• Tell me about a bone marrow transplant and how you made it through the ordeal.

    Asked by PamInColorado on Sunday, April 27, 2014

    Tell me about a bone marrow transplant and how you made it through the ordeal.

    11 Answers from the Community

    11 answers
    • TheSilverOne's Avatar
      TheSilverOne

      Hi Pam. After a prompt relapse of my non-Hodgkin's lymphoma, last April I went to Moffitt in Tampa for an auto tx (my own cells). It's no easy ride but I'm sure you know that already. It starts with 5 or 6 days of heavy-duty chemo as you count down from Day-6 to Day 0. Day 0 is the day your donor's or your cells are "installed" lol and will also be your new birthday. I had several days of difficult side effects, several days of brutal mucositis (do everything they recommend to avoid this!!), several days of full on hallucinating and pretty severe fatigue. What caught me off guard (I had been told it just didn't sink in til I was there) was in my head I expected Day 0 to be the worst and that from there each day I'd get a little better. The reality is you don't hit bottom until 4-6 days later. That was kind of disheartening and because my mindset was off, it made it feel somewhat worse. Once you pass that point it gets easy and just becomes a bit boring. As it happens I relapsed just 7 months later, went back on chemo, back into remission and prepping for an allo tx (donor cells) in late May. Instead of 5 weeks out of pocket, it'll be about 3 to 3 1/2 months. :-o Logistics with little kids at home are a nightmare! Hope my rumblings help. Happy to give you anymore info I can. Let me know if you have any questions. Would have loved to know some of this stuff before I went in!! Best of luck to you. PS I'm told the #1 controllable predictor of success is the level of activity you can maintain. Consistently walking 2-4 miles a day before and after. Good luck!!

      almost 7 years ago
    • PamInColorado's Avatar
      PamInColorado

      Thank you so much! It will help me prepare mentally to know that days 4-6 after transplant will be very difficult. Knowing this ahead of time will help me stay focused, I think. I certainly know what it's like on a smaller scale to not be told that a bone marrow biopsy would be painful, only to let out a yell when experiencing it. Definitely better to prepare for what the fight will actually feel like. Mine will be an allogenic transplant...not sure of timing yet. Sounds like you are facing this next month yourself? I hope everything goes as well as possible for you. And, I will definitely add more walking to my daily schedule. Thank you for that tip as well.

      almost 7 years ago
    • VickieGelso's Avatar
      VickieGelso

      Hi Pam, yes, TheSilverOne nailed it...I had an allo bmt in July 2012...I am in remission now, (had MDS) and doing fairly well...still not back to work yet, because I had small bout with rejection 1 yr ago, and am still on anti rejection meds. (low dose) and antibiotics. I am an RN, who worked in a hospital, and can not be around sick people yet to return to work. I thought the first few days of chemo weren't bad at all, till I got to the end of the 6 days of the heavy duty chemo. On day 0, the transfer itself almost seemed uneventful, they infused my brothers cells into me, just like a blood transfusion, right in my room, with my family, and a bunch of medical people all at my side. It was over in about 1/2 hr, and I can remember saying, "that's it?"...easy peasy !...but shortly after that, the s**t hit the fan...The side effects kicked in big time, with fatigue, n/v, (meds did help with that), and I also had the mucositis from mouth to intestines, with diarrhea also. It was not fun, but you CAN AND WILL get through it...You won't feel much like walking or doing anything for a few days, but do what you can, and eventually you will be getting stronger as each day progresses, and your activities will too as well. I was told it was like having the flu for 7 days or so, by another bmt patient, but it is so much worse. Just so you know...sometimes ignorance is bliss...As I started to recover from this, the days did seem rather boring and uneventful, and all you want to do is go home..My transplant was done at out of town facility, 45 minutes from my home. I didn't always feel like visitors, especially in the evenings, when I was most tired. I had my laptop to keep me connected to the world, and friends...Facebook and email were my best friends too...Try and keep a sense of humor about you...(I would post goofy things I said or did while on some pain meds, or the mortification of having a #2 accident before reaching the toilet,) and my friends all responded in kind, and with humor back...Trust your team BMT team, and do as they say! Even if you don't feel like it...they know how to get you back in shape, and feel good! Good Luck to you, and God Bless...Ask any time you have any questions, will be glad to help you through this!

