The Leukemia & Lymphoma Society - Fighting Blood Cancers
28 Replies Latest reply: Aug 27, 2012 1:59 PM by Tex RSS

Update -- Relapse -- and a couple of questions.

mocon Registered Users
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Hello all:

 

I have been reading for the last few months, and not posting much (or at all).  I do apologize.  I probably should post now and then, as I have always gotten useful information/support from all of you folks, and I would love to be able to help someone else.  Unfortunately, as of right now, I am, again, the one in need of your collective wisdom. 

 

In case you don't remember, I am 41, dx'd with AML in April 2011, no genetic abnormalities, intermediate risk.  Easy remission after 7+3 as of May 2011.  In August, after a few (three?) consolidation rounds, they found a 10/10 match in the registry, and I proceeded to MUD transplant Oct 8th.  I cruised through the transplant process and the first 100 days, aside from a little nausea and two outbreaks of skin GVHD that responded quickly to prednisone.  I even returned to full-time work on March 1, and started tapering off Prograf.  Then, on March 10, I got a cold.  Scared me, but it went away after a day or so.  My counts took a hit, but doctors seem unconcerned.  Then the counts stayed down.  WBC of @ 1.8, PLTs of 50 or so (down from 3.5 and 140, respectively).  My HGB stayed at @ 13, though.  So, they did a BMB, "just to be sure."  BMB showed 9% blasts, on April 6, almost exactly a year from my first diagnosis, and 2 days short of six months from transplant.  Donor chimerism was 74% across both cell lines.  Stopped all Prograf.  Docs recommended a 10-day course of Dacogen, since the relapse was such a low level, and a DLI.  They told me that while they could no longer say that my most likely outcome was a cure, they "expected" to produce a second remission, and that, given that the prior treatments had "barely scratched" me, there were a lot of options and a lot of things left to try.  So, Dacogen.  Absolutely killed my PLTs dumping them down to @ 10 or so, dropped my WBC to 0.4.  They gave me a small DLI, and said, "We'll wait for your counts to bounce, and absent a GVHD response, we'll give you another round in 4-6 weeks, and a larger infusion of cells in 6-8 weeks."  The DLI seemed to push my counts down a bit more, particularly my HGB, which fell to around 9.5.    At 5 weeks, my WBC had only come up to 0.9, and PLTs to @ 15.  No obvious signs of GVHD, except a retching feeling that I got every morning, and three or four times randomly during the day that the docs though might be a GVHD reaction, and, recently, an odd burning pain in my wrists and forearms.  So, Monday, the docs decided to to do a BMB because, "Your counts are probably just sluggish, but we don't want to give you Neupogen or anything like that if there are still blasts. So, we want to confirm that the marrow is clear and make the best decision possible about what to do next."   You can guess what comes next:  still 9% (actually 10%).   At the outset, the docs told me that the Dacogen often takes a second and even third round to kick in.  So, I've been told it hasn't "failed"  b/c it has, at least, held the blasts in check AND, since there are fewer cells in my marrow now, the same percentage represents a lower absoute number of blast cells.   Chimerism results are not yet available.  I see the doctors tomorrow, but the NP tells me that the initial reaction was that they would want to admit me and hit me with stronger chemo, because, although another round of the Dacogen might improve the situation, the marginal benefit from trying again is probably outweighted by the risk that the blasts count might skyrocket and that, "would be a much worse situation."  So, aside from "What do you guys think?"  here's what I am thinking about, in no particular order: 

 

1)  I am worried they are giving up on the Dacogen too easily.  They told me that it often takes a couple of rounds to kick in, and the disease hasn't progressed -- doesn't the same logic that made them try it in the first place (it works well on low level relapses and it is less toxic) still apply? 

