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Calling all homeopaths...or, Peruvian mojo powder?
A friend of mine was talking about something called Maca powder. It's evidently a root similar to a radish grown in the Andes. And apparently it is very potent stuff. Many benefits but chief among them promotion of libido. And there are legitimate scientific studies in both lab animals and humans that prove this out.
Of course all the hippie dippie websites that promote herbal remedies likewise promote this particular thing. However I'm willing to consider this one provided it (a) works and (b) doesn't conflict with any of the cancer therapies I am on. I'm prepared to accept item (a) above as a given (or in any rate, I would find out quickly) but item (b) remains an issue. I will ask BB and crew about that next week but in the off chance anybody here knew anything, I thought I'd mention it.
Other questions for BB and his crew next week: what's with this residual bone pain, how does the MRI look, how are long-term revlimid studies looking (BB is testing whether or not continuing with Revlimid in lower dosage after the three years of initial maintenance are over is beneficial), and what is the latest thinking on re-immunization.
Anybody else think of anything I should ask? :)
Hope you are enjoying your weekends!
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Crampwatch 2010...
Haven't had Velcade or Revlimid this week.
Split a delicious bottle of Cabernet last night (a 2006 Vineyard 29, for those playing the home game) with the wife. Dozed off watching TV and dragged myself to bed upstairs when I woke up. Didn't think about taking the magnesium...
Big mistake. Six AM wake up call from a cramp in my left calf.
Looks like I will need to take that stuff for a few weeks, at least, until all the Rev is out of my system. And even then, I'll probably be afraid to go to sleep! I'll be like the kids in Nightmare On Elm Street...
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Ongoing GI issues...
I am happy to be off meds for a couple of weeks right now. Velcade interferes with the bone marrow biopsy process so I halt Velcade a week before my visits to Little Rock. Revlimid requires aspirin to combat the potential side effect of deep-vein thrombosis, and aspirin thins the blood, and they don't want thin blood before any surgical procedure, bone marrow biopsies included. And dex, I suppose, is a rounding error in this mess. So I'm off VRD for two weeks -- the week before the tests and the week of the tests. A time for my white cells and platelets to recover -- and maybe even a chance for some of my IgG to recover, which is odd considering I was so consumed with suppressing it and eliminating all the bad protein there.
In fact, it's been some time since I've been concerned about Myeloma, per se. I really don't expect to see it again. Of course I am waiting for the formerly active lesions in my bones to heal, and next weeks' MRI -- as dull as that process is -- will be interesting to see. I do not think they will have knitted but some progress should be seen, I hope!
I must confess I am getting extremely tired of the constant diarrhea. Most recently I thought this was an impact of the Velcade and that I'd experience some relief when off it, but no such luck. I looked to see what I'm still taking -- aaah, Magnesium. The reliever of those awful leg cramps. Turns out causes diarrhea.
So to recap:
Velcade - causes diarrhea AND constipation Revlimid - causes diarrhea AND constipation, particularly in combination with Dex Dexamethasone - causes diarrhea Magnesium - causes diarrhea big-time Acyclovir - causes diarrhea Lipitor - causes diarrhea
So, really, WTF?!?!? COULD I POSSIBLY BE EATING ANY MORE TO WRECK MY GI TRACT? AM I REALLY SURPRISED THAT I AM HAVING PROBLEMS?!?!?!?! :)
Not sure what to do about all this, but I'll ask BB and team next week. I'm not getting rid of the Magnesium -- those leg cramps are the worst. So maybe I'll just add Immodium to the mix and hope for the best. But I'm a little concerned that things may never be the same. Particularly since, according to studies on long-term Rev-Dex use, the worst may be yet to come:
Update from recent studies: Increased diarrhea in patients taking Revlimid-dex for an extended period of time (>8 months) - In studies with more than 700 patients, patients taking Revlimid-dex for more than 8 months experienced significantly more diarrhea than patients taking dex alone (39% vs 28% with dex alone).
- In the majority of patients, diarrhea started after taking Revlimid-dex for 19 months.
Not sure what to do about all this, but I'll ask BB and team next week. I'm not getting rid of the Magnesium -- those leg cramps are the worst! In the grand scheme of things, I suppose, if somebody had told me "we'll get rid of the Myeloma, but you'll have diarrhea the rest of your life" I'd still have signed up to get rid of the Myeloma. This is a high class problem, albeit a low-class post! :)
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Quick statistical clarification...
A reader was kind enough to email me with a couple of questions about my last post and I realize it is not as clear as it might be.
There are 167 patients who are low-risk with at least six years of data. Of this 167, 18 lost remission -- the remaining 149 remain in remission at six years. The last to lose remission happened about 3.2 years after reaching remission. So put another way, everybody still in remission at that point is in remission about three years later -- despite being on no meds.
BB once told me that in a particular data set we were looking at, the group losing remission includes people that can no longer be considered as being in remission for any reason -- like failing to look both ways before they cross the street! I do not know if that holds true for this particular data set, but if it does, then the real rate of remission loss is lower than the figure above would imply (still less than 10 percent).
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The price of aggressive treatment...
Just heard that somebody who went the aggressive route was in complete remission before his second transplant...and then contracted an opportunistic infection with his weakened immune system that led to bacterial pneumonia. He is no longer with us.
Then again, I know people diagnosed after me who went with the "control the disease" approach that are no longer with us, either.
This is not yet a chronic condition like hypertension. This is cancer, and it will kill you if you aren't careful. There are no easy answers.
