An explosion of granulocytes!

So today I went back to Dr. GD's office for a Velcade infusion.  They drew my blood, and came back with the CBC.

Interestingly (or perhaps alarmingly) my whites are at 14.  I thought I read it wrong at first -- i thought I was reading Hemoglobin!  My white have been above 6 only once since September.

Almost all of this coming from granulocytes -- immature WBCs that are the least suppressed by Velcade and Revlimid.  I suppose that's good -- if all three kinds of major WBCs were off the charts, I'd be worried something was wrong with my white cells.

As it is...I'm not sure what to think.  I'm not sick.  I haven't been infected with anything.  I don't have a fever.

Now...if I was in Arkansas, they'd have run a C-reactive protein (CRP) to find out if I've got anything else going in.  GD wasn't even in today, and although I could have told them do run CRP, they don't normally do it there anyway.  My frustration with them continues.

Anyhow...I guess I'll wait until next week and see what happens.  If I've got leukemia now, one week won't matter!

Meanwhile, everything else is moving along.  I went on a run this morning -- I'm in the worst shape of my life.  My legs started cramping after half a mile.  It's frustrating because I know I need physical therapy but the demands of my job will not allow it.  I'm going to have to work out some kind of compromise with my boss after my current deal ends -- which I hope will happen in the next few days.

Took Senna this morning -- nothing yet.  Will take another in the morning if need be.

And that's all the news that's fit to print for the evening folks.  Nitey night.

No Alpha Lipoic Acid...and now I remember why.

I had taken some Alpha Lipoic Acid for a while, rather sporadically and without too much conviction, during the time I was on thalidomide.  This is a pill (though it can also be given intravenously) that is used with diabetic to combat neuropathy, and it's also been recommended by some Myeloma centers (for example, Dana Farber had it in their regimen, at least in 2006, as can be seen here.

However, a more recent paper presented at ASH in 2009 is titled Alpha Lipoic Acid (ALA) Inhibits the Anti-Myeloma Effects of Bortezomib.  That's pretty dry, as far as light reading goes.  However, anything that makes Velcade (Bortezomib) not work as well is off limits.

As I type this, there's no pain or numbness.  It feels like my shins are asleep, if that makes sense to anybody.  Except I wouldn't say the tingling is significant...it's barely there.  Yet still, enough to notice.

One reader was kind enough to mention B vitamins.  I do take, on my Revlimid nights, something called Folast.  This was supposed to be a generic form of MetaNX --  a complex of folic acid, B6 and B12 -- which is used to combat diabetic neuropathy. I read here, however, that Folast has an inactive form of one of the B vitamins, which makes it not as effective.  MetaNX uses the active form of these vitamins.  So I better fight for the non-generic!

This post is a little link-happy but this information is specific enough where I wanted people that might be interest to be able to read the same source materials that I'm reading.

Tingly feet...

Well...I think it's starting to happen.  I wouldn't call it painful, I wouldn't even call it distracting, but if I think about it, I can feel a little tingle from my ankles down.  The dreaded peripheral neuropathy.

Now since I didn't get this while on Thalidomide, it's coming either from the Revlimid or, more likely, the Velcade.  And that's a type of neuropathy that hopefully goes away with a reduction in that medicine.  Of course, the little reminder from my bloodwork the other day indicates that I'm not ready to cease Velcade.  But I wonder if we might want to taper it back from the 1.3mg/m2 that I'm currently enjoying to the previous 1.0mg/m2.

Something else for BB when I meet with him in a few weeks.

In other news, I remain hopeful that they'll be able to do a kyphoplasty (aka "poof up" my vertebrae) when I go to Little Rock in a few weeks.  Wouldn't mind getting back the height I lost.

I've also decided that I'm going to submit myself to the full battery of tests while there.  I was thinking of bagging the PET since I don't need more radiation...but since I'm not yet satisfied that I'm in the most complete remission possible, I'd like to see what's going on.  So I'll do that, the horrible 2-hour full body MRI, the bone marrow, the works.

I'm looking forward to seeing a few friends, and also to eating Whole Hog BBQ!

Thai food and velcade do not mix...

I have come to the conclusion -- after two similar experiences eating spicy thai food from a restaurant that I used to love -- that either my constitution has been radically altered by what I've been through, or there's a specific reaction between an ingredient in that food and the meds that I'm on.  Anyhow, long story short is I was far sicker than any chemo last night.  Who knew the primary ingredient in Chicken Gra Pow was melphalan?

For reference next time, I will attempt one Senna pill on Wednesday morning.  Tuesday night is too soon; Wednesday night a smidge too late.

Helpful commentary from BJ

I fax the labs -- that my local doctor here has had for two weeks without telling me about them -- and an hour later I get a thoughtful response from BJ that cross-references the last blood I sent to Arkansas. And this response, while recognizing the limitations of a non-doctor response, is about 100X more helpful than what I got yesterday.

