A Velcade holiday?

Howdy folks.

Been an interesting and somewhat unpleasant couple of days here.

In order of severity:

Went to bed Sunday night with a lot of stomach pain.  I've gotten used to it conceptually, and although it's getting worse each week I figured I could ride it out until March when, hopefully, those stupid little pits in my spine have gotten with the program and I can stop meds.

I took a Vicodin, which usually dulls the pain enough to permit sleep.  It did, but I woke up yesterday morning with a terrible pain that I usually don't experience in the AMs.  I took one Vicodin and it did nothing.  I took another and it did nothing.  The pain was pretty terrible.  If I had one of those smiley face charts...




...I would have been Mr. Orange over there, second to the right.

I called GD's office, fearing that this could be C Diff or something awful like that.  Jill was concerned that it could be a "boomerang" effect from the acetaminophen (which is part of the Vicodin pill), as she had experienced something similar from migraine treatment years ago.  GD thought it wouldn't be this, and was unlikely to be C Diff, but could be something viral or bacterial.  He ordered some tests and we're going to wait it out and see.  I feel better this morning, although I still have a bit of a fever and some pain.  I was sick to my stomach yesterday but today the nausea has abated.

In other news, I think I am a rare case of Velcade-related allopecia (read: I'm losing my hair from this crap).  It's not a common side effect, but it does happen.  I've noticed some thinning and checked with the guy who has cut my hair for ten years and he said he'd not noticed anything.  So I'm watching that, as well.

Been a slow news day for a month or so...

Howdy folks.  I hope you and yours are off to an enjoyable start to the holidays.

Not that much to report, but a few things I should note for those playing the home game:

* I've been off Revlimid and Dex for almost 90 days now.  Tiredness is improving.  Mental acuity (which is one part related to tiredness or lack thereof, and one part independent of it) seems to be improving somewhat.  Face is not quite back to normal but probably 70% of the dex bloating is gone.  Heartburn gone.  What little neuropathy I had from time to time is gone.  Leg cramps gone.  Hurray!

* The Velcade dose, upped to 1.5mg/m2, is tougher to tolerate now than ever, in part because of the increased dosage, in part because the body is getting worn down from dealing with this weekly for almost four years now, and in part because the Dex used to mute the effects of the Velcade.  Sorry for the TMI squad here but in the interest of science I must report: the diarrhea remains unabated, although the frequency has dropped from 15X a day (yes, it really was this bad) to maybe half that.  The GI pain is more pronounced and intermittently affects me all week long, now -- I might have one or two pain free days before the next injection.  I use Vicodin to cut the pain; occasionally it is intense enough that I need to take two of them.  Not great, but I'm not taking more than six or seven pills in the course of a week so I don't think I'll develop a habit.  Nonetheless, I'm looking forward to not needing it!

* After being pretty healthy for a year (other than the hand/foot/mouth disease, that is!) I have had the stomach flu and now the regular flu in the last two weeks.  My white counts are no longer as suppressed as they were while on Revlimid, but we Brethren of the Weakened Immune System must remain ever-vigilant with our use of Purell lest we come down with something.  Tamiflu and Levaquin are holding the flu at bay but it's never pleasant.

* I recently had my blood tested for childhood innoculation antibodies, which SF at City of Hope had told me sometimes the body "remembers" after transplant.  Well, the body don't remember this stuff after two transplants...at least not in my case.   I have ZERO immunities...except to Chicken Pox since I had Shingles a couple of years ago.  I wonder if the presence of antibodies to Shingles means I can stop taking Acyclovir?  Something to consider...although I really don't want to do that until the killer cell (CD4?) count is back in normal range.  I do NOT want Shingles again.

Meanwhile, steady as she goes until my next visit to Arkansas in March.  I will nonetheless keep you posted in the interim!  As advance notice, BB will be on a Curetalk panel in February which I'm very much looking forward to joining.  And I'm sure there will be the occasional bit of news along the way.

Be well, all!

The Cure versus Control Discussion

As noted in a previous post, I participated in a panel hostel by CureTalk during which we discussed the issue of cure versus control in Myeloma treatment.  My fellow panelists (Jack Aiello, Gary Petersen and Pat Killingsworth) and I discussed a number of questions, including the following:

• Right now, there are two possible therapies that might “cure” select patients; donor transplants and Total Therapy. My question is this: From a patient’s perspective, are either of these intensive therapy options worth the small risk of a possible cure?

• What does “quality of life” mean to you? How poorly would you have to feel before deciding to stop a therapy that might significantly extend your life? and

• Specifically, if you were given the option of living five years relatively drug free, or six years using aggressive maintenance therapy all six years- complete with a long list of side effects – which would you chose and why?

It's worth noting that Jack, Gary and I all took issue with the phrasing of the last question -- because to us it's not a choice of five years with minimal treatment versus six years with extensive treatment.  We viewed it as five years versus ten or twenty.  And even then, the choice is not cut and dry.

You can listen to the 60 minute broadcast here.

http://www.blogtalkradio.com/curepanel/2012/10/29/myeloma-cure-panel-talk-show-with-pat-killingsworth

It's interesting to note that there seems to be a general feeling of the tide turning in terms of awareness that Total Therapy has the potential to cure many newly diagnosed patients.

Bad language but boy is this funny!

For those of you who may not be familiar with them, The Onion is a satirical website that mimics a newspaper or news-site.  The Onion originated 20+ years ago as a fake newspaper, started by (I think) students at the University of Wisconsin.

They've continued over the years, and for several years have been publishing a website.

I popped by there today and found a headline:  "Latest Study Finds Cancer Calls Now Cruelly Mocking Researchers."   Related articles include "98% of Babies Manic Depressive" and "Doctors Closing In On 'Second Head-Bonk' Amnesia Cure'".

Anyhow, the article in question is not only funny but also pretty well researched.  For example:

"The report confirmed that while all types of carcinomas are beginning to make researchers feel like garbage, myeloma cancer cells in particular think they're God's gift just because they're resistant to the frontline drug Velcade."

Bad language abounds, but for those not offended by such things, this is definitely chuckle-inducing.

http://www.theonion.com/articles/latest-study-finds-cancer-cells-now-cruelly-mockin,30074/

Myeloma Cure Panel Discussion: Cure versus Control

Hello folks.

On Monday, October 29th, I will be participating in my second panel discussion organized by Curetalk, an organization that hosts a number of dialogues related to cancer therapies.  I spoke on one of these a few weeks ago and was going to post about it here but my comments were overtaken by other events that I wanted to cover.

At any rate, I'm going to participate next week along with some other panelists including fellow Myeloma blogger Pat Killingsworth.   The tantalizingly controversial topic is, as noted above, cure versus control.

After we tackle that, we will address other questions such as "which is the one true God?" and "the definitive, simple solution to lasting peace in the Middle East."

The conference call, which is free to join, is limited to 50 callers, all of whom can ask questions of the panelists.  I urge those of you interested to register through the following link.

http://trialx.com/curetalk/panels/myeloma-cure-panel-29th-october-2012-7pm-est-on-cure-vs-control-co-host-pat-killingsworth/

For me, I'm very excited to participate in the discussion.  I will, however, be calling in from the airport in Las Vegas at the end of a much-needed mini-vacation.  I will try to find a quiet spot populated by people in the fetal position, listlessly searching their pockets for their once-full wallets.

In other news...Velcade Sub-Q has (thus far) the same side-effects as intravenous Velcade for me, with the added negative of painful bruising at the injection sites, reminiscent of Neupogen shots.  I am strongly considering switching back to IV Velcade -- they have to tap the port to check blood anyway...

Anybody have experience / thoughts on this?

Have a good week, everybody!

BD consult

Okay, on to more positive things.

After a couple of scheduling snafus, I was able to speak with BD, a long-time eader in MM research and therapy.  He was one of my original consults when I was diagnosed and I thought the current end-of-protocol-decision-point would be a good time to reconnect with him.  I was able to approach this with considerably less trepidation than would have been the case before getting the good news about my MYC gene a few weeks ago, so it was an almost philosophical conversation about when to end maintenance.

Highlights:

* I am doing very well.

* He observes that getting to four years of CR in the Total Therapy program is a meaningful achievement in terms of there being a flattening of the survival curve.  Readers will note I have mentioned this before.  I've got about ten more months.  For whatever reason, BB would have been okay taking me off therapy at three years of CR if those pits were gone, but as they're not, we continue.

* He suggested that Zometa will not cause those pits to heal up -- Zometa stops osteoclasts from destroying bones, but it doesn't accelerate healing.  So that means no more bisphosphonates needed.