Treatment related mortality overall for the aggressive approach I took is around 1 percent, but that includes many elderly patients. For somebody my age, it is probably more like 1 in 1000. Those odds are good...unless you are that one. And when you encounter that one, it can be jarring.
I am on a day trip to Cincinatti for work (one night, two days, I suppose). I was cleaning out my carry-on satchel and found some papers that BB printed out for me back in May. At that time, he had six years of post-treatment data for Total Therapy 3. Of 149 low-risk patients in that protocol, not a single person who was in remission at 3.2 years had lost remission in the following 3 years. That is not an accident; it is not coincidence: it is cure.
But there is no choice without some risk.
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Quick update...and one mans' myalgia is another man's OUCH!
Hi folks. Sorry to have vanished there for a bit. Lack of news plus a brief break for an annual golf vacation took me away from my post for a bit!
I continue to be contacted by newly diagnosed patients who stumble across this blog and I have to say it is one of the most rewarding things -- if you are reading this and are diagnosed and want to talk about anything, please drop me a line!
So...recent labs are all good. That's what we call "answer first" in my business. :) Now I can back up and say that I've noticed, when lying down on it, my lower right rib feels tender. There is no constant pain -- it goes away unless I am applying pressure to it by lying down on that side. I had Dr. GD take a look (which consisted of him pressing on my lower rib) and it didn't hurt. He was fine with it. Then again, he'd be fine if I had M-protein again. He doesn't fully get it. I resolved myself that I'd be getting MRI's in a few weeks anyway, as I return to Arkansas on September 7th.
Then the other day I noticed a pain in my right shoulder -- barely there...just kind of background noise during a round of golf. It went away later that day and has not returned.
Jill is keeping a brave face, suggesting that this bone pain is part of the healing process and comparing it to when our kids had "growing pains." A quick review of "growing pains" itself (thank you wikipedia) indicates that they are a misnomer and have nothing to do with bone growth (or any other kind of growth). So...there goes that theory.
Lastly, after a series of very good labs, I had a borderline high LDH (an enzyme test that indicates tissue breakdown and is a tertiary marker for cancer, treatment impact, etc.). I'm not overly concerned in isolation as it wasn't incredibly high (normal is 100-250 and it was 258...but two weeks before it was 140). Anyhow, these things were all combining to make me a little nervous.
For my part, as I said, I'll be getting an MRI soon enough for the bones. But the all-important immunofixation test, which I got back yesterday, is negative. Complete remission remains. Light chains totally normal as well. The likelihood of there being no M-protein and there being a problem is pretty low, and I'll be getting a bone marrow as well (great) in a couple of weeks as well.
I'm sure I'm still in complete remission and these random little things are just random little things. But I will be glad when the MRI reveals the lesions have all healed. I don't think I am there yet. BB says 1-2 years for resolution on MRI; I am at remission plus about 50 weeks so I've probably got six months to go.
I am half-afraid to mention any of this because knowing BB he will want fine needle aspirations of my rib and shoulder. If anybody in Arkansas is reading this, NO YOU MAY NOT DO THAT. :)
Speaking of pain, I had my first leg cramp in several weeks tonight. Left calf, pretty nasty. It struck at 4:30AM and I was afraid to lie back down for fear that it would happen again, so up I am. I saw a note in my file yesterday (yes, I had to ask twice to see it since GD's office never calls to tell me anything and I wanted to see the immunofixation results) that I had "no complains other than mild myalgia." Turns out myalgia is muscle pain, for those not in the medical profession. And if what I just experienced is mild, then a cerebral hemorrhage is a mild headache...
Lastly, gastrointestinal issues remain. I think the combined assault of VRD has left my GI tract in a state of disrray. I don't want to take anything over the counter for fear of crippling constipation. It's like a shower where the only two settings are too cold and too hot...one is afraid to make any adjustment. Anyhow, soon I will get a two week break from the meds and that will hopefully ease some of this.
That's all the news that is fit to print, and probably a few sentences more. :)
Be well, everybody.
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Through a glass, darkly
Okay, time to move the post about my GI issues down a bit! :)
As I went online to make my dutiful (doody-full?) post about some recent side-effects, I checked out the updates on a couple of Myeloma blogs I follow. One belongs to my friend Pat Killingsworth, who has taken a much more cautionary approach in his treatment than have I. I encourage people to read Pat's blog as it is a good counterpart to the more aggressive therapeutic route I have chosen and it gives people an idea of the range of options out there. Although I will ruefully admit that I stumbled upon Pat's blog when I was in the middle of treatment getting a blood transfusion and on that day, he happened to list the 10 reasons why you should never get a blood transfusion (I'm using some artistic license here) and I used this as a springboard to rant a bit about treatment philosophy at that time! :)
Anyhow, Pat is tirelessly dedicated to getting the word out there about all things Myeloma and while I have a markedly different point of view in terms of how aggressive to be, I have a tremendous respect and appreciation for Pat's energy and tireless dedication to get as much information out there as possible. With this in mind, I read with excitement his recent post that references an article talking about the effectiveness of maintenance therapy.
The article, which can be found on Pat's blog here, is titled "Post Stem Cell Transplant Maintenance Therapy Delays Multiple Myeloma Relapse in a Majority of Patients." A subtitle is that Revlimid in maintenance cuts relapse rates in half.
Pat and I draw somewhat different conclusions from this, but I view it as part of a puzzle being validated bit by bit. And we're getting to the reason for my Corinthian post title. The puzzle is completed for the majority of newly diagnosed patients but only a few people are looking at it in its totality. Other researchers are looking at bits and pieces of the puzzle without seeing the synergy the pieces have together. They are looking through darkened glass, unable to have the clarity of everything working together.
