Over a year ago I was diagnosed with stage 4 Hodgkins lymphoma I was 13 weeks pregnant at the time. I had ABVD chemo which didn’t touch the sides then had my baby at 32 weeks when they changed me to GDP chemo. I also got sepsis in this time so had my fair share off bad luck. Unfortunately this chemo didn’t work either and I was put on immunotherapy in February which thankfully put me into remission after 3 cycles.
They are now staying I need a stem cell transplant from a donor. They can only find a 9/10 match and want to go as soon as possible while I am fit and in remission. The meeting about it were horrible and so daunting and felt there were 101 way I can die. I worry this is going to affect all my families life how do I keep a 1 year old from getting sick for two year and surely that’s not good for her either?
How do you cope when coming out of hospital? Do you have to isolate at home for a year and how do you keep you family from getting sick and bring that home?
I’m in a similar position with having a stem cell at the end of October with a 9/10 match and have 3 children, one of whom is at Primary School. I have a meeting in a few weeks to discuss the practical side of things but am also dreading the isolation periods, risk of infection and how to actually live life at home afterwards. Sorry I can’t answer your question at the moment but wanted you to know that I am having similar fears. I have relapsed Acute myeloid leukaemia (AML) so currently undergoing a 5th round of Chemo to get me back in remission. Sending hugs
Welcome to our forum. I am sorry to read about your diagnosis of Hodgkin Lymphoma and the difficult year you have had with treatment. All this and having a little baby to care for must have been so challenging. I hope you have plenty of support around you.
Meetings about stem cell transplants are really daunting and scary but I understand why your team want to proceed with it whilst you are fit and in remission. Do let your team know how you are feeling and the concerns you have so they can best support you.
I am sure you will get lots of advice here from other members who had had a stem cell transplant and have a young family. In case it is helpful, I have enclosed our booklet on Stem Cell Transplants Stem Cell Transplants It has a large section on managing your risk after your transplant.
If it would be helpful to talk this through in more detail. Please do not hesitant to give us a call on our nursing support line 0808 2080 888.
Please let us know how you get on. We are all here for you.
I had a Stem cell transplant due to another kind of Lymphoma ,a rare T Cell Non Hodgkin’s one called Mycosis Fungoides,and you certainly have to isolate in the hospital and can’t go out of the room except to go for treatments which can’t be done in the room like radiation.Once a released I suppose you’d have to ask the doctor but you have to be cautious due to a compromised immune system although I got out and about.Best avoid people who have colds and whatnot….if you can!I have had my first inoculations after about 7 months and have had Shingles but that one has a booster in September and a Pneumonia one.Plus I had the Flu and RSV ones about 3 months ago.I don’t know what my match was but my sister was only 5/10 so they went with a doner from Germany who was closer to my own cells.