* He believes, unlike KA, that I shouldn't be on proteasome inhibitors forever -- even if they become a simple oral alternative.  Rather, I need to get off all this stuff to allow the body to heal.  He noted the squamous cell carcinoma in the finger is an example of my body having been pushed to its limits by the therapy and I don't disagree.

* Having said that, he believes single-agent Velcade is not a bad idea until the pits clear up, which could take quite some time.

* He thought Interferon wouldn't do anything, though as I pointed out BB's musings about this were before we saw the normalized expression of the MYC gene.

* He thought radiation of the four pits could be a possibility in the event there are any rogue cells in there...but he also thought that without any evidence of the disease, it wouldn't be worth it, and he further noted that radiation impedes the healing process.

All in all, his hope would be that I could get off Velcade in the next 3-6 months, pending the results of MRI/PET that would show the pits are gone completely.  As I'm going back to UAMS in March, that is a logical time to stop the Velcade if I'm able to do so -- but I want to wait until those pits are straightened out first.

On the strength of this and the normalized MYC, I'm feeling like I may not need my third "second opinion", which was to come from MAYO Scottsdale and a doctor there who specializes in MYC.  That's scheduled for this Thursday but it can only be done in-person and for anybody that knows my job, it's a real pain to get time off to do anything.  They give me time to go to Arkansas twice a year now and I appreciate that much -- taking off more time seems like it may not be critical.

I shall have to think about it!

Quick post on the Beacon drama

No good deed, it has been said, goes unpunished.

And how.

A doctor from another institution recently published an article calling into question the mortality statistics from UAMS.  Essentially this article didn't dispute the percent of patients who were still alive at a given point in time (UAMS' strong suit) but it disputed the percent of patients whose cause of death was reported as "unknown/undetermined" instead of treatment-related.  He accused UAMS, essentially, of downplaying the percent of patients that die from the toxicity of the program.

UAMS is defending itself, though frankly not as aggressively as I'd like.  It's uncommon, I believe, for doctors to wage public war over stuff like this but this episode has certainly given those opposed to BB for whatever reason an excuse to vent their spleens.

I went to the Myeloma Beacon website after have been warned of some of this by BJ -- and I feel I owe a little something to BB and the team since they've saved my life.

I ended up stepping into a snake pit over there.  I've already over-participated in the thread so I won't be posting anything further there but I have an observation and a request.

Observation: the fact that people with a life-threatening disease don't have better things to do than denigrating both those working against the disease and those patients who choose a different treatment plan than their own would be mind-boggling were it not so depressing.

Request: For any of you who read this blog and are "offended" when I point out that BB used particular protocols before they were generally accepted...do us both a favor and stop reading this blog.  It wasn't meant for you and we'll both be happier.

BB's phone message, KA's advice and sub-Q velcade

Some quick and sundry updates here.

First, although I had pried the information from his team last Friday, BB himself called me on Monday (I don't know why but I didn't see the phone "ringing" or vibrating).   I was hoping to actually embed the audio here but I can't do it at this time (will do my best since the cadence is what makes this humorous).   Anyhow, the voicemail is:

"Hey Nick, this is Bart.  All studies are good and negative.  Okay?  Great news.  Calm down.  Thanks, bye."

I feel like saying, in full Walter Sobchek mode, "I'm perfectly calm, dude...calmer than you are."   And I am, in fact, pretty calm these days.

So the plan at present is to continue on single agent Velcade in a ~20% higher dose (1.5mg/m2) until those damn pits in my spine heal up, with a check-up (including bone marrow, PET, MRI, etc.) in six months' time and cancer markers run every two weeks from blood.

I spoke with KA yesterday on a phone consult to validate this approach.  It was a very pleasant conversation, the highlights of which were:

• He agrees that I should remain on something to ensure the full adherence to BB's approach with its hope for cure

• He agrees that Revlimid should be discontinued since I've had a ton of alkalyting agents (e.g., platinum, adriamycin, cytoxan, etoposide, melphalan in high dose) that alter DNA and it is in combination with these alkalyting agents that Revlimid use is most likely to lead to myelodysplasia and, potentially, Leukemia

• He thinks Interferon wouldn't do anything other than make me feel like I have the flu constantly

• He thinks a proteasome inhibitor (like Velcade) could be a long-term option for me (as in potentially forever) and that in a couple of years there is likely to be an oral version (i.e., a pill) that would make it easier to take.  I think he doesn't full subscribe to Bart's confidence in a cure provided the MRI is clean.  We'll see -- this stuff remains poison and I don't want to be on it forever.

• He "wouldn't sell the house simply because of the MYC gene."  While it is no longer over-expressed, I still wanted KA's thoughts on it.  He said that "with respect, [BB] is probably guessing about its responsibility for the remission loss" and I'm sure BB might agree, but I don't know how extensive the regression studies are so it might be a very educated guess -- or it could be statistically proven.  At any rate, the fact that it is normally expressed gives me some comfort -- particularly when combined with BB's voicemail.  I asked KA what maintenance drugs target MYC and he said "a few years ago, I'd have said none...but it turns out they all do.  Revlimid is particularly effective."  So perhaps Revlimid is what caused the MYC to normalize over the last three years of therapy.

• He noted that over time, the bones should resolve and the heterogenous marrow should probably even become homogenous but that he wouldn't use the latter as a requirement of remission (he wouldn't say cure, obviously).  He said that PET scans were extremely sensitive and the marrow funkiness could be caused by many things (e.g., an inflammation).  I didn't bother to mince words and point out that we were talking MRI since clearly Arkansas and Dana Farber diverge on treatment long before this point.

I thought it was good that one of the world's foremost experts on novel drugs (versus transplants) essentially concurred with BB at this point.  I'm going to continue with a couple more opinions because one other common point of commentary between BB and KA was that "we're in uncharted water here" insofar as there are no studies to point to.  So it can't hurt to get a couple more viewpoints to corroborate the approach.  Next up is BD.

PHEW!!!!!! Good news from Arkansas!

First of all, thank you all SO much for your prayers, emails, voicemails, texts, comments, intentions, positive vibes and well wishes.  They do make a difference, both in how challenging news is handled and, perhaps, in the outcome of events.   I deeply appreciate them!

So, let me share the good news.  My gene array came back about as good as it possibly could have, which means:

1.  Negative for myeloma (and this was in the heterogenous marrow of a former lesion, so if it was gonna show up anyplace, that is where it would show up)

2.  "No cytogenetic evidence of myelodysplasia" which means, most likely, that there were some funky looking white cells but they are made to look funky by the Revlimid, rather than my body manufacturing them.  We're off Revlimid so hopefully that will all resolve by next time but meanwhile, my marrow doesn't appear to be pre-leukemic.  Phew!!!

3.  The MYC gene which was over-expressed (the numbers being 18,390 and 13,928 in the two gene arrays I did before I started treatment, 17,000 after one day of Velcade and 19,602 after one week of treatment) came back at 3,200.  This puts it clearly in the second quartile (meaning somewhere between 50 and 75% of patients have more of this gene than me).  I need to speak with Bart to find out what this means, exactly, but it's no longer over-expressed.  So that MAY mean that I don't need to worry about spontaneous remission loss.

Triple phew!

One lingering question I have is whether or not my friend BB (the patient, not the doctor) who unfortunately lost remission due to this MYC gene had experienced a similar "normalization" through therapy -- in which case I'm not out of the woods -- or if his MYC gene had never been "normalized."  If the latter is the case, than it likely means that I won't face a high chance of remission loss -- and it means that BB (the patient) can look to his own MYC marker going forward in treatment as something that could indicate the efficacy of his therapy.   If the former is the case, then I still need to worry -- because he lost remission and if his MYC gene was normalized, then even though mine is not being over-expressed, I'm still at risk.

At least until those lesions resolve and the bone marrow becomes homogenous.  I had thought we only needed to look for the first but based on BB's (the doctor, now) concerns last week I might need to wait for the heterogenous marrow to give way to homogenous marrow.  Although I'd also been told in the past that this may never happen given the destruction of the marrow during transplants.  So I'm not sure.

Another conversation with BB (the doctor) is in order and I'm setting that up.

We still need to figure out what maintenance drugs to use since I'm now off Revlimid -- we want those stupid pits in my spine to heal up so we can breathe easier and get back to the "you're cured" track!   How I long for those words...

For the moment, though, the concerns of last week have abated.  Good lord, it's hard to explain how much stress that puts somebody through -- I'm not sure I fully realized it myself until the burden of that anxiety was lifted with this news.  I'm really emotionally spent.

Time to celebrate this evening with a great bottle of champagne!!!

