Myelofibrosis and nausea

[kiwitraveller]

Hi everyone. I was diagnosed with Prefibrotic Myelofibrosis 3 years ago and current take asprin and 500mg Hu 8 times a week. I take the medication in the mornings with breakfast. The last few weeks I have been waking feeling nauseous- once I have eaten it eases but if I am late having lunch it returns. Does anyone else experience this the Hu - it is strange I have been fine on Hu up until now or is it the Asprin. Hey and I am not pregnant - am 70😄

Also my platelets have been all over the place - am currently having fortnightly bloods so over the last six weeks they have been 635, 937 and latest 791. When my platelets went up to 862 in August my Hu was increased from 7 x 500mg weekly to 8 which dropped it back a bit but then it shot up again. Currently my WBC is 3.4, Hb 98 and RBC 2.75.

Interested to hear other experiences. Other than the nausea and leg tingling at night I feel fine

[MCW22]

I was under the impression that myelofibrosis was always treated with ruxolitinib

[ConniesDad in reply to MCW22]

Only for patients who are at risk level intermediate 2 or high. Anyone at Intermediate 1 will have to wait until they deteriorate before they are able to get ruxolitinib

[kiwitraveller in reply to MCW22]

I have Prefibrotic Myelofibrosis so very early stages so not necessarily Ruxolitinib

[tracey13 in reply to MCW22]

My husband has post PV MF he's on ruxolitanib he's been brilliant since starting this his iron was so low when he was on hydroxy he couldn't function it was draining him.

Tracey

[MCW22]

This is awful that you are made to wait until you get worse before being given the drug that will help you. I wonder if as with so many other things it is a postcode lottery. I have pv Jak2 and after my bmb showed grade 1 to 2 fibrosis I was changed over from hydroxy to Ruxolitinib even though the bmb specifically said I had not progressed to mf. That was 2 years ago.

[ConniesDad in reply to MCW22]

I don’t think it’s a postcode lottery issue but I am aware that ruxolitinib has different prescribing rules for PV patients. Personally I’m gutted that I can’t get it yet, as I have been taking Peg for about 1 year on an increasing dose to hopefully reduce my spleen size but it hasn’t worked. My haematologist said that ruxolitinib is the best option to reduce it but I can’t have it yet and I can’t start the stem cell transplant until the spleen is reduced. Frustrating

[tracey13 in reply to MCW22]

My husband's bone marrow showed primary MF it says on his hospital letters post PV MF so I'm not sure if he's classes as PV still or MF 🤷

[hunter5582]

My GP says "The simplest explanation is usually the right explanation." HU and aspirin can both cause nausea, but HU is more likely to cause it than enteric low-dose aspirin. The toxicity of HU is something that can accumulate over time and some adverse effects do not manifest for years. That is not to rule out the aspirin, just that it is less likely. It is, of course, possible that the nausea is unrelated to both meds.

This would be good evidence for HU-intolerance should you wan to make the case to switch to ruxolitinb prior to progressing . As in all things involving health-system formularies designed to save money, it would still be an uphill battle.

[Cja1956]

It’s interesting that you mentioned nausea. I was diagnosed with myelofibrosis intermediate 1 in 2019. I was taking hu, Fedratinib, and baby aspirin for the last 2 years. I started feeling nauseous sometime during this year, but I don’t remember when it started. My weight has dropped about 10 pounds because of lack of appetite. My platelets are also high. Last count was 854.

Now here is the interesting part. I had a second opinion in October and that doctor took me off of Fedratinib. That was when my platelets went up but my hemoglobin normalized for the first time in a while. My nausea is much improved so I’m still not sure what was causing it.

I wish you luck in finding the answers you’re looking for.

[Bluetop]

Thankfully I have not suffered from nausea, but when I first started on hydroxy (5 yr ago), I too was tested fortnightly and my bloods were all over the place, so each time the hydroxy dose was changed. It took the best part of a year to see things settle. They still do vary, but not as much and I am on 3 monthly appointmants now.