and one will measure "a new birthday from the date of transplant." These statements, while 100% valid for those experiencing them, are part of what motivated me to write this blog. I approach it differently. I got sick. I have a range of available treatments. I chose the most aggressive one with the expectation -- and now perhaps hope, but still one grounded in data -- that I will be CURED, not simply treated. I refused from day two to let "nothing be the same" because that mentality already gives in to the disease. With a bit of luck, the continued efficacy of the treatment, and the care and support of my family, friends (including those who read this blog) and the fine doctors and nurses to whom I have entrusted my health, things will INDEED be very much the same. Except perhaps I'll be a little wiser, and perhaps I'll had have the chance, through my experiences and through sharing them here, to provide some perspective to others facing this diagnosis that may contribute a bit to the spectrum of information that is out there.

I love and appreciate you all.

Nick

What a difference a day makes (in labs)

This is something that hopefully everybody with this diagnosis -- or anybody looking at their blood on a daily basis for some other reason, God forbid -- can benefit from.

I went to the infusion center today to get my 24-hour chemo pump changed. Interestingly, looks like I get the Adriamycin for four days straight while they swap out the Platinum, Cyclophosphomide and Etoposide over that time period.

Anyhow...

I got my labs from YESTERDAY back today (I prefer the 7th floor way of doing things, but they get quicker response from the lab there) and my white counts fell from 6.8 to 4.4. My Hemoglobin fell from 14.2 to 12.2 (I told you I'd be back to anemia quickly!) and my platelets rose from 170 to 180. All expected.

By my Phosphorus was 1.5 (normal is 2.0 to 4.0). And my Uric acid, which the nurse in BB's clinic had flagged as high on 7/8 when it was 8.2, was now 8.7. BB didn't think anything of it being 8.2 but I wanted to at least ask my APN about it.

So I was prescribed a bag of Rasburicase administered IV while I waited, and given an infuser of phosphorus for the road.

While the Rasburicase was dripping in and my phosphorus infuser was hooked up, I got TODAY's labs back.

Uric acid fell to 6.2, well within normal limits, and Phosphorus was at 2.5, also well within normal limits. White count up to 11 (still normal, but what a change!) and hemoglobin at 12.2. Sigh. 14 felt good while it lasted -- for about 18 hours, it seems.

I asked the APN if we should disconnect the phosphorus (the Rasburicase was already fully infused by this time) and she said that the chemo will push uric acid up, and bring phosphorus down, so we were ending up taking prophylactic measures.

That's fine by me. But it does highlight how these numbers can pop up and down and you really need to look at them in context / over time to make sure you aren't overreacting one way or another!

Generally speaking I am feeling fine, other than being exhausted from no sleep last night, and the general dex bloating that has set in (five pounds of weight gain overnight). I also got the hiccups something fierce today, which happened when I was on these drugs before, so I took a couple of Baclofen and they seem to have subsided.

Lastly, for the benefit of my two brothers who read this and anybody else who is a fan of very, very old movies...I looked to my left in the infusion center and there is a woman, probably in her late 50s, who is completely bald and who must have felt cold (despite it being 90 degrees here now) and had draped blankets over her lap and pulled another tightly over her head like a shroud. I had to do a double take but she looked just like Eduardo Gianelli (the bad guy) in the 1939 Gunda Din.

Dinner with BB's assistant Bonnie tonight, then lunch with fellow MM travellers Phil and Cassie tomorrow, and then the arrival of my friend Matt from DC for what should be the last relief mission for Jill, as she goes home for the weekend to see the kiddies. Lots to look forward to -- though perhaps nothing more fervently than the result of tomorrow's M-spike lab, which should be available on Sunday or Monday.

Be well, everyone!

A glimpse of normalcy and other observations

Let me begin with observation #1, which I've made before. Ambien has nights were it works brilliantly (the night before this past one I got 8 solid hours despite having to sleep through a two hour long thunderstorm which was the loudest my wife, a veteran of 13 years in Houston, has ever heard). And there are nights when Ambien sucks, like the evening that I am just ending, where I slept for 20 minutes and finally gave up at 5AM.

I think the combination of the chemo pump, 25+ pills and the mind-crippling fear of crumbling to a constipated fetal position on the floor must have something to do with it. I am taking both Senna and Docusate. One is a softener, the other a laxative. I will keep with these this time and hope that nothing more exotic needs to be ingested to achieve the desired normalcy.

So...the glimpse of normalcy. When I went to the lab to be connected to the bag for day 1 of 4, and get a host of other things (Velcade injection #1 of 4, PAINFUL Lovenox shot #1 of 6, antinausea agents, etc.), they gave me my labs from yesterday. For the first time since we started looking closely at these things back in February, I was not anemic. I was still at the very low end of the normal range (14-19) on Hemoglobin but I was 14.2. Now, this will be clobbered by the chemo again, but I was asking Dr. SH in Beverly Hills a few weeks ago, when it was 12.2 or so, if it was ever going to be normal again and he said "eventually, once all this chemo stops, it will have a chance to recover." So it ultimately recovered in three more weeks. One of the concerns about BB's program, voiced by KA, was that there is so much marrow-mangling being done that I might not be able to sustain normal counts when it's all said and done. BB of course said this was no problem and that they had never seen it happen, which is what KA said he would say. "But I", added KA, "am a just a quiet little voice on the sidelines whispering 'maybe it might be a problem.'"

KA and BB have a lot of mutual respect for each other and have known each other for a long time, so this was said without any professional jealousy or sniping or anything like that. In fact KA is well aware of the success of the program down here and agreed with my basic logic to pursue it.

ANYHOW...gosh what was supposed to be a quick update is getting long...so my Hemoglobin was more or less normal, and my IgG, IgA and IgM (all immune system markers which are intentionally suppressed by the medication) have returned to normal levels. IgG contains both GOOD immunoglobin from my normally functioning plasma cells as well as tainted immunoglobin from my evil, corrupt Myeloma cells. So we have brought this down from what seems, now, like an impossibly high level of 16000 to around 580, but normal is 700-1400. So getting to 800 on this last lab, particularly with a bone marrow that has no cancer in it, is good. Lastly, RDW, which measures the variability in size of red blood cells and is higher than normal in cancer patients, has almost fallen to normal levels. All good stuff.

Of course this all goes out the window now, since I started taking poison yesterday morning. But it was good to see normalcy in my blood counts for once!