      almost 7 years ago
    • workit's Avatar
      workit

      Prepare for it! Get your body ready for it beforehand. My blog comment on the physical challenge of what lies ahead:
      http://workoutcancer.wordpress.com/2014/01/22/regarding-exercise-are-we-doing-too-much-in-oncology-backwards-2/

      And, what is exercise for cancer patients? http://workoutcancer.wordpress.com/2014/01/28/what-is-exercise-for-cancer-patients-its-all-relative/

      You can read each day prior to, during, and after transplant here: http://workoutcancer.org/My_training.html#.U15ycuZdWuo

      I breezed through allo transplant, never needing a blood transfusion. I know a guy who ran, side by side, with his donor brother on the treadmills in the isolation ward - the nurses bet he wouldn't be able to keep it up, he did. FITNESS MATTERS, particularly when your hemoglobin drops. The much of the fatigue is from low hemoglobin, but that is just like mountain climbing, normal, you can still exercise, just adjust your expectations.

      I had a reaction to my brother's stem cells too, normal, slight fever and shakes, which only lasted about 6 hours and are manageable with medication. Blood counts bottom out about 1 week after transplant then enjoy watching them climb up!

      All the best to you through the transplant!

      almost 7 years ago
    • LisaLathrop's Avatar
      LisaLathrop

      The posts above are all pretty much what I experienced myself. I had 2 allo BMTs (my AML was very agressive and came back 6 weeks after the first transplant). I didn't have much GVHD because I regularly used the mouth rinses as much as I could and I didn't have much in the way of rashes either. My sister was a 100% match for me and I think that was a big factor. Boring..yes. My hospital's policy is 100 days after BMT before they let you go home...even though my home was just 20 mins. away. Reasoning? so they can monitor you closely because as much as we are survivors, patients have a tendancy in general to let things go too long before we call the Doc. Like "I'll wait until tomorrow or the next day to see if this will clear up on it's own." I met a fellow in a support group last week who did just that. By the time he did get to the hospital, it was via ambulance and the EMTs had lost him and brought him back once already before he even got there. What I didn't do was get up and walk the halls as was recomended. The result - atrophied muscles. So as they others recommend - do as your Docs and PAs say...they know what is best for their patients even though everyone's journey is different. The worse part of my post BMT was GI effects of a chemo pill I have to be on for the rest of my life. It is to block a mutation on my DNA that allowed me to get AML in the first place. The initial dose was waaaay too much and caused much rectal bleeding....it has since been paired down from 4 pills to 2 in the hospital and that was a tremendous help. Now I just take 1 a day...sort of a maintenance dose which only side effect is heartburn and I take Nexium for that. With all the side effects, nausea, etc...I still am grateful that I am ALIVE!! Good luck to you and God Bless : )

