I've recently undergone a reduced intensity stem cell transplant. I'm at day 56 now.
I would like to know about the experiences other people have had post-transplant.
The lymphoma I was being treated for was angioimmunoblastic t-cell lymphoma, AITL for short. I am finding it difficult to get adequate information from the hospital staff about what is happening to me and this has been an ongoing issue throughout the course of my treatment.
I want to know about:
- the significance of chimerism testing results and I also want to about
- fatigue and how other people have managed it
- what I can do for myself to live well at this time
what i want to know about is the kinetics of chimerism following stem cell transplant and the significance of the results obtained during routine chimerism testing
I am sorry I wish I could help but I had two high intensty stem cell transplants,and the only I can help you with is the fatigue part. I am 5 years in remission and still suffer from fatigue, although i can't blame it all on those procedures. In july of 2010 I was hospitalized for a month because I was bitten by a rare tick, which if my imun system was not so low I could have recoverd at home, it would almost be like the flu. Unfortunately that wasn't the case for me That bite caused a diease called erhlcious(not sure of the spelling) which caused me sepis and a month long hospital stay.So sfter having a transplant if you are imunosuppresants you need to be very careful of illness others may have. In my case I was sitting on the lawn in my yard with my grandson, didn't feel anything and within 5 days my body was shutting down. I hope I am not scaring you that's not what I want to do,but yes the fatigue is still a part of my life I hope Im not scaring you but I hope this helps
Hi Loonereclips I still have fatigue, when I speak with my oncologist he doesnt seem to think it's related to the transplant it self. I am on depression medications and he seems to feel my fatigue is greater linked to that. When I first had my transplant yes fatigue was a large part of the transplant. It took a while for that down right exhausion that I felt with doing the slighest thing to go away. Other complications I have experienced is the inability to fight off the most simple common cold. I have a 2 1/2 year old grandson that I watch and the last two times he had a common cold I became sick, the first time I had a 5 day hospital stay because it turned into pneumonia. At the moment I am fighting off another lung infection. So my advice is if you are on immunosuppresants you need to be very careful. I have only lost approx 10 pounds pre cancer but have lost alot of muscle tone. I am no going to the gym to start building up my muscle and strength. I hope this helps, and I would like to no your progress as you continue your journey. Peace
It seems like you have done really well - no graft versus host disease - amazing! Not to take away from the awfulness of pneumonia and lots of colds, but still amazing!
How come you had two transplants? Were they both allogeneic or was it a tandem auto followed by allo procedure?
What do you think is causing your fatigue? Do you think it is depression?
Dear Sally, I do have graft vs host disease, do you as well? The reason I had to transplant was excately what you guessed, I first had my own cells, and unfortunatley my cells still had cancer cells after having high dose chemo. It took only 1 month before I became sick again. My cancer was stage 4 large T-cell lymphoma, so there was a rush to figuare this out. I then had my two sisters tested for possible transplant. Well in the end both sisters were 100% match, but unfortunatley but also fortunately my older sister had testing done and she was found to have a beign tumor in her brain! So I received my younger sisters cells. The process was long I needed to wait a few months in which if I can remember I was taking oral chemo medication. My first transplant was done in july 2005 and my 2nd one done november 2006 it was a long process and very taxing on my body. My sister's cells put me in remission it will be 6 years this nov.How are you feeling, I know it hasn't been to long since your transplant. I hope your well Peace Deborah
The other question you asked about my fatigue baing related to depression meds, I beleive that may be true. I am on alot and the reason being is that not only did I have to fight cancer I had a brain bleed in march of 2007 and that's when my husband of 24 years started having an affair with a "girl" one year older than our son. So he literally Broke my Heart. What he did was far worse then any medical procedures I endured. I literally went into a depression where I was in bed for 6 months. If it wasn't for my youngest daughter who was 18 at the time I don't think I would be here. Just writing this brings it all back, and makes me realize how it still hurts. But I am still here God didn't want me yet now I am just trying to find happiness again. PEACE Deborah
Dear Aruba, thank you for sharing what you know inspite of the terrible memories it brings up. So glad you made it through that and are here, God Bless!
Gma KB
Leaving you when you were ill! I am really sad to hear that. When I read that I was sorry that my queries may have brought this back to you. I really appreciate hearing from you, so thanks.
Reminding me to be careful about catching diseases is sage advice. It is hard to keep up the vigilance and I'm a bit slack sometimes - I hug children and I pick flowers.
I wash my hands all the time - much more than I used to. I don't do any gardening and I don't go out much, although that is mainly because I have been so ill.
Can you tell me about your graft versus host disease now. What immunosuppression are you taking? How much does GvHD affect your life now? Is there anything you have found helpful?
Sally My graft Vs Host disease seems to be getting better for me as my eys are not as dry and painful as they were.In fact when I seen my transplant Dr last week he found no evidence of graft vs host in my eyes, he was extremely happy and so am I. That was a big quality of life issue for me. I don't know if your expierencing any graft vs host issues? It h as affected my skin two, by giving me dark pigmentation on my abdomen and arms.(nothing a day in the sun won't fix) lol I am and always will be a sun lover. The immunosuppresants I am on is called cellcept I take 2000 mgs a day The only thing I am scared about that is that my Dr wants to start lowering it at the end of the month by 500mg. It scares me because another oncologist lowered me and I had such a bad flare up of my eyes it was if I was blind, the pain being so bad I couldn't open them. So I am hoping now that he see's that it's under control this will work. The reason he wnats to decrease it is because my immune system is so low. As far as the ability to sleep it really did effect me, I am not able to sleep without prescribed medication. At the stage that your at now coming further from your transplant daterest, it's important to get good rest. I hope you have support helping you with just every day things. I needed help for a while after my transplant, my body had gone through so much in such a small amount of time. Let me know how your doing I like to hear how your dealing with it
How do you feel about shifting this discussion to a thread called Exhaustion and Weight Loss? There is another person there who has had an allogeneic stem cell transplant.
It would help me because then there would be two other people, besides myself, with similar experiences in the same virtual place - easier for me to follow.
I am taking cyclosporine and my doctor wants to start tapering too. This is scary! On the other hand, for me it is also necessary, because lower immunosuppression may help to maximise a graft versus lymphoma effect.
WOW I am stll simply amazed at what can be done and what one will do. Thanks both of tou for sharing your experiences...there are many learning from both of you! Thanks again!