blood transfusions

[Bainbridge]

My husband has high risk MF and takes RUX/jackifi which he started last March since his disease has progressed and HU did not work for him any longer. He has had to rely on monthly blood transfusions since last June which normally last him around a month before he needs another transfusion since his hemoglobin and hematocrit get low 7.9 and 25. What was odd was he had a blood transfusion on Dec 30 then labs again on Jan 2 and the numbers improved but then did labs again today Jan 4 and they are getting low again to the numbers at the end of December. He started a clinical trial on Jan 3 disc 0974 which is suppose to help with the anemia. The MPN care team says the numbers have nothing to do with the clinical trial and he may need another unit of blood. Overall I just find it strange after this clinical trial drug injection that his numbers dipped as if he never had a transfusion. My question - Are others out there who have had a transfusion and needed another one within a week? Due to the disease ? I know everyone is different but it’s just strange to me that it’s been monthly now all of a sudden it’s not ? And it happened after the injection of the trial DISC 0974. For those who are MF and have anemia there is a trial going on now in the USA and still recruiting. My husband did try the new drug Ojjarra but had too many side effects that the doctor put him on it for 22 days and switched him back to Jakifi - link to the clinical trial

clinicaltrials.gov/study/NC...

[beatlelover]

Jakafi causes anemia. I have MF and I am currently on aranesp injections which up my hemoglobin. Not all patients can luck with aranesp, I lucked out for once. But it is a terrible disease. My prayers are with you

[Bainbridge in reply to beatlelover]

Hi thanks for this info and reading about the drug it sounds similar to the clinical trial drug he is on. How often do you get that injection and dues it take like 2-4 weeks to take effect ? And yes unfortunately Jakifi I understand does cause anemia since he is on 10mg twice a day. He did try Ojjarra but that was not good for him . Thanks for your prayers since some days it’s good and others bad.

[beatlelover in reply to Bainbridge]

I get the injections every 3 weeks. I am also on pegasys to help with progression. It took affect with me in 3 weeks. I am praying for all people on this dreadful disease. You have to research, research, research. Knowledge is you best answer. Good luck

[Bainbridge]

thanks for your help good to know blessings to you

[Dodders]

Hi, during the period I transitioned from PV to MF, and then during the period up to my STC I had two internal bleeds. I rather doubt this is the issue in your husband's case, but I mention this as the first bleed I had was not initially diagnosed by my haematologist. If your husband's numbers noticably dipped by a significant amount, and around the same time he passed black tarry stools then that is likely to be the reason. Wishing you all the best.

[Bainbridge]

thanks for this info, we have more labs this week so we will see how the numbers are. his MPN care team wanted to give him another unit of blood this weekend but he feels ok not that bad so he wants to do labs to see if it’s still low or like you said something internally. So he did not do the additional unit of blood this weekend.

Glad to hear that your SCT is doing well for you. My husband did speak to a specialist about this last May but the match is 50% it’s not a 10/10 and it’s his brother who is only a few years younger than my husband at 74 years old. It’s a tough decision for sure.