CMML - A rare diagnosis

Hi Jack, yes - I know Marmite!!! :smiley: maybe from my time in England. That is great! You are doing everything possible that is good for your health and I am sure that it has a big impact on everything, also a slow progression. You are on a very good way! There are many things that are great for your immune system, so do whatever you can :slight_smile: My dad’s haematologist said the same, it is most important how you feel. And his platelets were only 7 at a certain point but he felt good and went for walks :flushed: there were times when his blood tests were much better but he felt worse.
We apparently also share the same opinion about the platelet transfusion, keeping my fingers crossed for you that the tooth can be removed without!! I am confident you can.

Yes, with such a rare disease like Chronic myelomonocytic leukaemia (CMML) we need every information from every country we can get. If there is anything new I will always share with all of you!
Kind regards,
Silke

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Dear Erika,
So nice of you to ask!! :slight_smile: I really appreciate.

There are ups and downs … the summer was really good. Now it gets more “dark and difficult” again, as exactly one year ago I found out his diagnosis and in November they started Azacitidine treatment. Having lots of flashbacks and nightmares at the moment. But it is part of the process. Also the constant worries about my stepmum (she lived with my dad more than 30 years and is missing him a lot) and my grandma (his mum who is still alive but in bad condition) …
Somehow it helps me to help others :slight_smile: don’t know if that makes sense. But you are right, I also have to look after myself as I still need to heal and process everything that happened in such a short time.

Hope you are keeping well (have read some of your recent posts and it sounds like that :)) !!
You know that you also have to look after yourself :wink:

Best wishes,
Silke

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@Silke
Hi Silke how are you?
Wife’s chemo cream finally arrived and she has been using the preparation cream for one week and the lesion is looking better already. Starts using the actual chemo cream next Friday. As for my dental problem saw the hospital dentist and as soon has he receives my latest blood test results he will fast track the treatment.
So hopefully the broken tooth will be know more.
I have had my knuckles rapped for my recent comments on a subject of mutual interest so won’t be commenting on this forum about my concerns again.

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Hi @Unclejack I am glad that you have actually seen the hospital dentist and lets hope you do get your treatment very fast tracked and you can show off those pearly whites again.
Please do keep us posted and look after yourself

@Erica
Hi Erica
My pearly whites I am afraid are no longer that colour. I am afraid Rose hip syrup when I was very young started the rot.! In my case chocolate carried out the final destruction. I still scoff dark chocolate a couple of squares a day for health reasons!
Best wishes unclejack.

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I remember Rose Hip Syrup @Unclejack and I am a milk chocolate Heroes type of girl.

@Erica
Hi Erica just a update on my tooth extraction.
Dentist has said my platelets at 58 should be okay for the extraction so that’s okay.Stil haven’t got a appointment for the extraction. The dentist said he would fast track the procedure once he speaks to haematology. That was over two weeks ago. Just hope platelets don’t fall in the meantime. Hoping you are ok.
Best wishes unclejack.

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Hi @Unclejack one step forward and waiting again.
Thanks for the update and I hope there will be another update very soon.
Look after yourself.