In August, 2023, I developed a common upper respitory infection and after the infection was over I became extremely out of breath a lot. My road to Chronic myelomonocytic leukaemia (CMML) began in Pulmonology, where scans detected a mass between my lungs and heart. That led me to Thoracic, where an MRI determined the mass was just a cyst, but that my liver was enlarged. Hematology, Hepatology and GI specialists have diagnosed me with non-alcoholic Cirrhosis. Much of my continued shortness of breath, plus fatigue was regularly met with, āWell, itās possibly because of your liver situation.ā This was when they first noticed my low platelets (regularly in low 50ās). Starting this summer, my body began showing more symptoms. Pain in my hips, pelvic area usually at the end of the day, much more fatigue (a few naps suddenly needed each day), muscle weakness, I canāt stand very long - need to sit, increased shortness of breath, daily coughing, weight loss (40 lbs since May without trying to loose weight), and my bloodwork numbers really started to skew. So they ordered a bone marrow biopsy and a PET scan. The bone marrow report diagnosed Chronic myelomonocytic leukaemia (CMML). The PET Scan was pretty ok. (BTW, four days after hearing my leukemia diagnosis, my dermatologist called to say my mole biopsy for positive for Melanoma.) Had my big sit down with my Hematologist/Oncologist doctor last week. Iām labeled Intermediate and we are in the Wait & Watch phase. They have me doing blood work once a month, my first will be next week. Just watching the numbers I guess. Yes, my wife and I have done a ton of research, and itās so frustrating having a rare form of leukemia, for which there is so little reliable information. This site seems helpful, thanks to all who have organized it and keep it going. I have signed up for the November 13th online meeting, hopefully can be there for it. I am working with the Wilmot Cancer Institute, part of the University of Rochester in New York State, and feel I am in good hands as far as that goes. As far as overall symptoms, I tell people, āI feel like I just got really old, really suddenly. Feeling much older than a 64 year old man should feelā.
Hi Rick, and very informative your experience so far. I started with thrombocytopenia in February 22. Platelet levels collapsed to 35 at their lowest and have been 40 to 60 on average. After I changed my diet most of the other blood levels climbed and only the monocytes and platelets are troublesome. I did have neutropenia for a while but neutrophils recovered and are now mid range. I have been very lucky up to now. One thing I cannot understand is my cholesterol level dropped to less than two. Yet I am still being prescribed 40 mg atorvastatin. My monocytes recently doubled to 431. To be honest I feel very well, get a few bruises and last March suffered night sweats. Another bone marrow biopsy revealed that the situation had improved,no progression etc. Doctor actually said the result was remarkable. I am still on what we call watch and wait and donāt take any medication except paracetamol for arthritic knees. Strangely up to now I very rarely catch colds. As far as I know problems with certain viral infections originating in China have left me alone. February next year will mark the fourth anniversary of developing Chronic myelomonocytic leukaemia (CMML). Hope your situation stabilises and improves.
So sorry to hear of your double whammy diagnoses. On the Chronic myelomonocytic leukaemia (CMML) front, I hope you and your wife have found that there are good sources of information around. Iād recommend Leukaemia Careās website for a very recent booklet plus factsheet and also BCUK information on the website.
I was diagnosed aged 58 and that was 17 years ago and I have been on active monitoring all that time with no need for any treatment-for which I am very relieved. I donāt suffer from fatigue -my only concerns are risk of infections and low platelets. Not that there is much effective treatment for Chronic myelomonocytic leukaemia (CMML) sadly - other than blood transfusions for relief of fatigue if needed. Pleased to hear you have registered for the 13th November Leukaemia Careās meeting and a few of us on this Chat Forum are regular attendees so we will see you there.
Meanwhile, I hope you can learn to pace yourself and only use your energy for what you consider essentials. Itās a different way of being Iām afraidš¢.
Thank you for your response. My primary took me off of my cholesterol statin because of the low platelets. My most pressing symptoms now are shortness of breath, fatigue, and weakness. Oh, an annoying cough I canāt get rid of too, which I wonder goes with my nasal congestion. I have an appointment with an allergist next week, to possibly eliminate a cause. Weāll see. Having bloodwork once a month, wait and watch I guess.