My diagnosing hematologist, SH, in November 2008 had the following things to say:
- "I don't believe in maintenance therapy"
- "We don't use Revlimid, that's saved for relapsed patients"
- "We [including MAYO and City of Hope] save Velcade for way down the line"
- "I do suggest stem cell transplants so you can be off drugs, but they do not prolong life"
Thankfully he also said I should look at the full spectrum of options including BB (whose last name, incidentally, he mistakenly contorted into an Italian version of its actual Germanic root) and I am immensely thankful that he was open-minded enough to tell me there were different points of view which is the SINGLE most valuable thing a newly diagnosed patient needs to know, and which is part of the bond that ties Pat's blog and mine together despite their very different approaches to treatment.
At any rate, let's look first at the different treatment philosophies accompanying these statements.
1. Maintenance therapy:
SH position in November 2008: "I don't believe in maintenance therapy."
BB position in November 2008 (and much earlier): Maintenance therapy is essential post transplant. Without it the Myeloma is all but certain to return; with it there is a high likelihood of cure in the 85% of newly diagnosed patients that are low-risk.
Current research: prolonged remission arises from maintenance therapy. Excluding Arkansas, the data set does not exist to prove or disprove any connection to event-free survival. Yet.
2. Revlimid
SH position, November 2008: "I don't use Revlimid in new patients, I save it for relapse."
BB position, November 2008: Revlimid is a part of treatment for newly diagnosed patients because of its superior anti-Myeloma effects and better tolerability than Thalidomide, which was the standard Immuno-Modulatory drug in Myeloma therapy prior to Revlimid. However, Revlimid is NOT used prior to transplant both because (1) it suppresses platelet recovery which would make the time to recovery from transplants much longer, and (2) it represents yet another type of therapy to which the Myeloma will not have been previous exposed (and to which drug resistance will have been developed) and therefore enhances the effectiveness of treatment if used after Thalidomide.
Current research: most mainline therapy now uses Revlimid in newly-diagnosed patients...a position that was so novel at the time of my diagnosis that Dr. SF at City of Hope used me as a test case to open a debate amongst his peers about whether or not to use Revlimid in newly-diagnosed cases. What current research seems to be missing, though, is this platelet issue -- to which my own labs attest. Part of it is, though, that extended Thalidomide can be pretty nasty. For this reason, and because of drug resistance, BB does at most two cycles of induction for low-risk patients plus some treatment during transplants and some consolidation -- compare that with induction elsewhere which is usually a year or longer!!
3. Velcade
SH position, November 2008: "We save Velcade for way down the line."
BB position, November 2008: "Velcade is a game changer and increases the cure rate of newly diagnosed patients (including high-risk) from about 40% to over 60%. It is a critical part of all phases of therapy for the newly diagnosed patient."
Current research: under investigation, but whereas it was almost unheard of for people to use Velcade as frontline therapy, now there are a multitude of trials doing just that.
4. Stem Cell Transplants
SH position, November 2008: "They don't prolong life."
BB position, November 2008: "They cure the majority of cases."
Current research: the jury is out. No data outside Arkansas exists to show the impact; Arkansas' data shows it pretty clearly but others either don't believe the data or have other issues with it. I believe this will be the last piece of the puzzle that others eventually prove out -- but it may not happen before something else better comes along.
You can see where I am going with this: researchers outside UAMS are seeing pieces of the puzzle, but not seeing the whole thing. Maintenance, in isolation without the therapy that precedes it, is shown to prolong remission. Great. But that's missing the fact the maintenance, as part of Total Therapy, is curative in the majority of cases. Revlimid, in isolation without the therapy that surrounds it, is more effective than Thalidomide -- but they, too, are only seeing part of the situation. Velcade, same deal.
All of these, though, are being proven out by research.
As I said above, my guess is tandem transplants will be the last thing to be proven out -- and hopefully by the time BB will have been put out of business by a new novel drug.
That is one thing that Pat and I both fervently hope for -- and I think BB won't mind the day when that happens either!
Sorry for the long post -- hope you got something of value from it. If not, low-brow poop jokes are just a few mouse clicks away.
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GI Chess -- not for the high-brow
If you know what this picture is from, then you can guess what this post is going to be about.
I have remarked before that this is not a dignified disease.
I have also remarked that if this blog is of value, it is in large part because of unflinching honesty. One of the most fearful things about undergoing Myeloma treatment is the unknown. So whether it's the uncomfortable reality of diagnoses, the uncomfortable reality of treatment, the uncomfortable reality of side-effects, etc. I hope that by faithfully reporting what happens to me, others who are undergoing treatment or considering it can at least know what they can expect might happen.
Which brings me to this post. I type this knowing I'm going to have another post shortly therafter so at least this won't be at the top of my page for long!
By the way, folks, thank you very much for the active comments re: supplements on the last post. If I asked my doctor here about them, he would say "ask Arkansas" so I will probably call BJ this week. I have discontinued Milk Thistle. I still take this liver.52 product which does seem to have brought down AST so it is having a positive effect but I will cover it off with BJ as this seems the prudent thing to do. I don't want any side effects!
Now...speaking of side-effects...
My GI tract has been in a state of war kind of like the Korean peninsula. I modulate Senna to keep an uneasy truce between the white pieces (constipation) and the black pieces (you can guess). Most matches are played to a draw.