Thank you all -- I will continue to update frequently as I learn more, including in numerous consults over the next couple of weeks.

The second opinion derby, redux

Howdy folks.

After getting knocked about a bit, I think I have found my sea-legs a bit and am going about the process of speaking to people that have specifically studied this MYC gene and may have thoughts on how to target it with specific maintenance drugs.  Of course my hope and expectation is to still handle all of this through UAMS but it can't hurt to be informed and I feel like BB is operating from the gut versus from a pool of data so it also can't hurt for me to understand how other's guts would lead them.

It may be challenging to do so.  Consider the fact, for example, that I remain in complete remission.  I can't send anybody slides of bone marrow because it won't show any myeloma cells.  I can't send anybody blood because it will be normal.  Nobody else really uses MRIs the way UAMS does; if I sent them an MRI it would show a few small inactive lesions and some heterogenous marrow which is to be expected from myeloablative therapy.

I think there are probably a limited number of doctors who would even consider ANY kind of maintenance for somebody in my condition, having concluded three years of VRD and retained remission that whole time.

Nonetheless, I've begun looking at which doctors have looked at the MYC gene -- either with respect to Myeloma or even with respect to other blood cancers.  The people whom I'm hoping to speak with include:

- KA at Dana Farber.  He's done work on MYC and he's a leader with novel agents.  Ironically, friend and fellow blogger GP was incredibly kind and sent a brief summary of my situation to KA's partner, PR.  He responded immediately by saying I should be speaking to somebody else outside Dana Farber. : \   Oh well, I'm still intending to do my phone consult with KA next Tuesday.   But this leads us to...

- RF at Mayo Scottsdale.  He evidently has done extensive research on MYC and is considered the leading expert on this gene (or at least one of them).  He's done presentations with BB on treatment of high risk MM before so they at least know each other.  I've sent an email to him asking to set up a consult, but haven't heard anything as yet.

- BD at Cedars Sinai.  A luminary researcher, he's done work on MYC and probably understands this disease as well as just about anybody.  I have a call into him to schedule a phone consult, although I could also drop by since he's local.

- SF at City of Hope.  He's got a tremendous amount of experience across different types of blood cancers and has done work on MYC.  He also understands BB's protcol.  And he's a great person.  And close to home.  So that checks a lot of boxes.

We'll see if I can speak with at least two of these people -- I'm particularly keen on speaking with RF.  Then we'll have some idea of what to throw into the mix along with Velcade if the gene array indicates that I still have this MYC gene running amok.

If I don't, then this is all much ado about no--  well, much ado about very little.  I'll still need to stay on Velcade until the lesions resolve even if I don't have the gene problems.   But that will be a bump in the road versus a majorly disconcert event.

Fingers crossed for good results on Friday.  BJ sent me a little text, since we had trouble getting cells from one of the bone marrow sites, that the results are "going to be good...or it wouldn't be this hard" (to collect the cels, I hope).   I presume that at least means that if I had myeloma cells the marrow would be more substantive.  This is part of what we hope for, but really we want:

* No myeloma cells
* No myelodysplasia
* No over-expression of MYC

If we're good on all those fronts, then we return to our maintenance program with Velcade alone, most likely, and watch and wait for those little spine pits to resolve.

I shall keep you posted.

I must also say I am particularly touched, as always, by the emails, calls, texts and posts offering support, prayers, positive thoughts and intentions, and even humorous and insightful historical commentary on the evolution of certain conventions in grammar!  :)

A more thoughtful recap of my current status

Hello friends.

I've had a couple of days to think through what the current situation is and so I'm going to try to recap it here.

I've finished three years of maintenance therapy.  This is supposed to be the "woo-hoo!" moment at UAMS when BB tells me "the Myeloma is gone and will not be coming back" and I can drop all meds except Acyclovir (the anti-viral that keeps Shingles away, which I need to stay on while my immune system recovers, which it would finally be allowed to do since I would be off the meds that suppress it).

Quoting the now 70+ year old BB directly from last week's appointment, "my usual approach is to continue to treat until such time as all the sh*t is outta there, so to speak."   This means traditional evidence of complete remission (no M-spike under the most stringent blood tests, normal urine, normal marrow) but also what BB called "Arkansas complete remission" (or MRI complete remission) which also means that all formerly-active lesions in the bones are fully resolved (i.e. replaced / refilled) with new bone, as confirmed under MRI.  His hypothesis is that these lesions are microenvironments in which myeloma cells can restart.  If the lesions are replaced with bone, it means they won't be able to do so.

We have been watching my 19 formerly active lesions resolve over the last three years of maintenance therapy, and all have gone (so I thought) except for five small ones in my spine, which have shrunk from 2.5cm at baseline (i.e., when I showed up to be treated) to 4 mm as of a 18 months ago.  But they have remained stable over these past 18 months.  I was hoping to see them gone since in addition to the normal maintenance protocol of Velcade, Revlimid and Dex, I was on the bone-strengthening bisphosphonate agent Zometa, the frequency of which was increased to one infusion per month over the last six months (I think I got four of them, actually -- same difference since this aspect of treatment is far from an exact science).

Last week, the MRI revealed that the five spinal lesions had still not resolved.  They were termed "small" and were not sized, but in the summary of results they were considered "stable" relative to the last scan six months ago.  This was problem number one.  BB wants to continue to treat until such time as...uh...well until such time as these are fully resolved, to use more polite phraseology than was employed in the actual consult.  In and of itself, this wouldn't be a huge deal...but this prompts questions about what medicine(s) to continue to take while waiting for resolution, and how effective they will be.

I've been on Velcade, Revlimid and Dexamethasone for three years of maintenance, but readers will know that I've had concerns about continuing on Revlimid.  It has been a key agent in maintenance therapy since Total Therapy 3 was begun in around 2003 and is widely used now.  About a year ago, it was noticed (by numerous entities, including the company that produces it) that Revlimid was associated with secondary malignancies -- solid cell tumors and leukemia, to be precise.  I had a squamous cell carcinoma in my finger, so we can check that box.  I had pre-leukemic cells in my marrow six months ago...so before we check that box, BB wants me off this stuff.  I agree.  For a while, the value of Revlimid (inclusive of these risks) is a no-brainer.  But after three years, has it done everything that it should do?  Is it now at the point where the risk of continued use is greater than the risk of remission loss?  Perhaps.  In fact, normally I would be pretty easy to convince except for certain aspects of my current situation.

Then there is the matter of -- for someone looking to continue maintenance with some urgency -- what it can be replaced by.  I want to keep up the attack on whatever rogue cells aren't yet with the program and make my body as inhospitable as possible for Myeloma cells while my bones continue to heal.  I suggested Pomalidomide, which as many readers know, is the next generation Revlimid.  BB said "yeah, good idea, but we can't get it."  I believe this is because Pomalidomide is still only available -- even to Arkansas -- as a single agent except perhaps in refractory cases, and I'm thankfully not yet a refractory case.  And if we are to use just one agent, BB wants to keep me on Velcade since he believes this is the most effective anti-Myeloma agent there is.  He asked me if I can tolerate it without the Dex and I said "sure!" -- mostly because I want off the Dex.  So that does seem to indicate that Dex in maintenance is not used for its plasmacytolitic (i.e. killing plasma cells) properties but because it helps counterract the effects of Velcade (flu-like symptoms, GI issues, etc.)    I will be increasing the dosage of Velcade from the already high 1.3mg/m2 to 1.5mg/m2 (normal is 1mg, and that's for people with raging disease, not the complete remission which I currently enjoy).   And Velcade has caused a lot of GI pain that requires Vicodin to keep at bay...so I'm not looking forward to increasing it.  However, Dex is responsible for a lot of ills so I'll be glad to be rid of it.

So all this would be fine, if a little unnerving...I'm done with maintenance, I'm still in complete remission, I've got some small lesions that haven't resolved yet, and I'm staying on Velcade until they fully resolve.

Except it's not that easy.

UAMS is very advanced in its genetic assessment of the disease.  In an era where most centers still rely on something called FISH (fluorescence in situ hybridization), a test that was developed 25+ years ago to look for out-of-place chromosomes, UAMS uses an assessment of 80 genes which, given its massive database of tissue samples, can indicate the risk profile of a given patient with accuracy.  The test is called a "gene array" or "gene expression profile" and involves a large core sample of bone marrow.  I had four of these done over about a four week period beginning a little before my therapy started in February of 2009 and going a couple of weeks into it.  These tests indicated that I had low-risk disease with some high-risk characteristics, and based on those high-risk characteristics I was given the additional Velcade (1.3mg/m2 versus 1.0mg/m2) in maintenance.  I have not had a gene array done since then because (a) they are painful, and (b) they did not have further clinical significance other than assigning this low- or high-risk categorization.

