PV

[MamPRV]

Hi this is my first post! I am 42 and was diagnosed with PV when I was 35. I think I probably had it at least 2 years prior to my diagnosis. I have a venesection every 8 weeks but in August I had a bleed from my spleen. As a result of this I had a bone marrow biopsy which showed myelofibrosis. I have been taking Ruxolitinib for 4 weeks. I wondered how other patients are coping with this medication,

[Rachelthepotter]

Hi. I was diagnosed with MF 3 years ago, after several years of fatigue and chest pains, and now take ruxolitinib. It’s not so bad, and it seems as tho new drugs are coming along that will help.

However, I’m a lot older than you, and I can see that it would look different to a 42 yr old. If you are on rux, you are on the current best available drug.

For a lot of people, including me, it dropped my Hg level as well as the platelets, so I got very tired. For many people the Hg comes back up over a few months.

Mine didn’t, so I have EPO to stimulate new red cell formation So therecare things that can be done.

The thing that I wasn't warned about, but wish I had been, was that if you’ve had a skin cancer, or lived in hot climates with sn damaged skin, rux can trigger a specific, and nasty, type of skin cancer called a sarcomatoid squamous cell carcinoma. It can grow very fast, and heeds to be taken seriously. It happened to me, and I couod really have done without it.

There’s a Living with MPNs patient day in November in London ( happens every 2 years) , which you might like to go to. Or watch the live stream. Its a good focus for current research, so worth getting to if you can.

Details somewhere on this forum: or Maz, our administrator, can tell you.

Do keep posting : I was glad I found this site , and I hope you find it helpful too.

Rachel

[MamPRV in reply to Rachelthepotter]

Thanks Rachel. I really appreciate your advice. My spleen decreased by a huge 6cm after a week and it’s great to not feel the discomfort of it on my ribs! The tiredness hasn’t really improved yet but I suppose it’s early days. I’m back to see the consultant next week to see if I’m staying on the current dosage.

Michelle

[Dustydog65 in reply to Rachelthepotter]

Hi Rachel, I've had PV for 18 years and was diagnosed at the age of 49. I live in the US and started out the first 13 years with only phlebotomies. Then my platelet counts were not being controlled so I was put on Hydroxyurea but I had an ankle wound that failed to heal, so I was switched to Jakafi (Ruxolitinib). I've been on it for two years. Though it completely controlled my blood counts, I developed several squamous cell carcinomas for which I've had numerous biopsies and surgeries just since July. I am still treating these ungodly lesions and I understand that they can come back. So I would be extremely cautious if you take Jakafi. Currently my dosage has been cut in half to 20mgs daily. I had two years of peace on the drug as I had no need for phlebotomies which, in itself was a miracle, but what a price to pay when dealing with skin cancer. This is a real problem.

[Cja1956]

I’m sorry to hear about your new diagnosis. I was just diagnosed with post ET MF this month. I’ve been on HU, anagrelide, and ruxo over the last 11 years. I have the least side effects on ruxo, so if I had to pick a “favorite”, that would be it. On Monday, my new hematologist is trying a new drug to replace the ruxo that has just been approved in the US, special for Myelofibrosis. It’s called inrebic. So, we’ll see how that goes.

[MamPRV in reply to Cja1956]

Thanks for your reply. It’s good to hear that you had few symptoms on Ruxolitinib. Good luck with your new medication

[pj1963]

Hello,

I am 56 and was diagnosed around 10 years ago with ET which progressed to MF 3 years ago. I've been on Rux ever since and feel much better than I've done in many years, mainly because I don't get the awful headaches which accompanied ET. My spleen was enlarged but I now can't feel it. The only downside is weight gain, but this is a small price to pay.

I hope you continue to do well on it.

Paula

[Cja1956 in reply to pj1963]

Hi, Paula,

I’m interested in what you wrote. I was diagnosed with ET in 2008. I just changed my hematologist beginning of September and she told me I am in the early stages of Myelofibrosis. She also told me I’m probably going to need a bone marrow transplant in the next 2-5 years. Were you told the same thing? Do you have the Jak2 mutation? I just wonder sometimes if she’s being overly aggressive.

[pj1963 in reply to Cja1956]

Hello, I was told I’d probably need an SCT at some point - nothing definite at all. I have annual BMBs and am currently waiting for the latest results.

[Cja1956 in reply to pj1963]

Thanks for your reply. I hope things continue to go well for you.

[MamPRV in reply to pj1963]

Thank you Paula. I’m pleased to hear you are doing well on Rux. Your story is giving me hope

[tracey13 in reply to pj1963]

That's my husband's only thing with ruxolitanib weight gain must say he does feel better for being on this medication .

[Susana7]

Hi Michelle, depending on your MF stage, it is worth checking with your haemo if you could benefit from being on Pegasys in combination with Ruxolitinib. It can be very effective in PV and early MF. I have PV and have been on Peg since diagnosis with excellent results. All the best to you, Susana x

[tracey13]

Hi my husband is post PV MF he started ruxolitanib in February 20mh twice a day he's had no side effects only thing is he's always hungry hence why he's gained weight.

All his bloods are in normal range and have been stable for months now.

We hoping his spleen has reduced back to normal size x