On the white side, we have Revlimid (both individually and particularly when combined with Dex). On the black side we have Velcade, Magnesium supplements, the impact of Augmentin (strong antibiotic I am currently taking to get rid of chest cold #7 since maintenance therapy began), and potentially the chest cold itself. Actually I think Velcade plays both sides at times.
For the last five days now, the black pieces are beating the living daylights out of the white pieces. There is one white king desperately shifting around while about six queens are zipping about him.
Two oft-quoted pieces of research about diarrhea: (1) it is hereditary (it runs in the genes) and (2) while some people think it's funny, it's really....well. Anyhow, a third observation is that after five days it's starting to get very old. I am not yet taking Immodium because I took Dex last night and figured the natural advantage that gives to the White side of the board will kick in and if there's one thing I've learned in this process, it's about the dangers of over-steering. In fact this five day binge kicked in because I overdid Senna last week. But if things don't get settled down in the next 48 hours, I'll be on Immodium rapidly.
Meanwhile I'm drinking plenty of water.
I have another important post to make that I had hoped would bump this one down a couple of notches. But sadly I have to run to a breakfast meeting -- so this one will be here for a bit, in all its glory.
I'm not going to embed the video, but for those that saw the photo above and are pining for some toilet humor, the scene you are looking for is here:
http://www.youtube.com/watch?v=wbDiujuv6rQ
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Milk thistle -- hold the thistles please!
First, the second half of my return from Orlando story. To make a long story short, I am learning that spicy food of certain types do not sit well on Thursdays given Velcade. I had some Mexican in the Orlando airport and spent the first hour of the flight uncomfortable, the second hour very uncomfortable, and the next 15 minutes throwing up in the toilet at the back of the plane. After which I felt considerably better.
Things are going well. I am noticing that constipation requires earlier action. My cadence was one senna pill on Wednesday evenings and maybe on on Thursday mornings. I have found now that Tuesday night, Wednesday morning and Wednesday night are required. May take one more tonight. I'm not sure if it gets worse as I take more Revlimid during a given cycle but I have five more pills to go on this one.
Otherwise things are good!
Now here is a chance for you lurking homeopaths (those that I haven't scared away by my complete embrace of deadly chemicals) to chime in. I didn't lose and regain my tastebuds two separate times to never enjoy wine again. In fact I enjoy it quite a bit. Plus my liver is lightly taxed by my lipitor. There are four liver markers -- two are always fine, one is usually fine, and the fourth is consistently a little high. I have been taking liver.52 which I get from Amazon and that brought the third marker well into the normal range, but the fourth marker -- ALT which is the short-term enzymatic response to lipitor and alcohol, is still around 100 when it should be more like 70. These are not catastrophic numbers and BB as well as my local oncologist GD say everything is fine (BB's one comment in dictation to my file last year was that "patient probably needs to drink more"). But just for kicks I bought some Milk Thistle which I've been told is good at helping out the ol' liver.
Well I took this for about three weeks and I noticed what I thought was bone pain in the lower right ribs -- which scared me at first because that's where one of my lesions was. But it's actually a more dull pain and it's the liver! So needless to say, I'm stopping the Milk Thistle. I will look and see what's going on with the blood chemistry. If it brought down the ALT I may continue with it on a smaller dose (I had been using the "management" dose of 8 capsules a day versus the "maintenance" dose of half that).
Not the most exciting news, but it had been a while since my last post, so...
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Notes from Orlando and MD Anderson
I just returned from a week in Orlando for my company's annual strategic offsite with our board of directors.
A couple of things of note.
First being, Velcade waits for no man so I made arrangements with the help of PinnacleCare to be seen by a Dr. JH at MD Anderson in Orlando, who had agreed to administer my Velcade.
MDA there is quite nice, reminded me a bit of City of Hope in some ways. After a fairly lengthy signing in process (complete with a cool scanner that reads your palmprint!) I then checked in with a nurse, who took my story. She didn't know anything about Total Therapy and was rather amazed at the long list of medicines I checked off. She left, and a few minutes later Dr. JH entered.
Dr. JH *did* know about Total Therapy and he looked at me as though he was seeing one of the people from that soccer team that lived in the Andes off the flesh of their fallen comrades -- like you've heard the stories but can't believe they are standing before you. He asked me if I had ever met BB; I told him he was personally invested in my care and that I knew him quite well. He described my current regime as "the Mother of all Maintenance Programs" which seemed to confirm the strength of this package -- I later researched a bit on JH and found out he is engaged in a not-so-interesting-trial about Revlimid and one other drug as a means of treating recurrent Myeloma. Hello....2003 called, they want the concept back!
Anyhow, the staff was very nice, I was put in a nice semi-private infusion room that reminded me of a much nicer version of the transplant floor in Arkansas, all wood paneling, nice TV, nice chairs that were clearn with germicidal gel, etc.
They had the freezing spray, which made insertion of the needle in the port a snap. They drew blood, I sat back and did some work. The only real downside was how long it took -- it took forever for their lab to process the blood, then get approval of the Velcade, then mix the Velcade, etc. I was in the place from 7:30AM to 1:30PM. Between that and the cab time back and forth, it was a good 7 hours.
Nonetheless, Velcade administered, and I get on with my life. I took my dex that night and on Wednesday had one of the more productive days I've ever had -- problem solving left and right on this deal I am working through, full of energy, all the "positive" attributes of dex and I am once again indebted to the reader who suggested this be taken before bedtime rather than in the morning.