 

2)  I suspect that the nausea/retching that I am having is a GVHD reaction.  It has gotten substantially worse exactly at the point they said it might kick in -- 4-6 weeks after the DLI.  I don't see how it can be the disease getting worse, since the disease is the same, and I have no symptoms of any other kind of virus or infection (and haven't had any at any point in this process), so what else is there?  One of the nurses said it could be the declining HGB, as anemia can cause stomach problems, but I am only at 9.5 and the intensity of it doesn't track with the numbers?  The NP told me that it is entirely possible that I could be having GVHD and still have 9% blasts, and that would be a good thing, but I feel like they should find out before they go belting me with a stronger chemo, right?  Isn't there a test they can do to see if my stomach issues are GVHD?  I feel like because I am not actually vomiting, they are not taking it very seriously, but I have had mild stomach issues since the transplant which got worse in Janaury at the end of my prednisone taper, worse in February when the tapered my Prograf, and worse since the relapse (when they stopped my Prograf, and, two weeks later, gave me a DLI.) Now, six weeks from the DLI, they are at their worst. 

 

3) This pain in my wrists and forearms is a kind of burning sensation.  I don't spend a huge amount of timing typing, this post notwithstanding, so I don't think it is carpal tunnel or something like that -- but has anyone ever had pain like this that was GVHD reaction? Or something else? 

 

4) I am having a hard time getting my head in the right place on this.  Until March, my post-transplant visits had the docs saying that I was the "model patient." Then, within weeks of trying to go back to my "normal" life, I had a relapse.  Then they did the Dacogen, and they told me several times, "No promises, but, this is exactly what we expect to see."   In fact, on last Thursday, one of the doctors went out her way to say, "I look at your situation, and your counts have dropped, so the Dacogen is doing something, you've stayed very healthy, and there is no sign of disease progression.  Overall, I am optimistic about you."  And on Monday, still 9%.  My family and friends are telling me that I have to "get back up and fight" but as I said to the NP, it's hard not to feel like I am only a few months from my doctors standing over my coffin and saying, "Well, we ALMOST got it."  Plus, I keep hitting these roadblocks just as it seems everything is starting to work, which, in some ways, feels so much crueler than it would be if stuff just didn't work.  The NPs comment was, "I understand, but we aren't going to lie to you.  When we can't do anything else, or when we think that all we have left are things that have very little chance of working, we'll tell you. And nobody here is giving up.  I showed both doctors your BMB results, and both of them reacted by saying 'ok, we'll try something else' -- neither of them said, 'well, we aren't fixing this'  -- and, trust me, sometimes they say that.  We have done a lot more to help people a lot sicker than you, and kept them around for a long time, so we need your head in the game and ready to go, ok?"  And I hear that, I do, but it is so hard to believe when I've had the rug yanked out from under me twice since Easter.  This isn't a question,  I guess, but I just kind of need to hear someone other than my friends and family say, who can't know what this feels like, say "Hey, this can be done -- because I felt like that, and I did it." 

 

Anyway, sorry for the length, and I hope that you are all well! 

  • Re: Update -- Relapse -- and a couple of questions.
    sarabrooks83 Registered Users
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    Dear mocon -- I completely empathize with your situation. It's so hard to remain positive and hopeful in the face of uncertainty, or when the results of your treatment aren't instantaneously achieved. Trust me, it's a two-step forward, one step back process. Full recovery won't happy overnight!

    I don't have enough time to fully address the remainder of your post -- I'll do some research on Dacogen tonight -- but in the meantime, I just wanted to give you some reassurance that what you're feeling is completely natural. Best of luck!

    • Re: Update -- Relapse -- and a couple of questions.
      mocon Registered Users
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      Thanks, sarabrooks83.  I am starting to get a little more optimistic and a little more determined, but it is not as easy to get there with the recent setbacks.  I keep telling myself that if you don't keep the faith through all the setbacks, then it isn't much faith at all.  It's easy to believe when everything is working -- a lot harder when things go wrong. 

    • Re: Update -- Relapse -- and a couple of questions.
      Tex Registered Users
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      You've been kicked in the soft spots.  No wonder you've gotten a little down.  I'm impressed you're still going.

       

      I think if I was in your situation, I'd want to sit down with my list of questions and the doc (not the NP) and make him/her defend the recommendations s/he is making.  Why suggest you quit the Dacogen if things are going the way they predicted?  However, also remember that was the initial reaction.  On further thought doc's often change their minds.

       

      The stomach issues might be GVH.  With what you're going through it might be stress, though, too.  And, of course, drug reaction is always a suspect.  The only way to dx GVH is a biopsy.  So if it's really bothering you, ask about an EGD (endoscopy) so they can tell you what's up there.