Until now.  Now they are still painful, but they do have some further clinical significance.

One of the genes they profile is called MYC.  This gene was originally linked to a type of Lymphoma.  Is essentially acts as a "utility infielder" with respect to genetic screwups that cause cancer.  Myeloma cells are abnormal either because chromosomes have been deleted (chromosome 13 is a common deletion that used to be considered a high risk factor, as an example) or added, or because there are chromosomes that have been translocated within a given cell (meaning parts of the cell's genetic code have been swapped).  A common if not typical translocation is 4;14 -- meaning the 4th something-or-other is where the 14th-something-or-other should be and vice versa.  And the commonality of some types of translocations means that there are certain genetic components that are prone to swapping with other parts.

The MYC gene acts as a utility infielder because it can essentially cause any part of the genetic locus on which it appears to swap with any other part.  Having this gene over-expressed is therefore a bad thing.  In the not-quite-four years since I started therapy, they have learned enough to know that it is, in fact, a VERY bad thing.   When I was originally diagnosed and BB was going through the genes with the chief genetic dude in his group, they were puzzled by something.  I had some important low-risk factors, but a puzzling backdrop.  They didn't understand its significance at the time.  Now they do.

This MYC gene, along with the others, is measured in some kind of units.  I don't know the scale, but it looks like, from a review of my data, everything is in the 300 to 1500 unit range.

My MYC genes were between 13,000 and 20,000.

And the significance is this MYC gene can cause a sudden and unexpected loss of remission in low-risk patients that have done well in therapy and are seemingly on their way to being cured.

To wit, me.

And my friend BB (a patient, not the doctor), who unfortunately lost remission about six months ago and has been undergoing absolutely hellish treatment trying to get the disease back under control.  He has been told by BB (this time the doctor), who originally told him he was likely to be able to cure him, that "we are not talking about cure any more...we are talking about control."  And BB (both of them) know the prognosis is dire.  Essentially BB (both of them, but especially the patient) is relying on new agents to be developed so that as current ones fail -- including both Carfilzomib and Pomalidomide in BB's case -- new ones can take their place and keep the Myeloma at bay.

Since my MYC gene is "sky high" to quote BB (back to the doctor now, unless otherwise noted) I am at particular risk for losing remission, and to be frank, losing my battle here.

In short, if the disease comes back, I move from the green line to the blue line.   The Y-axis is remission but might as well be a proxy for survival.

You will see that the green line (hell, I think it's green, I'm colorblind and on a graph of this size I can't distinguish it well...it could also be red, but I know it's not the blue one) is almost flat after three years.   Let's say that 95% of people don't lose remission, among those 148.   But it might be that 10 of those 148 have this MYC gene and 7 of them lose remission.

Unfortunately, that is the sub group in which I may now find myself...

UNLESS the three years of therapy I underwent have caused my genetic profile to change and this MYC is no longer expressed abnormally.

So I underwent several Fine Needle Aspirations of former lesion sites to see what the genetic material in there looks like, and a gene array, and a regular bone marrow.  I will be looking for the results of the marrow (to confirm continued remission and hopefully not to reflect any pre-leukemic cells) in the next couple of days.  It should have been done last week but the sample was damaged somehow -- this has no clinical significance.   They may just have dropped it or it may have been done in a former site where there wasn't enough marrow left to do anything with.   So they are going to use one of the FNA aspirations for this analysis instead.

I will be looking for the result of the FNA to additionally confirm that there are no myelomic cells.  The pits in my spine are not large enough to take a sample from, but they can go to a former site in my hip (which is where they went) for it, so they took a number of samples there.

This brings up ANOTHER problem.  I was told the lesion in my hip (the ilium, for you bone fans) was fully resolved.  But evidently BB and RVH (the guy who does the FNA work and reads MRIs) aren't fully satisfied because there is heterogenous marrow there.  So I may not even be able to be as confident about the lesions I *THOUGHT* were resolved...let alone about the ones that haven't resolved yet.

Anyhow, if the marrow and FNAs are normal, then I will be waiting only on the gene array analysis which will not be ready until Friday.  This will be an important one because it will reveal how extensively the MYC gene is expressed.

If everything is normal, then I breathe easier, stay on Velcade and wait for the lesions in the spine to heal.

If the current marrow is normal but the gene is still expressed, then I have to consider more aggressive therapy -- even though I am still in complete remission.  And I will be scared to death.

If the current marrow is abnormal, then it's even worse.

All this makes the selection of the ongoing drugs that much more important.  If I'm only on Velcade, will that be enough?  After I suggested Pomalidomide, BB said "I'm also thinking possibly Interferon" which was a component of earlier Total Therapy trials but which wasn't demonstrated to have any increase in overall survival -- just progression-free survival.  So it was removed from the protocol in favor of VRD maintenance some time ago...I don't know precisely when but it's out there on the interwebs (sic) for anybody who is really interested.   This makes me nervous...BB normally has an answer for everything and now he is operating on intuition and gut instead of data and protocol, and that scares the crap outta me.

I then said "do I need to do something more drastic, like another round of VTD-PACE."  Long-term readers, as well as other informed Myeloma folks, may recognize this as a cocktail of potent chemotherapy including Cisplatin, Adriamycin, Cytoxin and Etoposide, as well as the comparatively trivial velcade, thalidomide and dex.  BB smiled wryly and said "this was going through my mind as well...this is the problem with you, you know too damn much."  :)    He then suggested that I consider going on anti-depressants as he wanted to be completely honest with me about what he is giving me and why, and that the conversations were likely to lead to a lot of anxiety.  I certainly understand the anxiety part...and I have NOTHING WHATSOEVER against anti-depressants or those who take them.  However, I'd resisted them in the past because I knew I was going to be putting chemicals into every other organ in the body and taxing the heart (Adriamycin), the ears (Cisplatin), the liver (EVERYTHING), the kidneys (likewise, everything), etc.  I wanted to keep the brain as one organ that wasn't targeted for chemical change.  I have also "lost a bit off my fastball" in terms of mental acuity, which is VRD-related and should improve as these meds are reduced or wound down...but I don't want to do anything else to the ol' bean if possible.

Nonetheless, I can't deny that facing the renewed prospect of the sleeping dragon here -- after I thought we'd been going about the process of slaying it rather effectively over the past 3.5 years of aggressive therapy -- is a very disconcerting and stressful thing.  Depending upon the outcome of these marrow tests, I may or may not need to add Cymbalta to the drug cocktail that I will be on.  In the meantime, I shall medicate with mild doses of fermented juniper, grapes and wheat as circumstances merit (usually determined by time of day!)

So my friends, triumph is momentarily replaced by trepidation.  Confidence by anxiety.  Relief by stress.

What remains constant are the love and support of my family, my friends, the readers of this blog, and the team at UAMS -- for all of which I am grateful.

(Addendum: apropos of my recent Churchill reference, he is reputed to have said "ending a sentence in a preposition is something up with which I shall not put."   How does one properly conjugate the preceding paragraph?  I could see "for which I am grateful" except I really want to convey the point that I'm grateful for all the components of support!  Got any suggestions?   This is the type of crap that I think about to keep my mind off my physiology at 5:13AM!)

It's been a sh*t day...so I close with a bit of inspiration

Pardon my borrowing the greatest man of the 20th century, but it's the right expression for now.

This is for you, Jill, whom I love with all my heart.

I am in charge here.  Cancer can kiss my butt.

Disconcerting update from Little Rock...

With my next post, I had hoped to simply catch up on some interesting things that I am late to report -- like the CureTalk conversation, etc.

But this has been preempted.

I remain in complete remission, but the MRI has not changed.  This was, at first, just frustrating...because I know I don't want to stop medicine until those remaining pits have resolved.

Unfortunately, there's more to it.  BB was concerned that they haven't gone away.  Not only out of principle, but also because they have learned more about genes in the last four years and one of the genes that was expressed in my myeloma is something called MIC and that can cause "sudden and unexpected loss of remission."   This is what happened to my friend BB (not the doctor, but with whom I had dinner the other night here) and that BB was low-risk, and suddenly lost remission, and now has high risk disease and a pretty grim diagnosis, though he is fighting and there is always hope.

My disease has the same propensity to do that.

Now the MRI didn't change -- there are still five residual "small" lesions in the spine.   They are too small to be aspirated.  But the former region in my hip -- which was fully resolved but which Bart says indicates some potentially undesirable marrow characteristics -- is large enough for them to stick a needle in.