Anyhow, Wednesday evening rolls around and I take my symphony of pills before bedtime. Among them, Ambien. Critical to making sure I sleep well, and I had a good eight hours that I could sleep since my work was done and people were starting to head back to the west coast already at the conclusion of the meetings.
I then proceed to stare at the ceiling all night. There's no worse feeling than knowing you have to sleep and being unable to sleep. I had not brought my Pantoprazole (superstrength antacid, needed to combat some of Dex's less good side effects) on this trip, hoping I could just tough it out (bad idea, more to follow). So I had terrible heartburn and hiccups, which I thought might be contributing to my lack of ability to sleep. But I was awake...at 2AM thinking about work...at 3AM thinking about work...at 4AM thinking about work...at 5AM as my colleague slipping some work materials I had him working on under my door...at 6AM...and then I was so bloody tired at around 7:30 I thought I might be drifting off.
That's when the downside of staying "on property" (as well call it) became apparent. The kids in the room next door started shrieking at the top of their lungs. Note to the parents: I'm very excited that your three and four years olds want to go to Epcot center, but letting them just scream "EPCOT! EPCOT! EPCOT" unabated for two freakin' minutes is uncalled for. Then the silent (momentarily) parents must have stopped one of them because that one just started screaming bloody murder while the other one kept screaming "EPCOT!". And when I say "bloody murder" I mean it -- that kid was top-of-lungs screaming like you can't imagine. After 20 straight seconds I thought "my God, no kid can keep that up, they're gonna tire from lack of oxygen." No such luck. The superhuman kid just kept bellowing away.
I sat there, marveling at how wonderful my kids are and wondering if I should pound on the wall, but lacking the strength or energy to even make up my mind, much less get out of bed and do it.
At this point, previously-silent mother screamed "I NEED SOME TIME TO MYSELF!!!!" and the door slammed. Followed by previously-silent father saying "now look what happened" to his screaming kids.
I got up to take a shower...and then...I noticed...on the counter...like a lost little lamb that had slipped from my grasp before being swallowed last night....
the Ambien.
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Magnesium dosage worked well
Carl the Greenskeeper once extolled the virtues of Manganese (along with Cinch bugs) in maintaining the grass at Bushwood CC. I'm not sure what Manganese does, but Magnesium certainly helped with the leg cramps.
I was as scared to go to sleep as one of those teens in the Nightmare on Elm Street movies. On the advice of the good folks at UAMS, I should go to 800mg a day of Magnesium, but also check Magnsium levels. I had been taking 400mg before and that seemed to be working; I was getting 500mg of Magnesium from the over-the-counter supplement ZMA, that also has zinc and amino acids in it.
Anyhow, Jill was kind enough to pick up an array of tablets -- 500mg and 250mg. I took one of each before bed and prepared for the worst.
Nothing. I slept very soundly.
One never knows when these are going to strike but I will keep close tabs on them for others out there. So things of note: the last one happened the day after I stopped Revlimid. I also did not take Aspirin on the night without Revlimid. I also did not take MetaNX that night either.
Last night I took MetaNX and 750mg of Magnesium. We will see how this works for the next month.
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Oh the irony, or, OUCH!!!!!!!!!!!
So as I was up in the middle of the night, posting my blog update below, I also visited the blog of a fellow Myeloma traveler from New Zealand. After years of enduring this worst this disease has to offer with far more grace than I'd be able to, this person was (finally!) able to be placed on a Revlimid trial and is responding. I was so happy for him, and I posted a comment on his blow to that effect, and also let him know that should he experience leg cramps, they can be controlled with over-the-counter magnesium supplements.
I haven't had a leg cramp in weeks.
That is, until about an hour after I went back to bed.
During the dozen or so horribly painful leg cramps that I've had on maintenance, I've often thought, as the pain subsided, "thank God it didn't hit both legs at once...I don't know what I would do." Well, gentle readers, I now know what I would do.
At 5:45 I was woken from a dream with a rapidly developing cramp in my left leg (deep in the center of my left calf). I started to rub it and stretch but it was to no avail. The pain was excruciating. And as soon as I recognized it, my right calf got one, too. It felt like someone was sticking their thumb and forefinger of each hand into each calf, digging in about two inches, and tearing the muscles in two. In both legs.
I fell out of bed screaming, basically, rolling on the floor for about 30 seconds, and then whimpering rather than screaming for another minute or so. I woke up my poor wife from a deep sleep and she was a bit spooked given that I was screaming at the top of my lungs! Fortunately the kids slept through it.
I'm going to track these things more carefully. I had been using magnesium pills that had been prescribed to me over a year ago when I was in the hospital. I ran out of those (by design) about four days ago and have gone back to the over-the-counter supplements. I am gathering that the direct magnesium works better!
Ow....
So Sid, if you are reading this, take note. :) I have heard quinine also works well, but that suppressed platelets, so it's not advisable, unfortunately, unless you've got a much healthier platelet count than mine.
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low platelets...
Had my infusion yesterday at GD's office. I got my test results back from the previous week and they looked pretty damn good. The chemistry was pretty much all in the normal range with the exception of slightly elevated AST and ALT from the liver, owing to a combination of therapy, lipitor and the grape. Probably mostly the grape. :)
I am taking a supplement called Liver.52 (available from Amazon and elsewhere) which has brought the AST down to near normal. The other liver markers (GGTP, alk phosphate and LDH) are all normal. LDH is tracked in active myeloma treatment so to see this squarely in the normal range (reference range is 100-250 and I am 140) is great.