       

      As for your wrists and arms, it might be GVH.  It might be neuropathy as Kait mentioned.  It could also be referred pain from something like a pinched nerve in your neck and shoulders.  I had similar symptoms to what you're describing years before my AML and it was the pinched nerve thing.  Oh, in addition to burning, they itched like sin.

       

      Glad you're feeling more optimistic.  These are bumps in the roads, pains in the butt...setbacks at the worst.  You have every reason to keep fighting.  A lot of people have fought through much more and are with us today.

       

      Blessings

      • Re: Update -- Relapse -- and a couple of questions.
        mocon Registered Users
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        Thanks, Tex. 

         

        The doc mentioned doing an EGD, however, she wants to wait until next week and see if my symptoms get worse first.  She basically said that if it was only mild GVHD or none at all, then they are going to give me additional cells via DLI anyway, so there's no point in doing the EGD, since it won't change the treatment plan.  If the symptoms increase, she said she would delay the DLI and do the EGD to see what was going on. 

         

        I am trying hard to stay optimistic, but I am afraid, mostly that the docs seem to be jumping to more extreme plans every time I go in.  And each plan comes with the caveat that, "you are young and completely healthy otherwise, you've had no infections, no viruses, no serious side effects, so we can try [whatever the plan of the day is] and we have a good shot a positive result."   That should make me happy, but it seems like they are skipping steps because they think they can, and not considering that, if nothing is going to work, starting with the easy stuff and building up will get me some time that I might not otherwise have, AND has at least a chance of working. 

        • Re: Update -- Relapse -- and a couple of questions.
          Tex Registered Users
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          Take a couple of deep breaths and try to relax.  Let me give you something that used to help me.

           

          When I started obsessing, I'd ask myself some questions to try to get my mind off of it.  One that really helped me was this one: "If today was the last day of my life, would I want to spend it this way, worrying about the last day of my life?  Or would I rather be enjoying the day that's before me."

           

          Maybe that one's too close for comfort on the whole death thing, but I've always found that looking the beast in the mouth is the best way to go.  Name the problem and you control it.

           

          I think your mom has some pretty good ears.

           

          Blessings

  • Re: Update -- Relapse -- and a couple of questions.
    kait Registered Users
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    Hello, I don't have answer for your concern.  But i just want you to know that you are not alone.  My husband, 39 years old, was diagnosed AML on May, 2011. He had failed first induction chemo, and got remission from 2nd chemo.  while he was waiting for BMT, it relapsed. He got BMT on Sept, 2011 after strong chemo.  He had seizure 5 days after transplant.  It was side effects of immune suppressors and some odd facts.  He has a thickest chart and histories.   Everybody amazed when they saw him walking out the hospital.

    But his count never recovered. He needed transfusion of blood and platelet regularly. On Feb, his disease came back. Doctor  wanted DLI injection, but insurance company keep denied. We were appealing for DLI, but I just got a call from doc that it rejected.  That was last chance of appeal.  Meanwhile, he had 2 cycle of decitabine (dacogen), he still had blast cells.  Today, he admitted hospital for new chemotherapy.  They are using three different drugs for 7+5+3.  Doc said they never used this to other patient, but rarely used in Europe.  I don't know what is their plan after this.  He can't have 2nd transplant because of side effects of immunesuppressior.  DLI is denied. Insurance company starts to denying on his basic blood services. I feel like walking into the cloud.  But I still believe we can go over it.

     

    By the way, that burning sensation could be neuropathy. My husband has it on feet, back, and sometimes on wrist, and joints.

    • Re: Update -- Relapse -- and a couple of questions.
      mocon Registered Users
      Currently Being Moderated

      Kait --

       

      Thank you so much for taking the time to reply.  I am sorry to hear that your husband has had such struggles.  I hope that this new chemo does its job, and that he gets well.  It says a lot about you that in the midst of such a difficult time, you took the time to reply to and help me.  Your husband is fortunate to have to you at his side. 

  • Re: Update -- Relapse -- and a couple of questions.
    KyGuy Registered Users
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    I'm sorry to hear that you've been kicked back after doing so well.  I agree with making a list of the questions and talking with your doc.  Having the list will help you to be organized and allow you to make the most of the time that you have with the doc.  The doc may have just changed the course of action - that happens - but ask the question so that you're clear. 

