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My next step???

felursus Registered Users
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For those of you who didn't read my original posting/thread from back in the early summer, I was diagnosed with AML back in March after I presented to the ER of my local hospital with a Hgb of 3.4.  At the time my WBCs were WNLs, and my platelets were "hanging out" at around 100,000.  I was transfused with 6 units of blood and had a bone marrow biopsy (interestingly performed by Dr. Siddartha Mujherjee, who won a Pulitzer prize this year for his book about cancer).  They were thinking I had MDS, but after I was discharged from the hospital, I was told I had 29% blasts in my marrow.  The MDs decided that I should be treated with standard induction chemo and wanted me back in the hospital asap.  However, I resisted this and waited 2 months to start induction.  This wasn't an entirely foolhardy move on my part, as except for the fact that I was transfusion dependent, my WBCs stayed in the normal range, and my plts continued to "hang out" at around 100 the whole time.  I had asked my MD to tell me if he thought I was doing any harm by delaying chemo, and we had a "deal" that if he thought things were going "downhill" he would let me know.  By the second week in May my peripheral blood blasts did increase, so on May 18th I was admitted for chemo.  I tolerated the chemo very well - with only very mild mucositis and really horrible constipation as side effects.  However, a post-chemo BMB showed that there was no significant change in my bone marrow: I was a complete non-responder.

 

At that point I was given two choices: treatment with Vidaza to be administered on an out-patient basis 5 days in a row followed by 3 weeks "off" for a minimum of 4 cycles - and more if it worked - or to enter a Phase 3 double-blind drug study.  The drug study included medium-dose Cytarabine given over 5-days and over 2 hours/day plus the study drug vs. placebo on Days 1 & 4.  This would have involved another minimum month-long stay in the "sister hospital" to the one where I was originally treated and most probably more side-effects with only a 50% chance of receiving the study drug.  My oncologist was 60:40 in favor of my doing the Vidaza, and after much consideration that's what I decided to do.  However, he told me I could have a "little" more time to recouperate from induction.

 

And then, all unexpectedly, my counts started to go up, and by the end of July my WBC and Hgb were in the normal range (plts were in normal range since before I was discharged from the hospital back in mid-June).  However, I had 1.1% blasts in peripheral blood per flow cytometry (July 27th).  We did a repeat BMB on Aug. 3rd, but my MD didn't get enough trabecular bone for the pathologist to estimate blast %.  In early September we repeated the flow cytometry, and at that time I had 0.9% blasts in peripheral blood.  My Hgb continued to rise - to 13.9 (which upon looking at old lab reports from a number of years ago is about my "normal"), but my plts, having reached into the high 200s, have now fallen to 161 (over about 2 months), and my WBC has gone down from 4.9 to 4.0 - as of last week.  What's worse, however, is that they ran another flow cytometry last week, and my blasts are up to 4%.  I'm seeing the MD again on Friday and he's going to repeat my labs, and then we have to decide what to do,.

 

So here's the dilemma: I was an apparent "non-responder" to standard induction.  I've Googled away and can find no reference to "delayed" or "late" response to induction chemo.  I obviously need to do something - and soon - to prevent a full relapse.  I do have 3- 12/12 potential donors out there for a transplant, but I'm very wary of doing a transplant when clearly nowhere near being in remission.  All suggestions for investigation of further treatment will be appreciated.  BTW, I have "normal" cytogenetics - at least for AML ( I do have t(2,19) - which is supposed to be potentially involved in B-cell lymphoma).  I do know about the existence of point mutations, but (and I'm rather furious about this) the MD who is involved in research on these apparently didn't test my marrow sample for them (although I "donated" extra marrow to her for her studies)!!!!  So doing a repeat induction would seem to be pointless, I don't know how much Vidaza would do for me, and I'm not too familiar with some of the other regimens that are out there.  I should also add that this is very stressful, because I've gone back to leading a completely normal life - even working again as a PT.  Any and all suggest

  • 1. Re: My next step???
    SummerTX Registered Users
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    I'm just kinda starstruck-by-proxy about the Mukherjee connection. I read his book when my dad was diagnosed, and it was an AMAZING resource. It was even punny!

     

    I have no guidance for you, though; what a sucky situation. You didn't respond to chemo, then you DID respond. A confounding dilemma for the doctors and for you. I guess my only advice would be: Whatever your choice, do your best not to play the "what-if?" game. That kind of thinking doesn't help your blast count.