All the markers are good except for two liver markers -- one of which has little-to-no correspondence to alcohol, and one of which does so it could have been elevated somewhat by the previous night's meal with BB and his wife. I had forgotten that I had a gin and tonic with the good doctor after our meal (after all, I don't want to beat cancer only to be taken down with scurvy or malaria). Evidently hematologists during the British Raj didn't look to closely at liver enzymes. At any rate, one of the three booze-related enzymes was elevated (the other two were normal) and this could be a result of the chemo, the velcade, the Fluconazole / anti fungal med, or anything else, really. The other elevated enzyme, LH, is more problematic as that is a surrogate for cancer activity. I don't want to be concerned about any single test, as my liver is still processing dead cancer and getting rid of it through the body and will continue to do so during the consolidation phase, and this aspect of my biology results in a higher LDH. But it is something that I want to keep my eye on. For the budding hematologists in the crowd, it was 280 and really needs to be below 190 to not be an unfavorable indicator of long-term prognosis.

On that topic:

* Things I have going for me according to the statistical analysis: I'm under 65, I had and have preserved Albumin (good blood protein that gets crowded out by evil blood protein when immunoglobins get out of control), low Beta-2 Microglobin (a tumor marker), low CRP (a surrogate for cancer, I found out just yesterday, in addition to general inflammation), low creatinine (meaning good kidney function), low LDH at start of therapy, no severe cytogenic abnormalities (i.e. 4;14 translocation, etc.), low risk defined by Gene Expression Profiling (GEP), and hyperdiploid subtype (this means my cells has too MANY chromosomes, rather than too FEW, which would then be hypodiploid.)

* Things I don't have going for me: only one...in addition to being in the hyperdiploid subtype, I am in the more dangerous proliferation subtype. This means that the cancer is prone to proliferation (there's a shocker to those of you with zero inductive reasoning skills). It grows at a fast rate. This we know both from the visceral predictions of Dr. SH way back when ("the fact that you got this when you're young means your system isn't good at getting rid of it, and I expect it will progress fairly quickly") and it has been borne out by the rapid growth of my protein and M-spike, which went from 8.0 and 4.4 and the time of diagnosis to highs of 12.2 and 8.0 in four months. I of course asked BB about the impact of being in the PR subgroup and he said that being low risk overcomes this. However having studied the statistical model I'm not certain that's true. It does have a very low "P-value" (.001 for those following along with a statistics handbook) which means that the certainty of its impact on survival rate is very low. For example, other factors are typically .15, .35, etc meaning they have a 15% of 35% likelihood of impacting the survival rate. The impact itself on survival rate for those which have the PR subtype -- including high risk patients (and here the data is not parsed by high-risk versus low-risk) -- is not good, but the likelihood of that impact is anything but certain.

* BB pointed out that achieving CR early is important, however he also pointed out that when someone has smoldering or indolent MM, or MGUS (which mine could have been for a long time for all we know) it doesn't matter. We must remember my excellent primary care physician hadn't seen me for 18 months. And before that, the only marker he would have been able to look at would be total protein. As my MM was coexisting with my regular immune system (thus permitting normal blood counts), and my albumin was preserved, I could have had a small M-spike for five years without anybody noticing. As SH said in my first meeting with him "we have no idea how long you've had this."

All of this devolves into a statement and a graph. The statement, which I reiterated before, is that I MUST REACH COMPLETE REMISSION. I would like to specifically acknowledge Lori for her very positive comment in my last post, and again I want to thank all of you for reading, writing, and expressing encouragement through comments and emails. I still think the best thing I can bring to this whole process is a positive attitude and any time I feel that flagging, you are always there to provide a bottomless wellspring from which I can replenish it. I really love and appreciate you all.

The graph itself is something I kinda wish I could post here but it is (a) difficult to reproduce, and (b) not yet published in Blood magazine so I don't want to run afoul of BB's work here. Suffice to say, that data runs on TT3 for five years from enrollment now. Remember, if the disease is gone for six years, it's very unlikely to EVER return, without meds, according to BB's data and the history of childhook leukemia total therapy upon which his work is based. So with this in mind, understand:

* Of patients achieving and sustaining remission, 100% are still alive after five years. To put this in contrast, the American Cancer Society published in the last month five year survival statistics of 34%.

* Of patients NOT achieving complete remission, 80% are still alive after five years. That 20% is too high for my liking.

* Patients that achieve and LOSE complete remission (the majority of high-risk patients according to GEP, unfortunately) have only a 50% survival after five years. However, that's still better than 34%.

What is complete remission? What is not complete remission? This brings me to the last observation of what was supposed to be a brief update but which has turned into a monster post.

I'm working from a combination of work from BB and from BD (one of my early consults and the person behind the original staging system for the disease, who was a very nice guy, by the way).

Stringent Complete Remission (sCR) -- CR as defined below plus normal free light chains (I have these), absence of clonal (M-spike) clones in bone marrow under immunofixation and immunofluorescence (I have this, I *THINK* -- not sure if BB uses sCR as a definition as I've only seen it in BD's work)

CR -- No M-spike under immunofixation or serum eletcrophoresis (not there yet), disappearance of any soft tissue plamacytomas (I think I am there) and less than 5% plasma cells in bone marrow (I am 2-3% plasma cells in core bone marrow, so I am there).

nCR -- As CR but with no M-spike under serum electrophoresis (not there yet) but presence under immunofixation.

Very Good Partial Remission -- serum and urine M-protein detectable by immunofixation but not on electrophoresis (not there yet) OR 90% or greater reduction in serum M-protein plus urine M-protein level less than 100mg per 24 hr. I am here now.

Beyond that we get to Partial Response and Progressive Disease, which aren't a large portion of patients, and of course do drag down survival statistics of those unable to achieve CR.

So we know what I need to do. Get rid of that damn M-spike forever. Which is why I've got this bag of four different kinds of mustard gas hooked up to me. And I know it is working, because my taste buds are dying off. I can't taste any subtlety in food, and everything is starting to become metallic. This sucks from a culinary standpoint, but it means rapidly-dividing cells are being killed, and that means myeloma cells are being killed, and that means there will be fewer around to make protein, and the whole shebang should contribute to a very inhospitable environment in my bone marrow for these bastards, so we should consolidate our gains there (hence consolidation treatment, again for the inductive reasoning impaired, or those who hadn't noticed that it had been a couple of post since I used the formal term Consolidation Therapy for this last round).

Almost done here, except for a couple of more BB answers and a funny little quote.

* I had mentioned it's impossible to tell how much of my remission is caused by which phase of my treatment because they are all acting synergistically. Most other protocols wouldn't do the second step of the protocol until the first step is done. But during this intermission, the cancer has time to regroup, even with some modest bridging therapy. BB's approach is always predicated on attacking the cancer relentlessly and staying on top of it until it is gone, gone, gone (hopefully forever). So that's why he doesn't want to take stock mid-protocol. The best way for this not to matter is for me to zero-out the remaining M-protein during this first cycle of consolidation, so that's what we'll shoot for.

