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stem cell transplant experiences

whatdoyousay
Posts: 15
Joined: Nov 2009

I am going to donate my stem cells to my 32 year old baby sister in December. I am not afraid for myself, but for her. I would love to hear stories, and get support from those who have been through this experience. She has had both hodgkins and non-hodgkins, both Epstein Barr + after biopsy. Hopefully, after the transplant she will be able to get the new treatment which kill this nasty virus. Please offer whatever you can. I would appreciate it greatly!!

DennisR
Posts: 148
Joined: Sep 2009

Hey What,
I had a transplant in February, but used my own stem cells. The procedure is easy, you get a large IV inserted and just lay on a bed for a few hours while your blood is curculated through a machine which collects the cells and the blood is put back into your vein again.
It may take 2 or 3 attempts to get enough cells to perform the transplant. They like to have a min of 5 million, but more is better in case of a rejection.
I was only able to get 2 million, but they did the transplant anyway because there is less chance of rejection using your own cells.
I knew a number of patients that used cells donated from a sibling and they didn't have any problems with the transplant.
The transplant itself is no cakewalk, but depends a lot on your general strength snd health when you do it. Normally they do full body Radiation treatments followed by a very strong Chemo which kills all the cells in your body, then they put the stem cells back in again and watch and wait for them to begin to reproduce. Up to 3 weeks without an immune system in a very dangerous environment. That's the dangerous part. Sometimes people attempt a transplant as a last resort and it can be quite dangerous for those with serious COPD,heart problems, etc.
I was NED when I did the transplant as a precaution or at least a hedge on preventing another recurrance. So far it appears to have worked.
Hope this helps. Also there is a book you can get that explains the procedure in great detail...it's "Autologous Stem Cell Transplants" by Susan K Stewart...I bought mine at Amazon, but the hospital gave me one as well.
DennisR

whatdoyousay
Posts: 15
Joined: Nov 2009

Hi Dennis,
Thank you for your response. It is nice to hear from a survivor. My sister is very strong and healthy, and you wouldn't know she had cancer if it weren't for not having hair. She has tolerated all of her chemo well, and has been in remission following each treatment. She will be in full isolation for 3 weeks at the hospital, after the transplant, which will follow the next few rounds of chemo. They found cancer in her bones, on one side, dispersed cells after the last bone biopsy, so she cannot be her own donor.

A few questions, if I may. What is NED? I haven't heard that term yet. Also, for a sibling donor, do you know what the recovery is? I am going to be there for 7-10 days, will the effects of Nuepogen(sp??) and Hickman catheter in my chest last any longer than that? It doesn't really matter to me, but I would like to be prepared. I have 2 children and want to be able to have all the support necessary for them.

Also thanks for the book recommendation, I never even thought of books available. I think cancer has taken a few of my brain cells!

Thank you again!!!

DennisR
Posts: 148
Joined: Sep 2009

Hi What,
Sorry to take so long to answer, been out hunting and out of communication.
NED is "No evidence of disease", a terminology sort of unique to this website.
As near as I could tell the average stay in the isolation unit of the hospital was about 3 weeks, after that most of us were outpatients until our WBCs, RBCs etc built uo to a certain level and maintained it. Usually a month or more, I had the BMT on Feb 10th and was home at the end of March, some others were somewhat longer in recovering for one reason or another. Sometimes, after chemo, the marrow is reluctant to produce cells.
It's great that your sis is doing so well with the chemo, I also did well with the Chemos & radiation, I think it helped in my recovery as well.
The book I mentioned is a great source oof info for both BMT procedures and gives good and accurate info on what to expect and what to watch out for. Care of the Hickman is critical in order to prevent infections, the nurses will show you how to do it, be very careful and take no shortcuts. Those that did had some serious setbacks.
I don't tink you'll be Neuprogenic from the collection of cells, all of the donors I knew recovered rapidly, within a day or so, and went home.
Most of the Lymphoma type cancers do originate in the marrow and spread thru the lymph nodes, so it's not unusual to find the cells in the bones, hence the BMT, which is designed to get rid of the cells that are being reproduced in the marrow. (Layman's explanation) My Oncologist called it "burning the field" and starting anew.
Good luck to you and your precious sister.
DennisR

HOUNDDOG 1957
Posts: 4
Joined: Apr 2009

Hi Dennis, My husband has a stem cell transplant in June and still has not got much energy. I just wanted to know if you still have problems with being tired and sleeping a lot? How long can we expect this kind of fatigue? Also, he has practically no appetite. Kind of makes himself eat. Thanks!

overlord
Posts: 2
Joined: Nov 2009

Hounddog, I had a stem cell transplant in March of 2006. I have been cancer free for 3years,8 months and 26 days.I still have some bouts of fatigue, maybe once or twice a month. Up to 6 months after my transplant I would get exhausted just from taking a shower, but eventually started to build up strength.The eating part will eventually come back. Hope this helps in any way, tell your husband to keep fighting.

HOUNDDOG 1957
Posts: 4
Joined: Apr 2009

Overlord, Thank you so much for your response. Some days are better than others so hopefully, he is getting there. It is always great to hear success stories!! Thanks again.

overlord
Posts: 2
Joined: Nov 2009

No problem. If you have any more questions feel free to ask.I will share my experiences with you if it can help you and your husband.

DennisR
Posts: 148
Joined: Sep 2009

Hi Hounddog,
I still have a lot of fatigue, still sleep a lot too, even after nearly 9 months. They say it takes at least a year to begin to see some normalcy, I believe it. It's a slow process, I stay as active as I possibly can and that seems to help.
My appetite comes and goes, but I do eat 3 squares a day and drink Ensure every day. Some of the post transplant meds seem to have some side effects as well, not like chemo did, but still a trifle bothersome.
So far I haven't had any sickness as a result of the low immune system, not even a cold, so I may have a bit more immunity than they think I have. I operate a small business that has a lot of customers daily, so I'm exposed a every day to whatever is going around, flu, colds, viruses, etc.
Keep on keepin on
Dennis

HOUNDDOG 1957
Posts: 4
Joined: Apr 2009

Thanks, Dennis. It is always so good to hear from people who are experiencing the same thing he is. I appreciate your response. Take care.

whatdoyousay
Posts: 15
Joined: Nov 2009

I wanted to thank you Dennis and Overlord for your support and information. It help so much to see you surviving this and being positive in your fight. My day for donation will be in January, once she is free of cancer in her bones(one more round of chemo this Wed. 5 days in-patient). I feel positive that once we are able to move forward she can beat this, thanks for your inspiration.

711tom
Posts: 44
Joined: Mar 2010

Hi Dennis, I am considering a BMT now. I am 52 and am in good shape other than the cancer. I was a little disturbed to hear the effects of fatigue continue for such a long time. My DR made it sound like a BMT was really easier than a 6 month regiment of CHOP, in that the chemo is concise and you start getting better everyday rather than go through 6 months and start to slowly get worn down. You also mentioned post BMT drugs and side effects. What are these and how do they affect you? I was told that the AUTO has almost no chance of rejection, is that not true according to your DR? I am really concerned about this procedure and how it affects my life, my job etc. I have several other chemo regiments available and Zevalin but my DR said that for a Longterm remission this was my best option. I was dx in 1993 and have had CHOP, Bendamustine-R and another modified version of CHOP in 08. I just had a scan yesterday and he told me it was appropriate to start thinking about a treatment sometime this year.

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