momolinateb

[lynda1ann]

Hello, just wondering if any of you are taking momolinateb, and if so how you getting on with this xx

[Goose2023]

have been following clinical trials in US where it has just been accepted.....unfortunately not approved in Australia....usually taken with Jakovi...or alone....its big plus is it has no affect on blood Hb which would really help me as I am transfusion dependant

[lynda1ann in reply to Goose2023]

Thank you for your reply, let’s hope it will be approved in your country Take care

[lynda1ann in reply to lynda1ann]

Hello, thank you so much for your reply, I’m sorry to read about all the ups and downs you are having. I’m thinking of your husband and wishing him well🙏🏻. I think I will be staying on Rux at the minute. Take care both of you , x

[Bainbridge]

Hi my husband 74yrs old high risk JAK2 MF and also two other mutations one which can progress to leukemia was on HU for three years then in March this year progressed to high risk MF so they switched him to jakifi which helped with the symptoms of spleen but then made him very anemic where his hemoglobin went down to 6.5 so was dependent on blood transfusions monthly .As of Nov 1 he switched to the new drug Ojjaarra which has caused some stomach pains, stomach issues, still tired. Overall some days good and some days not. Some of this can be the disease itself and also the drug. So we go for blood every two weeks. the last time at the doctor office his numbers for hematocrit was 29 and hemoglobin 8.9 which is good since on jackifi it has also been lower. Not sure if I answered your question but that has been my husbands experience who has started the new drug Nov 1 so I guess time will tell as he continues the drug at 200 mg daily,

[Bainbridge in reply to Bainbridge]

Hi again just wanted to give you an update since we went to the doctor again today since my husband was very lightheaded and dizzy. Blood tests show his platelets went way down to 102 and spleen she can feel was a little larger. His hemoglobin was 9.1 and hematocrit 28 so it has been steady since the new drug but he still felt lousy, no appetite , losing weight. To net it out the Dr said let’s go back to jakifi and put him in a clinical trial to deal with the anemia . Overall it seems that this new drug had too many side effects for the doctor to switch him back. She is an MPN doctor but I am wondering if we should do a second opinion at another MPN center. I know each person is different . Wonder if anyone else has started it