* I had mentioned that other doctors would put me on Thal / Dex or Vel / Thal / Dex up front to achieve remission, and then use the transplants to consolidate gains once remission is achieved. BB's protocol is different in two ways: he spends less time in induction up front (although he uses many more drugs), and uses the transplants as active therapy in conjuction with velcade, thal and dex which he believes have synergistic elements with the high-dose melphalan, especially in the "lite" protocol where they have four days to help each other fight the Myeloma. By lingering in induction, it gives the MM cells time to develop drug resistance to Thal / Dex and Velcade. If one is on that cocktail for 6-9 months, that's a long time to develop resistance before relying upon them not just for synergistic benefits during the transplants, but also for bridging and for consolidation treatment.

That should do it except for the quote. It's another glimpse into why I like him so much. When we were at dinner with him and his wife, his wife suggested that we try a place called Jimmy's Serious Sandwiches. I love a good sandwich for lunch but as I'll be neutropenic in a few days, I asked the doctor if it was okay for me to eat. He said (direct quote to reflect his humor, directness and irreverance, with apologies to any offended among you): "Awwww...that stuff is all bullshit. It's bullshit! Half the people who get sick probably get it from following those rules too closely. Eat what you want."

I'm not sure I'll go quite that far -- I've done quite well following the rules -- but it does mean on days when I'm marginal and am really craving a type of food, I will go for it as long as it's not completely filthy.

Okay...that's it, I promise. There you have it, faithful readers. Be well, and more news as it becomes available.

Mixed news, mostly good, I suppose...

Okay. We spent a LONG time in the clinic today, but ultimately spent a good hour or so with BB and learned some important things. On balance, this was a good checkup, although I am not in CR and we have established that CR is an important goal, not just something that doesn't matter.

1. MY BONE MARROW IS NOW NORMAL. That's the bulk of the good news. There's no abnormality in the marrow any more. Plasma cells, which used to be 70%-80% of the marrow, are now 2-3%. The plasma cells that they examined have no abnormalities, unlike the previous marrow exam on May 19.

2. My M-spike is 0.5 according to the clinic here, which doesn't surprise me too much as it's always higher here than in Los Angeles. However I was at 0.4 when I left, and am now 0.5 despite bridging. BB told me very specifically not to be concerned with this fluctuation. It's a low level of M-protein, there are fluctuations from test to test, the test itself has a margin of error, etc.

3. My PET scan shows no focal lesions, and 100+ areas of involvement still. They are generally unchanged from the last scan, although some are beginning to reduce in size (e.g. one went from 1.6 cm in size to 1.5 cm in size; the largest one went from 3 cm in size to 2.8-2.9 cm in size, etc.)

4. My MRI shows essentially the same level of involvement as last time, on or around May 19th. There is involvement in about sixteen vertebrae, which explains the pain in my back. Nothing is getting any worse, on the margin things may be improving but it's very slow improvement.

5. There are no results back from the Fine Needle Aspiration yet.

6. My uric acid was mildly elevated on the 7/8 lab draw (it was 8.2). The nurse saw this and had me draw more blood today, which wasn't back yet when BB saw me. BB asked her why she bothered. She said "his uric acid was 8.2." BB said "that's because he and I had dinner last night!" For the record, I had two small crabcakes, a 10 oz filet, a small amount of rice, and two glasses of white wine.

I asked BB the questions from the other day. The salient answers are:

* There is no biological difference in attaining CR during transplant versus during consolidation versus during maintenance

* There is a definite connection between achieving CR and positive long-term prognosis. In other words, if I don't achieve CR, I have a lower likelihood of a positive long-term prognosis. This connection is not as strong as the connection between LOSING CR and long-term prognosis. If one achieve CR and then loses it, one is pretty much screwed. This is a real problem with high-risk disease. Sustaining remission in low-risk disease is easier (about 85%-90% of people are able to do so versus more like 20%-30% in high-risk disease). I have low-risk disease, for those who may not recall. I can get more specific in this area but it has to do with hard-core statistics and terms like multivariate Cox regressions, hazard rates and P-tests (the other kind of P-test that doesn't involve a jug).

* I have been in therapy for four and a half months. The MEDIAN point of time to 99% elimination of M-protein among Total Therapy 3 participants with low-risk disease is about six months. That means that at start of therapy plus six months, the 50th person out of 100 in the TT3 population eliminated 99% of M-protein. TT3 is essentially the standard (as opposed to the lite) arm of TT4, in which I am enrolled. In addition to being in the lite arm, I had a quick recovery from my transplants. Thus, I have received both transplants in this period of time, whereas more people in TT3 hadn't received their second transplant at six months. On the margin, this isn't great -- my 4.5 months would translate to something longer than 6 months adjusting for the nature of the treatment. Having said that, the median is just one number among many -- as Stephen Jay Gould said, "the median is not the message." A full understanding of this comment may or may not require knowledge of Mr. Gould but does require familiarity with Marshall McLuhan in order to get the pun. Which isn't really worth the time.

* If one has low-risk disease and one IS going to achieve CR, one will generally do so within 8-12 months from the onset of treatment.

* There is no way to tell how much of what is going on in me is from the transplants versus from consolidation treatment, so it will be too early to see what happens after one cycle of consolidation. BB will assess me after I've gone through consolidation and we will take it from there. He doesn't yet see a reason to be alarmed. He reiterated that for 95% of people there will be no difference in outcome between the lite and standard arms. Obviously, I don't want to be in that 5% but he didn't think there was any reason to be concerned at this point.

I threw in a bonus question about my back, asking how long it would take for the lesions to go away and for the fractures to heal. He said about eight and a half months, and then winked and kicked me in the foot, because that degree of precision is impossible. But it does give me an indication of when I can expect to see full alleviation of the symptoms in my back. Hopefully I can get back to some activity (i.e. golf) long before then. I need to make a mental note to ask him how much activity my back can tolerate.

Well...that's about it. The bottom line is clear: I MUST ACHIEVE COMPLETE REMISSION.

Nothing else is an option.

I still believe I will get there, but it is hard sometimes. What should be spectacularly good news about my bone marrow has been completely trumped by the presence of that M-spike.

I was just starting to come out of my funk when we were watching the show Intervention on A&E. It documents people that are addicted and efforts on the part of their family and friends to get them to stop. Tonight's episode focused on a highly-functioning alcoholic (meaning he was an alcoholic but it didn't affect his ability to do his job, live his life, etc.) and it was very difficult to get him to seek treatment. His two young children had to say they'd never see him again, etc. and they finally forced him.