     

    After my transplant, my doc always asked if I had stiff joints.  I'm not sure what painful joints means but make sure to have it checked.  I believe (but I'm no doc) that GVH in the joints usually manifests as stiffness.  That doesn't rule out GVH though.

     

    It's tough to return to the battle when you think you've finished it.  If you're not there yet, take some time to regroup.  Build your determination again.  It may help to actually set a schedule - "I'm going to give myself 24 hours to absorb what is happening and then I'll charge forward".  That's what worked best for me at least.

     

    Take care,

    Kelly

    • Re: Update -- Relapse -- and a couple of questions.
      mocon Registered Users
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      Thanks, Kelly.  Yesterday was a tough day for me. 

       

      My counts were up, but just a tiny bit.  I put the detail below, but the docs are talking second transplant, already, which I imagined as a "last resort" sort of treatment. 

       

      Funny thing, though, by the end of the day, I said to my mother, if I had gone in and the docs had said,

       

      "Your counts are up a little, so that's a plus, but it is not enough to do heavy chemo at this time.  The symptoms you are having might be GVHD and might not -- but the disease isn't progressing, and you are otherwise healthy, so we're going to wait a week and see if the GVHD symptoms progress.  You are four weeks from your DLI and that's when GVHD typically kicks in.  If we don't see progression in the symptoms, then we'll give you the second DLI without the Dacogen ahead of time -- the purpose of the Dacogen was to reduce your counts and control the disease to give the DLI time to work, and your counts are still down and the blasts haven't progressed, so we will just go straight to cells.  We'll see if you get GVHD from a larger dose.  Since you had GVHD from the original transplant, and you may be having a reaction to the smaller DLI, there's a good chance this will give you some more serious GVHD, at which point your counts may bounce or we may make progress against the blasts.  If your counts bounce, then we'll reconsider the chemo, and obviously, we'll do a biospy at some point to see what is happening and maybe there will be some action."   

       

      I'd have probably gone home feeling optimistic.  And, funny enough, all of those things are things she DID actually say -- many of them word-for-word.  But she spent so much time talking about a second transplant, and testing my brother and my Dad that I couldn't get away from that fear.  Meanwhile, my mother, who sat in the room with me, said, "I heard a doctor taking about a second transplant as 'Plan B' and starting to have it lined up, because it might take two months to get ready, and I heard her saying that she thought the second DLI had a decent chance of doing something.  And I heard a doctor who said that she gave reduced intensity transplants like this to sick little old ladies, and she wasn't afraid to give it to you.  None of that sounds bad to me."  It's odd how long it took me to even start to see it that way, and it is still hard -- I keep thinking that a second transplant, eight months after the first, is a death sentence. 

       

      Plus, I don't feel sick.  Aside from the wrist pain and nausea (which comes and goes) and a little blood on my toothbrush from low platelets, I feel pretty normal.  I'm feeling pretty solid; how can I be in this much trouble? Pretty sure if it weren't so foggy here in NY that I could go out and play a round of golf without any trouble, probably even could carry my bag rather than ride.  (although I am an atrocious golfer, so it is probably best for everyone if I don't).  Just that makes so much harder -- when they say my counts are too low for additional chemo, I find myself thinking, how can that be, when I am fine?  I'm working on it, though.  And I'm taking your suggestion, at 5 PM today, when the holiday weekend starts, I am done being afraid of this.  That's my schedule.  Thanks. 

      • Re: Update -- Relapse -- and a couple of questions.
        KyGuy Registered Users
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        I agree with Tex that your mom has good ears.

         

        I relapsed 4 years after my transplant.  It's extremely rare to relapse after 4 years.  I also relasped outside of the marrow with no sign of AML in the marrow which is also extremely rare.  This left the docs scratching their heads to come up with the best plan of action.  I understand what you mean when they change the game plan several times.  What's probably happening is that the docs are conferring offline and are adjusting their recommendations based on the latest results.  My game plan changed several times. 

         

        When I relasped, I was supposed to have 3 rounds of chemo after my induction chemo.  I handled the chemo well but after the induction and first consolidation, I get e.coli and ended up in the ICU.  The 2nd trip through the ICU left me very weak.  I was really concerned about having any further chemo.  At my next appt., my wife went with me and we were ready to take a stand against any more chemo.  Behind the scenes, my doc had talked with the transplant team in Seattle and they had already come to the same conclusion.  So when I told him I was afraid to get another round of chemo, he readily agreed.  So plans do change.

