I am day 90 after an autologous stem cell transplant. I feel great!
So please be encouraged.
The treatment does have some very rough spots, but you can get
through them. I have actually started to forget them.... sort of like
Each person reacts differently so my experience is likely to be somewhat different than yours.
I was in a clinical trial with Radioimmunotherapy and high does Cytoxan and
The most painful parts for me where spleen enlargement from the growth stimulating factor, mucositis form the conditioning, and an
allergic reaction to the chemical used to keep my stem cell frozen safely. All the above where handled well by my medical team.
Ask lots of questions of everybody. My husband was great in asking very good questions which helped us prepare for each stage of the
Keep walking throughout the treatment. Even when you don't feel much like it, as long as it is medically okay, try to walk. I did rounds
on the hospital floor! I think it helped keep oxygen levels high and muscles in better shape.
Keep up on your nutrition. When I couldn't eat, my husband brought me delicious chicken broth so that I could keep up a good protein
Have people send you jokes. Humor does help.
As you are doing, take one step at a time, one day at a time.
Please contact me if you have more questions. I would be happy to talk with you directly, if there is some way we can do that.
Some other suggestions that helped me:
*Try to keep positive thoughts coming your way. I stopped reading, listening, or watching the news.
I only watched uplifting videos, and listened to light books on tape, my husband prescreen the jokes so that they wouldn't be cruel.
I found that I needed all my mental energy for my healing. There were enough stresses without adding more from media and the world.
* Mucositis was relieved by Fentenel that I could just press a button and get every 9 minutes. The nurses can change the dosage.
It really helped to have control over the pain medication.
* Rinsing my mouth with salt water very frequently was a big help in controlling mucositis too.
* Everyone, including medical staff, coming into my room had to wash their hands or use a disinfecting lotion. The nurses told me to ask
anyone including them to do so if they forgot .
* Keeping my own hands away from my face unless my hands were just washed was very important to prevent infection. A nurse told me that
my own hands were my biggest potential source of infection. I still
follow this advice. Probably, there would be a lot less transmission of the flu if everyone did the same.
* Getting dressed once a day helped me feel better psychologically. No big deal if I didn't feel like it though.
* Getting cards, having people pray for me or think about me, made me feel supported.
* Your job right now is you. Ask for what you need.
* I found the whole process very interesting. Being engaged in it, made it easier for me. I am sure that other people do just as well
not being interested in the technical aspects, but are engaged in taking care of themselves and that works too.
Thank you for allowing me to offer suggestions. Somehow it helps me too to put the experience to work possibly helping someone else.
If you like, I could send jokes to your individual e-mail address. Just let me know:) Also if there is anything else I can do for you,
please let me know.
Please let me know how things are going.
Here's to your complete and speedy recovery!
Stem cell transplant June 15, 2005 for large B cell diffuse NHL diagnosed Dec. 2004 (Radioimmunotherapy, Cytoxan, Etopiside as
Jan. 2004 diagnosed with large B cell diffuse NHL, promace plus Rituxan
Feb. 2003 diagnosed with indolent B cell NHL , CV P plus Rituxan