So I agreed, provided they are knocking me out.  I discussed with BB (the patient, not the doctor ) that FNA doesn't stand for "fine needle aspiration" but rather for "keep that F*@#ing Needle Away from me!"  :)    

Regardless of outcome, I will continue on Velcade at a higher dose than before.  He is okay with me dropping Revlimid because he is concerned about secondary cancers at this point, particularly given my squamous cell carcinoma and the preliminary myelodysplastic cells in my marrow from last time.  He is okay with me dropping dex so long as I can tolerate the Velcade.  But the Velcade continues.  I can get it subcutaneously, so that's something, I suppose.

If the FNA shows something, then I may be looking at another round of the original chemo -- VTD-PACE.  Not something I'm looking forward to, but if it's necessary, I'll do it, I guess.

He said he is now taking me off protocol and "going out on a limb" but "we're in this together."

That's not what I wanted to hear.  I wanted to hear "the myeloma is gone and will not be coming back."

I have so many concerns, I don't know where to begin, really...among them, will I ever be confident that this is really gone forever?  I suppose if all those lesions resolve and the marrow returns to normal, I can be confident.

I'll need to come back here for more testing, almost certainly, at some point in the next few weeks.

My thoughts are scattered...apologies for the incoherent post.  Pretty shaken right now.

Your humble narrator appears on CureTalk soon...

Welly welly well, my brothers...

Obscure Clockwork Orange references aside, I am participating in a panel that may be of some interest to you and I've been asked to pass the information along.

Cure Talk is an online resource / community that compiles and coordinates information on new treatments and potential cures for various types of cancers.

They are hosting a panel on 8/22/2012 at 1PM eastern time, which is free to participate in via conference call.  The featured expert on the panel is Dr. Ravi Vij, from the Washington University School of Medicine in St. louis, where he is focused on stem cell transplantation for hematologic malignancies.

I am on the panel, along with fellow Myeloma bloggers Pat Killingsworth, Lori Puente, Karen Crowley (Adventures of Cancer Girl), and Gary Peterson (the editor of myelomasurvival.com).  Also on the panel are Kimberly Blozie, a clinical researcher, and Jennifer Myers a guest blogger with Cure Talk.

You can read more about all of us here.

The call starts at 1PM on the 22nd and lasts an hour.  There will be opportunities to address questions both to Dr. Vij and to the panelists.

I hope some of you may find some value in joining us!

Much improved, thanks for asking!

Hello folks.

Thanks to those who have asked for an update!

* My fingers continue to improve but aren't there just yet.  My surgically mangled one can now be used but is still very tender -- I therefore still bandage it most days, albeit just with a band-aid now.  I'm hoping that in a few more weeks (months?) it will return to normal.   There's a funky piece of scar tissue that almost looks like a small fingernail...if that stays put, I'll perhaps not need any kind of skin graft to make the wound look better.   I will post a picture at some point.

* Speaking of posting pictures, the rest of my fingers look MUCH better than they did before -- no more spotting, and the skin has more or less healed in the majority of places.  I will post before and after pics here -- they will be considerably less jarring than the picture of the recently-operated-upon finger I had a few posts ago.  :)

* I noticed recently that a UAMS presenter spoke at the ASH (American Society of Hematologists) conference in 2011 and said that myelodysplastic syndrome (a precursor to Leukemia) is a concern for people on long-term Revlimid.   The presentation itself can be found here.  Since I looked like I had MDS in my previous marrow (even though BB said this wasn't the case) I'll be monitoring this carefully.  It means I'm a little reticent to continue Revlimid therapy...but we'll see.

* On the other hand, this article (from BB himself) seems to indicate that MDS is not that big a concern for me from the transplants themselves.  Risk factors apparently include low yields from the stem cell transplant, older age, and slow platelet recovery post-transplant -- I didn't have an issue with any of these factors.

* I'm returning to Arkansas in six weeks for the next staging, at which point we'll discuss continuation of maintenance therapy in light of the above, the holes in my spine, and this study, tantalizingly called the "Myeloma Cure Project", that BB has been conducting since 2009.   That study compares the outcome of the original Total Therapy 4 maintenance protocol (and previous maintenance protocols) with one in which Revlimid is continued in 10mg doses indefinitely (versus the 15mg that I am now on).  On this topic, I find it a bit curious...BB had told me with respect to TT4 (which randomized people into either the standard or a "lite" protocol with one less cycle each of induction and consolidation chemo; I was in the latter cohort) that we would not randomize if he thought there was a difference in outcome.  In other words, he would never test people on less medicine if he thought it would mean the treatment wouldn't be as effective.    So...that calls into question the current study.   Is he putting people on indefinite Revlimid to show there is no difference?   Or has he reconsidered his previous stand?   These, and other questions, will be asked in September.

* Just being off meds for two weeks while my hands were being allowed to heal was a boost to my energy level...I have to say I won't mind a dose-reduction or cessation!   Although the GI issues persisted...I'm beginning to worry if they will ever resolve.  : \

I will end this update as I began it -- thanks to all of you for following this humble blog and for your well-wishes!

Best,

Nick

Back to work

I posted bail yesterday and got out of the hospital.  

We still don't know what is going on.  The spots on my fingers seem to be improving, but the fingers are still numb and, when they have feeling, tender.

We have ruled out shingles or any related viruses, Stevens Johnson (thank god), and a bunch of other nasty stuff.  But the infectious disease and myeloma people think its vasculitis, while the rheumatologist (who specializes in vasculitis) doesn't think that's what it is.

We shall wait for the biopsy.

Meanwhile, back to work today!   I will keep you all updated as soon as I know.   Thank you for your concern!

Mini update

Today began with somebody wanting to do a punch biopsy on one of the lesions on the back of my right hand, which they have already scraped for pathology three times. I finally put my foot down and said I would be happy to submit but only after I understood why. I have been sitting here for almost two days now with an IV full of antibiotics and antivirals that have done nothing. The lesions have now shown up on my feet as well as my hands. They look like red dots that range from a pinprick to maybe 3mm in diameter. My beloved Dr. PZ came by. He said he concurred with RV and the folks in Arkansas that it was likely vasculitis. In his very calm way (this is, after all, the guy that said "myeloma is a malignancy of the blood" four years ago) he said that vasculitis was an autoimmune disorder that was usually treated with steroids. The pattern of lesions doesn't match viral presentation, evidently. He explained the biopsy would affirm the vasculitis if it was positive. So I submitted. As for the biopsy itself, the lidocaine shot hurt quite a bit for a few seconds, and the biopsy itself was painless. They put a couple of stitches in as with my low platelets and unpredictable healing capabilities it was bleeding pretty profusely. My question, now, is this: what else could it be, and why not treat for vasculitis at this point so I can start getting better? The treatment for vasculitis is steroids (prednisone, which is about one fifth the strength of my not-so-beloved Dex). That much I can handle. If it doesn't respond to steroids, the treatment is Cytoxan, aka Cyclophosphomide, aka the C of the VTD-PACE chemo regimen that I have already had twice. I do not want more Cytoxan. I do not want it, Sam I Am. I do not want it on a train, I do not want I on a plane. I do not want it in a house, I do not want it with a mouse. I do not want it in my arm, I am concerned that I will harm. I rather like this hair of mine, it will not help repair my spine. Etc.

"Fingles"...or "The Myeloma Dream Team"...or "Another Triumph for Self-Diagnosis"...or simply "OUCH"

