I would deeply appreciate feedback on patients diagnosed with CMML

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.

Thank you for your feedback..
Yes,indeed it is a disease without a cure, but encouraging to know that you have managed it well.
Just to know ..we're you able to travel long distance on airplanes?
Good luck

Yes, but people with CMML are immunocompromised so must mask and be very careful in crowds. I mask in elevators and doctors offices and in any crowded places. Also try to do things at less crowded times, like shopping. On planes and in hotels I use antiseptic wipes on any surface I might touch. Things like that to be safe.

An addition to my message about traveling—use good KN95 masks. The little ones they hand out various places aren’t sufficient and won’t protect you. It’s not comfortable but it’s safe.

Hello,
It is my sister's. Her HGB count is 9.60...

I have Cmml hemoglobin went down to 3.3 was put in hospital 12 days

I am doing well now after going to Houston at md Anderson