Stem Cell Transplant Question

Has anyone undergone a stem cell transplant? My husband is scheduled to do this sometime in February at the University of Nebraska Med Center. They have been great in giving us info about the procedure, but it always helps to get the "scoop" from someone who's been there and done that. Anyone able to share their experiences?

I guess I should have clarified a bit more. As the caregiver, I'm just wondering what to expect. The med center tells us what the procedures are, but not really what the patient will experience. And as with any cancer treatment, what the patient goes through directly effects the caregiver. I just hope to be prepared to help my husband go through this whole thing with the least amount of trauma.

There are different types of SCT (stem cell transplants). My husband received a mini-allow stem cell transplant in Nov. 2003 in Hershey, PA. I am ONLY responding with "our" experience. My husband had Stage IV large cell follicular Non-Hodgkin's Lymphoma and initially given 3 months at the outside to live in 2001. I will tell you up front I lost my husband June 2005. Not as a result of the cancer or the transplant, but the physical breakdown from the medications and our docs were honest about this from day one of the discussions; you just never feel it will be you when you go through a couple of good weeks or months.Keep a daily diary of EVERYTHING -- in the event you peak and valley, you'll have a reference - believe me, don't rely on just your memory. WRITE IT DOWN!!!!! Keep a medication, food and "wellness" diary. Some symptoms are individually experienced and overall wellness that they feel or don't feel can be a window to something creeping up.

EVERY DAY will be different, medically, physically, emotionally and spiritually for both of you. The first 2 months were "relatively uneventful" was docs description. The change in eating habits is quite a trial when you know they need to eat. Instinct tells you the caregiver to be right there 24/7. However, the transplant was chosen for life and live life, not just exist. My husband experienced major GVH, a yr after transplant chronic kidney failure from the anti-rejection drugs and immunosuppressants post SCT, shingles,steroid induced diabetes, his skin would change pigment to almost black at times and change back (no reasons ever given for that). He drank an average of a 3 lb. coffee can of coffee a month most of his life; he couldn't stand the taste of it after transplant. He loved sweets and candy - everything he at at times was too sweet - at times even something vinegar based asted "sweet" to him. NOBODY could explain it but many people I talked to just like we are told me the same thing. Moods change with medication changes are inevitable. Everything the docs said "is a possibility but unlikely" happened to us. However, they didn't tell us about things like "PTLD", shingles, etc. when we started. The SCT was the last resort we had; we virtually ran out of time and options.

Through all the bumps in the road after SCT it offered us 2 yrs we didn't have and returned him to his dream of returning to work, gave us a chance to see his grandson be born and experience them together. It also gave us a chance to "TALK" and "PLAN" for all the possibilities. I am a true believer of making the most of each day you have together and when quality of life is staring you both in the face and becomes an issue it is still their decision to travel on or not. I caught myself on the not so good days spouting "we didn't go through all this for you to give up"...... then I stopped and remembered, it is not my body and honestly there are no books or rules and whether anyone choses to tell you, their bodies go through an emmence ordeal..... I had to remind myself daily, I am the CAREGIVER, the support person, I have no clue what's going on inside that body and honestly at times they don't either. I pray for you and your husband. You will find strength you never knew you had individually and together. Some look at mine as a tragedy because "he went through all that and still passed on", however, I was given two years I didn't have with the man I loved with all my heart and soul.. The transplant itself was a gift of life and postponed the inevitable in our particular situation. I wish you all the best and may God wrap his comforting arms around you both and your family. With God's help the walk will be much easier for you both.

I had a transplant four years ago. You didn't specify if it was an allogenic or autologous transplant because there is a huge difference between the two. I had an autologous transplant (where they give you back your own cells or marrow). I was in the hospital for a month and in my opinion it was probably harder on my family than on me. The first few weeks I was pretty out of it. Frankly, I preferred it that way, and the docs are pretty free with the drugs to keep you as comfortable as possible. I know for my family, it was really hard for them to see me so sick and doped up, and not a thing they could do about it. But, I turned the corner pretty quickly, and started to feel better. After the first few weeks, I started walking the halls the best I could, sometimes it takes a kick in the butt, but it is really important. At first it was one trip around the unit a day (and it was a small unit), and there were days when I just couldn't do it. When I got out, I continued walking as much as I could on a regular basis, and I do really think that helps with the recovery time. Within a couple of months I was up to a mile or two a day, and by the spring I was able to be in my brothers wedding, even after having radiation 3 months after the transplant.
If it is the allogenic transplant that is a completely different story, from what i have learned and seen, mainly due to the GVHD factor. I have a good friend who is 6 years out from her allo transplant, and she said the 1st year was hell for her, but she has since gotten her masters degree while working a full time job at children's services (40+hours workweek).
The biggest thing to remember is that every person is in a completely unique situation, from the type of cancer, to how their body reacts to different drugs, the type of treatment they receive, and their individual way of coping with a life threatening illness and treatment. In my opinion the biggest challenges for the patient and the family is the mental aspect, how you cope. Figuring out what you can control and what you can't, and having faith that in the end it will all work out the way it is supposed to.
I don't know if it is really possible to prepare for what you are about to go through, but joining some type of support group can be extremely helpful either on the internet or at some type of resource that is close to you.

I hope all goes well for you and your husband, and that this was somewhat helpful,

Stephen S.

Thank you both for the info. Some days I feel more capable of facing this challenge than others. We are about 3 weeks away from the transplant now and the prospect of moving our family to Omaha for up to 7 weeks is rather daunting.

Some additional info....
My husband was diagnosed 10 years ago with large B cell non-Hodgkings lymphoma. The affected node was removed and he underwent chemo and radiation. They considered him "cured" and sent us on our way. He was 36 years old at the time.
This new occurance, now 10 years later, took us by surprise. It is exactly the same type, just a new location in the lymph system. We are amazed at the new research and treatments available. The Dr.s prescribed the same chemo recipe and added rituxan and now the stem cell transplant. He is fortunate in that the cancer has not progressed to the marrow so they will be able to do an autologous replacement.

Thanks again for the information. It was good to hear about how quickly you "turned around", and the walking is a great reminder. I will "encourage" him as much as is needed to get up and exercise. Blessings to you.

at the link following, you can find a group titled BMT-TALK, and it is all about transplants with over 1000 people registered. and if your husband gets some GvHD there is a group for that. get a password so you can search the archive, it is full of great info. i did this when my husband was getting his and it helped me to learn alot.

http://listserv.acor.org/archives/

My wife had a stemcell transplant from an unrelated donor 50 days ago. She jusy got out of the hospital today. She has had breast cancer twice and then acute lukemia caused from the first breast cancer. She is 64 years old and has never given up. It has been a long strugle but we are doing better now. We have had many ups and downs in the last 6 years.NEVER GIVE UP. I felt like giving up as acare giver but I could't for her sake. Our prayers are with you. We are from MAINE and i have been living in a motel for 8 weeks. Hopefuly we will be ableto go home soon.