Well, where to begin. I guess the place to begin with is...it wasn't peripheral neuropathy. I suppose I should feel good about that...I was already concerned that it was very painful and wasn't going away and would impact my ability to play golf, guitar, piano...or even type. My pecking away right now is pretty uncomfortable, actually. But as it happens, I am typing this from a hospital bed at Cedars Sinai. I went golfing Sunday morning and it was exceedingly difficult to play. While I normally welcome an excuse, it really hurt like hell. I had to pop several Vicodin to make it through the round, which I don't like to do either. But it was after the round of golf that the trouble began in earnest. We went to a birthday party for the adorable little 4 year old daughter of our dear friends and Jill noticed discoloration on my fingers. A little bell rang in my head. You see, every month that goes by, I get a new bottle of Revlimid and I have to answer a new questionnaire about the drug and its side effects. And one of these side effects is called Stevens Johnson Syndrome, which is rare but potentially life threatening and starts with a discoloration or rash on the skin. A quick google search lent just enough credibility to this (the photos looked worse but not a LOT worse than my fingers) so we sped off to the ER. To make a long story short, I have been here 24 hours now, they have pumped me full of antibiotics and antivirals. They have taken blood multiple times, urine, and goop from one of the blisters on my fingers (cue Ringo Starr). They have come into the room every ten minutes, just about, making sleep difficult but I appreciate their attentiveness. I have had an EKG and a chest x-ray, I am scheduled for an echocardiogram, and they keep threatening a biopsy of some kind or another. But nobody will tell me what I have or don't. They won't even rule out Stevens Johnson yet. I have been visited by three doctors on staff here, plus RZ who is an infectious disease specialist and the colleague of doctor PZ, who diagnosed me. I like RZ. She knows her stuff. And when pressed, she thinks it is unlikely that it is Stevens Johnson -- that is at least SOMETHING to hang my hat on. But it is not satisfactory. I would like to know what the heck is going on and when it takes 12 hours to get a red blood count out of these folks, the blood cultures are going to take too long. Meanwhile I have no idea how serious this is... I told the folks I wanted a Myeloma specialist to look, since they might have experience seeing this as a side effect of Revlimid. I suggested RV, who is on staff here and is excellent...even though i have never seen him and having him come by to check out a skin condition that is a possible side effect of treatment is overkill, like having Wolfgang Puck make a sandwich for you. But i think he is the best on staff here, so why not ask, right? The other thing i did was send a picture to the awesome folks from Arkansas. Thirty minutes later, the Arkansas opinion is that it is vasculitis. As we were looking that up, RV came by and he said that he had never seen this type of reaction, but it could be vasculitis. That sounds like a convergence of a diagnosis. If true, it means all the antivirals and antibiotics aren't gonna to squat. RV explained vasculitis is when the immune system identifies one's own veins as invaders and tries to destroy them. Doesn't sound like fun. DOES sound like something Revlimid can do. DOES sound like something my poor tweaked immune system could do. The treatment is steroids (yuck) and Cytoxan (double yuck). I guess the next step is to confirm this is what's going on...no clue how to do that yet, although I have asked that RZ speak with one of the folks in Arkansas. At some point, somebody will come back in here and I will ensure they are continuing to pursue this line of thinking. I felt so good three days ago...this really sucks! And yet, I am always mindful of how fortunate I am. For example, today I had two of the top ten MM doctors in the country weighing in on this. My primary care physician is one of the leaders in infectious disease (every doctor is still amazed that he is my PCP). And I was educated at UAMS to be an empowered and informed patient, asking questions and offering opinions. I am thankful for all of that. And thankful for Jill, who slept in a cot by my side last night. So...here's to caregivers and the medical community! And to being thankful for what we have. And for an end, soon I hope, to this hospital stay. More news as events merit.

New Ropathy

Well, this stinks.

Three years into therapy I'd never had more than a tiny tingling in my toes.  This would go away nearly as soon as it came, so I figured I was just lucky.  I had told BB about this and he surmised that some people are physiologically disposed to neuropathy, while others are not.  So when I had a little bit in my feet, I figured it would go away, and all would be well.

Well, I've got it pretty bad in my fingers today and it's terrible.

I had noticed trouble in my right thumb after the surgery to remove the carcinoma on my right index finger.  The doctor thought it was a dressing wrapped too tight that impinged a nerve.  Even then, though, it felt a little numb but not painful.

Yesterday, I banged my thumb against a large binder on my desk.  It hurt last night but even then, I assumed it was just sore from banging it.

Now, both thumbs actively hurt and I can't use a remote control for fear of too much pain.  Both index fingers are the same.  The rest of the hands are okay for the moment, so I know it's the one nerve in each hand that affects both the thumb and forefinger.

This is very disconcerting...it's actually quite painful.

We'll see how this goes.

My "Tough love" interview with CureTalk

Hi folks.  Hope you are all well.

Not so much an update, but I did want to let you know that I was recently interviewed by a website called CureTalk, who has published it here.

I will warn you that while some of you may feel I am an unabashed UAMS apologist here, I do try to keep a pretty even keel when discussing therapies and I *never* want anybody with this disease to feel that on this blog I challenge or disapprove of their therapeutic choices.  This disease belongs to each of us, and we each much make decisions on our treatment based on our psychology, our physiology, our age, our outlook, the specifics of our disease, and other considerations.

At any rate, in this interview, I don't pull any punches.  I do believe MM can be cured, and I do believe UAMS has the best chance of doing so.  That still doesn't make it right for everybody, but it did for me.

Have a good weekend!

The finger-spine-shoulder-reimmunization-maintenance update!

Phew, that's a mouthful.  But I figured one day I (or others, perhaps) might want to search for some of these key words so I threw them all in there just for kicks.

It's been a busy stretch at work the last couple of weeks -- finally coming up for air here and thought I'd post an update on a few things.

First, my finger.  Still pretty sensitive and still some numbness both with the index finger and the thumb.  No real change there.   The finger looks better, but still pretty ugly.  It's been nine weeks today, I think...and I can't really say it's "healed" as there is still some ugly looking flesh there.  Essentially it's going to look rather unappealing aesthetically.  But as I remarked to somebody, if five years down the road I've beaten Myeloma and the worst that happens is I lost an inch of height and my right fingernail, it's a small price to pay.   One day I might consider a skin graft to make it look a little less creepy...but I don't want to do that until

On the beating Myeloma front, a couple of things.  I've found the Velcade is more and more difficult to tolerate.  My body is getting sick of it.  Mind you, I've been on a 30% higher dose than normal, even for Arkansas standards.  The rationale for this is (a) the "proliferation subtype" of the disease I had which is a hallmark of aggressive disease, even though I have other "subtypes" that mitigate the risk somewhat, and (b) the fact that this darn 4mm formerly-active lesions in my bones haven't gone away yet.  So I stick with the heavy Velcade dosing and also monthly Zometa, and we'll do another MRI in September.

I have been doing physical therapy for my shoulder (I can't recall if I even posted this here, but the Dex atrophied the muscles in my back responsible for keeping my right shoulder blade in place and it is "winging" around in front of my which is impinging some muscles in there and causing a good deal of pain.  Or it was, anyhow.  Physical therapy is definitely helping (Pilates, twice a week).  I thought Pilates was for flakes and models that don't need to lose weight.   Not so.   It is a BRUTAL workout.

I've been spending a little time conversing with other patients online and learned that Dr. GT (now Idaho, formerly Utah, and before that a long-term colleague of BB's in Arkansas) does have a clear point of view on reimmunization and it's one that I can wrap my arms around because it's quantitative.  When my CD3 and CD4 counts (both related to T cells, a good market of my immune system) have recovered to above 500, GT recommends reimmunization.  This is also the threshold for discontinuing use of Acyclovir (I don't want to get Shingles again, I'll tell you that much!) and that, too, makes sense and gives me something to track.  UAMS, of course, tracks these in all my bloodwork.  They are pretty suppressed right now -- which is a function of long-term recovery from the transplants, but more likely Revlimid and, potentially, Velcade, both of which suppress white counts.

So that, at least, gives me a framework to operate in for both those topics.  Something to discuss with BB.

I was contacted again by a fellow UAMS patient a couple of years ahead of me on the timeline (six years now, no recurrence).  This person was kind enough to share his knowledge of the "extended maintenance" test going on right now.  Essentially, BB is randomizing another THREE YEARS of low dose Revlimid (5mg) versus dropping maintenance.  I'm curious about this, since BB told me years ago that he doesn't randomize unless he's certain there's no difference in outcome (otherwise he would put everybody on the arm that he felt helped).  So I want to talk with him about his perspectives on that.  The original "cure curve" done for TT3 did go out six years.  That's the point where everybody breathes easy.  As it happens the TT3 curve for people that achieved complete remission appears to bottom out at four years.  The difference here is, I think, attributable to patients that have a functional cure in an MGUS type state (very low residual M protein that is of "undetermined significant" and which is seen in about 3% of the population.   In other words, people that have residual M protein might take six years before they can be assured of being cured.

This raises an interesting point because it will be the first time in more than three years that I really have a decision point in terms of my therapy.  Do I really want to discontinue Velcade, even thought it's becoming more and more difficult to tolerate, before those 4mm lesions are fully resolved with new bone?  Not really.  I'd like to stay on it until they're completely gone if need be.  Do I really want to randomize myself into a protocol?  I don't know...I think I'd rather look at the data and decide what I want to do.  Do I really want to entertain three more years of maintenance?  Maybe.   Jill and I spoke last night to make sure we don't want any more kids...if I'm on Revlimid we're not going to be doing that for potentially another 3.5 years by which time I think it would be a lot to expect of Jill and other family members.  These are the types of things to think about -- and the types of things which older Myeloma patients don't necessarily have to grapple with.

