hello everyone, I am wondering if anyone else here has been diagnosed with PV at a young age & how they have faired. I’m only 26 years old and my anxiety has been through the roof & have been trying to calm down cause it’ll only make everything worse. Little bit of a bummer, cause I’ve been extremely active & healthy my whole life. I am hoping to live well with this for as many years as I can. I am mostly scared about the transition to other cancers & not being able to live a long life. My blood pressure is 120/78, so not sure if the increased blood pressure comes overtime, but I’d like to keep that down. It’s been tough being in groups where most people are in their 40’s, 50’s, 60’s. The only symptom I appear to have is occasional left arm numbness & burning in the foot that feels like it’s from the top of my foot like it’s going up to my shin. Has anyone found relief for those type of things? Looking forward to any advice offered
PV at a young age: hello everyone, I am wondering... - MPN Voice
PV at a young age
Hello. I’m sorry you have been diagnosed with PV, and at such a tender age. I’m recently diagnosed myself and my knowledge is in its infancy. You will get lots of good advice and fact-driven info from others
That must be tough. I was 37 when diagnosed with ET and it does feel a little disconsanant when the literature says it is more common in the over sixties.
Hi Nrl303,
I'm 32 and have had ET since I was at least 20. I didn't find out about the official diagnosis until around 2 years ago though. It was hard and scary at first, and some days can still feel that way, but you'll see on this forum that many people live well with an MPN for a long time and doctors say patients should have a normal lifespan.
One thing that's given me some sense of control over the MPN is making significant lifestyle changes - such as really working on reducing/handling stress better, eating an anti-inflammatory/mediterranean diet, consistent exercise - and they've helped. MPN's are basically chronic inflammatory diseases, and inflammation can contribute to symptoms, clots, and even plays a role in progression. So targeting inflammation through lifestyle choices can/may help you.
Here's a great presentation on this by an MPN specialist: youtube.com/watch?v=Dh0H418...
Here are a couple research papers as well on inflammation and MPNs:
ncbi.nlm.nih.gov/pmc/articl....
pubmed.ncbi.nlm.nih.gov/266...
Also, there's a new group called MPN Young Patient Network. It's for patients under 40 and there's a Facebook group for members as well. I encourage you to check it out! Here's the link to learn more: mpnvoice.org.uk/news/young-...
I can completely understand how you’re feeling, when you don’t fit the demographic of the literature that out there it’s scary. I was diagnosed at 37 but the blood work available due to moving area only goes back to me being 24 and my platelet count was high then, no one thought to look into it until I moved GP practice!
There’s little info about the younger age groups but there certainly seems to be more and more of us in the younger age groups joining the forums, so perhaps Dr’s are thinking to look into it more which is a good thing.
Like you I get shin pain in my left leg more so and my left arm, haven’t found much to ease it , tend to just ride it out or sleep it off at night!
My advise would be to just keep asking questions, the MPN groups are fantastically supportive xx
Don’t panic! Breathe big and slow! Try to ensure you have an MPN specialist and live your long and active life! My son was diagnosed with MF at age 19. He’s now 26 and his life is going well, with a great MPN team to turn to when he needs them. My anxiety was so overwhelming that I felt crippled - I’ve learned to manage that at last, and so has he, and I now realise what a huge energy sap it has been. Join the MPN Voice young group , plenty of people in their 20’s. Or message me direct and I’ll ask my son to be in touch. Where are you based?
Do remember that there’s absolutely good reason to be excited and positive about the future of MPN management and treatment. So give yourself a hug and smile!
The state of the art thinking among some USA, Danish, French and German MPN specialists is that young people should be offered the immune system boosting drug interferon alfa because it has been shown, via a 35 year long retrospective study, to usually prevent their PV disease from progressing to myelofibrosis and usually enables them to live a normal or near normal lifespan. This New York City based doctor explains (3 minute video): youtu.be/s9euOVQGhks
this statement is not entirely accurate, you say Interferon usually prevents progression.
