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.
Hi Rick, I think I just saw you discussing your āquality of lifeā on the Zoom call we all had with Dr. Dan Wiseman and Leukaemia Care. I felt the need to make contact as I feel very in tune with your predicament. I was diagnosed with Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML))))))) in August although my consultant thinks I may have had it very slowly doing its thing since 2021. My latest blood tests last week show that there is no need to treat me for the Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML))))))) itself, as my levels are pretty good. However, in the last six months I have gone from being a healthy, dog walking 62 year old to what feels like a severely disabled 92 year old! Itās quite astonishing how quickly the symptoms have come on. From watching the presentation by Dan just now and also hearing @ChrissyDās comments, itās very obvious to me that I am having some sort of autoimmune reaction to Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML))))))) as nearly all of my joints are inflamed, in particular my knees, which basically now means I canāt walk without help. The pain of using stairs or getting up from a sitting position is excrutiating. I also have severe psoriasis on my scalp which Iāve never had before, itchy spots on my skin on arms and legs which blister and turn into red marks which take an age to disappear and severe gastritis which makes it difficult to keep food down as well as the more common Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML))))))) symptoms of anaemia, night sweats, breathlessness and being asleep more than I am awake. Forgive the intrusion but I just wanted to make contact as so far I have not encountered anyone who has Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML))))))) with blood test results which are not too bad but symptoms that have accelerated quickly and are so severe that normal life has become almost impossible. I was particularly interested in your comments about steroids as I am due to have steroid injections in my knees on the 25th of this month, but the consultant at my latest appointment last week at the Myeloid Clinic told me these may not work which left me feeling rather despondent. Iām wondering from Dr. Wisemanās comments today whether I may also benefit from steroid tablets, in view of all the other symptoms I have that may be autoimmune. But getting a doctor to listen to my request for these would not be easy from past experience.
Hi Cathy. Yes, that was me on the broadcast. I appreciate you reaching out. You and I seem to be in a similar situation with our Wait & Watch status, but we seem to have different symptoms. I do not have the inflamed joints, psoriasis, itching, gastritis, night sweats or trouble sleep. I do however have severe shortness of breath, fatigue, and muscle weakness - hence the feeling like an old man comment. In addition, I have, since May, had rapid weight loss and several different infections (sinus, eye, colitis) and bone pain, especially in the hip/pelvis area. I also have the red spots, but fortunately, not the itching. The breathing, weakness, and fatigue are what really affect my quality of life. There are days I really canāt do much, and occasional days where I can get some things done, though always having to sit and rest through it. The one thing Iāve taken away from listening to others, is that all of us with Chronic myelomonocytic leukaemia (CMML) have our own unique presentation, and needs - which makes it difficult to talk with others about Chronic myelomonocytic leukaemia (CMML), because everyone is in their own boat. Thanks for reaching out. Wishing you all the best.
Yes the fatigue is just the worst isnāt it. I spend about 8 hours in every 24 awake if Iām lucky, usually in 3 - 5 hour chunks. So difficult to plan anything and I darenāt try and do anything physical as it just brings on the fatigue more quickly. Itās a good thing my husband loves cooking and house cleaning! But miserable on a lovely sunny day when all I want to do is get out there in the countryside with my dog and I can feel my body begging for another nap. I have lost 20 kgs in a very short space of time and I really donāt want to lose any more. I think that has a big impact on the muscle weakness and very annoying when clothes donāt fit. Anyway, I really hope your good days outweigh the bad for the moment. I was very encouraged by the good work that Dan Wiseman and his team are doing, so at least feel hopeful for the future in that regard. Take care
Good to see you on the Zoom today. Glad youāve found it interesting and hopefully helpful.
Iāve found this AI link about Chronic myelomonocytic leukaemia (CMML) and rheumatoid arthritis, Cathy, so it may be worth exploring that with your consultant, from what Dan said discuss treating it systemically with oral steroids rather than locally by injection ?
I know of another Chronic myelomonocytic leukaemia (CMML) person who has bad psoriasis and Dan also mentioned that a lot of people suffer from itching. It sounds like youāre getting a lot of extra whammies from the Chronic myelomonocytic leukaemia (CMML), Cathy. So sorry and hope that you can get symptomatic treatment to improve your Quality of Life.
Rick and Cathy. Are you anywhere near the threshold for blood transfusions or EPO treatment either of you? The awful and unrelenting fatigue sounds really debilitating and depressing for you both. There are probably similar leaflets available from other charities but this one on managing fatigue might help?
Thinking of you both. Great to put the faces to names!
Hi Chrissy, I donāt think I am near the threshold for any treatment. I saw my consultant last week and nothing was mentioned, just that my bloods were very slightly worse than they were three months ago but nothing to worry about. I forgot to ask for a copy of my blood test results then and there so you have inadvertently reminded me to email the Myeloid Clinic and ask for these. Thank you!
Also Iād be interested to hook up with the fellow Chronic myelomonocytic leukaemia (CMML) psoriasis sufferer as I have tried everything and canāt get rid of it! My once thick hair is now breaking and falling out and my scalp is very sore.
Iām not sure where I stand. I just got diagnosed in September and had my first meeting with the doctors in October. Doing bloodwork once a month and meet again in December. Perhaps might know more then.
Sorry I wonāt be able to put you in touch with the Chronic myelomonocytic leukaemia (CMML) patient with psoriasis for confidentiality reasons but I can say that he was referred to the dermatology dept and was getting treatment for it from them. Iām aware there are lots of different treatments which are used. Maybe you could do likewise?
Sometimes the clinicians monitor for a while -in case of changes - before suggesting a treatment plan ā¦or stick with active monitoring. Iāve always found it useful to keep track of my own blood counts results so I can spot any subtle changes. But not everybody is a spreadsheet nerd as I am!
If you are on the cusp of criteria for getting treatment, it might help for you to tell them exactly how fatigued you are which might sway them to treating you to see what improvement you can derive. As I mentioned at the meeting, the ānumbersā donāt always reflect accurately the impact on the individual.