He was sober for 80 days in treatment when he was diagnosed with advanced esophogeal cancer. He was dead three weeks later. The show ended with his nine year old son crying and saying at least his dad died sober.

This wasn't what I needed to see this evening.

Anyhow...tomorrow I start consolidation. Dex, Thalidomide, Velcade, and 75% of the four nasty chemo agents from induction. I'll be hooked up to that irritating pump that will administer these four agents (Cisplatin, Adriamycin, Cyclophosmomide and Etoposide) over a 24 hour period, and I'll go back in for four days to have it changed. I'll also have daily Lovinox injections to ensure that I don't get blod clots from the thalidomide and dex, and then once I become Neutropenic (hopefully the last time ever in my life) I will get those lovely Neupogen injections again. Plus I'll take supportive meds (Levaquin, Fluconazole, Acyclovir, Protonix and the two anti-constipation agents which I will CERTAINLY take to avoid what happened last time).

One more unto the breach, dear friends.

Weekend visit...

So Jill and I were getting a bit stir crazy around here and we decided to go away for a couple of days to a nearby city...we'll call it Schmemphis to protect those that live there.

We'd been there once before and I actually liked it. I find this curious now, considering I wasn't on any serious drugs at the time. Perhaps the ongoing economic downturn has really taken a toll over the last six months...or perhaps I am now subconsciously aware that Schmemphis is the violent crime capital of the United States...but whatever the reason, I can now charitably describe Schmemphis as an absolute pit.

On a goof, we drove by...uh...Schmaceland just to see what the fuss was about. Every stereotype of the people that make pilgrimages to this place appears to be true -- albeit from the window of a passing car about 100 yards away.

As Jill said, "if that guy hadn't died on a toilet here, there wouldn't even be a city." Hard to argue the point. Although we did have a very nice dinner last night.

Of note, there were many headlines about a decade ago about the West Schmemphis Three, some adolescents accused of a murder. Having driven through West Schmemphis now, I can say without a doubt that they are innocent. Any and all unnatural deaths in West Schmemphis must be the result of suicide given the absolute despair that must set it if one lives there.

Observed on the road between our current digs and Schmemphis: a large (VERY large) billboard saying "USE THE ROD ON YOUR CHILDREN AND SAVE THEIR LIVES!!!!!" with the appropriate Biblical citation beneath it.

That's right, people! Beat your kids senseless and knock 'em straight into heaven!

Jesus is rolling His eyes.

We plan on having dinner this evening with BB and his lovely wife so I will hopefully have something a bit more upbeat to report!

A chip in the Chinese Wall...and other stories...

So yesterday was the Fine Needle Aspiration of the tumor deep in my right hip, along with ANOTHER bone marrow biopsy (which I had hoped could be done with the same hole but no, of course not, it wound up being in my left hip, which now means my butt is killing me no matter how I try to sit down).

I went to the hospital at 7AM for an 8AM procedure, ready for bear. At the slightest indication that they weren't going to properly anesthetize me, I was going to get up and walk out. I was taken back into pre-op, where I put on a fetching gown opening at the back, and laid down on the gurney. I spoke with the admitting nurse and she indicated that I was going to be given sedation, and I made sure that it was Propofol in addition to Versed, and she said that was the case. So far, so good.

So now, I waited for what seemed likely to be an inevitable and perhaps poetic reunion with Dr. CAH (not his real name or initials), who some readers may recall was thoughtful enough to interject his personal religious observations in a conversation before beginning a surgical procedure on me. The door cracked open and I was ready to greet him with a smile and hope that he'd forgotten the whole incident.

Instead, a very nice young lady came in and after asking me my name, introduced herself as a secretary. She said she had been doing some research...and asked if I wrote a blog.

Gulp.

"Yes, I do write a blog...and come to think of it I had some less than pleasant things to say about Dr. RVH so I'm sorry -- "

Fortunately, she cut me off and said it was no problem, that she enjoyed reading the blog and found it helpful, and that she was reading it on the down-low. All good news. :) If you're reading this right now, HELLO and congratulations again on your engagement!

Anyhow, with that near-scare out of the way, the usual parade of anesthesiologists, nurses and assistants came through, along with the doctor that would be performing the FNA, a nice woman whose name I have forgotten. CAH must have been out sprucing up the billboads between here and Schmemphis. Anyhow, she explained that the PET scan indicated there was no longer a lesion in the hip, and that there were no "hot spots" that she could read -- although the hastened to add that she isn't qualified to read a PET scan. She said there were several "warm spots" but nothing that looked like a full-blown focal lesion. She said the MRI indicated there was still a hole in the bone where the lesion used to be (I wondered to myself if this was from the previous FNA!) so she would still be taking marrow from that area. This seemed fine to me as BB clearly wanted to monitor the change in that one spot.

Obviously, the initial read of the PET scan is a positive, so I'm happy about that.

Anyhow, it all went as it should have. I got wheeled into the CT room, rolled off the comfortable stretcher on to an uncomfortable CT bed on my stomach, and fell asleep. I woke up in the recovery room, fairly groggy but not in much pain. After 30 minutes, we were ready to leave. The nurse offered me the choice of a Vicodin or a Percocet. Vicodin doesn't do anything for me (I'm resistant, I think, to opiates which is why it required the really nasty stuff to cut the pain when I was in the hospital back in March) so I went for the Percocet because I'd never had it before. It was like trying another flavor at Baskin Robbins, I suppose.

Anyhow it worked pretty well. We had lunch at our favorite Mexican place, and then went home to crash for a few hours. We had a pretty nice dinner and then bumped into BB at the restaurant in our condo lobby. He patted my belly a few times (HE's the one that put me on he Dex, dammit!) and gave Jill a hug. He commented that my hair was coming back, which it is -- although as I have remarked to a few people, I am one hockey mask away from being Jason Voorhees.



Anyhow, I asked BB if my hair was going to fall back out and he said "probably not."

That's good, I suppose...except of course it raises the question again of "am I getting enough poison?"

All in all, mixed signals, mostly good, I suppose -- PET scan shows the treatment is working, hair may stay (who cares in the grand scheme of things), hopefully next phase of treatment gets rid of the remaining Myeloma. We shall see.

In any case, the Chinese Wall has a crack in it. I'm counting on the nice secretary in Interventional Radiology to keep this between us! :)

Four hours in tubes, a conversation with SF and other stories...