My plan right now is to ask Bart for a lot of data...I will dedicate a future post to what I'll be looking for.  And I want the time to digest this and determine what, if anything, to do.   Meanwhile, 10 more Velcade infusions to go before the end of scheduled maintenance.  Hah...I sound like an online service that has planned downtime!  :)

Happy Birthday to me...

I don't have too much to report, but I turn 44 today, which is now officially over the lower limit of the 3-5 year life that I was told by at least one doctor I could expect when I was diagnosed at the age of 40.

I'm pleased he was wrong.

Time -- and the next MRI -- will tell where I am in terms of being pronounced "cured" and whether or not I can discontinue therapy.  But so far, so good.

My finger is still messed up but healing, albeit slowly.  I now wear a simple band aid covering what is left of the wound.

I'm watching a rather dreary webcast of some recent Myeloma research that, as many Myeloma discussions do, treats recurrence as inevitable.  I'm pleased my doctor doesn't subscribe to this point of view.

Life is good.  I'll be glad when I can get off these meds, and I can rebuild some muscle and lose a bit of weight and get some energy back.  But life is good indeed.

I hope you all have great weekends!

Quick update and an interesting article on curability...

Update one:  the no-Ativan lifestyle does return some mental acuity and energy, even if I am still largely exhausted from time to time due to irregular sleep patterns.  I took an Ambien on my last Dex night and got solid rest; I'm afraid to overdo it but one night a week is almost certainly harmless.  I was less sluggish than I thought I would be, though a large cup of joe probably helped in that regard.   I have never been a coffee drinker, but I must confess it did make a difference so I can see using it from time to time.  The prevailing medical knowledge at this point in time is that it's good for you (this changes constantly, it seems) for what that's worth!

The finger continues to heal and it seems like it is getting better day by day, though last night Parker looked at it and said "THAT is what you call BETTER?"   :)    It's still pretty ugly looking...goopy and red.  Looks like some skin is trying to form.  It will be four weeks tomorrow and it's not looking like it's going to be healed any time soon.   Additionally, the numbness in my thumb appears to extend to the forefinger (I have been brave enough to gingerly test for this) so that nerve impingement has yet to resolve.  I sent a photo of the finger and note of the lingering impingement to the surgeon who dug the cancer out, and no response this time (last time he said no worries, looks good, etc.) so I assume it is steady as she goes.  Will send him another picture in a few days' time.

After three years, have finally resolved to take Immodium with some regularity to attempt to establish some regularity.  By which I mean much less frequency.  I didn't want to put my GI tract in a tug of war between competing medicines but it's just become too much to deal with.  I probably should have done this a while ago.  I am just hoping things will return to normal when all these meds are done!

Lastly, I came across a very interesting article published in Haematologica, which is a European periodical.  It's a study done by two Spanish doctors.  It is notable because it says that 3-10% of autologous stemcell transplant patients can be considered to be operationally cured.  This is in line with Arkansas' results from Total Therapy 2.  Total Therapy 3 has been vastly more successful, and Arkansas claims cure rates in excess of 50%, and higher still for low-risk myeloma.

It's terrific to see another crack in the wall of the "incurability" facade...hopefully with more time and published data, more people will open their minds to the notion that aggressive treatment can cure this affliction.

http://www.haematologica.org/content/96/9/1246.full

I hope everyone had a reflective and happy Memorial Day!

Plant vs. Zombie...

Another pop culture reference...Plants vs. Zombies is an extremely popular game for mobile phones.

As I tell the wife, the best jokes are the ones you have to explain!  ;)

Anyhow...

I've been feeling listless for, oh, I dunno, six months or so.  I've been taking Ativan (Lorazempam) to help me sleep soundly.  It's worked pretty well...I don't wake up feeling like I'm the walking dead, as is the case with Ambien.  And yet I get a solid night's sleep.

Unfortunately...it does drain me of any will to DO anything.  I feel like any effort is too much.  I can, on a weekend, muster up a round of golf...though truth be told even then I feel like 16 holes is plenty.  That's not good news for somebody fairly young (43) and hopefully living every day to its fullest insofar as I am hopefully cheating death.

Turns out Ativan is essentially Valium.  That would explain it.  

So it seems I can either not sleep -- and be a zombie -- or take Ativan -- and feel like a potted plant.

Hmm....

I think I vote zombie, at this point.  It gives me more drive at work, even if I feel like collapsing from exhaustion.

In any case, a high class problem considering I could be pushing up daisies right now.

In other news, the finger hurts like crazy still, although it just now appears to be starting to improve.  The doc said it should show no signs of improvement for two weeks but I can see the flesh starting to try to fill in the gap were it was dug out.  I'm sure it will be another month before it is presentable but I'm glad to see something happening, given how painful it is.

There has been news in the last week about Revlimid being linked to secondary cancers, including carcinoma...I'm sure this was put in action by the hatchet job that quack dermatologist did to me (I have dubbed him "The Butcher of Encino") but the Revlimid probably didn't help.   More on that, perhaps, in the coming days.

DON'T FORGET TO CALL YOUR MOTHER!!!!   :)

A bit of finger...

Pop culture reference: that's the name of a brief little instrumental interlude on Black Sabbath's 1970 eponymous debut CD.

Good old Ozzy...once every parent's nightmare, now the staple of NFL background music and 8th grade marching bands everywhere.

If my friend Gloria B is reading this, hello!  :)

I digress.

So, clever post titles aside, I thought I would bring you up to date on the finger situation.

I went to Arkansas last week to have a Mohs procedure done to my right index finger.  In this procedure, a chunk of flesh is razored off and then sent to pathology.  They check the margins of the tissue to ensure that all the cancer has been cut out.  If the first cut didn't accomplish it, they repeat the procedure until the edges of the tissue are completely clean.

The wife and I arrived in time to have dinner with BJ, Dr. BB and his wife KB.  A wonderful time was had by all and BB did not disappoint.  We were eating outside when he and his wife arrived...he shouted a greeting which made his wife jump about ten feet in the air.  He had some interesting jokes about misuse of my finger and how that could have resulted in this condition.  But he then turned serious and asked who would be doing the procedure (a great doctor, SD, whom he confirmed was a good choice) and who would be reviewing the tissue.  He then called his friend who ran pathology and asked him to personally review the tissue samples, which is just another example of how extraordinary BB is.  I love that man.

The next day, they chopped and chopped.  It took four separate passes at it before they got the cancer.  I was staring at my finger bone (I think) at one point, given how deep the cut was.  Pretty gnarly.  They removed the nail for good (Jill said that they literally just pulled it back towards my wrist until it popped out...yuck).  I was given a lot of lidocaine by injection into the finger so thankfully I felt nothing...at the time, that is.

I had a comically large bandage on my finger:

I changed this dressing last night, after five days.  To say it hurt is an understatement -- it was EXCRUCIATING.

With apologies to the squeamish, here's what's left of the finger.

OUCH!!!!

The nurse reviewed the photo and said it "looks fantastic."   I would hate to see what something that DOESN'T look fantastic is.

Anyhow, I am told 6-8 weeks for a full recovery and 99% chance that the procedure got all the cancer, so we'll see.  Right now it's VERY painful and I'm on a fairly steady diet of Vicodin, which I'm looking forward to discontinuing as soon as I can.

Well, DAMMIT...finger problems

No sooner did I post my previous update than I got a call from the dermatology clinic at UAMS.  Very likely that my finger biopsy revealed a squamous carcinoma that needs to be removed with some urgency.

Unlikely that this will spread, and unlikely that I will need the Ronnie Lott treatment.  Nonetheless, unsettling.

Here's a frightening abstract from 2007:

Squamous cell carcinoma arising from the nail bed is not common. This condition can be easily misdiagnosed, especially if there is preceding trauma. We present here a case of squamous cell carcinoma of the right thumb in a 70 year-old man. The distal phalanx and part of the proximal phalanx were also involved. We performed a disarticulation of the metacarpophalangeal joint of the right thumb. The wound healed well. If an early diagnosis is made, then Moh's micrographic surgery or wide local excision with the use of a local flap could be advocated. In late stages, amputation or disarticulation is the treatment of choice.

I'm VERY happy the UAMS people diagnosed this relatively early.  Once again, they are vigilant.   The whole late stage thing above is VERY disconcerting.

In contrast, I'm not very happy with my LA dermatologist right now.  Revlimid didn't help but the cause of this was the trauma from his treatment.

Grr....

Was hoping I would only have to beat cancer once, but the disease continues to foolishly pick on the wrong guy.

Arkansas update...all (pretty) good...

