Sct off the agenda!

Caring for & supporting a loved one
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I’ve been quiet for a few weeks but I’m getting more agitated right now.

My OH was reminded a few weeks ago by the haematologist that he needs to get his head round having a stem cell transplant. He seems to be running on the idea that he can run on Azacitidine injections permanently! The chemotherapy has now started to make his bone marrow produce his own platelets and he’s been getting much higher counts 61 last week which considering he was receiving the platelet transfusions weekly as they were averaging between 6 and 12 is remarkable. I don’t know what to infer from this, but he seems to think that it means some kind of improvement but I get that Chronic myelomonocytic leukaemia (CMML) can’t improve and can only be suppressed by chemotherapy. The doctor said that his blood counts were good and that his blast count is probably still low.

What hasn’t helped him is that he met someone who has had Chronic myelomonocytic leukaemia (CMML) for 3 years and has been on chemotherapy for all of this time, I’ve tried to explain that this could be because they were not suitable for a Stem cell transplant because of other health problems and that the Azacitidine may not work well for him long term, but the head honcho at the big hospital didn’t sell Stem cell transplant well and that he oversold the negatives of this treatment. I think my OH needs to know more about this treatment before ruling it out. I’ve been trying to find real life videos of people having this or who have had this experience on YouTube but whether he’ll decide to watch them remains to be seen. I think if he does he might be more open minded as going into it without any knowledge is just too frightening after only being sold the negatives.

Any video links would be helpful.

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Hi @Hellodolly personally I believe that medical people have to tell people all possible downsides to treatments, a bit like the instructions on medications in this day and age, so that people have the whole picture and there is no come back at a later date.
I personally have had similar appointments with 2 other conditions I have.
I am not currently aware of any videos, but will copy this to the Blood Cancer UK support services @BloodCancerUK-SupportTeam for you.
Perhaps again with this new information it is the time to write down both of your further questions for your OH’s specialist nurse or medical team.
I do not envy your situation as it is very difficult when 2 people feel differently and you are powerless over the decisions the other person is making.
Sometimes there is no right or wrong, just differing opinions.
Be very kind to yourselves

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Hi @Hellodolly

What a difficult situation and I’m not surprised you’re feeling more agitated. I share @Erica’s thoughts that they do have to share the downsides to have the whole picture but it does make it hard to make the decision and is understandably quite scary for your OH. It is undoubtably a difficult decision to make and getting as much information as possible is definitely a helpful approach.

Everyone’s circumstance is unique so it’s best to avoid comparing treatment options with someone else if possible. That said, it could be a good starting point for opening a conversation with the consultant as they may be able to explain why your partner needs to consider a Stem cell transplant where this other person may not. It sounds like you both need another open conversation with your hospital team about the treatment, what to expect and to go over the positives and risks.

I hope the following links may also help:

Our free booklet on Stem cell transplant:

Blood stem cell and bone marrow transplants booklet | Blood Cancer UK Shop

Stories of others who’ve been through Stem cell transplant treatment

My journey through AML and a stem cell transplant | Blood Cancer UK

I’m so grateful for my precious donor cells | Blood Cancer UK

Our colleagues at Anthony Nolan also have lots of content, which may be helpful - videos, podcasts etc:

Real stories | Anthony Nolan

Forum

We also have several threads on our forum from others who’ve been through Stem cell transplant, which may be helpful to read through.

Latest stem-cell-transplant topics - Blood Cancer UK Online Community Forum

Hopefully others here may also share anything that helped them make the decision and also any other useful resources they may know of.

Our experienced haematology nurses are also there as always if talking it through on the phone would help → Blood cancer information and support by phone and email | Blood Cancer UK

Hope this helps as a start.

Bests,
Ali

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