Any help out there? I have CMML Leukaemia.

[yvonden]

I just wondered if anyone can help me, it is a very rare type and I am finding it so difficult to find anyone who knows if there is any treatment for it, I know the only cure would be a stem cell transplant....as it is with all Leukaemia. But I'm frighened and alone as I cannot find any info as such on CMML, do I have a future? Is there anyone in the UK who can help? Thankyou Denise.

[DrunkJam_UK Administrator]

Hi Denise. Sorry that you are here, but welcome to the group.

Sadly, I do not personally know anything specifically about CMML (I am on the bone marrow donor register)

I am certain someone here WILL know something though, and everyone here is lovely. So, if there are areas of commonality we're here for hugs and to chat.

Also., you can definitely ring the Leukaemia care nurse for a chat, and they are really good at knowing actual proper things!

Do keep asking and talking though,

Oh, I'm Laura, and my husband has CLL (which is common) he has had a load of complications and such, but is currently doing OK.

[RossH]

Sorry, I can’t give medical advice, but I would really suggest that you stick with whatever your medical team come up with. I know this is difficult nowadays, but I would always try to stay away from the internet and Google as much as possible. There are so many cranks out there that offer ‘miracle’ cures that mostly are nothing short of lies. This really angers me as it give people false hope at times. So, go back to your docs, have all your questions prepared and written down. They may not have answers straight away, but they will answer if they can. Take care x

[2003UK Champion]

Hi Denise, I am so glad that you have found us and I can hear the fear and anxiety in your post and it brings straight back the memories of when I was diagnosed with CLL 18 yrs ago. I can replay the day as if it were yesterday and I came straight home and wrote my will and funeral music. I am still here and life is good.You say that you feel frightened and alone, do you have any support at all?

I thought I was the only person in the world in my situation, little did I know.

You now have the support of your Leukaemia Care family around you, if you would like to talk to someone the Leukaemia Care support line are there for you and I do not know if you have looked at the Leukaemia Care website but there is information and support on there for you too.

I am presuming that you will be seeing someone medical soon to discuss your diagnosis.

Now is your opportunity to write down all your fears, medical questions, practicalities etc.

I found the forever waiting on others is the worst.

What I would say is to really look after yourself and be kind to yourself you have just has an enormous shock and that takes time to get over.

[Tenby22UK]

Hi cant give you much info because as you know it is a rare condition but as you can see from previous replies there is help out there. I was diagnosed with cmml in December and at the moment I am on what they call watch and wait so I see my hematologist every 3 months for a blood test so I assume this is what you are doing if not you should be. There isnt at the moment any cure but there are treatments to control the condition so please try not to worry and there is no guarantee your cmml will progress to the next stage and a positive mind and attitude is a great help to get on with your life. I wish you luck in the future and if you feel like getting in touch if you think that will help dont hesitate. Ian

[MeNotDavid in reply to Tenby22UK]

My husband's been diagnosed with CML - last August, just when we thought the world would be opening up a little with abating levels of covid and vaccines, only to discover that his vaccinations might not have been very effective. He's on the 'watch and wait' treatment with 3-montly blood tests and consultations by phone. We try to put it all into the background as much as possible, as he has other conditions which are more in the foreground, and take precautions around covid in the knowledge it's NOT over for us. There's always a 'heart-in-the-mouth' feeling before consultations of course, then we hope we've got away with it. We're told this is a slow-burning thing which might stay this way for years, even decades, so thinking time-scales is important. Also that there are treatments to have recourse to, which so far aren't needed. Everyone's circumstances are different, so I don't know how far this will help you, but it comes with warmest good wishes

[Tenby22UK]

Just a post script to my first reply you should have received an email or letter by now from the NHS saying you are eligible for certain treatments if you should get covid and what to do also you are eligible for free covid test kits and how to apply for them

[DougyW]

Hi yvonden sorrybits taken me so long to find this post. I've recently been diagnosed with CMML as well and found the best advice on this site leukaemiacare.org.uk/suppor... hope all is going well for you as CND53915KZ this site helps.