So, I have been diagnosed with Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) in September. In addition to more common symptoms of fatigue, muscle weakness and shortness of breath, I have two other annoying conditions that have been going on for the past two years or so, and am curious if anyone else with Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) has these?
I have a chronic cough, triggered by a spot in my throat, that is daily. In addition, I have sinus congestion all the time. I know these can often be related, but after months of visits to pulmonary, they are no closer to any conslusion. Nor are any of the other specialists I see (Hematology, Hepatology, Thoracic, Cardiology). No one seem to have a clue. So I was wondering if it’s related to the Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML))?
Thanks for posting, and I’m sorry it’s taken a few days to get back to you. Chronic myelomonocytic leukaemia is a lot to process in itself, and coping with a daily cough and ongoing sinus congestion on top of fatigue and breathlessness sounds really challenging - I’m sorry you’re dealing with all of that.
I’m not a clinical specialist myself, but I’m tagging our fab @BloodCancerUK_Nurses who can offer reliable guidance on what’s commonly seen and what might be worth re-raising with your medical team.
In the meantime (and if you haven’t already) you might find this CMML thread helpful. There’s a lot of discussion there, and some posts may resonate with what you’re experiencing. You can also use the forum search function or check the ‘Related topics’ suggestions at the bottom of this thread to find more conversations that could help.
Finally, and I don’t want to overwhelm you with too much information, here are a couple of pages that might have some useful information for you:
If you’d ever prefer to talk things through one-to-one, you’re always welcome to call our Support Line on 0808 2080 888 or email support@bloodcancer.org.uk to talk to our nurses.
Take care,
Ceri - Blood Cancer UK Support Services Team
Sorry read you are experiencing a chronic cough, as well as sinus congestion - I can understand you’d want to know if these were related to your new Chronic myelomonocytic leukaemia (CMML) diagnosis.
In all honesty they are not symptoms I have heard being related to Chronic myelomonocytic leukaemia (CMML) before, however, there maybe someone else out there that has the same.
There is a small group of Chronic myelomonocytic leukaemia (CMML) forum users on here that post regularly, so it might be worth asking this question to them directly. If you’re happy for me to link this thread with another, I can do that for you, which will save you typing it all out again.
My other suggestion would be to ask your GP to refer you to an ENT (Ear Nose and Throat) specialist. Have you have a small camera up your nose and into your throat to take a look? (It’s really not as bad as it sounds). Do you get allergies usually, or asthma? I am wondering if you could discuss this with your GP, as there might be ‘allergy-like’ triggers causing your symptoms.
If it would be helpful to talk things through, as Ceri has suggested, you could call our support line.
Do keep us posted if you do get some answers to your symptoms.
Take care.
Heidi.
I have another rare blood cancer called Mycosis Fungoides T Cell Lymphoma and I developed nasal congestion about the time it was diagnosed but no shortage of breath.I asked the doctors about it at the time and didn’t think that it was related to the T Cell Lymphoma .I have never been to an ENT department about it.