How effective is Hydrea in stopping progression to myleofibrosis

[TrailCookies]

I was on Hydrea but suffered extreme fatigue. Now I am on Jakafi and have numerous side effects (stomach pain, diarrhea, fatigue). When I was on Hydrea my blood counts were normal. Which drug will keep my counts stable for the longest period of time?

[hunter5582]

Of the three main treatment options for PV, the current evidence suggests that Besremi is the most likely to be disease modifying, with progression free survival. There is emerging evidence (reduction in JAK VAF) and reason to be hopeful that Jakafi may also have this benefit. Hydroxyurea can be effective for controlling blood cell counts but will not do anything to prevent progression. HU is not disease modifying.

All three medications can be effective in long term stabilization of the blood cell counts; however, we each respond differently to each of these medications. Some find one effective but not another. Some are able to tolerate one but not another. I was refractory to and intolerant of hydroxyurea. I have responded much better to Beremi both in terms of efficacy and side effects. Moreover, my JAK2 VAF has reduced from 38% to 10%. Of equal importance, I feel better now than before I started on Besremi. In fact, I feel better now than I did 10 years ago.

Please note that we all react to these medications differently. My response does not predict yours. We each have to determine what our treatment goals will be as well as what our risk tolerance is. All of these medications come with benefits and potential adverse effects. We each need to determine which option aligns best with our own treatment preferences.

Wishing you all the best.

[TrailCookies in reply to hunter5582]

Thank you for sharing your experience and excellent advice and understanding of the MPN medications. I will have labs in two weeks, so then I’ll see what effect Jakafi has on my blood counts. Also, thanks to you I have more information and questions to discuss with my oncologist.

All the best to you!

[Scottishterrier]

Hi was diagnosed with et jak2+ in 1994 I had high platelets but in 1999 I was after a trip to the states I started what I thought was heartburn and was chewing gaviscon for fun my parents and two work colleagues were saying I was yellow and not eating so I told haematologist consultant who ordered CT scan in November and spoilt my Christmas and new year and as soon festive period was over got on to my doctor who wanted to see me I had a clot on liver got appointment with my consultant and put on hydrea high dose to start yes it makes me feel tired but got my platelets down to near normal and I am down to one on a Monday but I am still under constant supervision from consultant bloods done six weeks before appointment at GP and again at my haematologist appointment Stay safe

Scottish terrier

[TrailCookies in reply to Scottishterrier]

Thanks so much for sharing. Scary to have a blood clot on your liver; thankfully the Hydrea helped you. I wish you continued good health!

[EPguy]

One way to think of it is any drug that you cannot tolerate will be unable to hold counts long term no matter how well it works. As you found, HU did a good job but it can't hold your counts because you don't tolerate it.

I got good counts on all three, HU, IFN and Rux. But I felt not too good on HU and IFN ended with a bang. For all of them, the smallest dose that works is more likely to enable long term use. What dose did you have on HU and have on Rux now?

If your doses have been the lowest required for good control, then IFN is worth discussing with your Dr as a 3rd option. Like IFN, Rux can take a while to get best blood response so you may not find it at the next draw. IFN also is not tolerated well by a signif patient portion so it calls for careful attention while on therapy.

As Hunter says, IFN is well known to reduce the Jak2 mutation for many, and Rux is lately known to do the same. Both can also modify the disease course for many.