Stem Cell Transplant Questions

Anyone who has had a stem cell transplant, I have a few questions.

1. What was isolation like? Were you allowed to have a laptop? Books? Anything to keep yourself entertained? Could you exercise in your room? Request special foods? Have visitors?

2. When did they conclude that the transplant did/did not work? How do you know?

My husband has had two stem cell transplants, both an auto and an allo, in two years. I can speak to your questions, although it is not from a patient perspective.

1. Greg's isolation meant that visitors were limited. All visitors had to gown up, with gloves and a mask, and couldn't be around anyone sick at home or work. He was allowed to have a computer, books or whatever he wished for entertainment. Unfortunately, during his auto transplant (in which he received high-dose chemo prior to the transplanted cells), he didn't feel much like reading, surfing the web, or anything else. TV was the only thing he had much energy for, and even then, that was limited. Only after his cells grafted, did he regain any energy back to walk, etc. Food-wise, he was on a low-bacteria diet - which was supplied by the hospital. No fresh fruits, veggies. Everything cooked. He didn't have a big appetite anyway...

2. How do they know if it worked?? Big question. In Greg's case, the high dose chemo killed off pretty much all of his tumors. The transplant was mostly to rescue his body and give him an immune system again. Basically, it's watch and wait. There will no doubt be multiple scans (CT and PET) to see if any residual tumors grow (or if they come back). Blood tests will show if the transplant "took", as they will keep a tight check on your white counts. (They will likely bottom out and then ever so slowly climb again.) Greg was in the hospital for 12 days for his auto transplant, most of which he felt pretty terrible. The final 3-4 days was when his immune system just started to grow again, and then grow to a point where he could be released. (Isolation precautions followed at home too-- no plants, our cats had to stay with my mom, low-bacterial diet followed, etc.)

I would be happy to elaborate more if you want - just let me know. I wish you the very best and will send you good thoughts for a successful transplant!

Hi Shana,
My very good friend, Tiffany, has undergone two bouts of chemo with incomplete success. She's now scheduled for an auto stem cell transplant but has run into problems with that. Apparently, they were unable to get enough of her stem cells in their first two tries so she has to wait another week to try again. I was just wondering if your husband went through any similar experiences, and if so what happened? Also, did he do an allo because they had trouble getting his stem cells too? She is really scared and I would love to know what to tell her. Thanks!

I had a stem cell transplant in 2007 at NYPH on the east-side of Manhattan. I would think each Hospital is unique.

I was allowed to bring in whatever I wanted. I used my laptop and I brought in my xbox - honestly, after the first work I barely used them. I was pretty weak, etc. It is not comfortable.

In NYPH they had bike pedals where u sat in a chair and could pedal - again it's a strength issue.

I had DVDs, books, etc. Visitors came in with gowns/masks.

Special foods are not allowed b/c of your decreased immune system. They even give you a limited hospital menu. As well as the potential for mouth sores - I ate only soft foods/icees for about 2 or 3 weeks.

It isn't a fun experience and at times I almost thanked the mouth sores b/c I passed the time by falling asleep after my dilaudid injections.

2. They give you scans before and after the high dose chemo - then a follow up shortly after the transplant.

Also, expect blood transfusions.

cechg
I recently had a transplant. I'm at day 56.
from reading the previous responses, I can see that actual conditions vary from hospital to hospital. Conditions will vary according to transplant type as well.

I had a reduced intensity sibling allograft. During the countdown days when the reduced intensity conditioning was being infused (fludarabine, mephalan) I was permitted to leave the bone marrow transplant unit and I did this several times a day to go for walks or to get supplies I thought I might need. In fact leaving the ward was something I did right up until my total white blood cell count dropped below 0.5. This happened several days after day 0 when the donor cells were infused.

I planned ahead and took with me to the hospital things that I thought would make the hospital room and the experience of the procedure more comfortable for me. My supplies included food -cans of food, ice-cream, bread and cheese. I was able to keep these food items in the unit kitchen which I could leave my room to use.
My food preferences changed and I asked my visitors to bring other food during the course of the stay - nausea and vomiting can make hospital food even more unpalatable. As a consequence of nausea and food being paired I developed a Pavlovian response to various foods whereby even when I left hospital I felt like vomiting even just thinking about some foods.

I also took special decorative items to make the room and bed more attractive and I occupied my self in the first few days with the placement of these special objects which were invaluable in providing visual interest - you will have your own special things to take. I found not being able to see different sights one of the most taxing aspects of the transplant procedure. A supply of music also eased the stay. I selected objects and music that I thought would be calming and soothing.

The term isolation is a bit misleading - when I first heard it I imagined something like a prison cell - but nurses come in at regular intervals to do obs and to administer drugs. In addition I had visits from a registrar daily and from a consultant several times a week. I also had discussions with a dietician and a psychologist attached to the haematology department came to see me. A cleaner came to my room daily to clean. And on top of all this I had visits from doctors from the critical care unit when I experienced septic shock All in all this was hardly isolation and more like a busy bus station. I didn't want too many other visitors - previous experience in hospital suggested to me that having visitors can be stressful when I'm very sick and I preferred to telephone people when I wanted to talk to someone.

more on this topic tomorrow - very late now and i have to go

I recently had an auto transplant at UCLA on January 26th. My experience with isolation was not bad. I could have visitors 24-7 as long as no one was sick and they recommend that the visitors have a flu shot, but not required. I did find that I did not want visitors once I started to feel yucky, I would just rather sleep than visit so thats what I did. I had my laptop and my blackberry along with books, puzzles and I decorated my room with my Steelers stuff. I would imagine that you can exercise in your room, however you may not want to once your treatments start, as you will be very tired. Although, everyone is different. They should give you a low bacteria diet menu that you can order from. Personally, I only ate the first two days and then my radiation started and I ate nothing for 2 weeks - Ensure became my best friend. I could go on for days, but I have already put my entire experience in my blog. I am very raw and do not sugar-coat anything so if you choose to read, be warned - I hold nothing back about my experience :o) Here is the address if you are interested www.no-surrender-take2.blogspot.com