      almost 7 years ago
    • mlaperle's Avatar
      mlaperle

      I was diagnosed with AML and had a bone marrow transplant. I had severe side effects from the chemo having n/v, c-diff and high fevers, many platlet transfusions which caused the rigors(shakes) so I would be premedicated before transfusions to help with symptoms. It took 2 months of being in the hospital before I was in remission , then sent home to get stronger before bone marrow transplant 5 weeks later. My sister was my donor, and I had another 5 days of chemo before the transplant which it took 4 hours to infuse into my central line. Then I went home 2 days later to recover. I was in a hospital that was an hour away, so I had to be seen 3 times a week for a couple of weeks then twice a week then weekly for a long time. I was housebound for 100 days except for doctors visits which you have to wear a ;mask and gloves at all times outside of your home. I too kept exercising throughtout my whole treatment to stay strong. Yes, the fatigue is tough but keep moving forward. A lot of it is you have to want to get better and have a positive attitude and it will get you through it. Have family and friends help whenever they offer and you concentrate on your recovery. I too am a nurse and tried to go back to work but I could not do it. I was a school nurse seeing on average a 100 students a day and I was exhausted and so worried about getting sick from the students. Now I am adjusting to my "new normal" as they call it and reinventing myself. I feel it is a miracle to be alive but I have had many changes in my life due to my illness but I am trying to embrace the new me! Wishing you the best and hang in there! Bosox

      almost 7 years ago
    • clemsoncash1's Avatar
      clemsoncash1

      I was diagnosed with CML that had blasted as ALL. I went through a full stem cell transplant (cytoxin and Total Body Irradiation) in May of 2011. I did not do very well with the mouth rinsing before and during the transplant, and ended up with alot of mouth pain and sores. This was by far the worst part for me. I also had some acute GVHD of the gut about day 15, it was uncomfortable and pretty miserable (like a super stomach bug, for a point of reference). I had some nose bleeds and got a few platelet and blood transfusions. I made sure that I walked or rode the bike every day i was allowed to (about day 4 the doctor told me i shoudl take a couple days off to rest). I think that made a big difference. I was also in good shape when the whole process began. I also showered every day. This was annoying with the chest catheter, but definately made me feel better each day when I was clean. The routine of exercising twice a day and showering helped with the mental side of things too. I was in the hospital for nearly a month and days can be slow, so the routine helped. It is a slow process and takes time, but I am blessed to be back working and living a full life. Good luck to you and I hope all goes well

      almost 7 years ago
    • DaveR's Avatar
      DaveR

      I had H&N cancer, but my doc put me on Healios to prevent mucositis. They have studies on there saying that it also works for BMT. I read everyone else's experiences and feel incredibly lucky. I wish you all the best of luck with your treatments, my prayers and thoughts go out to you.

      almost 7 years ago
    • PamInColorado's Avatar
      PamInColorado

      I am rereading all of your advice, because my hospitalization date is fast approaching. Had a minor setback because my appendix decided it needed to be removed last week, thank goodness it happened before they eradicated all my bone marrow!
      I am usually an upbeat person, but the impending transplant has me getting scared. The fear is of how badly I will feel for a long time and of possible infection, rejection or complications. I will admit, in am even fearing the placement of the port and the hair loss. My transplant will be from cord blood, they ordered the cord Wednesday, expecting it to be here from France in about two weeks. Two weeks, ok, this is getting close. I am actually breaking down in tears a couple times in the past two days as this reality is sinking in. Thank you all for the encouraging words, it is helping!

      almost 7 years ago
    • Bosox's Avatar
      Bosox

      Dear Pam, I know it is a long haul to get through a bone marrow transplant but just take it a day at a time and try not to look so far ahead. You will be amazed with yourself of all the inner strength you end up having to help you get through this process. Rely on the great medical staff, your family and friends along the way throughout this long process. Lastly, I would tell you to follow all the rules and you will get through it

      almost 7 years ago
    • VickieGelso's Avatar
      VickieGelso

      Hi Pam...ok, you have the information you were looking for...now, don't let that info paralyze you with fear for the upcoming event and treatment! Remember, this will save your life, there is no other option! Worrying now when nothing is happening, is a useless waste of time and your energy! Save that for the fight of your life. Everyone reacts differently to life changing situations, and all will have different, yet similar experiences for the same diagnosis. You can do this, and you will see by taking it one day at a time. You will not only get through it, but be so much stronger than you ever were before! Don't let the fears of "what if's" overtake your thinking. Live in the day you are presently in, and just keep moving forward! Good Luck and God Bless you on your journey! Vickie

      almost 7 years ago

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