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.
Hi @Debcosgriff how are you getting on? Are you still on track for your transplant at the end of this month?
My husband was diagnosed in January 2025 with Acute myeloid leukaemia (AML) with Flt3 mutations and like you and @katie.roberts had a very tough time getting him to remission. He like you was scheduled for a stem cell transplant and should be starting his conditioning chemotherapy treatment tomorrow. However, the last round of Flag-Ida has completely wiped out his bone marrow and his neutrophils have not returned. Consequently he has had C-Diff a picc line infection-which had to be removed and now he has fungal pneumonia- which is harder to treat than the viral/bacterial strain. His stem cell transplant has now been delayed as he is too unwell.
Just feels like he is never going to get better and recover from this awful disease, something always comes along and changes the plan. But this time feels really frightening. The consultant said that the medication alone won’t clear the pneumonia and so he really needs the new immune system from his donor, but his body is not strong enough to be able to handle the transplant. Just praying that they can get him to a better place soon.
Anyway I hope that you are doing well and that your transplant goes smoothly.
Oh I’m so sorry to hear your bad news and how unwell your husband is. Its such a tough journey and emotional rollercoaster.
Its been a tough few weeks as I relapsed again after the FLAG ida and was back at 18% Leukemia cells. They started me on daily Azacytadine injections and also Venetoclax which i’m still on. I had the good news today that I’m back down to 3% so can have my stem cell next Friday as planned but i’ll stay on the Venetoclax until my stem cell. Luckily not too many side effects but felt very ropey after the Azacytadine and lost weight due to not eating so trying to build myself back up again now.
Sending best wishes your husband’s way and really hoping that he gets better soon so he can get to transplant.
Hi Deb, sounds like you have had a very tough time. But thankfully you are at long last able to get your stem cell transplant. It’s been a long journey for you, my husband too.
Sending you all the best for the next steps on your road to recovery.
My husband is still recovering from his pneumonia but I feel hopeful that the wonderful team who are caring for him will also get him back on track for his transplant.
Good luck Deb, please keep us updated when you’re feeling well enough
Paula xx
Thanks for your message? I hope your husband is getting better? I’m waiting to be admitted today, scary time ahead but ready to get on with it now and face whatever I have to.
Really hope you have some good news soon ans your husband can get to transplant.
Sadly my husband has passed away, the fungal pneumonia was just too severe and despite everyone working so hard to get him recovered and fit enough for his transplant it became too much for him to bear.
His leukaemia had gone away and he was all lined up with a 10/10 match from a German donor. It was only with his donor neutrophils that he could have potentially recovered from the infection. But he just didn’t have enough energy and fight left in him to endure the four weeks that it would take for engraftment of the new cells to start doing their work.
So before he became too unwell to have any choice, he made the brave decision to stop the treatments and return home to die.
He had asked me way back when he was first diagnosed with Acute myeloid leukaemia (Acute myeloid leukaemia (Acute myeloid leukaemia (AML))) to make sure that he didn’t die in hospital. Together with the lovely nursing staff we moved heaven and earth and managed to get him home on Friday night and he passed away peacefully and pain free on Sunday afternoon surrounded by his family whom he loved so very much. We are broken hearted and full of sadness, but take comfort that he was able to come home and see all of his loved ones again.
No more beeping machines and the noise of the busy hospital ward.
Please anyone who is lucky enough to be getting ready for a stem cell transplant, do everything that you can to reduce the chances of infection. My husband loved to get outside for some fresh air walking around to keep himself fit. My advice especially at this time of year would be to wear a mask at all times as fungal pneumonia can be caused by rotting leaves on the ground that release fungal spores as they are walked through.
Good luck @Debcosgriff I really do hope that your transplant is going well. Thank you also to @Toadmum@SarahMum and @frankiesmumfrankiesmum for your supportive comments to my posts on this and other threads. I hope that your loved ones are doing well and keeping healthy.
I am devastated for you, I can’t imagine what you’re going through right now. What a brave decision for him to make and so glad he could pass away peacefully surrounded by loved ones.
Acute myeloid leukaemia (AML) is an incredibly tough disease to fight and it sounds like your husband did just that and gave it his all.
Thank you for your kind thoughts at such a difficult time for you. Its a tough process and has been a testing weekend but taking each day at a time.
Sending best wishes to you and your family and strength to help you deal with your loss.
I am so sorry to hear this news. It is a positive that your husband got to come home and was surrounded by loved ones. You should take peace in that and that you helped to make that possible.
@PAW68, My heart goes out to you. It’s good that you were able to fulfil your husband’s wishes and enable him to be at home. I trust this is a comfort to you in your grief and sadness. It is incredibly unselfish of you to offer advice to others regarding the risks of fungal pneumonia. Thank you. It shows the sort of person you are. I hope you have good support around you from friends and family who can reach out to you, and you to them. Please try to take good care of yourself and go gently. Warmest wishes Willow x
@PAW68 hi Paula , I’m so sorry to hear your lovely husband has died and send my warmest wishes to you for these days, and all those to come. How beautiful and moving that you were able to support that wish to die at home and for that to be where he left this world surrounded in love.
I hope you continue to be surrounded in love and comfort, we can be that place too. You and yours are in my thoughts xx