So it was quite a day for tests. We picked up our packet of information at 11, went to get my blood drawn and my dressing changed where they still had my old orders from post-transplant (asking them to do peripheral sticks to run obscure anti-viral cultures that I don't need since I have an immune system again). I explained they didn't need to do that and they eventually go it.

Then we ran over to the MRI, where we waited for 30 minutes and then I was slid into the tube for two full hours. My God is that boring. I popped an Ativan in the vain hope it would let me sleep a bit but it's hard do with the endless BEEP BEEP BEEP BLAM BLAM BLAM CLACK CLACK CLACK going on at 10db past the threshold of pain all around your head. I need to do some research on the sonics of magnetic resonance imaging because I can't understand why the BEEP BEEP BEEP needs to happen. CLACK CLACK CLACK I could rationalize as the magnets being spun around on a track, but BEEP BEEP BEEP?

Anyhow, after we got out of there, we ran off to the clinic for my pre-anesthesia consult. I reiterated that if they don't show up with the right kind of drugs, I am outta there. BB's assistant seemed preoccupied so he didn't say much, but I'm ready for bear if the Faith Healer shows up without the Propofol.

Then it was off to the PET scan. I always love these. Locked in a lead chamber, the woman enters with a lead thermos, says "this won't do anything to you" then removes a syringe from the thermos with tongs, injects it into me, flushes it out with water and runs for the hills, closing the lead door behind her. :)

After stewing in radioactive juices for about 40 minutes, it was back to the PET scan. I think I dozed off a bit on this one -- it's not nearly as noisy.

Jill and I went to get some sushi and now we are tired out, ready to hit the hay. The bone marrow work is being done at 8AM and we need to be there by 7, so it's going to be early to bed and early to rise.

I did speak briefly with Dr. SF this evening. Highlights:

* VTD in induction achieves CR in about 70% of patients, which is better than it used to be.

* He doesn't know that fractionated Melphalan is any less strong than regular Melphalan, so that's probably not the root of the issue.

* He isn't sure if, at this point, CR will be achieved with one round of consolidation, one round plus maintenance, two rounds, two rounds plus maintenance, or maintenenace only. Or, in fact, if it isn't going to be achieved at all, which he agrees would be a disappointment given that I don't want to control the disease but rather to get rid of it.

* He agrees that the right questions for BB are the ones I have outlined.

So...there you have it. More news as it becomes available.

Back in Little Rock with renewed resolve...

I returned to Little Rock yesterday afternoon following four weeks or so in Los Angeles. The culture shock was palpable.

Nonetheless, weather here yesterday was nice (87 degrees, not too humid, sunny) and we are supposedly in for another day or two of that before the dewpoint goes haywire and the heat index takes off. By that time, hopefully, I'll be spending most of my time indoors.

Before reporting on Little Rock, though, I wanted to share some exasperation at trying to get lab results out of SH's office. Mind you, I last had blood drawn there on June 30th -- a week ago. I had called on Monday of this week, so six days after the blood draw, and left a message asking specifically for the M-spike, and saying that if I couldn't be reached on my cell phone, try my home phone, and if you have to leave a message, please just leave the M-spike data.

My cell phone had died by the time the woman called Monday night at 6:30. The message, which I retrieved early Tuesday, said "I'm returning your call. It's 6:30. I'll be here for two more minutes. Otherwise we can talk tomorrow." No mention of the data.

So I called the next day -- yesterday -- and left a detailed message, saying that I was travelling and my phone would likely not be on, but PLEASE leave the M-spike data. I landed in Dallas and checked voicemail as we were waiting for our flight to Little Rock. I had a message. "All your data is normal. Have a good day." I was ready to put my head through the plate glass window of the airport tram. I called back "I NEED, TO TWO SIGNIFICANT DIGITS, THE M-SPIKE DATA TO COMPARE IT WITH PREVIOUS FIGURES OF .27, .29, .32 and .30. PLEASE GIVE ME THE DATA TO THE HUNDREDTH OF A POINT."

FINALLY they called back. 0.32. Now, leaving aside that this ISN'T normal...why did it take so long for them to simply respond to my question? Grrrr....

Anyhow, although I hoped for some 11th hour improvement, the fact remains that I stopped responding to this transplant (or rather, received the full benefit of it) about a week after receiving it. Which brings us to where we are now: heading into consolidation with residual M-spike of 0.3 or thereabouts.

We ran into BB's wife and son at dinner last night -- BB himself is in Ann Arbor for some reason. We will likely all have dinner this weekend once they get their schedule worked out. I explained my concern over my remaining M-protein to BB's wife but what it boils down to is this: I responded to induction, so there's no reason to believe I won't respond to consolidation. I only have a little protein to eradicate. If I need a second cycle to eradicate it, then we'll do a second cycle to eradicate it. And if THAT doesn't do it, then I'll still have maintenance, although BB's wife seemed to agree that it would be better to have it gone before beginning maintenance therapy.

My first round of induction took it the M-spike from 8 to 4. All I need is to get from 0.3 to 0.0. They (well, one of the APNs -- who presided over my first transplant) say it's considered a success if a given round of treatment reduces the M-spike by 50% or more. So 8 to 4 was a success. My first transplant took it from 4 to 0.7 -- a tremendous success. The second transplant from 0.7 to 0.3. At least 50%. So if one cycle of induction takes it to .15, and another takes it to 0.07, that gets pretty close, and that's the least meaningful response I would expect.

I go back to what Dr. EA, a colleague of BB, told me when I was in the hospital: the response of the tumors as shown on the first post-Velcade pet scan was exactly what they hoped to see, and was consistent with a very good long-term prognosis. There's no reason I shouldn't get into remission. I just need to get myself there by hook or crook.

Today I pick up my scheduling packet, get blood drawn (huzzah!) at the infusion center where I can get a full set of labs (and results in less than a week!) and then tonight another PET scan. Tomorrow will be bone marrow and fine needle aspiration from the religious extremist. Unless he's out planning the bombing of a Planned Parenthood clinic somewhere.

More news as it becomes available. And thanks for taking a break from watching the non-stop coverage of Michael Jackson's funeral to check in! :)

Good enough for Michael Jackson...plus some questions

So it's all over the news. Michael Jackson was allegedly taking Propofol for insomnia, of all things. This is the drug that they damn well better be giving me before the FNA and the bone marrow next week. If I am lying on the gurney getting ready to be wheeled in to the interventional radiology room with that snake handling maniac doctor, and they aren't going to give me Propofol, I will get up and walk out, it's as simple as that.

Meanwhile, I've been compiling some questions for BB (some of which I will also ask SF, in the odd chance that I get the opportunity to speak with him before going back to Arkansas).