Patients: no matter where you choose to be treated, and no matter what philosophy (control, cure, curcumin) you embrace, demand that doctors treat you as someone who understands their disease, and who is entitled to know the results of every test on a timely basis.  It's your body!

Anyhow, here's the news from Arkansas, which is both a bummer (I have not been consistently immunofixation negative) and somewhat reassuring (this is probably the sign of recovering marrow rather than myeloma):

This is the language found on almost all your reports, fairly consistently, describing your [immunofixation results]:

Immunofix. Serum on March 8, 2010. The original IgG lambda M-protein may be present.  An indistinct band is present in the position of the original M-protein.  Plus additional indistinct IgG lambda and IgG kappa bands.

The biggest difference is that the original monoclonal band was with a heavy chain (IgG) and a lite chain (lambda) and [the report you faxed] shows a faint monoclonal free lambda light chain without a heavy chain which is not your original clone.

My pea brain is not equipped to analyze what that means, but it probably means nothing. Every once and a while you have what are called oligoclonal faint bands which is seen in recovering marrow.  Good conversation to have with [BB].  Right now I would say poof, nuttin!  Maintenance is usually for 3 years because that is the population that seems to have the ‘cure’ signature. Again a very notable conversation for [BB].

A few things to highlight: responsiveness to a patient they haven't seen in person in three months, enough data for me to make my own conclusions, and an admission of where the knowledge is incomplete. Were I interested, I could get BB on the phone to bottom this out today, but I will see him in a month so there's no real urgency to it.  Also, I'm sure they would have contacted me on March 9th had they not seen this before and discussed the same issue (oligoclonal bands as a good sign) with me once before.

Again: regardless of your philosophy on this disease or your physician's philosophy, demand to be treated like an adult and get whatever information you want. I understand many people don't have the desire to dive into the information the way I do, so your mileage may vary. But beware the doctor that puts data into a black box and refuses to share it. I spoke with the wife of one patient my age recently and her experience with her husband's doctors has been AWFUL -- as in they don't know the result of bone marrow analyses done WEEKS ago.

Don't stand for it!

A bit calmer now...so some perspective!

Thanks for the words of support in response to yesterday's little bump in the road.

Having thought about it a bit, of course I wanted to never see any trace of anything wrong with me ever again, and I believe I'll get there, but I'm not there yet.  Pretty simple logic: if I had no myeloma cells left in my body, what would be the purpose of maintenance therapy?  BB knows this, hence the VRD that I'm on for at least another 28 months.   If, in fact, this was a busted up piece of a monoclonal protein that wandered into the bloodstream, it's evidence of the need to continue maintenance, and it will get obliterated by the cocktail that I'm on, along with whatever cell created it.  I will stick with the program, then!  Onward!

Now the failure of my doctor to get me my labs is another story.  My friend Sean, whom I met during transplants in Little Rock and whose unfailing good spirits and positivity are quite inspiring, noted that he goes to an infusion center that is not manned by a hematologist and they follow BB's orders to the letter.  They draw blood, call Arkansas to confirm the counts and get approval for the velcade infusion, send the blood to Arkansas for further analysis and administer the velcade.  That sounds like a good solution!  Perhaps I will seek one of those places out.

By the way, Sean maintains a blog here.

Unsettling lab results, and GD exposed as a control-the-disease sheep in wolf's clothing!!

Argh.

Went to get my Velcade today, and to see GD for my once-a-month visit.

Very unsatisfying.

I asked to get my lab results.  He said "everything looks fine" regarding the APRIL FREAKIN' FIFTH labs, which are now two weeks old.  Except everything is NOT fine.  There is a "faint lamba light chain" present under immunofixation.

Now, this doesn't mean anything, necessarily.  I'm most likely still in remission (though I had to check in with BJ in Arkansas to get this information, rather than Dr. Numbnutz).  He evidently didn't think it was worthwhile mentioning this to me.  Which brings me to my first item in a list of how things are going to change.  I am getting my damn labs every freaking week if I have to turn that damn place upside down.  Otherwise I am going elsewhere.  This is total BS.

Anyhow, after I pried this information out of him, I asked him if it was an indication that I had lost remission.  He said it wasn't an indication of there being a monoclonal band, necessarily.  An immunoglobulin has two long pieces, called heavy chains, and two small pieces, called light chains.  One of these is a lambda light chain, and another is a kappa light chain.

There is a lamba light chain under immunofixation in my April 5th lab.

I wound up talking with Dr. GD for about 20 minutes, during which he said that he thinks people should try to control the disease, that he doesn't doubt that BB is curing people but that it's not that big a deal to have residual disease because a lot of people have it, and even if people live 20 years in remission is doesn't mean they are cured, blah blah blah.

