Thanks @Erica … how about you guys can still work while having this disease?
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Hi @ I have Chronic lymphocytic leukaemia (CLL) and I continued working
.I did cut back on my hours before retirement though.
Hi @Nicki535 ive already asked my gp regarding momelatinib they said its not available in Philippines. Do you guys have idea how to purchase this meds? Thank you
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Hi @Ela
It has just become available in the UK in the last month or two so hopefully it will be available in your country soon.
We don’t buy it here as we are lucky to have a National Health service and the medication is prescribed through our hospitals so can’t help you there I’m afraid. Have you started Ruxolitinib yet ? What is your average red blood count ?
Regards Nicola
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Hi @Nicki535 my red blood count are still in normal range, i havnt started ruxo yet as i am afraid that my condition may get worse once i start ruxo… now i have normal blood count but with hepatomegaly and splenomegaly
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Well that’s really good news you are very early stages. So no need to worry at this stage. I was on watch and wait for 11 years with no medication. My Spleen did enlatge over those years but didn’t cause a problem. I should sit back and not worry could be years before any changes if your red count is within normal range now it only gradually lowers once the condition progresses
All the best Nicola
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Thank you @Nicki535 … how about your experience in taking ruxo before? What dose did you take ? My doctor said to me that i have to take ruxo 5mg twice a day … do you think it will affect my white count if ever?
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Oh so your Doctor is recommending a low dose of Rux now despite your blood levels being within normal range ? I was on 10mg twice a day and yea it did drop my red count to 65-70 but as I said previously my HB red count had been dropping over a number of years and was at 85. If yours is normal at about 110 -120 then it probably won’t drop as much in comparison. I only needed transfusions when my count dropped below 75 as I felt fine.
Everyone is different and the rate things change varies too.
Personally unless any other reason than a slightly enlarged spleen I would be holding off any medication. If you feel fine and not out of breath which you can’t be of your levels are normal I would be waiting. But unless something else dictates there may be a problem in the near future if you don’t take it then you will have to go by your Doctor’s advice.
I would discuss further with your Doctor
Regards
Nicola
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Hi @Nicki535 how many months taking ruxo before your hemoglobin drops to 65-70? And how many month Did u take ruxo? Thank you and sorry if am always asking
Hi Ela
It dropped in one month. I had taken Rux for about 8 months and have had 18 units of blood altogether in that time.
Regard
Nicola
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Hi anyone here used hydroxyurea before? Does it help ?
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Hello @Ela, I’ve seen your questions and really feel for you trying to figure out what you’re living with. I’m really sorry to read of your worries. I’d say it’s natural to worry about all this, and I expect it’s extra stressful if you’re not sure if you can access the treatments you might need.
I hope you don’t mind me asking but have you been diagnosed with myelofibrosis? I can’t see from your posts what blood cancer you have. Perhaps you’ll find the Blood Cancer UK information about Myelofibrosis (MF) useful: What is myelofibrosis? | Blood Cancer UK
If you’ve been diagnosed with Myelofibrosis (MF), you might find the information about MPNs helpful too. I have a different Myeloproliferative neoplasms (MPN) called Polycythaemia vera (PV) which can transform into MF over time. MPNs can be lived with into normal old age if your treatment works well. Have a look to see if there is information relevant to you: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
I see you’ve asked about spleen size. With MPNs, because our bodies can overproduce blood due to the gene mutations we have, our spleens can start producing blood too, hence why they can grow larger. If I understand correctly, the cytoreductive medicines like hydroxyurea and others you’ve asked about can help reduce the amount of blood our bodies make, and this helps make our spleens smaller.
I was fortunate to attend a blood cancer conference this year and took notes relating to MPNs. Maybe you’ll find some of my notes helpful: Northern California Blood Cancer Conference - #45 by Duncan
Hope this helps! Sorry you’re going through this @Ela, but you’re really advocating well for yourself.
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Hi @Alison1964
How are you Alison with your treatment. Hope all is going well for you
Regards
Nicola
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Hi Nicki,
How are you doing with momelotinib?
My dad is facing a similar situation. He’s been on Ruxolitinib for a year, but his hemoglobin levels have been declining from the 90s to below 80. We introduced EPO injections, which helped for a few months and brought his levels back to over 90, but now they’re on a downward trend again, currently at 78. I’m concerned he might need a transfusion soon.
The doctor has suggested momelotinib. Did you have to take a break from Rux before starting momelotinib, or were you able to switch directly?
I also have some questions for everyone: Did any of you experience weight loss, and if so, what strategies did you use to gain weight? My dad is over 75 and could use some support in this area.
Additionally, has anyone tried hyperbaric oxygen therapy? I’d love to hear if there were any positive outcomes.
Sorry for bombarding you with questions! I’ve just discovered this forum, and I can relate so much to what everyone is sharing.
Looking forward to your responses!
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Hello @ad7854 and welcome to this forum. I hope you find it a supportive space where you can share how it really is for you and your loved one. I have myelofibrosis and was on Ruxolitinib for a few years but have recently switched to Momelotinib. I was able to change medication straightaway to Momelotinib. It took a little while to find the correct dose that suited me and my haemoglobin (Hb) level has improved since I have been taking it. Prior to that on Ruxolitinib my Hb was dropping and I required transfusions of red blood cells. Regarding weight loss it might be worth asking the medical team if they could prescribe some drink supplements. I have a fruit juice style supplement which is quite palatable and adds a few calories. Wishing you all the best. Willow
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Hi @ad7854
I have been on momelotinib for 4-5 months now and just switched from Ruxolitinib overnight. So far so good as I was having transfusions every 4 weeks with epo injections.
No side effects apart from a bit of constipation from time to time and not had a transfusion for 5 months. It has increased my haemoglobin to around 98 which is fine for me as I can operate on 75 and over. I feel like I have loads of energy and can run back up the stairs.
As for weight loss I have had weight gain with it so currently on a diet. It’s increased my appetite but I know everyone is different with weight with Myelofibrosis.
Hope your Dad gets on with it well. Look forward to hearing about his progress.
@Willow nice to hear from you and glad you are doing well on the new meds
Best wishes
Nicki
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Hi @ad7854 a great big welcome to our forum and your care for your dad shines through.
It must be so difficult when you are powerless to make him better.
You have had great responses from @Willow and @Nicki535 of their experiences and show that every ones experiences are different.
Perhaps a good idea for your dad, or you with his permission, to ask about strategies for weight gain and the use of hyperbaric oxygen therapy plus the usage of any other supplements or treatments or symptoms your dad might have.
Please let us know how you get on and look after yourselves
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