Hi folks
I am a Chronic myelomonocytic leukaemia (CMML) sufferer. Have been since early 22.
Before Chronic myelomonocytic leukaemia (CMML) was diagnosed I always had regular colds, including a propensity for a massive red spot which appeared on the end of my nose (don’t laugh) making me look like crusty the clown occasionally. I had experienced the red spot situation since a dreadful acne problem in my teens. Perhaps I am speaking to soon but this problem has disappeared along with cold sores, mouth ulcers etc. If it wasn’t for the very sudden appearance of arthritic pain in shoulders pelvis hands possibly POLYMYALGIA
I am fit and well. My blood count is abnormal but stable and on watch and wait. I do eat a totally different diet and avoid medication were possible except paracetamol occasionally.
I realise many have dreadful symptoms, and I am constantly warned about my vulnerability to various infections and having thrombocytopenia and neutropenia I am constantly looking out for problems. My neighbours seem to be constantly having various colds and like myself are elderly.
Seems odd that myself suffering with Chronic myelomonocytic leukaemia (CMML) are on the face of it healthier than they are. I use public transport all the time and my wife and I go for long walks etc. I have reduced alcohol consumption and never eat junk and buy organic when possible, I have never smoked. Until the arthritic condition hit I worked out with weights.
Sunday morning I had a fight with a rosebush resulting in my forearm being punctured in many places. It bled quite badly for a couple of minutes. I elevated it and used ice. The bleeding stopped immediately. My platelet count is 51 so I was surprised it stopped so quickly. Since diagnosis I have spent my time looking for swollen lymph nodes weight loss, night sweats etc. I am always checking my spleen etc. I do have a obsessive personality and ALWAYS expect the worst. I have read info that gave me a prognosis of survival eight to 30 months. Fantastically counting initial symptoms I have had it for at least 2 and a half years so two survival hurdles have been passed. Spoke to my consultant who said feeling well can be as important as blood test data. I realise sooner or later Chronic myelomonocytic leukaemia (CMML) will probably finish me off but cannot understand why I am healthier than my neighbours at this moment in time, especially as I am a total pessimist. Anybody else having a similar experience?
Best wishes unclejack.
Oh @Unclejack I love the title to your post and your thought process.
This is a very personal reply, as you know I am certainly not a medical person.
Personally perhaps we are all very unique, special people and susceptible to different types of germs, infections, seasonal pollens, foods etc
I will copy your post to the Blood Cancer UK nurses for their observations. @BloodCancerUK_Nurses
As you might remember I was given a life expectancy of 5-10 yrs on the internet, I am here 20 yrs later, from an optimist to a pessimist!!
Look after yourself and enjoy yourself.
@Erica
Hi Erica
Thanks for your reply. As you say we are all different. Perhaps I am just very lucky at the moment.
BEST WISHES UNCLEJACK.
.
@Erica
Hi Erica, Heidi has posted replies to my earlier comment. But I cannot view her comments I don’t know why. I am really interested to read her replies.Any ideas ?
Best wishes unclejack.
Oh @Unclejack I am useless technically.
I cannot see responses from @Heidi_BloodCancerUK either.
But I have copied Heidi in this post and hopefully she will get back to you and sort out our conundrum.
Come back if you have further problems I have a Plan B in my mind
@Erica
Hi Erica once again thanks for your response.
Best wishes unclejack
Hi @Unclejack i can’t see any response from Heidi either
@2DB
Hi, must be a glitch in their system. Thanks for your input.
Best wishes unclejack.
Hello @Unclejack
Sorry, @Heidi_BloodCancerUK is on leave at the moment, may I ask were her comments on this post or another thread? Do let us know and @Ali_BloodCancerUK and I will try and find them for you.
It sounds like you are really looking after yourself and that is so important when managing/living with Chronic myelomonocytic leukaemia (CMML). If you do ever need any support please do get in touch with us: Blood cancer information and support by phone and email | Blood Cancer UK
Best wishes
Gemma
i think I didn’t actually get a reply. But I may be wrong. It could have been under Chronic myelomonocytic leukaemia (CMML) a rare diagnosis.[quote=“Unclejack, post:1, topic:10868, full:true”]
Hi folks
I am a Chronic myelomonocytic leukaemia (CMML) sufferer. Have been since early 22.
Before Chronic myelomonocytic leukaemia (CMML) was diagnosed I always had regular colds, including a propensity for a massive red spot which appeared on the end of my nose (don’t laugh) making me look like crusty the clown occasionally. I had experienced the red spot situation since a dreadful acne problem in my teens. Perhaps I am speaking to soon but this problem has disappeared along with cold sores, mouth ulcers etc. If it wasn’t for the very sudden appearance of arthritic pain in shoulders pelvis hands possibly POLYMYALGIA
I am fit and well. My blood count is abnormal but stable and on watch and wait. I do eat a totally different diet and avoid medication were possible except paracetamol occasionally.
I realise many have dreadful symptoms, and I am constantly warned about my vulnerability to various infections and having thrombocytopenia and neutropenia I am constantly looking out for problems. My neighbours seem to be constantly having various colds and like myself are elderly.
Seems odd that myself suffering with Chronic myelomonocytic leukaemia (CMML) are on the face of it healthier than they are. I use public transport all the time and my wife and I go for long walks etc. I have reduced alcohol consumption and never eat junk and buy organic when possible, I have never smoked. Until the arthritic condition hit I worked out with weights.
Sunday morning I had a fight with a rosebush resulting in my forearm being punctured in many places. It bled quite badly for a couple of minutes. I elevated it and used ice. The bleeding stopped immediately. My platelet count is 51 so I was surprised it stopped so quickly. Since diagnosis I have spent my time looking for swollen lymph nodes weight loss, night sweats etc. I am always checking my spleen etc. I do have a obsessive personality and ALWAYS expect the worst. I have read info that gave me a prognosis of survival eight to 30 months. Fantastically counting initial symptoms I have had it for at least 2 and a half years so two survival hurdles have been passed. Spoke to my consultant who said feeling well can be as important as blood test data. I realise sooner or later Chronic myelomonocytic leukaemia (CMML) will probably finish me off but cannot understand why I am healthier than my neighbours at this moment in time, especially as I am a total pessimist. Anybody else having a similar experience?
Best wishes unclejack.
[/quote]
Oh @Unclejack I hope you celebrated the hurdles you have passed, even through you are a total pessimist.
I have Chronic lymphocytic leukaemia (CLL) but was given a 5-10 yrs prognosis and I am still here 20 yrs on.
Yes, I have some friends that are getting coughs and colds more often than me.
I think, very personally, that we are just such all very individual complex beings.
It is different but I have never known my husband get a mosquito bite, I get them.
Hugo the greyhound loved everyone apart from me and would appear out of nowhere growling and bearing it’s teeth at me from across a rec I walked round and round during Covid early mornings.
This is from a total optimist!!!
@Erica
Hi Erica , I never get bitten by mossies but my wife ALWAYS does! On the other hand I suffer badly with hay fever usually ( although this year never had a attack) I suspect the dreadful summer in my area is responsible for that. First time in my life I have had a hay fever free summer. My wife NEVER has allergies except for the mossie bites. We certainly are all different!!
Best wishes unclejack.