1. My understanding is that the success rate of getting people into complete remission using thalidomide and dex for several cycles is quite high; adding Velcade to the mix should make it even higher -- perhaps close to 100%. Should I not have undergone more induction and thus put myself into remission, or close to it, BEFORE the transplants? If not, why not? What is the rationale for doing the transplants BEFORE the best possible reaction from induction therapy is reached?

2. Since it is better to achieve CR than not (there can be no such thing as "event free survival" when I have an ongoing event), given that I responded to induction, with the benefit of hindsight would I not have fared better with a second cycle of induction? [This question is close to the first one but gets directly at the potential shortcoming of the Lite arm of TT4)

3. If I do achieve CR now, given that I've already had the transplants (versus having them after remission has been achieved), is my CR less quality than would have been the case? Other doctors have described the transplant as a means of eradicating any cells left over after induction has created remission. Obviously in Arkansas the transplants are used as part of active therapy, not consolidation. What is the biological benefit to this?

4. If I respond to consolidation but I do not yet reach complete remission, can I get a second cycle of consolidation? If not, why not?

5. Of those enrolled in TT3, how many achieved remission AFTER consolidation? And how is their event free survival rate and sustainability of remission relative to those who achieved CR BEFORE consolidation?

6. Of those enrolled in TT4, how many achieved CR in the lite branch versus the standard branch?

It's hard to imagine answers to these questions that would put me at ease, frankly. But BB is a confident person, to say the least. Listening to my initial consult with him again, it reminded me of why I went there. I asked him "what's the typical treatment plan for a recurrence" and his response was "the likelihood of recurrence is so small, we don't have a typical program."

So perhaps he can answer the questions above very clearly and confidently...we shall see.

I called SH's office to try to get my results of this past Tuesday's blood tests, but they are closed for the holiday. So I shall have to wait until Monday to find out if my M-spike stayed at 0.3. And then on Tuesday, it's back to Arkansas. More news as it becomes available.

A number of updates...

Hello folks.

It's high time for an update, for a number of reasons...not the least of which is that the image of a poor possessed Linda Blair violently throwing up isn't the most welcoming thing to see on a webpage, so the addition of new material should cause it to scroll down a bit and not be quite as immediately off-putting.

First, I want to say a thing or two about me feeling sorry for myself. :)

The fact is, I *do* feel sorry for myself for reasons which we'll get to in a moment. But I also feel guilty about feeling sorry for myself. I know that I got a bum deal getting this disease, but I also know that many others -- including some that follow this blog -- have had this disease longer and/or in a more challenging manifestation than I do. So in feeling sorry for myself, I want to acknowledge that others have it even worse than I do. I haven't lost sight of that.

Nonetheless, my primary goal in this blog is to be accurate and honest -- I want those who haven't yet gone through what I've gone through to have my unvarnished feelings because if this blog is to be of service to anybody, honest and transparency are paramount. And the honest truth is, I am angry that I'm not in remission, and I'm very, very concerned.

I spent a couple of hours yesterday listening to my diagnosis conversation with SH, and to my first consult with BB (before my bone marrow had been done) and my second consult with him (after it had been done). Two comments they made contributed to my current feelings.

* SH noted that depending on the study, the simple combination of thalidomide and dex, which is what he would have put me on for induction, has achieved COMPLETE remission in 70% to 90% of the cases! It's funny now to hear him explain all these terms and medicines which were so foreign at the time, yet which are now second nature. Revlimid, Prednisone, Dex, Melphalan...they were all nonsense words at the time. But the point is...even WITHOUT Velcade I stood a 70% to 90% chance of COMPLETE remission, not this crappy "very good partial response" in which I find myself mired.

* BB noted that those who achieve CR in Total Therapy have a better long-term prognosis than those who do not.

I am pissed off that I am not in complete remission, and I believe that it could be because I randomized into the Lite protocol which has only one cycle of induction rather than two. I am concerned that I am going to be the proof point that the Lite protocol isn't as good as the standard protocol. And now it's too damn late to do anything about it. Other than perhaps ask for two rounds of consolidation...if that's not too late to make a difference.

I shared some of my feelings with Bonnie, BB's assistant. I asked her if I was going to rely on VRD (Velcade, Revlimid, and Dex) in maintenance to get me into CR, shouldn't I have been on this to get into remission, and THEN had the transplants...since this is what most doctors would do. She said that "[there is] not a need ever to have a remission before doing transplants. That isn’t logical scientifically. Have [BB] give you the words. If mvdtpace didn’t get you in the CR club than throwing VRD et al on the wound would not have been a better approach."

Well...maybe. Except that M-VDT-PACE, which I had, could have been repeated (as it is in the standard branch). A longer induction period would surely have gotten me closer to complete remission than was the case. One period of induction was enough to bring my M-protein down from around 8 to around 4. The first transplant took it from 4 to 0.7. What if a second cycle of induction, which would have been the norm in the Standard arm, had been administered and I went into the transplant with an M-spike of 2? For that matter, what if I'd had the more concentrated high-dose Melphalan?

What if? What if? What if?

So now, I'm concerned that I will not reach CR -- or that if I do, it will be as a result of maintenance therapy, and that I won't have received enough poison to keep the disease away.

Which brings me to my next semi-depressing observation. What should have been a hopeful presentation by Dr. KA (remember him?) to the Multiple Myeloma Research Foundation was instead depressing. KA showed a slide of a typical patient whose M-spike rapidly goes to zero, and then a new means of measuring myeloma activity which takes much longer to go away. Getting the M-spike to zero was discarded like it was a given. And here I am, unable to get there...much less achieve the more stringent definition of complete remission based on the new way of measuring the disease (which is more accurate than the immunofixation test).

KA did speak about several new types of drugs coming out, most of which I've written about here. Carfilzomib (next generation Velcade) has been shown to succeed where Velcade has failed. Similarly, Pomalidomide (next generation Revlimid) has been shown to succeed where Revlimid has failed. Heat shock proteins and HDAC inhibitors are two other classes of drugs that hold a lot of promise.

But I wasn't supposed to need any of that crap. I didn't come to Arkansas to get TREATED. I came to Arkansas to be CURED.

And that cure is looking more and more elusive.

I don't really know where to take it from here. I suppose there is still some chance that the M-spike could continue to fall, although I've now had four readings: 0.27, 0.29, 0.32 and 0.30. It's hard to be more consistent than that. I'm sure the consolidation treatment will take it down further. Whether or not it goes to zero from consolidation I'm not sure. If it does, then great, I suppose. If not, perhaps I'll get a second cycle of consolidation? Which I'm sure BB might try to resist since that would remove me and my precious data from his study. I would need to go "off protocol." But if that's what it takes, then I will insist on it.

