Hi everyone
I will be having a stem cell transplant. The treatment is starting on 9th April. I’m pretty scared to be honest and worried about how ill I might be for the first few weeks. Am I going to be sick and exhausted? I’ve got a lot of support, and people saying they will visit me. Will I be up to this?
Then afterwards….. if all goes well and I get home, how long will I be exhausted for? When can I start hiking again? And what about gardening? Those are my passions.
Any thoughts, advice or support would be so so welcome
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Oh @Deborah1 a great big welcome and you are now part of our forum family.
I really feel for you because I think the unknown is really scary.
We are also such individual people with our own medical histories and the way we react to treatments is also unique.
I hope others will be able to share their personal experiences for you.
Personally I would ask my fears, questions and practicalities of my specialist nurse or medical team as they also know your whole medical history and treatment regime and the way their own hospital works.
Perhaps a lot of your questions there might not be a definitive answer to.
Perhaps it might be a time for asking for and receiving help and set down guidelines for visitors i.e. that they feel healthy when visiting and how long for them to stay, hand wash/wipes, mask, take a Covid test etc.
We are talking hypotheticals here, just be guided by your medical team.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Please do keep posting as we are here for you.
Really be kind to yourself and look after yourself
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Thank you for your message
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Hi @Deborah1, I had a stem cell transplant in October 21. The pre conditioning treatment isn’t great but no worse than any other chemo treatment that you may have had. The actual transplant took 24 minutes and was just like getting a blood transfusion. After the transplant, I found it very difficult to eat as had no appetite at all. I had kidney failure and sepsis so ended up in ITU for 5 days. About a week later I was home after 4 weeks and 4 days. I couldn’t have visitors due to Covid restrictions but being honest I was up for it most of the time due to tiredness. The tiredness lasted a good couple of months afterwards. At the 100 day post transplant mark, I stated to feel better and have pretty much lived a normal life since. I started cycling again around April 22 and completed a 193 mile bike ride in one day during April 23 just 18 months post transplant.
Everyone reacts differently to the transplant and recovery but stay positive and hopefully you can hike and garden within a reasonable time post transplant.
All the best for your transplant and recovery x
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To be honest it’s a bit of an anticlimactic thing.I had a Stem Cell Transplant at the end of 2024 due the advanced stage of T Cell Lymphoma.They put the Stem Cells in from an infusion bag and it takes about 40 minutes.It is the lead up to the transplant which takes up the time as you have to have,or I did,a lot of radiation and chemotherapy.I was in the hospital about 4 weeks.
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Thanks Kevin
How long until you started feeling like yourself again. I think it’s the afterwards I’m dreading
Deborah
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Hello @Deborah1,
Thank you for your post.
We are sorry to hear that you are feeling worried about your stem cell transplant, although it is completely understandable to feel this way.
We would advise sharing how you are feeling with your team, especially with your clinical nurse specialist so that they can help support you as best they can.
In case it is helpful we have a stem cell transplant booklet that is available to download or order for free Blood stem cell and bone marrow transplants booklet | Blood Cancer UK Shop it discusses different steps you may come across in the stem cell transplant journey, information about autologous and allogenic transplants as well as what to expect during recovery.
It may be helpful to come up with a list of questions for your team so that they can provide you with more information and help to support you with what you can expect following the transplant. Recovery differs from person to person, depending on their disease, fitness levels, type of conditioning/ chemotherapy treatment and type of stem cell transplant they are having, but it’s important to listen to your body and be kind to yourself. From having regular check-ins with your team, they will be able to advise you further on when you may be able to resume your hobbies.
If you would like to talk any of this through with a member of our team, please get in touch on 0808 2080 888.
Take care & best wishes,
Emma (support services nurse)
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I never didn’t feel like myself.I think that a lot depends on your overall health as to how you respond.A lot of the people were older than me and had other health problems too like Diabetes, previous Strokes,Heart problems and the like and they perhaps didn’t respond as well due to such factors .I suppose that how far the cancer type had advanced would be a factor too.Mine is at stage 2B which strangely is the beginning of the aggressive malignancy with Mycosis Fungoides which is the subtype of T Cell Lymphoma I have as generally stage 1 and 2 are the indolent cancer stages and 3 and 4 aggressive but with MF it’s split in stage 2 with 2A being indolent and 2B aggressive.Obviously better 2B than 4B!
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I’ve got Myelodysplastic syndrome (MDS) Myeloproliferative neoplasms (MPN) JAK2 and TP53. So that means leukaemia is imminent but not here yet thank goodness. I’m 64 which is probably older than you.
I’ve just read stuff about people being ill for up to a year. And things about not being able to hike or garden etc. That’s what I am worrying about I think- the long term effects. Sounds like you just got back to normal, which is what I’m hoping for
Deborah
A lot of M’s with blood cancer!My own is confusing as Mycosis Fungoides is abreviated MF but there’s another Myelofibrosis which is also MF although really that should be Mf since it is one word but Myelofibrosis seems to be far more common than Mycosis Fungoides.During the actual transplant and part of the lead up to it you are pretty much restricted to your room but before that when I was having radiation to destroy the Lymphoma in my skin I use to walk around the hospital and even the park opposite for exercise.I don’t think that it has had any long term effects on my general ability to get around but obviously everyone is different.Hopefully you’ll be ok.I didn’t have much choice about having it as they said that I was not likely to live more than 5 years if I kept the Mycosis Fungoides running at the level it was advancing at.
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