A family member has recently been diagnosed with Chronic myelomonocytic leukaemia (CMML) monosomy 7. Anyone on this forum with the same diagnosis ? Would be interested to hear from anyone in the same boat.
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Hi @SueKnysna I am so glad that you have found us so quickly after your family member has been diagnosed, currently The Blood Cancer UK are updating their information on Chronic myelomonocytic leukaemia (CMML).
I hope someone with the same diagnosis will be able to help you.
Also the Blood Cancer UK support line is there for you on 0808 2080 888.
I expect it must be so difficult for you as a family member caring for a loved one but also so powerless to make them better.
What I would say is I have found it is not so much about the exact diagnosis it is more about the fears, shock, thoughts, feelings, emotions and practicalities we often share.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses for you.
At the moment perhaps it is about you all looking after yourselves, perhaps you are dealing with the shock in different ways, there is no right or wrong.
Perhaps you might write down the fears and questions you would like answers to at the next appointment
Take lots of care and please do keep posting as I look forward to hearing more about you all.
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Hello i was diagnosed with Chronic myelomonocytic leukaemia (CMML) 18 months ago i was 58 at the time it is a shock when your told i ended up having a stem cell transplant 8 months ago which has gone well im know in remission if yo need to know anything please ask take care Andrew
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Great to hear from you again @Andrew2 with your update and offer to share your experiences It is what our forum is all about
Look after yourself and do keep posting
Thanks everyone for being such a great support forum
Sue
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Hi @SueKnysna,
I hope you are doing okay today? Along with support from others in the forum I wanted to let you know about our helpline. Please do feel free to call us yourself should you wish to talk things through and of course pass on our details to your family member- Blood cancer information and support by phone and email | Blood Cancer UK
Additionally i have linked here to some webpages which may be useful for you & your family-
I do hope this is helpful. Take good care, Lauran
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Hi Sue
I was diagnosed with Chronic myelomonocytic leukaemia (CMML) last May after 18 months of roller coaster blood tests. Including a misdiagnosis of skin cancer. Seems dermatology didn’t recognise the specks and patches of blood as a leukemia symptom. Luckily I asked for a biopsy and that proved skin cancer wasn’t the problem. I am 73 and deemed to old for a stem cell transplant as it can prove to tough for the elderly. Chronic myelomonocytic leukaemia (CMML) is apparently very rare. I have researched every paper I can for information. Last year it was estimated 3 in a million developed it annually in the UK. I recently read a paper that said that figure is 10 in a million at present (300 percent increase) that is frightening. As for myself I am well and on watch and wait. In fact last Christmas I had my best blood test result for over 18 months. At diagnosis last may I had 14 abnormalities in my blood this had fallen to 4 abnormalities by December. Recieving no treatment as symptoms are not apparent yet. I managed to access my records on NHS app and some information about blood test results was informative. I don’t ask many questions at my haematologist appointment . In fact I haven’t seen him since the beginning of October. Just had one telephone appointment. I totally changed my diet after diagnosis in the hope of slowing this disease down. As I say since then my blood tests have gradually improved may be just a coincidence but at least it makes me a little more optimistic. I find my haematology chaotic and prone to mistakes, for instance didn’t take enough material to complete bone marrow biopsy. Blood cancer UK have been excellent and Erica especially is always there with good advice. Wishing you the very best and please keep posting.
Yours unclejack.
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That’s fantastic feedback, thank you so much. I hope you continue to be symptomless and the change in diet etc works wonders. Take care, Sue
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@Erica
Hi Erica, I received a e.mail from blood cancer UK detailing there February itinerary including their latest Chronic myelomonocytic leukaemia (CMML) info. Unfortunately I couldn’t access the Chronic myelomonocytic leukaemia (CMML) info. Google info suggest the web site was not safe. Sounds like a glitch have you experienced this. I really need to access that section as Chronic myelomonocytic leukaemia (CMML) is quite rare.
Best wishes
Unclejack.
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Oh @Unclejack I am sorry to hear about your problems with the Chronic myelomonocytic leukaemia (CMML) information.
I am absolutely useless with anything technical
I will copy your post to ahowse@bloodcancer.org.uk to see if she can help.
Please do give her time to get back to you as we have the weekend coming up
Take lots of care.