Had appointment today with my consultant. I’ve had PV since 2014 and been on Peg since 2018 but over the last year my HGB has dropped to 100 and spleen increased to 18cm. Peg has therefore been stopped.
As a result, he told me he was pretty sure I now have MF and started to talk about Momelotinib and SCT. As you can imagine I’m absolutely devastated! I don’t actually have a BMB until Monday but he feels confident that the test will back this up.
I have very few symptoms and keep fit with 3 gym visits a week and a lot of walks. I feel incredibly overwhelmed and like I need to do something. I have a young family and that makes it even worse.
Sorry but I felt the need to offload the experience as I know how wonderfully supportive members are on this forum.
For those who have been through the same experience, if you have any advice it would be greatly appreciated.
Many thanks
Pete
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PT99
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Sorry to hear the news that you may have progressed to MF. Once you have a clear diagnosis, you can make a good treatment decision. Given what you describe, momelotinib would be a logical starting point if the MF diagnosis is confirmed. It sounds like you are fortunate to have a hematologist who is familiar with MPNs. This will make a huge difference as you move forward.
It sounds like you are doing well with overall health and are in a good position to manage MF successfully should that be needed. We are fortunate that treatment options have improved and are continuing to improve.
The best advice I can give is to manage the stress of this situation effectively. We all need coping strategies that work for us. this is my list.
1. Support from my family, friends, and faith community.
2. The MPN forums (my friends and MPN Family)
3. Maintain your sense of humor and find ways to have fun no matter what.
4. Surround yourself with things that are positive and lift you up.
5. Mindfulness practices - I practice Qigong.
6. Say the Serenity Prayer every day and take it to heart!
7. Educate yourself about your condition(s). Knowledge is power.
8. Create a high-quality treatment team who you trust.
9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the MPN.
There have been some challenges with the MPN and the other related and unrelated medical issues I face. Sometimes you do, as the military folks say, have to "Embrace the Suck" or just "Suck It Up Buttercup." However - it is not all "Suck." There is plenty of good in life to enjoy and embrace. As the prayer says, I seek the serenity to accept what I cannot change, courage to change what I can, and wisdom to know the difference.
More than anything else at this point, know that you can manage this. Have confidence that you will be one of many who do manage the MPN successfully.
Please note that I have not always been so rational in managing my health issues. I learned the hard way by not managing so well at all times. After I got through a particularly nasty bout of medical issues, I swore never again. In 2018, I found out the ET had progressed to PV and over the next two years had four surgeries, including heart and brain surgery. My list of coping strategies was essential in maintaining my sanity.
Managing a MPN can certainly be a rollercoaster, and not the fun kind! We can, however, find ways to cope. Most importantly, we do not have to cope alone. Resilience is a choice as well as a set of attributes. It is a choice that we can all make. Fortunately, there is plenty of help available if we choose to access it.
Yes they are a rollercoaster, but I’ve decided to not ride it. The Besremi got me to middle of normal range. 250. I was always hovering between 650 and 900 thrombocytes before Besremi. Then the horrible debilitating side effects started. I eventually stopped in June. The thrombocytes are crawling up, ever so slowly. Watching and waiting. I knew that if I made it to the 3 years point, I might have gone into remission. It was not in my stars.
Anagrelide has done a number on my heart and still does. HU gave me devastating neurological symptoms right at the beginning. I’m trying to bridge over the time till the next med appears. Meanwhile, I’m doing most of the points that Hunter suggests above and alternative supplements. I’ve have started a charity which is giving me great joy and fun.
Don’t waste a single day worrying. It’s not worth it! 👍
Having just been diagnosed with MF I would just like to say Thankyou Hunter for your ongoing advice and contribution to this wonderful and supportive group. Thankyou. Lynn
(Obviously no need to apologise for offloading!). Sorry for the stress of the news of possible progression; but try not to assume the most extreme scenario (easy to say and harder to do I know). Wishing you all the best for Monday’s BMB.
After managing ET for 10 years I was diagnosed with post ET MF 2 years ago, I'm only 44.
My advice, learn all you can about your disease and how it effects you. Once you get your BMB results back, work with your specialist on what the best treatment options are.
For me that was trying a jak inhibitor (momelotinib, rux etc). Some people respond well to them and have many good years.
When the Jak inhibitor option fails, if suitable, try a clinical trial.
When those options are exhausted, prepare for a stem cell transplant.
I'm currently preparing for a transplant.
Research and learn as much as you are comfortable with. Some people need all the details others don't.
If possible see a psychologist with experience treating patients with blood cancers.
I’ve been told a lot of things, ie that my daughter had systemic lupus at 2.5 years. The doctor didn’t wait for the completed tests. After that, we knew she had Rheumatism and also in the eyes. I was devastated thinking 1/2 these kids don’t make it to puberty. 1,5 years of fear and instability until we changed her diet and all went away. 4 years later normal diet and Rheuma again then diet and nothing she’s now 20 🙂
Please wait til Monday. Do your wonderful gym days enjoy the weekend and Monday you’ll know more. Then you continue as till today, looking for answers, but with a good MPN specialist, who is a team player and will support you best. Most importantly is, you feel well.
You will learn so much getting support here from our friends! There are some who were able to turn second stage MF to fist stage. Anti inflammatory diet, exercise, etc Trust in the future. Don’t get stuck in the moment. You family will be fine.
This is a similar reply I have just posted for MadgeMc but it is equally relevant as you both seem to be at the same stage.
I was diagnosed with primary Myelofibrosis 14 years ago, aged 58. I was ir2 (intermediate risk 2) with level 4 marrow scarring. I wanted SCT asap, as I didn’t like what was going on inside of me. It was different then as Rux and other recently produced helpful drugs were not available to complicate the decision. Those available at the time were not highly rated.
Success rate then was 60% with a 20% chance of relapse and 20% mortality rate. Nearing what then was near the upper age limit I chose to go ahead.
Hunter and others make some good points. You need to do your research with the transplant team
It’s a tough ride and you need to be reasonably fit, without other ailments, going in. SCT is not suitable for all and indeed not all can find a suitable match.
Like many here, happy to chat or answer any questions as you move forward. Good luck.
I was in a similar position in 2021/2022. You need to find your DIPSS or similar score. This gives you an estimate of survival time. I was about 69 so a score of 14 more years was fine; not so when they calculated 3 years. If you read my posts from 2022 you'll see the turmoil I was in deciding whether to go for a sct or not. My 2 year sct anniversary is coming up in January. The first 6-8 months was hard but I'm fine now. Not everybody is and the mortality rate is high.
Dear Pete, first of all it’s OK to feel downhearted about this, I think we all try to maintain a positive and balanced attitude to our MPN. Sometimes we can just feel totally overwhelmed, and that’s not a ‘mortal sin’ in the grand scheme of things. I think you should allow yourself a day or so where you let those feelings out. Share how you feel with your partner, and have a cry about it, and then start planning for the future where your fitness will be such a boon. Every good wish for the future. Paul
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