I'm going to try to talk with Dr. SF about all of this before I return to BB's shop next week. I'm going to have a very frank and difficult conversation with BB, and I want to be armed with everything (i.e. the success rate of several cycles of VTD in induction, for example) before doing so. I also want to make sure my logic isn't flawed.

But I don't think it is.

Anyhow...more news as it becomes available. To those of you in the US, have a great 4th of July!

A visit from the Noonday Devil

Interesting turn of phrase, right? I always wondered what set the Noonday Devil apart from other devils. I remember it was one of the particular things that Max Von Sydow was hoping to rid poor little Linda Blair of.



Speaking of which...possible side effects of Melphalan shown below.



Anyhow...back to the Noonday Devil.

Turns out that per Augustine, the Noonday Devil, as distinct from other devils, shows up at particular times to make us doubt that "it's all worth it." It's a sadness that sets in...a certain defeatism that targets us when we're getting a little weary of the burden.

Well the Noonday Devil has been paddling my ass most of the day.

I got my results back from last week's labs. 0.3g/dl. I have hit the wall definitively in terms of progress.

Not much else to say, really. My question remains as I identified it last week: if I'm relying on VRD to get remission shouldn't I have been on this in the first place, with transplants (tandem or otherwise) AFTER achieving remission, and then maintenance?

To use another acronym, rather than use VTD-PACE or VRD...how about WTF?

The question is one only BB can answer. Until then, I'll try to keep the Noonday Devil at bay.

A visit with Dr. SH, or "stepping outside BB's world for a moment."

In addition to having my blood drawn yesterday, I spoke with Dr. SH, the hematologist / oncologist in Beverly Hills who diagnosed me back in November.

First, I have definitely hit a plateau. The M-spike on my draw last Friday (the 9th) was .32, to go along with .29 the time before and .27 the time before that. SH said these figures are "too low to be of consequence" and that they were all within the margin of error and that it would be impossible to interpret them as rising from this data, so I'm going to assume I am at 0.3 and that is that for this round of treatment.

It does piss me off that I went through a second transplant and only went from 0.7 to 0.3. I expected more. Still, I have a round of consolidation therapy, and then three years of velcade, revlimid and dex. Considering VRD is what most doctors give to people to get them into remission BEFORE a transplant, I'm sure it will get me there. I need to ask BB about the biology behind the difference of the two paths:

Path 1: VRD to achieve remission, then a single transplant to consolidate the gains, ends in no traces of the disease with maintenance therapy.

Path 2: VTD-PACE to reduce cancer, then two transplants, then consolidation therapy, then some amount of VRD to get to remission extending into maintenance therapy, ends in no traces of the disease with maintenance therapy.

I guess what I'm saying is, does the manner in which remission achieved impact biology and if so, how and why? I've always rationalized that I would rather achieve remission early through the powerful "kitchen sink" stuff that BB throws at me, and then have the traditional maintenance as "icing on the cake" so to speak. But it seems I'm not going to get there. It seems increasingly likely that I will need VRD to achieve complete remission (I still refuse to accept the notion that I might not achieve it at all) and if that's the case, why would it not have been better to use VRD pre-transplant followed by double-transplant? In other words, why isn't induction longer under Total Therapy? This is a series of questions that likely has a very long and clinical answer, but I am eager for it. I'll have to ask BB when I see him on the 13th of July.

Now...to SH's comments. Bear in mind, he does not approve of BB's protocol. He thinks it is overkill (both from a chemo standpoint and from a testing standpoint) and that the quality of life caused by the treatment is a real problem. Now, I've made it through pretty damn well, but SH was still saying things like "you have to consider the possibility of leukemia from all this chemo later in life." BB has 15 years of data and said that he's not seen a single episode of late-term leukemia from total therapy, so I'm not worried about that.

Basically:

* I have achieved very good partial response. Without seeing one of the bone marrows, it's impossible for SH to say, but I am "probably in remission." We discussed the nature of remission. In some patients with Chronic Myelogenous Leukemia, they might live to be 85 and die of something else, but there could be leukemic cells in their marrow. Are they in remission (prior to their death, of course)? If not, does it matter? It becomes an intellectual exercise, SH says. I told SH I would feel better about the intellectual exercise if the preponderance of the medical community no longer felt that Myeloma killed people within five years. SH conceded my point.

* In SH's opinion, all the testing is overkill. He almost did a spit take (but he wasn't drinking anything) when I told him I'd had six bone marrows. There is no need for this testing at this point, in his opinion. Watch the M-spike. If it starts going up, I'm no longer in remission. From my standpoint, that's not good enough. I think there is value in the data and it could explain why the M-spike has plateaued. I do think on the margin BB does more testing than is probably necessary, and I may yet veto the FNA with this in mind.

SH is a "control the disease" kind of guy. When I told him that I was won over by BB's data, he said "okay, so you're a believer, then." I was mildly put off by that, actually, but I do see his point: until a double-blind study is done, all that we know is that there is a subset of patients for whom total therapy works very well, and we don't know if they'd have done just as well with a much less toxic regime.

I've been through this logic before: the risk of late-term leukemia is very low, and I'm through 75%+ of the main brunt of treatment with almost no side effects (toes are still tingling a smidge so I'm not going back on the thalidomide until my alpha liopic acid shows up in the mail). I don't care if I could have been cured with something less toxic so long as I am cured.

Anyhow, the bottom line is this: I still have the disease. I am hopeful that the next round of chemo will clobber it some more, and if that doesn't get me into remission, then surely at some point the VRD in maintenance will. If I get a satisfactory answer from BB on the big question I outline above, I may even feel good about it. Right now, I'm still rather upset that I don't seem to be improving any further.

At some point, I will need to draw the line on my treatment and return to life. I had hoped that this would be AFTER I no longer have any trace of the disease. It is looking increasingly as though that won't be an option.

A break from Myeloma...some cooking exploits!

Because it can't always be about cancer...and because, dammit, I'm very proud of what I pulled off last night...

One of my favorite chefs is Michael Mina, and his flagship restaurant in San Francisco is one of my favorites in the world (he also has played a major role in bringing fine dining to Las Vegas and his restaurants there are top notch). When the wife and I went to Michael Mina in February, we came home with his cookbook.

This cookbook is pretty aggressive...the whole restaurant there is organized around the concept of "trios" where a particular type of food, whether an appetizer, main course or dessert, is prepared and then served three different ways in small portions. This means, of course, three times the preparation time. Plus the recipes themselves are quite involved...each of the three preparations might have, in addition to the actual food itself, two kinds of sauces and two or three additional little things with it.