         

        The DLI is an attempt to kick in GVHD.  I agree that if you only have a small amount, they'll still want to do a DLI to kick in a higher dose of GVHD.  If you do need another transplant, it takes planning to get it set up.  They're probably just getting ready in case you need one.  When I went through this the first time (sorry to keep telling my story), they didn't want to talk about a transplant at all.  When I failed the first induction, they decided it was time to talk transplant.  They had my family tested at that point.  I didn't end up getting the transplant until the following year though.

         

        It's frustrating when you want things to move at a more controlled pace.  Try to find some relaxation therapy.  Our local cancer care community has Guided Imagery and some people say it helped them tremendously.  I've never used it but you may want to look into it for stress relief.

         

        Take care,

        Kelly

        • Re: Update -- Relapse -- and a couple of questions.
          mocon Registered Users
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          Please don't apologize for telling your story -- it helps to hear what other people have faced and what they have done. 

           

          My mom does have good ears.  And she's the toughest lady I know.  She comes from a small industrial town in rural Scotland; my grandparents lived there through WWII.  In fact, my grandfather was a medic/ambulance driver for the King's Own Scottish Borderers, and I've been told that he was one of the last men out in their evacuation at Dunkirk.  After they came to the US, he survived at least two major strokes and a couple of heart attacks in the early 80s.  So tough runs in the family. My mom deals with a sister who has ovarian cancer, her 90-year old mom, who has dementia, and a son with AML.  If she hears good things from the docs with all that on her back, then I guess I can, too. 

          • Re: Update -- Relapse -- and a couple of questions.
            tadly Registered Users
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            Hi Mocon,

             

            I'm heading into a PBSCT in July at age 64.  It (a type of reduced conditioning) was part of my treatment plan, from the first week of my AML diagnosis back in Feb. 

             

            Changes in game plans are tough. It's hard to be thorough in assessing and monitoring what's going on and what's being considered.  It looks like you've got some of that toughness that's in your mom.

             

            My experience with change in game plan is from being dropped from a clinical trial. From what I could research (I did much), it could improve chances of remission (including my FLT3+).  The docs showed confidence again in how well I reached CR in the induction. But in the 2nd consolidation, I had complications of capillary leak and later atrial fibrillation.   Despite the expected "efficacy" against the AML. it became too risky, in my doc's view, to do further consolidations in the trial.

             

            Hope to hear more about how you're doing.

  • Re: Update -- Relapse -- and a couple of questions.
    mocon Registered Users
    Currently Being Moderated

    Thanks Tex, Kelly. 

     

    I saw the doctor again this morning, and they dropped another bomb.  They are NOT going to give me additional chemo, right now.  One of the transplant doctors, who had consulted with the other transplant doctor and my general leukemia doctor, indicated that they are concerned that my CBC counts have not moved back toward normal five weeks after the Dacogen.   So without that recovery, they feel that giving just the strong chemo will put me at too much risk.  She said, "We can't have you walking around with a 0 WBC for weeks on end, and you have shown that your good cells are not going to recover."  So, instead, they want to proceed with a second, larger DLI from my donor, probably next week.  Based on the previous reaction, they expect that that will, at least, hold the blast cells in place for awhile, and there is some chance that it will knock out the blast cells and my counts will bounce.  However, in the meantime, they want to start looking for a second donor, and they expect to attempt a "reduced intensity" second transplant.  Their first choice for a donor is my brother, who is, oddly, an 8/10 match.  She indicated that they have some recent development that helps them separate the "good" half-match transplants from the "bad" half-match transplants, so they are testing my brother to see if he is a good candidate  (they are also testing my 70 year old father).   If neither of them is a candidate, she indicated that they would either look for new unrelated donor, or get additional stem cells from my current donor. 