The reality as explained to me recently by Dr V and accepted my most experts is it may slow or prevent progression for a MINORITY. It is also worth reiterating that something like 60% drop out of Peg/Bes treatment after 6 years due to toxicity. This fact was stated recently in a statement by Clair Harrison and in Oct 22 in a presentation by Dr Gisslinger
at the doc to doc conference in New York, on the slide showing this it says slide provided by Dr Hasselbach. I think the videos are still viewable. As most people know Gisslinger and Hasselbach are interferon gurus, they wouldn’t present it if not correct.
Peg /Bes is possibly the best drug out there for PV currently and if someone can tolerate it great but the claims need to be real and accurate.
60% dropout due to toxicity?? Two months ago Dr. Silver said: "Overall, when properly used, our data [20+ years], the French, the Danish and Austrian data indicate that about 15-25% of patients have side effects [from interferon] that cause the discontinuation of it's use, about the same as that of hydroxyurea." youtu.be/paNJxC7ypRU
With all due respect, your reply sounds a bit tone deaf to its audience. Monarch's post is attempting to provide insight and positivity for a newly diagnosed 26 year old, not to get pedantic or highlight limitations on current treatments on the original poster's thread. Is there some valuable advice you would like to share with Nrl?
Well to be factual the poster didnt ask about drug treatments so maybe Monarchs post is that relevant either, I hope you wont be upset about that also. What is important is that info posted about treatments is accurate (for obvious reasons) , the post wasnt accurate for the reasons I posted. If you think correcting inaccuracys about treatments is pedantic your welcome to your views, and I do think that accurate information about treatments is useful to anyone with a MPN. Sorry if you got yourself upset about it though.,I take it wasnt you who gave my post a like
Hi, I think what Ainslie is trying to convey is that we all are so completely different in how our bodies respond to INF's and how our particular MPN effects our health. There are so many different views by MPN specialists on the significance of INF's in terms of lowering AB and stopping progression. It depends on which specialist your getting your info from.
My MPN specialist (Dr. Tefferi) would completely disagree with this view point. He consistently has told me that the jury is still out on the significance of lowering the AB and progression rates. How many people on this forum have reported that they cured of their MPN because of their INF's use? I know one person who was cured in 9 months after taking Pegasy's. Very very rare!
We need to present ALL information in regards to treating MPN's. I have had PV 20 years and am one of the people who couldn't tolerate a 22.5 mcg dose of PEG. Dr. Tefferi has me on 2 aspirin a day and venesections every 3-4 months. This regimen works wonderfully for me! I don't suffer from any horrible PV symptoms. A recent BMB shows no progression and no increased fibrosis with an AB of over 90%. Please note I have NO other bad mutations (perhaps that is the key) Each one of of is completely different from another!!! We don't all fit into the same box. Just thought this viewpoint is important as well especially for young people trying to figure out what to do. Thanks Ainslie for presenting your viewpoint! We need to hear them.
These are direct quotes from a news article (link below) about Weill Cornell's retrospective analysis of the medical records of 470 of their PV patients spanning 45 years:
---"patients with polycythemia vera (PV) who receive interferon had a significantly lower risk of developing myelofibrosis"
--"when compared to other standard treatments for PV, interferon enables patients to live much longer."
--"20 years after diagnosis, 85% of patients who had been treated with interferon had not progressed to myelofibrosis, compared to 59% percent of the HU group and 51% of the phlebotomy group."
---"20 years after diagnosis overall survival for patients on interferon was 95%, compared to 63% for HU and 57% for phlebotomy."
crt.org/wp-content/uploads/...
That’s great and as I posted I think that Peg or Bes is a good idea to try and would probably be my drug of choice if I could tolerate it, however what you have written about are obviously the patients who didn’t drop out, I think it’s important to state the reality ie the drop out rates I posted above, otherwise it paints a unrealistic picture which can be misleading. Also not all experts agree with Dr Silver or his stats. As experts have mentioned re these stats it’s not a multi centre study. I have heard Dr Hoffman re Dr Silvers enthusiastic views on Peg etc, he said if it was really that good for so many patients we would all be prescribing it for all our patients but they are not. When Dr Hoffman talks everyone listens. It’s probably the best drug we have currently (not much choice), but it’s tolerability problem is a
issue as stated above.
As Hunter says, member Nrl303 has can look forward to excellent and growing options in treatments. IFN remains one of them.