     

    Best,

    Summer

    Van Rowe's Daughter and AML HATER

  • 2. Re: My next step???
    willowbayfarm Registered Users
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    Hi Karen,

     

    I'm busy with school so mostly lurking these days...however, about 9 months after my treatment ended, I consulted by phone with Dr. Estey from the Hutch, a well-regarded AML expert.  We were talking about strategies for remission maintenance, and the three medications he mentioned at that time were vidaza, decitabine and chlorfarabine.  Have any of your doctors mentioned the last two to you?  Of course, at the time of my discussion with Dr. Estey I was in remission, but I have seen chlorfarabine used on some stubborn cases on these boards.  Just a thought. 

     

    The 4% was in the peripheral blood?

     

    - WBF

     

  • 3. Re: My next step???
    felursus Registered Users
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    He was very "Brahmin".  He did talk me through the whole procedure, and my husband was there to hold my hand.  Dr. Mukherjee's name had been on my board as the attending of record, but mostly I just saw his fellow and senior resident.  He only turned up for the bmb.  I haven't seen him since.  However, he did make an appearance on Tavis Smiley's show, and on that he seemed a lot more down to earth and even funny.  Perhaps culturally he just behaves differently in the hospital with patients.  I haven't seen him since, so I haven't got to "know" him at all.  The other MDs in the Hematology Dept.  do refer to him as their "star".  (The MDs in cardiac refer to Dr. Oz as their "celebrity".  LOL)

     

    I realized early on that sooner or later the blast count would go up - just not so steeply so fast.  It went from 0.9% to 4% in 6 weeks. And that was just in peripheral blood - who knows what's going on in my marrow.  I also wanted to stay out of the hospital until after January, by which time I can change my insurance coverage so I can get to MSK for a consult.

     

    Thanks for replying.

     

    Karen

  • 4. Re: My next step???
    felursus Registered Users
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    Yes, the 4% was in peripheral blood.  It doesn't show up on a manual/automated count at all - only on flow cytometry.  On the manual/automated count all my counts are normal except that on my center's normal range, the low end for plts is 165 (which I know is high compared to other labs), and mine were 161.  Also on the percentage count monocytes were a little high (but not by much) with the abolute monocytes being WNLs.

     

    I'll discuss using the chlorfarabine with my MD.  BTW do you know any statistics/info on the differences between decitabine and azacitidine?  For some reason at my hospital they are "pushing" azacitine and never mention decitabine at all.  Dr. Raza, who is their big MDS expert (and one of the "Point Mutation" investigators) was really pushing me to be treated with 5-azaciticine.  What a quandry!

     

    Thanks for your input.

     

    Karen

  • 5. Re: My next step???
    willowbayfarm Registered Users
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    I don't have the time to unearth any statistics comparing Vidaza and Dacogen (decitabine)...but I believe they are both hypometholating agents.  Dacogen seems to be used more in cases of MDS, but occasionally we are seeing it used in AML as well, usually with older patients unable to tolerate the effects of the usual 3 + 7 induction regimen.  Dr. Estey has quite a lot of experience dealing with MDS, so he seemed pretty familiar with decitabine.  My impression of the effects of chlorfarabine is that it's a pretty stout treatment, so it will be interesting to see what your docs say about it.  My tendency would be to kick the heck out of this thing while you have it off balance and before it decides to ramp up, but of course, I'm no doctor - that's just my gut reaction.

     

    Best wishes and let us know what you find out.  Your posts are always interesting and serve to educate the rest of us, or at least give us questions to pursue.

     

    You might also try searching this site for ancedotal experiences with chlorfarabine...sometimes it's misspelled as clorfarabine, so you might want to search for that term as well.

     

    - WBF

     

  • 6. Re: My next step???
    Tex Registered Users
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    I dunno.  If a guy jumps into a pool in a river and there's a 99% chance he'll break his neck on surrounding rocks and he winds up hitting the pool, that's still pretty foolhardy in my lexicon.  But I'm glad you made it.

     

    Until you get your BMB it seems like it's really more of a "what would you do?" decision-making game because at this point there's absolutely no way of knowing what the blast count in there is.

     

    There have been people who responded on a delayed basis to chemo.  I don't  think it was ever so long as a month later but there's never really any telling.  As we say around here, everyone has their own experiences and pathway to health.  But even if you delayed once, it doesn't mean you'll do so a second time.

     

    As it goes, I don't think you have enough information, yet, to be working through a decision.  Or, I should more accurately say, I wouldn't think I had enough information in your situation.

