What to expect

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Hello,

I think I’m just looking for some guidance on what to expect in the months ahead and ways to navigate what feels like the unknown!

My dad was diagnosed with Myelodysplasia in September and I’m struggling to completely understand how things are developing as he isn’t the best at taking in information or asking questions and I can’t be at every appointment, even if I am , I don’t feel like I should ask all the questions going through my mind.

He has had a low level round of chemo to prepare him for a bone marrow transplant although it has not worked so he now needs a stronger round of chemo. My understanding is we’re now talking about Leukimia although We were told at first he didn’t have leukimia YET and it was good they had discovered it.

I know every case is different so without knowing the facts no one can answer , but perhaps there are some people here with similar scenarios?

My dad currently looks and feels well so this whole idea of strong chemo making him I’ll to get him better is more difficult to take. I’m terrified inside for what is next and trying to stay strong to support him and our family through the months ahead. All seems more difficult not actually knowing what to expect. Covid and infection control are also a constant worry.

Thanks

Thehighlander over 4 years ago

Sorry to hear about your dad. I don’t have AML but another type of blood cancer but do understand the challenges going through these treatments.

Is Bone Marrow Transplant/Stem Cell Transplant (one and the same thing) still on the cards if the stronger chemo does it’s job?

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

Learning21 over 4 years ago in reply to Thehighlander

Hi, thank you for responding and likewise, I’m sorry to here of your diagnosis.

Yes, that’s my understanding. The first round was the lowest level and he tolerated it really well but it didn’t do what it needed to, hence the stronger round. I really don’t know what to expect other than a horrific few weeks for him until his count comes back up ? If it blasts all these cells ( I think that’s the aim) then he is good to go for the transplant .

I don’t have the exact type but I’ll get that a post it to see if it’s similar to others.

it’s so hard in these times we can’t even hug him , keep the kids away etc.

thanks again

Thehighlander over 4 years ago in reply to Learning21

Hi again, this is make some sense now.

For him to be in a position to go into Stem Cell Transplant (SCT) some hard hitting treatment needs to be done to get him into a position for one of two things to happen.

They could get him into remission and harvest his clean stem cells, give him some more strong chemo and reintroduce his harvested stem cells and his new immune system will grow.

Get him into the position that he can have a donor SCT. I had two donor SCTs, the first in June 2014 then Oct 2015..... it’s a long story so hit my community name and see my profile.

We do have a dedicated Stem cell transplant group where people who go through SCT or family supporting them hang out and share experiences.

So it would be worth going over and putting up a post or look through the discussions.

Over the years we have had a number of people with AML come through the SCT Group with most making great progress.

Always happy to answer questions.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

Learning21 over 4 years ago in reply to Thehighlander

Hi Mike,

Wow, reading through your journey post has me in tears, but in a good way, I think, because it’s an awesome , real story of triumph! What an inspiration you are , that’s some journey you and your family have been on! It has me thinking I should stop feeling sad and get the sleeves rolled up !

My dad was supposed to have a back operation and being prepared for that they found the abnormal cells and decided a SCT was his best option. Reading through your first SCT prep I recognise some of the language, our first consultation for that was brutal as they explained everything that could and would likely happen.

we have a 10/10 match too, just need this round of chemo to do it’s job. I hope it isn’t too rough for him. We’re told if he’s ok we can manage it from home to avoid a hospital stay. It’s only 3 rounds but I don’t know what to expect from it.

I’ll post on the SCT area as you suggest and thank you again for taking the time to respond , it’s really helped !

with very best wishes