Hgb and transfusions

[Realtorlin]

I have been on Jakafi since the end of September. I am now needing blood transfusions every 3 weeks, is there anything I can do to keep my hgb up for a longer length of time?

[Mirribell]

I have found that Neorecorman weekly injections have been helpful for this problem.

[Realtorlin in reply to Mirribell]

I will ask my doctor about this. Thank you.

[Jane65]

Hi, exactly the same. I have weekly injections to try yo extend the life of the cells. Mine is called Retacrit. I am treated in France. The new drug called pacritinib is supposed to work like Jakafi but not do the same thing to cell counts. It's still at trial stage.

[Realtorlin in reply to Jane65]

I will ask my doctor about your drug also. I have read about Pacritinib bit it is in trial here also. I wish I could get in a trial. I already have a b12 of over 2000 before starting any if this medication and no one knows why. Thank you for responding back to me.

[beetle]

I used neorecorman for a while but it greatly increased spleen pain so I have stopped using it. My question, Realtorlin is this. Have they raised any questions about your iron levels with such frequent transfusions? I have two units every 4-6 weeks and I am concerned about iron levels.

[Realtorlin in reply to beetle]

Yes there has been talk about high iron levels and I keep telling them my b12 is over 2000. They take blood out when the iron levels get high I believe. All of it worries me. Thanks so much for responding back to me.

[catbowler1950]

I have been on jakafi 20mg twice a day since 2008. I was in the trial from 2008 until Jan 2012 when the drug was approved. I never had a transfusion until March 2012 every 4 months. I progresses to every 3 mos,then 2 mos now every 4 wks.

I was getting shots of 250mg,later500 mg of Arenesp which prolonged transfusions a few wks . I did this for 11/2 or 2 yrs when my oncologist said this isn't working any longer . My iron level was 1600 was put on Exjade 1250mg to lower my iron which has dropped to 800 now. I ask if I could quit taking exjade now ,Dr said no as I get transfused every 4wks. Now my platelets have dropped too low dr reduced my jakafi in half 10mg twice a day.

I worry my spleen will swell ,cause me pain as it did yrs ago when the Hydroxyurea quit working after 2 yrs. that is when I got into the trial for jakafi at MDA in Tx

[catbowler1950]

I had shot every 3 wks of Arenesp which prolonged my transfusions 2-3 wks longer between transfusions. After a couple yrs that didn't help any longer .

Now nothing just get blood every 4wks.

[Realtorlin in reply to catbowler1950]

Do you get iron overload?

[catbowler1950 in reply to Realtorlin]

Yes from getting transfusions for 4yrs. I was hoping when the iron levels lowered I could stop meds for awhile,but dr said no.

I watched a video of one the MPN.conferences they have several specialist from different cancer centers speaking. Andrew Shorr

Conducts these meetings at different states,overseas,they are 3taped so you can watch them a few days later if you can't attend.

I don't remember the research DR name,a person ask about iron

Overload he said I rarely give meds for it.not until it is over 3,000

I ask my dr shE said I don't agree with that.if you get above 2,000

You will have major organ failure.

I wish I lived close to one of the large cancer centers that do lots of research. I have to travel alone go long distance ,expensive ,very stressful. My husband is disabled don't like to leave him for wks at a time. Thinking of enrolling in a trial if I can go back and forth every 2-3 mos after a wk there to start. I did that for the jakafi trial .i had to get labs every wk fax to dr in tx.

I feel fine no problem with iron meds,jakafi had no other health issues ever. Only my platelets ,low ,transfusions don't bother me

As long as I can keep getting them. Platelets worries me as dr reduced my jakafi dosage .my spleen enlarges I am in severe pain. I never had fatigue have lots of energy

Good luck wishing you well.

What state do you live? I'm in SC