     

    For some reason, you didn't have a normal first time through treatment.  That really does leave a lot of questions but I don't see the information poiinting any particular direction at the moment.

     

    Blessings

  • 7. Re: My next step???
    felursus Registered Users
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    They were busy telling me how I was about to die - so I figured I'd like to "see Spring" - if it was going to be my last one - only problem was that Spring came really late this year.  Actually, I wasn't "risking" anything: my BMB pre-chemo was nearly identical to the one when I was diagnosed, and of course the real problem was that the post-chemo one was also basically identical.  What "saved" me from the drug study was the transplant MD basically telling me that if I didn't get treated "aggressively" (meaning having a good response in the drug study - he and the study MD work at the same hospital), I'd be dead in months.  My birthday was coming up, so I said if it were going to be my last, then I'd like not to spend it in the hospital.  So we postponed my entering the study.  In the extra time that "bought" my counts went up.  The study MD was lucky, because I would have spoiled her curve - they would have assumed my "response" was to the drug (and they wouldn't have known whether/not I was actually  getting the drug because the study is a double-blind one.

     

    In fact, my MD said I was "right" to resist going into the hospital right away, because I had better quality of life.  Since they kept me nicely transfused, I was able to do anything I wanted.  Remember, my WBCs were normal and my plts were high enough so that barring serious accident, I was only at the very slightest risk of suffering a bad bleed.

     

    Actually, the MDs all wanted to treat me as though I have MDS, because my disease wasn't rapidly progressing - although that may no longer be true.  I'm seeing the MD again on Friday, and he's going to repeat standard labs and maybe the flow cytometry.  You'da thunk that with 4% blasts in peripheral blood per flow cytometry SOMETHING  would have shown up on the regular labwork, but that was "clean".

     

    I really do want to get to Sloan Kettering for a consult with Dr. Tallman, who is the head of their Leukemia Service (and of course you'll "approve" that he did some of his training at the Hutch )  A consult alone - without any blood work - costs close to $700!  Oh well - I'm working all next week, so that'll pay for it (and labwork as well, I guess).

     

    I'm so "pissed" that my little semi-remission ended before January.  I have lots of "stuff" planned for between now and the end of the year.  I shouldn't complain, I know - there are lots of worse things than missing "social events", but I WAS planning to participate in a "Messiah" concert at Avery Fisher Hall (Lincoln Center) over the Thanksgiving weekend for which my husband and I helped organize some singers (we have a "sideline" as choral contractors), my regular choir has a concert in early December, and we've been invited to lots of other concerts - and that's all in addition to the usualy holiday stuff.

     

    OK - self-pity session is over.

     

    Karen

  • 8. Re: My next step???
    Tex Registered Users
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    Being sick over the holidays truly sucks.  I just look at it as that missing that one year has made me available for seven additional holidays, so far, with one coming up.  Hell, I remember sitting on the side of my bed looking out the window at all the hustle and bustle of people doing their Christmas errands.  I'm just a big kid at heart and Christmas is always my favorite time of year,

     

    My grandkids were coming, it was my grandson's second Christmas so his first one with a touch of cognizance about what was going on and I was released a week before Christmas on what my onc called a "mental health discharge."  She'd originally told me I'd almost surely be out by Thanksgiving and had promised Christmas.  It was getting close and my neutrophils were still playing silly buggers.

     

    So, like I said, count one in the dumper for a lot more to come.  It won't change how bad it sucks, you might be able to tell I'm still bummed about the holidays in '03, but it's a way of keeping sane throughout it all.

     

    Blessings

  • 9. Re: My next step???
    felursus Registered Users
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    I don't think they'll admit me for more chemo.  It's far more likely that my MD will want me to do Vidaza, so I'll just be at home feeling miserable.  I guess that that's better than being in "the slammer", but it's not a great thought,.  Part of the problem is that I feel better now than I have in a whole year - thanks to all that nice Hgb I've been making.  It's a very, very scary thought that I may never, ever again feel this good: except for seasonal allergies (which may be over, as they say we're going to get a frost soon), I have NO problems at all and am not taking any meds now.  I guess my little "vacation" is well and truly over.

     

    I'm seeing the MD tomorrow, so we'll see what that brings.  I don't know whether I should push to do whatever the most aggressive thing is - or not.  That's my quandry - in addition to the probable fact that I didn't respond to standard induction.