     

    I pressed them on why they are giving up the Dacogen, and she basically said that she can't give me a drug that is going to suppress my counts when I am already this low, particularly one that didn't really reduce the blast %.   Their reason for avoiding the other chemo is the same -- if they give me this chemo they are putting me at too much risk -- so they want to just do the DLI.  However, since my issue has not been that the blasts progressed, but rather that the "good" cells didn't come back, she isn't sure the DLI will help.  Also, she pointed out that I had a "healthy" amount of skin GVHD after the original transplant, and I still had a relapse, which makes her concerned that even if I do have a GVHD reaction, it won't be enough.  So, even though she kept referring to it as "Plan B" -- their "preference" is to move to the mini-second transplant.  However, she pointed out that the pain in my arms and nausea could be GVHD, and if GVHD is kicking in from the first DLI, then they will wait and see what effect that has on the blasts and my counts.  If the GVHD kicks in and/or I get a bounce in counts, then they will reevaluate, and perhaps revisit the chemo option.  

     

    I asked a lot of questions.  Most of her response were to the effect of "We're going to have to wait and see where things are before we can really know what we can and can't do."  I was visibly shaken by the this (so much so that I had a  message on my home phone from the Cancer Center social worker when I got home) -- I had been told that they simply don't do two transplants within a year. When I said that, she said, "We don't do second full transplants, because of the chemo regime more than anything else, and a reduced intensity transplant will have gentler chemo.  You are a young, otherwise very healthy man -- we do these on little old ladies.  Realistically, it isn't that different than what we told you we would do -- chemo and then cells.   The difference is that a DLI is only lymphocytes, so it probably won't help us with the fact that your cells are not growing back.  Instead, we'll give you chemo and stem cells from a different donor -- which we would expect to stimulate growth.  In fact, if it is the best option out there, we may go back to the original donor, collect additional stem cells, and do a mini-transplant from him, but we need to give you the right kind of cells."  

     

    Again, I'm nervous -- none of the stories I have read on here, or accounts I've seen of other patients seems to have followed this course.  Plus, throughout this process, even before relapse, the doctors said to me that when people require additional treatment, they have a "laundry list" of all the available treatment options and that list always ended with, "and, of course, ultimately, we might pursue a second transplant."  I follow the logic of how they have gotten to this recommendation, but I feel like we skipped four steps.  And, not to put to fine a point on it, but fighting through each of those steps gives people time, even if they ultimately don't do well. 

     

    Also, I am wondering if all this is premature -- they say my counts haven't "bounced back,"  which is true, but this morning, my WBC was 1.0 (first time since the Dacogen 5 weeks ago), PLTs 20 (although I did get a unit on Monday) and my HGB was down a bit, but only 8.9.  I asked why they could give me Neupogen or something similar to raise my counts, and THEN give me the chemo, and she said that the flaw in that plan is that the Neupogen would increase the blasts, and probably not the "good" white cells, so I would end up with a higher white count, but 60, 70 or 80% blasts, which would make the chemo a lot less likely to work. 

     

    I'm doing a little better mentally, but still pretty scared.  Every time I go over there, the news seems slightly worse, and what they want to do gets slightly more dramatic.  On the other hand, there's still the possibility that a DLI next week will kick off some healthy GVHD, reduce the blast count, and my numbers will bounce a bit.  She didn't rule that out as a possibility -- in fact, she seems confident that the DLI will give me some GVHD -- but, for some reason, they seem to be strongly leaning toward going for the second transplant. 

    • Re: Update -- Relapse -- and a couple of questions.
      MJax Registered Users
      Currently Being Moderated

      Hi Mocon,

       

      I just wanted to say hi and assure you you're not alone.  I have relapsed too, just this month, and am still reeling.

       

      Our situations are a bit different in that my docs are pressing for a DLI, but I never had even a tiny bit of GVHD (and my BMT donor was my mom -- she's 70 and was only a haplo match) and I want nothing to do with a DLI.  I'm actually planning to transfer from Hopkins to Seattle in order to get a second BMT (this one would be reduced intensity since my first was myeloablative) from a fully matched, unrelated donor.

       

      I am not familiar with the chemo drugs you mentioned.  I've used Cytarabine, Etoposide, Mitozantrone, a study drug (MDX)...  But I will say that a similar thing happened to me in that the docs thought they'd go with one type, and then changed the plans as we got into action. 