In the words of The Bard:  "this guy can go piss off!"*

All this time, I've been getting maintenance therapy (he believes it helps control the disease, but of course hadn't read the article in the Myeloma Beacon and doesn't know what a PCR test is) from some doddering bunghole who isn't with the program, doesn't feel the need to inform me when I've potentially lost remission, etc.

I contacted BJ, who told me that it could be part of an oligoclonal chain that was picked up and that she is highly doubtful that I have lost remission.  Unfortunately, it says "monoclonal chain" right on the damn labs that this stupid buttpipe didn't see fit to tell me about for 15 freaking days.

ARGHHHH!!!

The reality is, I have probably not lost remission -- but 100% of the time that somebody loses remission, this is how it starts.  So once again, my nerves are shot.

On the plus side, light chains in both urine and blood are normal, beta-2 microglobulin is normal, IgG is low, protein is normal, there no monoclonal protein under SPEP...plus I am on velcade, revlimid and dex in strong enough doses to kill whatever's left...plus I know I've got to stick with the program for another 30 months or so before I've killed the last of it off.  So none of this should be alarming...although for somebody accustomed to not even thinking about the disease, it is jarring.

It also highlights some of my issues with Dr. GD, I suppose.

_____

*Note:  This is not actually Shakespeare, thus making my comment a brilliant (and perhaps even sardonically irreverent, as Dr. Pearl might say?) joke.

Addendums (end-ums?)

1.  Taking Senna Wednesday night too late.  Wednesday AM seems like good starting point for next time.

2.  My jaw / teeth are not falling out of my head.  That's good.  Didn't want to end up like this poor guy.

http://img385.imageshack.us/i/425x353kz6.jpg/

I think that may be a still photo from a show I saw on the BBC entitled The Worst Teeth in Britain.  It was almost impossible to watch but it was also one of the most entertaining hours of TV I've ever seen!  

3.  I underreported my platelet count the other day -- it's 133, which is good news.  Sure to fall again now that I started Revlimid once more.

Fine-tuning maintenance...

I've decided that my haphazard trial and error with respect to Senna (anti-constipation med) is a failed strategy and I need to be more meticulous and recording what I'm doing.

An aside: doesn't "anti-constipation" sound much better than either "laxative" or "stool softener."  Shudder.

Anyhow, I am formally noting for next time that starting Senna on Tuesday night is not a good idea.  Next week I will try Wednesday AM instead.

In non-poop related news, the following tricks (mostly mentioned by people that follow this blog!) have been extremely helpful:

* Take Dex at night!!!!   While counter intuitive, the drug doesn't kick in for several hours so if you take it at bedtime, you'll get a good five hours or so before you have issues.

* Over-the-counter magnesium supplements for the Revlimid-driven leg cramps.  Mine has Zinc and some vitamin B in it as well.  The stuff I am taking can be found here.  I take three pills a night on the nights that I take Revlimid.

As for the rest of maintenance, I got another shot of testosterone yesterday (this time without a prostate exam -- I greatly preferred this time to the previous one!)   I would say that there is a marginal increase in mojo.

It occurs to me that some blog followers (including those in my family) may not get the pop culture reference associated with my mojo-related comic relief photos.  I'll have to explain it to you another time.

As my normal nurse is on vacation for a few weeks, I'm going to a hospital rather than the doctor's office for my velcade push.  This experience made me feel thankful that I can normally do this in a doctor's office (MUCH less administrative hassle, much less time taken) and also made me realize how efficient Arkansas is.  The efforts made to keep the room clean in Arkansas (e.g. wiping down the chairs with alcohol after after patient) and the efficiency with which labs are returned, etc. is pretty astounding by comparison to other facilities.

After a week off Revlimid, my counts looked pretty good!   Some of this could be due to different labs, but my WBC was at 4.0, my platelets at around 115, and my HGB at 14!  All good markers (relatively speaking).

I got rid of my cold -- FINALLY -- after about 20 days.  The over/under is 10 days before I get another. Who's taking bets?  :)

I did hear from another MM traveler that they get IVIG from BB in Arkansas, and that it enhances their ability to fend off colds and get over them quicker.  I am starting to believe that BB knows more about this than my doubting oncologist in Encino, or perhaps even than the colleague of my primary care physician (who was less certain in her advice not to get the IVIG).  We shall see.  It will be a topic of conversation with Dr. GD when I see him next week, and with BB in May.

Lastly, there's something funky going on with my left ear.

There is an intermittent pulse -- like hearing a heartbeat there but much more rapid (up to 200 bpm) and variable.  I asked my dear friend Dr. BM about this and he suggested trying a nasal decongestant spray so I'm gonna give that a shot and see what happens.  I'm not concerned about it, but it's rather irritating and distracting.

That's it for now, folks.

Platelets and WBC back up

Quick report on a few lab things.