     

    Karen

  • 10. Re: My next step???
    Tex Registered Users
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    That's why you listen to docs, to try to figure out what to do.  I never push for anything unless I'm sure it's what I want to do and it took me over a year to finally get someone to order a liver bx.  If the doc has more than one option, think it through and do what makes the most sense, aggresseive or not.

     

    You'll figure it out.

     

    Blessings

  • 11. Re: My next step???
    felursus Registered Users
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    I'm another weird case.  So...I listen to the MDs then make up my own mind.

     

    Saw the MD today.  He just wanted to check my counts.  Hgb went UP - it's now 14.1.  However my WBCs and Plts have been slowly declining.  Another interesting thing - which I noticed and which my MD agreed with - is that if a flow cytometry shows 4.1% blasts in peripheral blood, SOMETHING should have showed up in the automated count, but nope, nothing showing there..  So we are continuing to "watch and wait".  I'm working F/T next week.  (Gee, I get to "torture" some old people! )  So I'm seeing the MD again in two weeks.  He also told me that the MDS "expert", Dr. Raza - she's the one I won't talk to - is starting a study in Nov. using oral Azacitidine.  (They've got a similar study at MDA.  I wonder how that one's been going.)  Of COURSE I'd rather pop a pill than have shots, but they don't know how effective it is.

     

    BTW, I spent a couple of hours in the Columbia Heath Sciences Library and spent time reading the MDA cancer book's chapters on AML and transplants.  Interesting reading.  Wish I could have photocopied some of the pages - although I did photo some with my iPhone.  I also read some other stuff.  And all this has led to other questions - lots of them.  So what else is new? One thing I found out from the MDA book is the concept that after induction chemo nadir, blast counts can actually rise - but it's not the leukemic cells that have reproduced themselves, it's the marrow producing lots of new cells to compensate for all the ones kiled off by chemo.  They seem to recommend BMBs about two weeks apart post chemo - and perhaps more than just one at, say, Day 14-21 and one two weeks later, but perhaps one a couple of weeks after that.  Hate that idea!!!!!  (But I do get the point.)  On the other hand, I read somewhere else that they can, supposedly (not sure under what circumstances) tell if someone's a responder or not after about 2 days of induction.  I guess I need to get a PhD....

     

    Karen

  • 12. Re: My next step???
    Tex Registered Users
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    Some of my doc's associates would refer to my condition as MDS.  At one point severla months later, I got curious about that and asked my doc why AML and MDS seemed to be used interchangably...which had I had?  She went to my file and told me.  The smear showed 20% blasts and the Flow showed 48%.  That was from my marrow but I figure there can be quite a difference in the Flow and a typical draw, as well.

     

    Who knows?  I'm not sure the docs do.

     

    Blessings

  • 13. Re: My next step???
    felursus Registered Users
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    Well, of course it depends on whether you go by the WHO or the FAB classification.  The WHO standard is 20% blasts or more, while the FAB standard is 30%.  Under the FAB classification, MDS with >20% blasts was "MDS in transformation".  The WHO classifcations eliminates that section altogether.  I would guess that now I'd be classified as having MDS, because at the moment I would very much doubt that I have as much as 20% blasts in my marrow. Although, given the "failed" BMB in August, who knows.

     

    Of course a flow cytometry reading is going to be much more accurate than a standard automated count of peripheral blood.  I have no idea what a flow cytometry reading would have shown back in July when the auto count showed 1% blasts.  However, about 2 weeks later the flow showed only 1.1% - and I doubt that things fell that sharply.  That's why the MD also wondered why the auto count showed nada.  We'll see again in 2 weeks.

     

    In the meantime, my immune system must be doing something, because my allergies have been really horrendous all fall - and I usually don't have bad allergies in the fall.  I'm kinda praying that it'll go below freezing tonight, so it'll kill whatever's out there.  Perhaps our little snowfall will also help.  I live in upper Manhattan, so we had about 2".  I'm glad not to be in CT where some places got nearly a foot.  Lots of downed trees and therefore power lines.  A branch fell on my car - but fortunately only AFTER the car had a lot of snow on it - so it doesn't even look scratched.  It's soooo weird looking a trees in full leaf weighted down with snow.   Next week, it'll be back in the mid-50s - or so they say.

     

    Hugs,

    Karen

  • 14. Re: My next step???
    felursus Registered Users
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    Anyone here participating in or know anyone who is participating in an oral Vidaza study?  They are taking place in various parts of the country, notably at MDA and in Seattle.  I ask, because I might be participating in such a study.

     

    Thanks for any info you have to share.

     

    Karen

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