Other markers are also good. Beta 2 Microglobulin, a key marker used in the staging of Myeloma, is around 1.3. Normal is less than 2.5, although i was around 2.3 at diagnosis. At any rate, it is low and that's a welcome sign.
I remain immunofixation negative which is of course the thing I am really focused on. Light chains are all normal. IGA is moving back into the normal range after being suppressed by therapy, and that is a sign of "recovering marrow" per BB so that is all good as well.
Platelets, though, were a different story today. The nurse drew my blood, and gave me the aforementioned labs to review (a victory, since these folks are usually terrible about doing so). When they had analyzed the counts from the blood draw, she came in and said that the doctor was not approving Velcade since my platelets were at 80. I explained that I had taken my last Revlimid for the cycle and that the platelets should be bouncing back, and to please let the doctor know this. Meanwhile I called BB's right arm BJ who confirmed they would not hold Velcade and that the Revlimid is responsible for platelet suppression. I let the nurse know this and asked her to give me the Zometa infusion for which I was due while she presented my case to GD.
She came back in and said GD had approved the Velcade, which I got. As I was leaving the office, I bummed into GD and he noted he "almost did not approve it". Frankly, had he not, I would have insisted he speak with BB but if that failed as well, I would be taking my business elsewhere. This stuff is $5,000 an infusion -- they are getting paid well to execute BB's instructions and since it is my health that is being impacted, they better do so.
My instinct at the time of choosing somebody for maintenance therapy was that i wanted somebody who believed in the protocol that was being followed. My instincts were totally correct and this is a good example of where it might run into trouble. For a doctor who doesn't believe my therapy is curative, they are likely to be much more cavalier about the Velcade. For one who believes it IS curative, they recognize how critical it is to follow the protocol. I am sure had i stuck with SH, there would have been no Velcade yesterday.
As evidence by the time of this post, the dex is at it again. I am going to get a couple of hours of sleep now before work rears its ugly head. :)
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Alive, well (minus another chest cold), busy and apologetic!
Just wanted to drop by with no particular news other than to point out that I'm still here! I have been buried in work, attempting to sell one of our assets while also preparing for our annual strategic planning offsite with our board. Both of these things should come to a head soon and I can hopefully resume my project here whcih is the long-delayed posting of my detailed labs. I do think this will be of interest to people now that (thankfully) the day-to-day of my care is mostly pretty boring.
I have managed to get sick yet again. The provenance of the cold appears to be my adorable two-year-old. It spend twelve hours as a sore throat, a day as a sinus infection and now is residing in my chest just like the many predecessors over the past six months. I'm not sure what can be done other than to hit it as early as possible with Tamiflu and Augmentin (anti-viral and anti-biotic, respectively) and hope that takes care of it quickly.
I have tried to get back into exercise, mostly just light jogging / walking. I regret not taking steps to keep in better shape throughout treatment -- my broken back probably had something to do with that, actually. But some of it is also just the massive tiredness that sets in with chemo. My suggestion to those going down this path is to do everything you can to keep your energy and metabolism up. With the chest cold, I'm going to have to curtail it again, unfortunately, but hopefully that will pass soon.
I'm very sorry to have been so long between posts, and I thank all of you again for following me!
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All clear from BB
I am sitting in the Little Rock airport right now, after a successful visit. I have a lot to report, both medically and in terms of local color -- it may have to be in a couple of parts if I get interrupted by the departure of my flight!
Bloodwork showed no monoclonal protein under immunifixation. WBC was at 3.8, RBC at 4.5, Hemiglobin at 14.1, platelets at 117. All on the low side of norms but normal nonetheless, with the exception of platelets which are just a bit below normal. BB was quite pleased with all of this, particularly the platelets which he said were holding up impressively. Seem low to me, but he's the man, so...
Marrow was even better. No monoclonal protein, negative for plasma cell myeloma, and plasma cells at less than 2 percent. Additionally, there are oligoclonal indistinct bands which are, to use BB's words, "indicative of profound remission status."
The MRI was mostly stable, although it did show a slight decrease in size of several lesions. We need these to continue to heal, although that can take years. We discussed another course of Zometa, which I will get soon. Probably after I get my teeth cleaned as dental work and Zometa do not get along and I am loooooong overdue for a teeth cleaning.
The PET scan was good as well. Reduced SUV (the measure of cancer activity) from 2.0 to 1.3. I am just learning how to interpret this -- evidently baseline is 1.0, and anything higher than 2.5 is very likely cancer activity. For now, 1.3 is less than 2.0 and I am pretty sure I was at 3.7 when I got my first scan although I don't know for sure. At any rate, the decline is a very positive thing. The PET does continue to show over 100 osteolytic lesions. BB mentioned that these will always be there. I am not totally certain as to why -- I need to listen to our conversation again and will report if there is more to be said on the subject.
We then reviewed, as is his style, the newest available data from total therapy 3 and 4. Some salient observations:
1. The response curves are totally superimposable: meaning the data through the first three years or so of Total Therapy four are effectively the exact same as the first three years of the now eight odd years of data from Total Therapy 3. That means I have visibility about five years down the road.
2. There is effectively no difference in response between the lite and standard arms of therapy. Lite here is anything but lite: it is still MVDTPACE to start, VDTPACE for induction, two transplants with bridging (thal/dex), consolidation with dose-reduced VDT-PACE and then VRD in maintenance. But there is one less cycle of each induction and consolidation, and the transplants themselves split the high dose melphalan over four days to increase tolerance and reduce toxicity.