I do, however, love a challenge. And I enjoy cooking. In some ways, it has the same appeal to me that tinkering with a chemistry set at age 10 did: you pour a bunch of stuff together, it fizzes, changes colors, smells different, and then you make somebody eat it!

So when Jill gave me these special plates for Father's Day that have three little divided compartments and which are tailor made for this "trio" concept, I knew I had to give it a shot.

The cookbook itself is one of those that is beautiful to look at but IMMENSELY complicated and not put together in a sensible way. For example, there will be literally ten things that all need to be prepared in parallel, but there is no information about how to sequence them. The book also does things like, in a very time-sensitive recipe where panic is setting in, say "add one tablespoon of sauce X that takes 6 hours to make and which I haven't mentioned yet." I spent literally four hours on Sunday transcribing the recipes from the cookbook and trying to make some sequence out of them, and made my shopping list. On Monday morning I shopped, and I started cooking at 3:30PM. I was in constant motion until the main course was served at 10:45PM. So literally seven hours of cooking for probably ten minutes, at most, of eating. Not sure about the tradeoff...

Anyhow, here's what we ate.

The appetizer: seared scallops on miniature grated potato cakes, presented three ways.



Left to right, the first was on a corn tarragon pudding, with black truffle, with scallop ceviche in black truffle vinaigrette and truffled corn compote.



The second was on a red beet beurre rouge sauce (the only sauce that broke, dammit!) with scallop ceviche in champagne wine vinaigrette and beet garnish.



The third was on a beurre blanc sauce with lobster and scallop ceviche in lemon marinade.



This third preparation also calls for caviar to be put on top of the ceviche and on top of the lobster bits, but I can take it or leave it, the wife doesn't really like it, and even I have to draw the overkill line somewhere -- buying a tin of the stuff in order to use 1/2 a teaspoon for two people would be completely egregious.

For the main, we had butter-poached prime filet in pinot noir reduction, again served three ways. Frankly, while an interesting preparation it wastes a LOT of butter and it could much more easily be made by cooking a steak on a flat-iron skillet (my preferred method). Nonetheless, it was tasty. It was supposed to be "real" medium-rare; it probably came out medium which I wasn't thrilled about but it was still good.



Left to right, the first preparation was on a bed of horseradish mashed potatoes, with baked cippolini onions and buttermilk onion rings.



The second was on a bed of bernaise sauce with broiled asparagus tips, served with salt-baked yukon potato with tarragon butter, creme fraiche, fresh bacon bits and fresh-cut chives.



The third was with miniature potato cakes and garlic-wilted fresh spinach, served with horseradish cream sauce.



This third treatment in the book calls for a foie gras reduction as well, but I'm ethically opposed to foie gras, and I don't like the taste of it either...so nuts to that.

Not pictured in the steak preparation is the pinot noir reduction itself, which I forgot to pour until after the pictures had already been taken (but I was terrified another sauce was going to break so we needed to eat quickly and I didn't have time for more pictures).

Needless to say...I hope they don't run cholesterol numbers when I hit the doctor's office this afternoon. I plan on speaking with Dr. SH to keep him abreast of what I've done and where I am in treatment. I expect he will tell me that BB's program is overkill, that all the testing is overkill, and that maintenance therapy is overkill...although SH is good enough to note that others disagree with him on the latter point, in particular. I'm very appreciative that SH, even though he disagrees with BB's protocol, told me to investigate him.

Hopefully, I will have good news from the lab draw last Friday. As it turns out, I'd been taking a little too much of the Thalidomide (oops!). I'd been taking 200mg a day, which is what they do during chemo, but during "bridging" therapy I'm only supposed to take 100mg a day. I've cut it out completely, but I will resume it tomorrow at 100mg and see what happens.

One last thing re: the cooking last night...a picture of the chef, about to do battle with multiple butter-based sauces.

Side effect round-up...

So it was an interesting weekend.

Friday night I slept fitfully. Meaning I work up at 4AM, wide awake, unable to get back to sleep. At around 6AM I finally nodded back to sleep, and then woke up at 8AM.

With a lot of blood on my chest.

Seems the line had jiggled around a bit. Now, I've been trained by Bonnie and others to fly into a panic and all I could think of was how much grief they were all going to give me for keeping this stupid line in, however I resisted the urge to panic and calmly told Jill that we probably needed to go to the ER, unless one of our doctor friends could come by and take a look. Fortunately, a surgeon lives about ten houses down the street (truth in advertising: we live in Los Angeles and yes, she is a plastic surgeon and she normally works on something chest-related other than central veinous catheters). This woman was kind enough to take a look, and she told me that the skin was just getting very tired of having the line in there, and a granulated piece of skin probably broke off and let the line jiggle around a bit. She helped me change the dressing, and we cleaned up the blood from the CVL as best we could to cover up the evidence. Hopefully nobody in Arkansas will be the wiser.

Saturday night, I was determined to sleep better. I took an Ambien. I slept very soundly for about three hours. Then I woke up at 4AM, like the walking dead, again unable to sleep. It's becoming a pattern, and as I type this it is 3AM on Monday morning so there's no sign of abatement. Taking the Ambien, though, combined with the inability to sleep, is a real doozy.

The tingling in my feet is still there but it has lessened a little bit. It is most likely the onset of peripheral neuropathy, but I'm not 100% sure because (I'll get to this in a moment) my ankles are so swollen it's hard to even comprehend it, and some of this feeling has to be from the funky cold edema*.

In addition to the tingling, I'm swollen up (despite having been on a reduced dose of Dex, and not having taken it since last Thursday). I still have the rash on my neck from the Dex I took a month ago. Plus I now also have the Thalidomide rash on my face, like last time (BB said "why do people complain about a little rash, it means cancer is dying" so I suppose I will take this rash...except I stopped taking the Thalidomide last Thursday as well after the neuropathy started showing up). Because of the swelling or something else, I also have blurry vision and trouble getting around (I can't bend my ankles, literally).

I will be calling one of the nurses (Melissa, she of the nudist truck driver father story) to give her the rundown on my maladies and see what they suggest. A fellow MM traveller from Australia was kind enough to email me about Alpha Lipoic Acid as a preventative for neuropathy, and I'm definitely going to inquire about this (I'm still using that MetaNx vitamin B compound but one can't have enough preventative medicine where neuropathy is concerned).

Hope you are all sleeping better than I am!







*play on a bad pop song from the 80s, the" funky cold medina." Feel old and pathetic now? Me too.