I just wanted to reach out and let you know that while I am sure someone will weigh in soon, that I will see if I can find someone who has had such an experience.
I'll follow up with you soon!
Has anybody had a Stem Cell Transplant? What should I expect?
My doctor talked to me about having a n Autologous Stem Cell Transplant today. The administrative process has already began. She gave me a book about it but I would like to know more about it from a patient/ Caregiver point of view! Thanks
I had a stem cell transplant for multiple myeloma in June. Here's how it went.
I was started on Nupogen injections twice a day. After a couple of days of that, then I went to the apheresis department where I got my injection, then they hooked me up to a machine that looks like a dialysis machine (and I was connected by a central line that had been placed in my right upper chest) that collecgted the stem cells the Nupogen was helping my body produce. (note-your transplant doc will determine how many cells they think they need based on your size). I was on the machine approxmately -4 hours start to finish. This was repeated every day for about a week. They then let my body rest for about a week. On May 30th and 31st, they administered the 'intense chemo' which was melphalan. This didn't take very long each day, but there is some prep before they deliver the melphalan-they hydrated me with IV fluid and gave me benadryl. The infusion of the meds only took about 30 minutes, but the total time was closer to 2 hours each time. They also have you eat ice chips during the administration of this drug to help prevent mouth sores-DO IT!!! I had a friend who didn't eat his ice chips very well as he was supposed to and he had a FIT with mouth sores!! The melphalan will make you lose your hair within about a week after it's administered. Some people also get pretty sick on it, but that also takes about 7-10 days. I was lucky-I had some nausea and diarrhea and felt pretty puny, but I wasn't toilet-hugging sick as I feared I would be. The day after the 2nd chemo infusion I began antibiotics to prevent any infections as my blood counts dropped (which they are supposed to do). On June 2nd, I got my stem cells. They ask you to suck on peppermints or some kind of hard candy because the preservative has a nasty taste-it made me cough and sneeze when I didn't have a mint in my mouth.
OK, so chemo given and stem cells infused-now what? 7-10 days you feel pretty bad. At 7-10 days your hair starts to fall out. HELPFUL HINT-I found it easier to cope with the hair loss by getting a short cut way before losing it, then as it begins to thin and look terrible, I went and let them shave my head. That way, you have control which is something we all lose as we go through all the treatment to control the monster that's eating us alive. Any way, you'll feel pretty bad for that 2 week period, but then, as your blood counts begin to recover, you'll start to get your energy and your appetite back. You'll have to go in daiy or every other day for lab work to monitor your progress and insure you aren't developing an infection or getting dehydrated. After about a month as your labs improve, the frequency of your visits will diminish. Pretty soon, you'll feel like a new person - and in a way you are because you have brand new bone marrow making brand new healthy cells that will hopefully put you in full remission.
I was warned about being in crowds for a while, even though my labs may be back to normal. Unfortunately, when they kill your bone marrow, they kill your antibodies as well You'll have to be re-immunized at the 6 month point post-transplant. I reach that stage in a week. They will do a bone marrow biopsy and check my bone density (my disease can attack the calcium in the bones and make them weak). They will also do extensive labs including a 24 hour urine. Since my disease is different, they may have a slightly different plan for you, but I think a transplant is a transplant and they treat us all pretty much the same.
Feel free to ask me more questions. My goal, since I've spent the last year undergoing 2 failed chemos, a clinical trial that finally got me to stem cell transplant, and then the transplant, is to share my experience with anyone who needs the information-kind of my way of paying back those who guided me through it and gave me hope.
Good luck to you and you'll be in my prayers.
P.S.-Some people have this done as an inpatient and they stay in the hospital for 5-6 weeks. I had mine as an outpatient. I was required to have someone with me at all times, but we didn't really abide by that. My mom took me back and forth and helped with housework during that 1st couple of weeks when I felt the worst. But, I was able to spend time on my own, especially since mom was not that far from me in case I began running a fever or got to feeling bad. I think what helped me the most was keeping a positive, optimistic attitude. I didn't quite hit full remission. I began maintenance therapy for my disease just last week to help keep me in partial remission. I have an aggressive form of multiple myeloma and we've had a real tough time controling it, but I don't care. I'm better now than I've been in 2 years. I'm also very lucky because I was only diagnosed 18 months ago, so I was treated quickly. That was probably because I was stage 3 (of 3 possible stages). Put on your Warrior Spirit every day! It will serve you well and help you fight and BEAT this thing that invaded your body! It will keep you strong. Then, when you're better, reach out to another who may benefit from your experience. We're all in this together!
Thank You so much Karen, this helps a lot. My doctors gave me a book to read but I like to hear what to expect from patients first hand so I can be prepared. I don't know if I will be an inpatient or outpatient through the transplant yet since I still have about 50 or so days till I will be getting it. I still have to go through IVE/MET first before they can start the transplant process. This is my first time having cancer and they wanted to do Stem Cell from the start because this type of cancer is hard to cure. Although its scary I'm going to go through it because it will increase my chance of survival from 20% to 60%! I'm just looking forward to beating this and hopefully starting a life!
Hi Elisabeth how are you doing after your Autologous Stem Cell Transplant? My husband went through this last september. It took a while to recover, but today he is quite strong and able to live a good life! The side effects will become less and less - wish you the best! If you have any questions just write!
know it has been 5 months but wondered how you are doing. i had a non-related donor transplant in sept, 2011, and had a relapse tumor in my underarm in dec, 2011. so needless to say it did not work for me but probably gave me more time than i would have originally had. i have been on every type of chemo available for NHL large B cell aggressive cancer. so now it has spread to my bones and i will get Paliative care along with a trial study drug at UCLA. do not know anything about it, will learn on friday of this week. it will only give me a little more stability and time if it works. sorry to be the bad news bear, but thought it better to tell my story as it is. know you will do well, let me know how you are doing, will keep you in my thoughts, Susie