3. The recurrence curve for low-risk disease appears to be perfectly flat after year three. This is extremely important as it comes earlier than was expected. To the doubters, consider this: of 167 low-risk patients that achieved complete remission, only 9 percent fell out of remission during the first 40 months after achieving complete remission. What other protocol for a newly-diagnosed, low risk patient can promise that they have an over 90 percent chance of remaining in remission for three years once they achieve it (recall only 60 percent achieve complete remission; others may nonetheless have long remissions with a residual MGUS type disease)? Even more striking: not a SINGLE one of the 149 patients in remission at 3.5 years has lost remission almost three years later: one hundred percent of these remained in remission after six years. Not a single incidence of recurrence. Cure? Or mere coincidence?
Of those patients with my Proliferation Subtype (as defined by gene analysis) not a single one has lost remission, period. It is harder to achieve remission with this sub type, which is usually associated with high risk disease. There are only 14 data points of low-risk disease with the PR subtype so it is not as statistically robust but it still works for me!
Eveeything at this point is in the direction of cure, provided I keep up with maintenance. I have not felt any neuropathy since Velcade was interrupted 10 days ago. Nonetheless, BB and I feel that it is important to remain on the higher dose for as long as I can to ensure the most favorable outcome.
I asked BB about the validity of PCR tests to quantify residual disease. He said these were worthless. He said that in random studies they have seen PCR indications of molecular remission in patients who have multiple FDG-active lesions under PET Scan. So there goes that.
I also asked him about cutting off maintenance after three years versus the longer revlimid maintenance that has been discussed by some doctors, such as RV, or perhaps even BD based on his comments on the maintenance therapy findings yesterday in the pre-ASCO (American Society of Clinical Oncologists) conference next week. BB is currently doing a randomized trial of revlimid at 5mg daily versus no revlimid to see the impact. BB told me before that he does not randomize unless he thinks he knows the answer is "there is no difference." This is one of the reasons he doesn't submit Total Therapy to double blind testing. I told him he has two more years to develop data before we have to decide what to do!
Speaking of ASCO, Bart will be presenting some new materials on the ongoing fight against high-risk myeloma, where recent data suggests improvements and the presence of a cure signature, which though significantly lower in likelihood than cure with low-risk disease, is still meaningful!
More to come later, including some good local color and humor!
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All dressed up and nowhere to go...
So the answer to the question of "can you do a kyphoplasty on vertebrae that have already been through a vertebroplasty?" is "no".
Would have been good to know before we got up this morning to be at the hospital nice and early!
Oh well...I'll never get that lost height back but it's not the end of the world. We meet with BB this afternoon and I will have a full report at that time.
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Hello from Arkansas
Or should I say "howdy."
We got here Tuesday night and ate a great pizza at Damgoode Pies. One of the things I miss around here.
Yesterday was a verrrrry long day. Went to the hospital at 5AM to have my port accessed. I didn't want half a dozen blood draws, IV inserts, etc. After that it was a 6AM PET scan, 8:30AM visit with the research nurse here, 9:30AM x-rays, 10AM EKG, 11AM check-in at the MRI and after two hours in a tube with long banging noises, a celebratory late lunch at Whole Hog BBQ. Then I worked until around midnight.
Today, we do bone marrow. A bit less hectic than yesterday.
I have seen a couple of very young people here on this trip, including a girl yesterday who looked like she cannot have been older than 25.
I also met, on the flight from Dallas to Little Rock, a woman who completed Total Therapy 1 in 1996. Almost fourteen years later, she has no trace of the disease. And she did not have the benefit of thalidomide, revlimid or velcade. Basically she had old chemotherapy (probably VAD) and two transplants. And no maintenance therapy other than perhaps dex. Remarkable proof that people are being cured.
My appointment with BB is on Friday -- will report what I learn!
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Neuropathy and other notes
I noticed yesterday that for much of the day, I had a barely perceptible tingle in my feet. I first noticed it around noon and it persisted until I went to bed. Today, I feel it less, but it is still there.
I wouldn't say it's enough to get me overwrought, but I am starting to get a tiny bit concerned. I doubt it is from the Revlimid, since I didn't develop neuropathy while on Thalidomide and that's much more likely to cause it. The more likely culprit, then, is the Velcade.
I am told Velcade-related neuropathy can go away if the Velcade is discontinued. I am obviously not going to do that, but I might see if they want to dose reduce back to 1mg/m2 from my 1.3. The higher dose is because of my unfavorable sub-type of the disease, though...so even dose-reducing that could deter me from my progress which I don't want to do.
I visit Little Rock next week for PET, MRI, bone marrow and potentially kyphoplasty on my back. It should be an interesting few days, as always! I wasn't originally going to submit to the PET but I confess that I'm interested in getting as much information as possible given that the stray monoclonal light chain wandered into the immunofixation analysis the other day.
Among the questions I want to ask BB about:
- neuropathy
- reimmunization thoughts
- use of polymerase chain reaction test to determine molecular remission
Obviously I'm also keen to see if I have reached "MRI complete remission" yet.
Lastly, I was invited by ASCO (the American Society of Clinical Oncologists) to attend their upcoming conference in June. I would ***LOVE*** to do this, but my schedule will not permit it. However I do hope to do the next one.
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Some random observations
Hello folks.
First of all, I got another chest-cold. My darling little son had a runny nose on Mother's Day as I was playing with him at the park, and it was just a matter of time. I started feeling sick on Tuesday night, and I started taking Tamiflu and Augmentin and I had hopes that it was going to be gone as I felt good yesterday, but today it's gotten worse. So I will continue to monitor it.