This last Tuesday, platelets were up to 85 from 65 the week before.  I went off Revlimid per my usual schedule on Monday, so they should continue to climb until I resume that particular wonderdrug on next Tuesday night.

WBC was up to 3.7, probably in response to this lingering chest cold which is down to about ten productive coughs a day and a few nose blows, so it's not that big a deal.  Will be glad when it's gone.  The over under on how long it takes me to get a new one is about two weeks.  We'll see if I can beat that this time.

Everything else more or less steady as she goes.

I've got bad heartburn, despite taking Protonix, so I may pop another one.  That's what's keeping me up.  I was tired enough (long days at the office) to try to sleep last night without Ambien -- that was a mistake on the day after I took Dex.  Oh well.  More learnings for next month I suppose.

Feeling good, though, and with each day, more and more happy that I found BB and went through the aggressive treatment.

For those who might be new to this blog, I have a quick summary of some facts up on the blog of a friend, Phil Brabbs, who is a young guy that went for aggressive therapy in Michigan after meeting us in Arkansas.  His protocol is slightly different and in some ways not quite the uber-aggresive approach that BB uses, but it nonetheless incorporates multiple chemo, a (single?) stem cell transplant and maintenance with the objective of curing the disease.  Phil is an absolutely remarkable guy and we love his wife Cassie as well.  They've been featuring other MM cases on their blog in an effort to educate people about various treatment options and experiences.  I'm their guest for this week and my blurb can be found here.

Interesting news from the Myeloma Beacon

There are plenty of blogs out there that report new developments in traditional and alternative cancer therapy and research.  My friend Pat Killingsworth has an excellent one here.

My blog normally doesn't do that, but in a response to the previous comment, "J" noted a recent (as in yesterday) article in the Myeloma Beacon that talked about how a test called a polymerase chain reaction or PCR can be used to detect residual cancer cells after a stem cell transplant, and this article is important enough to comment on.

The real point of the article, which can be found here, is that maintenance therapy with Velcade, Dex, and Thalidomide "may be effective in further reducing the number of tumor cells surviving in the marrow after ACST to levels only observed with allogeneic stem cell transplantations."  That is: cure.

Here's where I point out that my original hematologist said, matter-of-factly, "I don't believe in maintenance therapy."  He pointed out at the time that City of Hope did not, that MAYO did not, etc.  I heard this from another doctor recently who thought it was "inconvenient" to take six months out of one's life for all this treatment and then be chained to a doctor's office weekly for three years.  Meanwhile, BB has been honing maintenance therapy with these agents since 2003, and now uses Revlimid instead of Thalidomide which the article said could further improve the already clear benefits of maintenance therapy.

Fifteen months ago, hardly anybody was doing maintenance therapy.  And now, we see that it probably saves lives.  The world is coming around.  BB is right.

Now, unfortunately, even BB's protocol only cures about 60% of patients -- that leaves a lot who need other therapies to beat the disease.  And I remain heartened by the continued focus on developing new drugs for these and other MM sufferers.

Hello to two new friends

Still sick here -- inconvenient but not the end of the world.

I received an wonderful email last night, passed on by my wife from my wonderful sister-in-law Gail.  A friend of Gail's, with whom I spoke at some point during my treatment (I can't recall -- chemo brain?), evidently determined at some point to go to Arkansas for treatment.  I thought I remembered from our conversation that this person wasn't necessarily going that route, but in any case, he evidently did.

Turns out this person was sharing a transplant room with another person, who was also familiar with my blog, and as a result of reading it had also determined to go to Arkansas.  Let me say hello to them both now, if reading: GB and PD, I'm so glad to hear you took your treatment by the horns and are taking the fight to your MM.  I wish you every success in your treatment and hope to meet you in LR (or elsewhere!) one of these days.

Without belaboring the point, I was sent a very touching note that credited me with saving PD's life.  This is obviously not the case: BB is saving PD's life.  But I'm extremely thankful for any minor role this blog may have played in helping PD make his treatment decision.  Both PD and GB encouraged me to ensure this blog is published, and I am resolved to do so, and have taken steps but it's just so hard to find the time to finish the job!   I will do so, though.

So PD and GB, keep up the fight, and thank you very much for your kind words!

As for me, I've still got the tail end of this chest cold but it's tolerable.  My platelets fell to 65 last week, which was troubling.  I took my last Revlimid last night, and we'll see what the platelets are today.  It could have been an aberrant reading (but I doubt this as I've got several ugly bruises).  In any case, we'll see what they are today.  That was a fairly sudden drop -- they've held pretty closely between 100 and 120 this whole time and I'm not sure what the sudden fall would be due to.   Whites remained at 2.8 -- despite the fact that I had a pretty bad cold when it was last checked -- and HGB around 12.7 still.  Everything more or less where we want it to be, especially M protein under immunofixation which remains non-existent.