Jakavi

[lucieboo]

I started Jakavi treatment some months ago as I was progressing from PV to myelofibrosis. I had immediate relief from itching but it seems to have returned. Enlsrged spleen, haematocrit down, platelets low and white cells not well controlled. What now?

[ainslie]

I would say that’s a discussion to have with your Haem or even better an expert Haem, there are a few import issues there with your situation that needs expert advice.

[lucieboo in reply to ainslie]

Yes, you are right. I will call next week. My haemo is an expert so she will be able to advise.

[Otterfield]

My itching returns periodically but not nearly as badly. I do wonder if it's related to hayfever - histamines etc.

[lucieboo in reply to Otterfield]

It is definitely histamine related. I am back taking half Atarax to sleep at night and Cetirizine from time to time in the day. However, I have never had hay fever. I think it is white blood cells: these are elevated again, it seems Jakavi does not control leucocytes too well in my case.

[JediReject]

Hi lucieboo, , in the dim and distant past I recall I've heard , read or had a discussion about stopping Rux if it becomes ineffective for a period of time in months and then restarting it. Unfortunately I can't remember the source and it may have been discussed on here at some point. Obviously you have to find something suitable to replace it. Also if your Haematologist is receptive it might worth trying twinning Rux with another drug. I would liked to have tried that but was denied the opportunity.

Just a couple of thoughts.

Good Luck , hope you find a way forward.

Chris

[lucieboo in reply to JediReject]

Thanks Chris. It is such a shame, when I started Ruxo I was relieved of itching right away. It controls the RBCs really well, unfortunately drops the platelets too much, but doesn't seem that effective with the leucocytes: I believe the basophils are at the root of the itching. I am just waiting to hear from the haematologist. Fingers crossed!

[JediReject in reply to lucieboo]

Sadly it doesn't always carry on working years for some of us. When I was on it for 12-15 months prior to my SCT it did not reduce my speen size but could of stopped it getting bigger I don't know. I recall the anticipation followed by relief I felt when my itching ceased soon after starting it and my general wellbeing improved greatly. Hope you can stay on it at a different dose / alongside other treatment options.

C

[lucieboo]

I hope so. I'm waiting to hear from my haematologist. I've only been taking it since April, wonderful to start with. This is such a complicated cancer. Hydrea worked fo me for years.

[EPguy]

Have you discussed INF (PEG) with your Dr? It can be helpful in early MF.

[lucieboo]

I see her again in March. It is every six months. I suspect there may be a re-think, because I still get some itching and the platelets keep dropping. The white cells are not really being controlled by Jakavi and I think the spleen is still growing.