Options other than transplant?

[Gemini1967]

Hi, I'm new to the forum and was wondering if anybody has chosen not to go for stem cell transplant after getting good bone marrow results after the consolidation phase of chemo? I'm also struggling to find other people who have been diagnosed with A.L.L. in their 50s like me as it seems to usually bea young person's disease? I'm very scared about the prospect of a stem cell transplant.

[Jm954]

Hi Gemini1967,

I completely understand how scary this must be for you and you will have already been through a long and intensive chemotherapy regime. However, your medical team would not have proposed transplant if they did not feel it was in your best long term interest and that you are fit enough to go through it.

Of course you are entirely entitled to refuse a transplant but it may not be possible to have one later if you change your mind.

I would suggest that you discuss your worries with the medical team looking after you and ask why they feel it would be best.

Are they suggesting a transplant using your own stem cells or donor cells? Did you have Ph+ ALL or complex genetics? Both of these questions will influence your treatment options and possible outcomes.

Sorry, not much help but perhaps given you something to think about or discuss with your doctors.

Jackie

[Gemini1967 in reply to Jm954]

Thanks Jackie- I think my fears are more to do with the vulnerability of having no immunity for a long period as my first experience of being neutropenic resulted in a very aggressive ear infection which has resulted in total , irreversible hearing loss in one ear-my body's ability to cope with intensive chemo has actually been really good.

[Jm954 in reply to Gemini1967]

The only good thing about your ear infection is that your team will be even more vigilant about possible future infections with you.

Please talk to your team, best wishes

Jackie

[Cyprusfan in reply to Gemini1967]

Hi

My son who is 25 had his transplant on 14th February and was in for 4 weeks. He did have a few issues with ulcers for about a week after transplant whilst immune system was grafting but the medical teams deal with it really quickly.

He came out on the 7th March..bloods are all in the way up now and neutrophils 2.6 .

Be led by your consultant.

Our daughter was the donor

Hayley

[Gemini1967 in reply to Cyprusfan]

Thankyou Hayley, glad it all went so smoothly for your son and best wishesforhisrecovery.x

[2003UK Champion]

Hi, a great big welcome to you, I cannot help with your diagnosis or treatment but I think it must be really natural to feel very scared nad your emotions all over the place. It is certainly not a decision you have ever had to make before. We are here to support you and if you need to speak to someone the Leukaemia Care Charity helpline is open Monday - Friday 9am until 5pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. In hindsight I feel writing down all my questions, fears, thoughts, feelings, practicalities for my medical team appointments would have helped me as my mind can go blank at medical appointments. Take lots of care of yourself and with this site you do not have to be scared on your own. Spoil yourself.

[Anisah123]

Aww has ur consultant said you need the transplant

[Gemini1967 in reply to Anisah123]

No, I'm about to have a bone marrow biopsy from which they will determine whether its recommended that I have a bmt, or I will go on to consolidation and then maintainence chemo. My last marrow biopsy came back as an" indeterminate result" , which I'm told is either insufficient sample to complete all tests or insufficient DNA.Either way, there has not been an unfavourable result yet showing high risk levels of MRD.

[Anisah123 in reply to Gemini1967]

I would take the advice of your consultant I know this cancer journey well and it is hard and painful and scary and boy them biopsies hurt don’t they but hang in there and discuss all your options with your specialist nurse as well if you need to talk I’m here x