Second, I switched my Velcade to Monday this week because of some potential emergency work travel tomorrow. With one less day to recover from the last infusion, I'm not surprised my counts were on the suppressed side but they were a bit worse than I thought. WBC at 2.9, platelets at 108. HGB was at 14, which is pretty good for me.
Third, I got the Velcade in the morning. Velcade has some side effects which I've mostly been able to avoid, but they include flu-like symptoms, headache, and fever. Normally, I take dex which suppresses all these symptoms. Regular readers may recall one of my primary care doctors, who is an infectious disease specialist, surmised that this was why steroids were taken at the same time as Velcade. Well, here's the problem. Normally I get Velcade in the afternoon, take the Dex about eight hours later, and then sleep. Today, I got Velcade at 8AM, and haven't taken Dex. 12 hours later I feel horrible -- fever, headache, flu-like symptoms. So the moral of the story is: make sure, when taking Velcade, to go to sleep less than 8 hours later.
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Quick update with good news from my labs last week
Most importantly, serum immunofixation is back to: "No monoclonal proteins detected." Complete remission. Phew! I am prepared to chalk up the previous reading to residual noise that is being eliminated through VRD for another 28 months or so.
After a week off Revlimid, I guess I expected my counts to recover more than they did. Whites remain at 4.2, which isn't horrible but is a bit on the low side. HGB is 13. Again, not horrible, but a bit on the low side. Platelets are 108. These are pretty darn low, but previous experience indicates that they usually recover with a bit of lag -- that is, after the first week back on Revlimid they usually go up.
When the deal I am running right now subsides (it should do so this week, although I've been thinking / hoping / praying that would be the case every day for two weeks now) I will hopefully have time to blog more regularly and put some data up. I would think that those in maintenance (or induction, depending on protocol) using VRD would be interested to see these counts over time.
I go back to Arkansas in two weeks for the Full Monty of tests: PET, MRI, bone marrow, bloodwork. I may even submit to a gene array (more marrow pulled out) but I might wait until their own data there shows that I no longer have any monoclonal protein. Right now, they have the hedged version of that: monoclonal protein might exists but we can't find it. This is still complete remission, but I want stringest complete remission / molecular remission, dammit! And once that happens, I did promise BB and BJ that they could do another gene array on me. So...I guess that will be a good problem to have!
I am quite tired these days...some of it is probably the ungodly hours (literally 18 hours a day, 7 days a week for the past month) and some of it is the drugs. I also notice that my muscles deteriorate. I haven't had time to run; when I did, I was winded pretty quickly but I will try to pick that back up. But in the morning in bed, if I try to even do a good stretch, my calves instantly cramp up. It's quite unpleasant and a bit disconcerting.
That said, I am managing stress VERY differently than I used to. I used to run around in a panic and I would have this desparate, pit-of-the-stomach dread that would rise up with some regularity when I was under the gun. Now, I nip that in the bud. When the workplace is unreasonable, I refuse to let it drive me crazy. As a result, there have only been two days in the past month where I've really felt stressed out. It used to be more like three days a week like that. So my post-cancer self is managing this a bit better -- which is critical as I'm pretty sure that stress is what gave me the cancer in the first place.
And otherwise, I feel good!
I might also add that the testosterone shot that I got in the ol' gluteus maximus hurt like a sonofabiscuit for about three days. The other shots were painless -- this one felt like deep bone pain, almost (although I know it was muscles and not bone).
Hope you are all well!
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White counts, side effect roundup, bad dreams, etc.
Howdy folks.
So the white count mystery from last week is just that: a mystery. Yesterday they were back down at three-and-change (I'm going to demand my labs through my always-excellent advocate, PinnacleCare) so in the "new normal" range (i.e. suppressed from the Revlimid but not to dangerous levels). I am off the Revlimid this week so it should be able to recovery slightly before being suppressed again for another three weeks.
No explanation of why it spiked up to 14. Could have been response to exposure to a potential bug, could have been something else. Since it had detail behind it and was heavy on granulocytes I am reasonably certain it was my blood that was reported upon rather than a lab error.
In an effort to reduce the number of pills in my medicine cabinet, I swapped out (momentarily) the ZMA supplement for pure magnesium pills that I was prescribed during my hospital stay in Arkansas last year. I have been taking 500mg of magnesium a day (versus the 600 that comes from the ZMA). Got a cramp in the small of my foot last night which was pretty painful but generally they are not a problem any longer. When I've depleted this bottle of magnesium pills, I will go back on the ZMA.
As far as other side effects, I've not felt the tingling in the legs since I blogged about it a couple of weeks ago, so I don't think I'm at serious risk for neuropathy. I made sure to get the brand name MetaNX rather than the generic in an effort to have B vitamins that are more easily absorbed. Hopefully that will carry the day.
I did have a curious side effect -- another bad dream, fairly vivid. These aren't nightmares, per se, in terms of physical danger or monsters or phantasmagorical material. Rather, they are emotionally dreadful situations (e.g. horrible fights with family members and children) that are realistic enough to be jarring long after one wakes from them and proves them to be shadows. I had two or three of these with terrible intensity during my induction and consolidation chemotherapy and noted them in the blog at that time -- hadn't had one since and this wasn't *quite* as bad, but it does make we wonder if this curious side-effect is a result of Velcade and Dex (the latter of which I received in very high dose during induction and consolidation) rather than the other chemo agents. Has anybody else experienced these dreams?
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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.
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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.
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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!
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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.
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