I would deeply appreciate feedback on patients diagnosed with CMML

Yes,my sister maybe given intravenous chemo . She is also considering to travel to another state.
Thanks again.Wishing you all the best with your treatment.
Ismat

What mutations did you have?

Hi @imoser325, I’m so happy to see that your health is improving changing your care to MD Anderson. What treatment are you undergoing for your CMML?

Hi Ismat, There are so many abbreviations for diseases, it’s a challenge to keep them all straight! CML or CMML, you’re a wonderful advocate for your sister’s health. It’s always so heartwarming to see this wonderful forum in action with how members rush to the rescue when you’re looking for shared experiences. So thank you to @ sme225 @lmoser325 @rogelling for talking about their CMML journeys.

I know the term chemo can spark a great deal of fear. But chemo can help kill the leukemia cells in the bone marrow and allow normal ones to grow back. If your sister’s cancer isn’t responding as quickly with the hydroxyurea (HU) as her doctors would like, it can be helpful to have an additional chemo to boost the effect.

I’m glad she’s doing well otherwise. The itching is annoying for sure. I remember that with my own leukemia odyssey…drove me nuts! But that actually got better once I started my chemo. I hope your sister does well with the new treatments. Please keep me posted. Hugs.

Welcome, @rogelling. Thanks for popping into the conversation about your experience with CMML. You mentioned that you were diagnosed in May of this year. Was this discovered through the tests you had to follow-up on your low platelets and anemia? Are you currently on any treatment plan or are you in an active surveillance period?

Dear Lori,
Thanks for your encouraging response. It really makes a big difference to me ....I am also thankful to all those who reached out to me with their supportive messages.
I hope you are doing fine with your own health issues..You are a brave heart..
Best regards
Ismat

My cardiologist finally decided after 2 years of 80,000 to 120,000 platelets and Hgb of 12.5 that I should see HemOc. She ran aNGS and hit TET2. She also noted the monocyte count was over 1.0x3 for over a year. She ordered the bmb which showed CMML without blasts. She tells me is stage 0, no treatment needed. I'm in the CHIP clinic.
As far as symptoms, the fatigue and dizziness have gotten worse. I have two prosthetic heart valve so the fatigue has been there for years. I used to do fitness and cardio 3 times a week for 30 years, I had to cut to 2 a week and feel very tired those days.

Hope that helps. I'm here anytime.

Thanks for sharing your experience. I hope you no longer feel dizzy and fatigue.
Wishing you good luck!

It seems you are coping well with CMML. Could you please share a little more about your experience ? Did you have to go through both oral and intervenous chemotherapy? What symptoms and sude effects did you have?
Good luck.

I have only taken hydroxyurea and Jakafi. I was in a clinical study for a while for a drug in addition to Jakafi that made my spleen much smaller. An enlarged spleen is one of the CMML symptoms which makes it hard to eat very much food at a time because you feel full. I also had itching that Jakafi helps a lot. My feet feel sort of numb which is also something people with CMML feel. My white cell count dropped from 70k to 30k with Jakafi, although my white cells, hemoglobin and platelets are low, but not concerning to my hematologist. The numbers go up and down but seem okay. The worst symptom I have had has been a couple of times when my spleen had infarctions (like small strokes) which caused terrible pain and nausea and vomiting for a week. But that has only happened twice in ten years. I feel tired but that might be low hemoglobin or the fact that I also have stage 3b kidney disease. I go to my regular appointments and have blood drawn every three or four months and do what the hematologist recommends. There has been no mention of IV therapy, so unless something has changed drastically for your sister a second opinion might be a good idea. It’s a disease that has no cure, but it can be managed. I had a full time job with it for several years before I retired. Glad to answer any other questions.