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Thread: GVHD AML Post Transplant Low Platelets

  1. #1
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    Smile GVHD AML Post Transplant Low Platelets

    Hello everyone,

    It's been a while since I last posted the thread I made called AML Leukemia No More Chemo. After I was in remission, in I had a long long stay in the Hospital like 5 Months in the hospital. It was bad all the treatment that finally got me into Remission. I had a lot of chemotherapy at a fast rate, as Po18guy stated. That's the way City Of Hope does it. On top of all the Chemo I had Total Body Radiation. This all left me with a lot of Burns all over my body. What comes with burns is blister. I had a lot of blister big blisters on the bottom of both feet and all over my hands. My skin was peeling everywhere behind my ears, my face my head. My hair was falling out everywhere too. I was skinny I lost a lot of weight I went from around 175lbs down to like 114lbs in no time at all.

    What caused it was I had mucositis so bad in my mouth and down my throat that I couldn't eat anything. So they started me on TPN just to get some food in me. Well, that lasted a while, until my liver numbers started rising up, they ended up having to stop the TPN. So I went almost Three weeks without any type of food. I looked like an ET that had been placed in the microwave on high for about 30 minutes. Anyhow after lots of time and treatments and mouth steroid breathing treatments, steroids all that stuff. I finally got over the mucositis in a sense. I still had even when the big sores cleared up, I still had small ones and eating was really hard. It also left me with hardly any type of taste buds and extremely dry mouth, the dry mouth still to this day hasn't fully gone away, but it is tolerable.Also, I almost went crazy in there, not eating and I had this problem of not being able to sleep for some reason.

    Plus it didn't help I was having these PVC's, my heart would just start skipping beats out of nowhere. Often times it was worse in certain positions. I was afraid to fall asleep and also even awoken a minute or two after I did. It got so bad when I had this I hate to say it, a type of stomach problem, I forget the name but it makes you have the worse "runs" ever. You can NOT absolutely control this at all. Anyhow, I started having these delusions from the lack of sleep. They had to have sitters sit and watch me during the day and night. Also to help me as my Blisters on my feet and stuff was so bad I couldn't walk to the bathroom or hardly even get out of bed on my own. I had to be wheeled to the shower and showered in one of those wheel ramp things. The water and soap and stuff, caused me so much pain and agony, even just getting me into the chair that rolls hurt me so bad. Finally, after like almost 5 months I was cleared to leave the hospital, but not the hospital grounds. So they let me stay in this little place called the Villiage which is like little apartments right on the Hospital grounds. I stayed there for just over my 100day mark, in remission. Going back and forth to my doctor every other day or so.Now that I updated that part of the story and now after I was finally able to go home. I had been doing great, I was going to my Doctors because it's about a two-n-half-hour drive one way from where I live, to Duarte, CA where the City Of Hope is.

    So I was seeing my Doctor once a week, then I started only having to see him every two weeks. Every so often they give me a Bone Marrow Biopsy. Well, all the way up till about mid-February 2019. I had been doing good until I got sick with some bug the first time. Then also I started getting like red rash type burning sensation inside my mouth on my cheeks in stuff. Turns out its GVHD and it has been going on for a while now. Finally, I got over the sick part, but my platelets had risen to around 97k. All my other counts are normal within range. However, since I've gotten this GVHD and that last sickness my Platelets have been on a downtrend. They went from 97k to about 47k. So my Doctor started me on a low dose of prednisone about 20mg every other day.

    Also, he put me on Tracolimus .5 every day, also a steroid mouthwash I'm supposed to do 4 times a day.So I started all that and then March 2019 rolls around and I'm now sick again with some upper respiratory type infection. My GVHD of the mouth is about the same. However my Platelets this time dropped from 40+k to now around 27k just in two-weeks from my last visit. All my other counts are normal still and in a good range. The doctor said we have to get rid of this GVHD of the mouth, he ordered a lung scan and all that to make sure it wasn't Pneumonia, before he increased my prednisone to 60mg every day for a week, then I'm to start tapering down to 40mg every day for a week, then to 20mg every day for a week. I'm still on the same .5 tacrolimus every day.