Hello folks.   Spent last week in lovely Little Rock.   Several goals, with mixed success:

1.  Eat a pizza at Dam Goode Pies.   Check.

2.  Eat a pulled pork sandwich from Whole Hog BBQ.   Check.   With volcano sauce, for those completists playing the home game.

3.  Good PET scan affirming that the pain in my shoulder is not cancer.   Check.

4.  Good MRI affirming that the four lesions in my spine have fully resolved, at which point I will achieve what is termed "ACR" for "Arkansas Complete Remission."  Ch....uhhh....not so fast.   The four lesions (in my thoracic vertebrae) remain unchanged from six months ago, which means they are unchanged from six months before.  There is no cancer activity, but until these refill with new bone, they remain a microenvironment where the cancer can restart.  I do not want that to happen.  My friend BB (not to be confused with the good doctor) recently had a full-blown relapse occur...he was in my same situation: low-risk disease, good prognosis, responding well to therapy, complete remission...and yet his original lesions hadn't fully resolved and one of them started back up again.  He now has high risk disease and is refractory to just about everything...although Pomalidomide (next-gen Revlimid) appears to be working, thank God.   So...basically I'm pretty bummed that the lesions are still there.  Dr. BB prescribed more Zometa and I will have to be more militant about getting it once a month.

5.  Good bone marrow confirming the absence of Myeloma.  Check.  But, uh...something not so great going on.   As I'm reading the pathologist's report, I was happy to see 4% plasma cells in the marrow aspirate, 40% cellularity in the marrow, and negative for plasma cell Myeloma.  All good.  But seems I am NOT so negative for dyskeratosis and dys-somethin'-else, and that means that according to the pathology report I have myelodysplastic syndrome.   What is MDS, you ask?  Well, remember all those stories about Revlimid causing secondary cancers like Leukemia?  MDS is a precursor condition to Leukemia.

Gulp.  Not good.

Jill wisely counseled me to calm down until I could speak with BB about it, and although we were both quite worried, we did wait...and wait...and wait.   When I saw BB, he got up to give me a hug and asked how I was.  I told him I'd be doing better if the damn lesions in my spine had resolved, and I didn't have MDS.  He ignored the first part and dove into the pathology report on the marrow.

What he said MOSTLY put me at ease.

"This damn pathologist...first s/he doesn't see this ever and now f***ing everybody's got Myelo-dys-f***in'-plasia!"   (note obscured pronoun to protect the identity of the poor pathologist, and barely-obscured profanity to convey the character of my doctor without offending too many people)

BB went through the detailed "cytogenetic analysis" of the marrow which looks at things on a gene-level.  He said there is nothing there that would indicate myelodysplasia.  He said the therapy itself can make things appear as though there is myelodysplasia simply from the shape of the white and red blood cells.  So...yeah...I guess I don't need to worry?  : |

6.  My finger confirmed as no big deal.  Uh....not so much.   I saw a different dermatologist who saw the fingernail and said it could be a squamous carcinoma (which could become melanoma) or it might already be melanoma.  So I was rushed to a biopsy where they removed half of my fingernail (split down the middle, the right side of my right index finger has no nail) and a chunk of the nail bed (the puffy part of the flesh just closer to the knuckle than the cuticle).  It's been a wait and I am still waiting for the results.  If it IS cancer, they'll need to take out a bit more.  I hopefully won't need to be given the Ronnie Lott treatment!!    If it's NOT cancer, then I still probably have to deal with the fact that I may have no fingernail on half my finger, which sounds uncomfortable.  But I have friends who have lost the use of their arms from this disease, so I can't complain too much.

Separately, I am growing concerned than my use of Ativan as a sleep aid is interfering with my energy level during the day.  I am discontinuing it for a bit to see what happens...other than sleep deprivation.  I started at the ceiling last night and got no sleep whatsoever!   I know I need my rest...but I also need focus and energy and joie de vivre during the day.  Yet another choice in treatment!

Thanks to all of you for sticking with me and checking in to make sure I post an update.  I appreciate every one of you!!

Gadzooks it's been a long time! Sorry folks! :)

Thought I better drop by and let you know I'm still alive and kicking!   The demands of my job have risen of late and have kept me very, very busy...so I do apologize but there are some interesting things to report.

I continue to tolerate my meds reasonably well...I continue to remain in complete remission...I will get another course of Zometa next week along with my Velcade and then it's off to Arkansas the second week in April to get poked, prodded, analyzed, scanned and written up.  We're looking for those little teensy pits in my spine to go away, at which point I believe I will be in MRI complete remission.

As I write this, I note my friend BB (not the doctor, but the patient) was very, very close to this...with only about three small lesions that were remaining and were resolving...when he lost remission.   He is now continuing the struggle, having ruled out Carfilzomib because of his liver's inability to tolerate it, and now trying Pomalidomide.  His spirits remain high and he inspires me...but his is also a cautionary tale indeed.  Not everybody maintains remission.  Even in the low-risk cohort, which he shared with me, people do lose remission during those critical three years.  Until I'm past that four year point, really, where the curve does appear to flatten, I will have a bit of a sword of Damocles over my head.

As far as other news to report, we have figured out what was wrong with my shoulder!  Regular readers (if any of you remain, given how long this update has taken) will recall that I felt a pain in my shoulder about six months ago, and was originally concerned it was tumors reactivating.  I got an MRI and ruled that out, tried some massages that didn't help, got a massage from a person that was a physical therapist who suggested it might be a rotator muscle.  Went to an orthopedist who gave me a shot of cortisone in the shoulder where this rotator muscle emerges from behind the shoulder blade.   Boy did THAT suck.   It did nothing whatsoever at the time (beyond the needle pain which was moderate, not horrible) but that night it was like I had awakened a sleeping devil and he was really irritated that I'd interrupted his sleep.

The orthopedist said I needed to go to a physical therapist, and I fortunately found one who really understands shoulders.  He immediately knew what muscles were the problem (the superspinatus and something else underneath the shoulder blade).  I've been a few times and it is helping, but the kicker is...in conversation he mentioned this is common for someone on steroids.

Dex is the culprit, ladies and gentlemen.   It has destroyed the muscle tissue on BOTH sides of my shoulders, so I can expect to have to rehab the left one soon enough.  The pain on the right is bad enough where I still use Vicodin a few nights a week to ensure a good night's sleep -- and in fact the mildly constipating effect of the narcotics help counterract some of the other meds so I'm afraid I'm becoming accustomed to having one of these pills each night, between the gastroenteritis caused by the Velcade and the shoulder pain and the GI issues, they are kind of a godsend.   Plus they make a guy sleepy.

When this is all over, I will eventually cut out the Ativan and the Vicodin...I'm staying away from Ambien because they left me a zombie in the morning but 1mg a night of the Ativan is enough to make me drowsy.   It's working, I ain't gonna change it.   Hopefully I won't end up on a future poster for Reefer Madness: 2012.

Eye on the Prize

Well folks I'm so far behind here and I'm very sorry about that!   I do have stuff to post as I said before, just been busy.   The highlights, if I had to put them in bullet points:

* Velcade gives me gastroenteritis weekly now.   Not pleasant.   Managing pain with Vicodin as needed.  Annoying, but I'll live with it.

* Very interesting debate on curability with BB representing the cure side and a very smart Mayo doctor representing the non-cure side.   Finally heard the non-cure argument: they don't believe the line in the Arkansas recurrence curve flattens.   Bart says they are looking at old data, and it does flatten.  Simple as that.

* Mindful that it's no guarantee, I should mention a good friend of mine, also BB (but not the BB who recently passed away) was in the same boat as me and has lost remission.  This is not very good news, as it means his disease is now resistant to Velcade and Revlimid.  But BB is sticking with BB who will have a plan.  Meanwhile, fingers are crossed!

* I've also noticed that the curve doesn't flatten after three years of therapy...it's mostly flat there but the real plateau isn't reached until about four or maybe a bit more years of maintenance post-remission.   I had been thinking about how long I wanted to continue with the meds...I don't like the side effects but I also don't like the thought of a few cells not getting with the program (see my previous bullet point) and causing trouble after I let up.   So I'd been toying with the idea of asking to stay on maintenance at least one more year after my three-year anniversary comes up.

With this in mind, a reader with whom I have corresponded before emailed me today to say that he's been able to stop all therapy after 4.5 years of maintenance.  He was told, in that beautiful definitive way that only BB can deliver, that "your myeloma is gone and IT WILL NOT COME BACK."

BB is not cavalier.  He doesn't say that until he's sure.  That's the prize though...and my eyes remain on it.  So with every little bout of gastroenteritis or other GI issues or a botched fingernail that won't heal, I keep focus.

Happy New Year and good health to you all!   More to come soon.