       

      I strongly recommend getting a second opinion from another center.  Doing so gave me a lot more info than I previously had, and changed my perspective on some important things.  If you have any questions or want to chat further re: experiences, don't hesitate to let me know.

       

      Best wishes,

      MJax

      • Re: Update -- Relapse -- and a couple of questions.
        mocon Registered Users
        Currently Being Moderated

        MJax --

         

        Thanks.  It looks like we are in similar situations with reversed treatment plans.  I had a myeloablative transplant in October as well, but they used a 10/10 matched unrelated donor.  Now, they are talking about using my brother, who is an 8/10 match (which I am told is very unusual, as siblings are expected to be 0, 5, or 10/10), and doing a "haplo"  mini-transplant.  Sort of you, in reverse. 

         

        I actually had a second DLI yesterday -- but they are not optimistic it will do much more than maintain the status quo, as the donor cells don't seem to be growing back.  It's a very strange situation -- when they started the DLI process, they indicated to me that there were three possible outcomes: 1) it would put things back on track and no more treatment would be needed; 2) it would make a dent in the blast percentage, but either not get rid of it permanently or completely, in which case I would need more of the same treatment or stronger chemo; or 3) it would do nothing, and the leukemia would advance despite the treatment.  Nobody said, it might just hold the leukemia in place and drop your counts down so low that we will have to jump to second transplant.  It's a sort of purgatory -- I'm not getting sicker, but I am not getting better, and the doctors keep saying they can't leave things like this, but aside from a little fatigue, some nausea, and the pain in my hands, I feel completely fine. 

         

        I am thinking about getting a second opinion before I jump into the second transplant -- I did the second DLI without consulting elsewhere, b/c it doesn't alter their ability to do the mini-transplant, and I think it has a chance of working, because I have had some (although not much) GVHD previously, even if the doctors don't seem to believe it. 

        • Re: Update -- Relapse -- and a couple of questions.
          MJax Registered Users
          Currently Being Moderated

          Hey Mocon,

           

          Just wondering how you've been and what you had decided regarding getting a second opinion.  The process of seeking additional opinions was very daunting to me, at first, but now that I've been through it and have decided on a place to go and course of action to pursue (IF I get into remission here!), my anxiety has decreased substantially.  I'd be happy to talk if you have any questions or anything.  I hope very much that all is well and you're feeling good.

           

          MJax

          • Re: Update -- Relapse -- and a couple of questions.
            mocon Registered Users
            Currently Being Moderated

            MJax --

             

            Thanks! I did get a second opinion, but just a phone consult with a doctor at Dana Farber that I had previously seen.  I am now back in the hospital and headed for a second transplant, this one a haplo from my brother.  Given that I started with a low tumor burden, and that my brother is a preferred donor, the doctors are pretty optimistic.  Having a course of action does reduce my anxiety, and the folks here are so positive and supportive that it is kind of contagious.  Hoping that you are well, and looking forward to better health. 

             

            Mocon. 

  • Re: Update -- Relapse -- and a couple of questions.
    niciop Registered Users
    Currently Being Moderated

    Mocon, I always tell people that Xanax (or something similar) is my friend trying to deal with the stress and aniety related to having the dreaded AML. I have been battling my AML since Feb. 2011 with no end in sight. No two cases seem to be the same and everyone responds differently to treatment. But be prepared for this battle to go on and on...there doesn't seem to be a quick fix for AML as with other cancers. Things can change daily and quickly without warning. Sorry to not be more encouraging, but to me, this is the reality of AML. That is why I will continue to take my anti-anxiety medications and thank God every day I roll out of bed to face the ongoing, marathon challenges of this disease.  Perseverance, you must never give up and keep doing whatever the doctors tell you to do. 

  • Re: Update -- Relapse -- and a couple of questions.
    JBT Registered Users
    Currently Being Moderated

    Mocon,

     

    I agree with niciop in that AML is a disease that rarely is treated quickly with no hiccups along the way.  Keep the faith and take advantage of every tool out there that will help with your anxiety as you deal with this difficult situation.  You need to be at your best and trust your docs to do what is best for you.  If you think their course of treatment doesnt make sense then get another opinion, that is certainly your right.  I was diagnosed with AML in August of 2009 and it seemed that for several weeks every time I got any news it was not good.  Its hard on anyone to consistently receive news that we don't like and especially if we don't understand the logic of the docs treatment direction. 