    The Doctor told me that it still looks like I'm in remission, from the blood test I had done, that shows how much of my brother's Stem Cell percentage is in me. It was 100%, also last BMB that was done not just long ago showed no leukemia cells. He said but he thinks it's this sickness and the GVHD that's causing my low platelets, however, he's not 100% sure. So as you can imagine this has me scared a bit and makes me worry throughout the day even though I try not to. It's really hard especially just getting out of the hospital and starting to readjust to my new life. I'm now 185 days post-transplant. I'm just hoping that this clears up and my Platelets start recovering. Also, does anyone have any information on Platelet treatments or anything that is pertaining to my situation?

    This is my first GVHD even though I had read up on it quite a bit. I've always had a hard time with my platelets and them being low all the time. like I said they hadn't got all the way up to normal that I recall after Transplant. However, when your use to them being down to 1k and transfusions every two days, man 97k is a Blessing. I'm sorry to have posted so long, it's just I wanted to give an update and I'm always really busy back and forth to Doctors and have been adjusting and now fighting this infection, I don't get on here as much. I'd like to hear from others who have been in a battle with GVHD and also low platelets after transplant and is in remission.

    Ok, everyone take care and I hope everyone is doing good.
    You can follow my fight with AML leukemia at link below.
    https://www.leukemiafighter.org

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Good to hear from you, but what a tale of suffering! You are one tough person fighting one tough disease. As to GvHD, there are clinical trials to control it. Your symptoms this cold and flu season seem almost identical to mine. Have been in and out of two ERs and two hospitals over the last three weeks. My red cells are tanking and they have no idea why. We discontinued the drug (Ruxolitinib) that was thought to be causing it, but pulmonary, infectious disease, and transplant follow up doctors cannot agree on what is ailing me. Every blood panel known to man has been done. We will know more as the results trickle in. but, back to you.

    Have you looked into a clinical trial for the GvHD? There are more and more available, as well as Jakafi and Imbruvica to use against it.

  3. #3
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    Well, not yet as it's all just brand new. It has just started here recently. I noticed I had got sick with upper respiratory, stuff not once but back to back. The first time that's when I slowly noticed the GVHD coming on in my mouth when I ate, I'd get these little water filled blisters that pop up and then they break or go away. however, my mouth would be red, with the typical look of GVHD and would sting with any type of spicy food. Afterward, blood test just started showing my platelets starting a downward trend, from around 97k the first to around 47k on the second test. So we started the low dose steroids of prednisone along with tacrolimus

    So two weeks went by and the GVHD hasn't really gotten any worse, just still there. However, platelets crashed double, from around 47k to 27k my last test. All other counts were fine. So this led the Doctor to increase the prednisone dose. That's where I'm at now. So I have this blood test in a week, then another week I go back to my Doctor. I'm hoping that the Antibiotics and stuff will work and things will start to clear up. My upper respiratory infection has, for the most part, cleared up and gotten better. The GVHD seems to be a bit better and definitely haven't got any worse, as for the platelets which always makes me so worried, I have yet to know. I'm just hoping they start to take off in the other direction.

    It's so hard to get back into life, always worrying, it seems like I just got out of the hospital not long ago, which has been months and months ago and here I am again. Just very stressful all the way around for me. I just to pray as much as I can and just hope for the best. It so hard for us man who has these cancers having to live life and all that is considered life's burdens, then to top it off, we have this whole other mountain of health problems, aside from the normal health problems, we also must juggle and worry about. I guess we are here and that is all that matters to me. I know I want to keep on living and I don't care how much I have to deal with as long as I can keep on going on living. I just want to feel normal again and not have to worry so much about my health that I can't control.
    Last edited by JohnnyG; 03-19-2019 at 06:04 AM.
    You can follow my fight with AML leukemia at link below.
    https://www.leukemiafighter.org

  4. #4
    Super Moderator Top User po18guy's Avatar
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    Post-transplant, your blood numbers will be on a roller coaster. That's just the way it is as your new marrow tries to figure out who it is and where it is. Mine is more or less stable at three and a half years, for comparison. Do you have magic mouthwash? It is a mixture made by the pharmacist and it deadens your mouth temporarily so that you can eat or maybe sleep. Speaking of which, if you are having trouble sleeping, there is an older, generic drug called Trazodone. It is mostly an anti-depressant/anti-anxiety, but mainly produces sleep. It is not habit-forming. Worth asking about. As a plus, it just might help you overall in dealing with life's issues.

