Age-Based Risk

[rcan_sMF]

I could not agree more with focusing on arresting MPN disease progression than on solely treating symptomology/lab results. Some of it is lack of research $ (and researchers), the unique disease/status of each patient, physician bias and drug availability/approval/cost …and you all learned MPN community members can, if you wish, fill in the other, myriad obstructions we’ve all experienced in one way one or another. .

I might question the hematologist (I’m a Yank, yes) who mentioned age 60 and beyond. It may well be that more versions in the MPN spectrum are statistically present at older age. What your hematologist may have forgotten to inform you is that it is often 10-15 yrs before one is properly or accurately diagnosed. That alone would make 60 the real 45.

We need more inquisitive and well-trained docs/consultants to spot ET/PV earlier; it’s in the lab results and reported symptomology. Waking up one morning with a form of myelofibrosis doesn’t just happen. We need our docs and scientists to do better and government to fund research. Ok, off my soapbox ( as we celebrate our independence in 5 days from our friends across the pond.)

[hunter5582]

I certainly agree with your summary. I will jump on your soapbox with you.

We can do more than hope for progress in diagnosing and treating MPNs. We can actively support it. We have the ability to advocate for ourselves and for the larger MPN community. Assertive patients receive higher quality care. Passive patients do not. This applies to each of us individually and all of us collectively.

We have the opportunity to advocate for ourselves in how we manage our own care. We each need to set our own treatment goals based on our desired outcome, risk tolerance, and treatment preference. We need to select providers who respect their patient's ability to make informed decisions. We also must advocate for access to our preferred treatment, whether through private insurance or a public healthcare system. It is important to know that "NO" does not mean "NO" in medication/treatment approvals. It means that you have to know how to advocate and appeal a bad decision.

We also have the ability to advocate collectively. There are excellent organizations that we can join or support such as MPN Voice (in the UK). MPN Advocacy and Education International (in the USA) and other organizations are advocating for people with MPNs. We can join in these advocacy efforts through our time and financial support.

We can also push for improved MPN-expert care in our healthcare systems. Unfortunately, it is quite common for MPNs to go unrecognized or misdiagnosed. Inadequate care can only continue when it is tolerated. We can help to push awareness of MPNs into the medical community and advocate for better training and access to MPN-expert care.

Wishing all of you all the best and success in your journey with a MPN.

[SoledadBarcelona in reply to hunter5582]

I agree BUT any expert in MPN talk about diet, good quality of sleep, exercise and movement, microbiote, proper suplementation, etc? No is the answer. And, the major part of the money, where does it go?. Thanks

[MaggieSylvie]

I suspected as much. I was diagnosed with MDS/thrombocytosis in 2019, but I'm sure that whatever symptoms I have - that could be put down to be signs of these blood cancers - were there years before. But, of course, if we are never diagnosed until we are seventyish, who's going to care about holding back the condition? I'n getting EPO injections but I'm not sure how much they're helping me.

[onlineallthetime]

Would y'all mind offering the signs and symptoms y'all noticed way before diagnosis? My mother is JAK2 positive polycythemia and was diagnosed a few months after a stroke when her new primary care doctor saw the bloodwork all over the place and referred her to a hematologist. Looking back through her labs over the years there are occasional anomalies (the odd white cell count here or RDW there) but all transient and variable with no consistent pattern to point to anything out of the ordinary.

It seems likely that it is familial as her father and nearly all of his 10 siblings passed from heart attacks and her sister developed some blood disorder in her 50s. We have limited information there as she was very private and gave few details of what was going on while she was alive then progressed into dementia and passed away over 10 years ago. We've pieced together what little we know by pooling the bits of information various family members were aware of and suspect either PV or ET.

My oldest sister is in the process now of testing for the JAK2 mutation as she wants to be proactive going forward. Are the symptoms prior to diagnosis the same as we see listed for once the bloodwork starts showing the signs or are there others we can be looking out for? Thanks in advance.

[GardNerd]

Yes! To all of this! My hematologist (at Stanford) just did phlebotomies starting at my diagnosis at age 44. He always said, "We'll wait until you're 60 and then go with hydroxyurea." I vaguely remember him mentioning an interferon at some point, but he dismissed that because it would cause "flu like symptoms." Shame on me for not investigating that on my own.

I'm happy to be on Besremi now, but wish I would have started Pegasus years ago.