     

    After weeks of bad news finally that changed for me and things got better. My treatments worked and I am almost 3 years post transplant and doing well.  I hope you experience something similar.  I have not heard you say thre were no options or that the docs are just completely stumped...that's a very good thing.  I know it's tough but take care of yourself the best you can, both body and mind, be patient and be positive.

     

    May God bless you richly.

     

    My best,

    JT

  • Update -- Relapse -- and a couple of questions.
    mocon Registered Users
    Currently Being Moderated

    So, thanks everyone. 

     

    I am now at Day +45.  I spent 30 days in the hospital, particularly enjoying my day of TBI.  On my first shot at this, I was only in for 20 days, and had no fevers or major side effects (other than hair loss) of any kind.  This time, a little tougher.  I ended up with a bit of gut GVHD, and I have had some skin flare ups -- but the donor cells from my brother (8/10, but performed as a haplo) seem to be very aggressive.  My chimerism has already reached 100% -- it took me nearly 100 days to hit that mark the first time.  All my counts are up, and I am feeling much better.  Now, of course, I spend the days worrying that I am not getting GVHD "enough" and this is just going to be another temporary fix, but I suppose that's better than a lot of other alternative. 

     

    Hope you are all well!

    • Re: Update -- Relapse -- and a couple of questions.
      Tex Registered Users
      Currently Being Moderated

      Sounds to me like you're getting plenty of GVH.  They say you want a little, not too much. 

       

      It also sounds like your brother's cells are hyperactive () and strong.   That's another good thing.

       

      Don't sweat it.  You might be a model case.

       

      Keep us posted.

       

      Blessings

    • Re: Update -- Relapse -- and a couple of questions.
      tadly Registered Users
      Currently Being Moderated

      My most frequent thought/worry from my unrelated donor transplant to now day + 40, has also been if the graft is doing its job, if I'm yet getting signs of a little bit of GVH.   It's understandable from your history. Glad to hear you got past the DLI and you are moving ahead as expected with this haplo procedure from your brother's cells .

       

      My transplant conditioning was non-myeloablative, meaning clearly no chemo component in it to go after residual leukemic cells that remain after my 3 chemo rounds of "complete remissions". I had radiation targeted at my lymphocytes in the lymph system, in a protocol to reduce acute GvHD but that is also heavily dependent on GvL to prevent relapse.  According to the docs I haven't yet presented GVH symptoms, it'll take more time and likely be in the form of chronic gvhd.  My current skin, gut and other reactions seems to stem from medication side effects.  I'm told that my blood counts show I'm on track.  Will be hearing soon the results from my chimerism tests.

      • Re: Update -- Relapse -- and a couple of questions.
        Tex Registered Users
        Currently Being Moderated

        On Day 38 I asked my nurse when GVH would set in...they kept saying they wanted to see some and I was getting concerned, too.  My nurse told me GVH always set in by about Day 40 and, sure enough, two days later I could hardly eat a bite and my gut GVH was settling in nicely.

         

        Let's see if you get it in a couple of days.

         

        Blessings

    • Re: Update -- Relapse -- and a couple of questions.
      KyGuy Registered Users
      Currently Being Moderated

      We all need our security blankets when we go through this.  You want GVHD to feel secure.  It sounds to me that you've gotten a good dose of security.  You just need to wrap it around you to feel safe now.  Don't ask for an extra blanket, you'll get too warm.  Just give it time to get comfortable in the blanket you have.

       

      Take care,

      Kelly

      • Re: Update -- Relapse -- and a couple of questions.
        CherylLynn Registered Users
        Currently Being Moderated

        I am 20 months post Haplo transplant with no GVHD so far - I am 100% donor cells and my CML so far is undetectable...they tell me that not all GVHD is detectable and that most occurs inside the body with no outward signs...

         

        Cheryl

        • Re: Update -- Relapse -- and a couple of questions.
          Tex Registered Users
          Currently Being Moderated

          That is weird, Cheryl.  I remember the first haplo situation I encountered, the guy had about the worst GVH I'd encountered to that point.  I have actually thought that GVH was one of the things they were counting on with a haplo.  Oh, well, this whole damned thing is weird, ain't it?

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