    Also,as much as you can, busy yourself with life - so busy that you scarcely have time to stress on the GvHD. Also, if it is skin related, there is light therapy you can use. If it is attacking other body parts, there is a treatment process called ECP that may take a year or more,but modulates the immune system so that it leaves you alone. Not for everyone, but again, wworth asking about.

    Tell you what: why not start a thread in the transplant forum, as many can benefit from your experience, and you can benefit from the experience of others.

  5. #5
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    Can you move this to transplant forum, I've seen you mention that before, Where is this forum at?
    You can follow my fight with AML leukemia at link below.
    https://www.leukemiafighter.org

  6. #6
    Super Moderator Top User po18guy's Avatar
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    Done! We can talk about the various forms of GvHD and how we have combated them.

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    Thanks for that! Yeah so far it seems like the predisone is working to clear it up, it doesn't seem to be getting any worse. I'm just hoping that my platelets start trending up again. Also one thing I've noticed, is I think it's causing my eyes to dry out fast. I wear contacts so my eyes are always kinda dry anyways. However I have ruined a couple pairs of my contacts because my eyes are so dry. I use drops they gave me, but I just notice the contacts aren't lasting me as long. So I went down and bought me some glasses, $287 geeze!

    I'll probably never wear in public, because my eyes are so bad, I don't know though, time has changed, when I was young and wore glasses, they were huge big old thick lens would start a fire if you looked at something too long.. So maybe now days they have improved over the years. Anyhow I had to do something to give my eyes a break and I'm also on the computer all the time and we all know that doesn't help dry eyes.
    You can follow my fight with AML leukemia at link below.
    https://www.leukemiafighter.org

  8. #8
    Super Moderator Top User po18guy's Avatar
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    Does your transplant center have a dedicated long-term follow up unit? There are most likely some prescription eye drops which will help. Many of them are generic and thus, affordable. As to vision, have you been checked for cataracts? Age, chemo, prednisone and radiation (transplant prep) can all contribute to cataracts.

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    Actually no not yet. Funny you asked that, because that is on my top to do list here real soon. Because when I first left Missouri to come back to my home state for Cancer Treatment. I had one pair of contacts and I knew I was going to need more. So I went to sams club and had to get an eye exam done. Well the lady at the end of the exam told me I need to go see an ophthalmologist because to her it looked like I may have some glaucoma starting. Which kind of scared me a bit, because just not even two years ago, when I started having all these symptoms from my leukemia, well before I knew I had leukemia, I had been to several eye doctors due to seeing things in my eyes, not so much floaters, but just like blood cells n little flashes of white lights from time to time. Then even the optometrist sent me to a ophthalmologist and they found nothing wrong.

    However this lady said I need to get it looked at, but I had put it on my last to do list, due to obviously my Leukemia was first. I hadn't even had any treatment for my leukemia yet, this was all at the beginning. So now I will be having my eyes looked at, just as soon as I can, but once again I'm dealing with these platelet problems and GVHD at the moment. I'm going to City Of Hope so they provide me with just about anything I need. They are actually the greatest place I've even seen. Now I really believe in them being they were the only spot that I had been to and I been to a lot of university hospitals, that actually got me into remission, the rest gave up and just sent me home to basically sit and wait. The last one being UCLA Ronald Regan.

    It was just like yesterday it seems that I brung up the City Of Hope to you and you were telling me about them and how they bombard you and all that. I'm glad I found them, they do great work. Anyhow I have some personal question for you about this website, if you own it or when you started it if you wouldn't ever mind answering some of my questions. I've always been into websites, thats my hobby I've been coding websites and things for years ever since the 90's. I was a web Tv king too. haha! Anyways not to get off topic.
    You can follow my fight with AML leukemia at link below.
    https://www.leukemiafighter.org

  10. #10
    Super Moderator Top User po18guy's Avatar
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    I am a nobody. Volunteer here. Also beginning of glaucoma, optic nerve damage and cataracts that are really clouding my vision. However, I seem to have to wait until medical science can tell me if I am horribly contagious with some rare and virulent virus or if it's OK to see the optical surgeon.

 

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