If there are new data on IFN please provide the links as this would be an important change in our knowledge. I cannot find. This old 2014 letter from Dr Hasselbalch is familiar to many of us with the more familiar 10-20% rate:
"Low dose IFN is well tolerated by the large majority of patients (10-20 % do not tolerate IFN very well)"
In this recent report on the Besremi Conti PV study, including the top IFN Drs:
"Rates of adverse events, serious adverse events and treatment-related adverse events over the entire treatment period were balanced between the study arms(Bes/HU)" This matches the Dr Silver quote in monarch5000 reply.
nature.com/articles/s41375-...
I know Dr Hasselabch reasonably well , he is one of the nicest Docs you can meet, prior to starting Peg I had long consult with him in 2013 and he told me that long term 40-50% drop out of Peg treatment, he also told me for a minority it can cause itch to increase dramatically, he was right about the itch in my case. In the second link you posted note it doesnt mention drop out rate , they are referred to as non responders but it doesnt say how many didnt respond. I will look out the reports by Gisslinger and Clair Harrison and try and post them , the last tiem I tried to copy and post slides they came out too small to read. In the meantime its worth dwelling on the 10-20% rate that you are familiar with, if that was the case and Peg/Bes was as good as the pro Peg docs and patients express then as Dr Hoffman said 80-90% of patients would be on it and stay on it. We all know that 80-90% are not on it, its great for those it works on but we have to be realistic about how many can stay on it in reality. We should be positive and realistic.
I looked out the presentations but for some reason it wont let me upload the pictures of the presentations I took a photo of with my ipad, I also wont let me copy and paste them, I seem to remember you post quite lot of such things , is there a procedure for posting them, do they need to be certain types of jpeg or something, I note they have to be less than 2MB, failing that if you would like a e-mail copy I can email them if you give me your e-mail address by PM and maybe you can post them, ditto to anyone else who wants them e-mailed or who may offer to post them , ie anyone with better computer skills than me, not hard!
I use a Windows PC, there should be something equivalent for Apple Mac. Mobile probably is not as easy to do this.
The fix-all is sampled here, see my random selection of our posts. The "take a ScreenShot" option (right click in Windows) can select anything you want in the browser screen. It pastes straight into the post without need for any jpg etc save operation. They do require naming it, a minor pain.
This works with both Firefox and Edge, Chrome may not have this option.
Strangely the direct paste works only in replies, it does not work when I'm making an original post, it needs the jpg intermediary.
--
My Chat function seems broken, some issue with replying. I've contacted the site operators but no fix so far.
I'm so sorry you're having all this to deal with. I was diagnosed aged 28, 16 years ago, and it's never stopped me doing anything. I've worked full-time and had two horses who I've looked after myself every day so all the active stuff plus riding, competing, going to exercise classes, walking the dog, having a social life, so please try not to worry! I don't think of it as a cancer, I say I've got a blood condition or disorder if anyone asks.
This is exactly the same attitude we have towards my husband's post PV Primary MF.
He works full time we go on holidays . He's had PV over 6 years now and MF primary over 4 years he was 40 when he was diagnosed.
He always says he's grateful he has a cancer that can be managed .
He's on ruxolitnib and it's been a life changer .
It's so scary when you are first diagnosed the first thing you do is research and it takes you to life expectancy. This in Itself is so daunting.
Medication has come along way with MPNs there's people on here with MPNs over the age of 80 .
This is the best site to get support .
Take care
I was diagnosed with primary mylefibrosis at 24 I think a diagnosis like that you are going to worry the one thing I can tell you is stay off google a lot of the important information is outdated we have treatment options best of luck try not to worry if you ever needed vent iam always around
I was 38 when I found out I had PV. Was so scary as my daughter was 2 years old. But after talking to my doctor, this website I have learned that it can be managed. I hate the thought that my daughter will never know me before all of my health issues but I work, travel, have fun and live my life. Anxiety is one of the hardest things to overcome and not sure I ever fully will but I try. I feel good. That is my daily focus and my support system is great. I have had it now almost 4 years. I try my hardest to forget about it and focus on what is good and be grateful. I also don’t wait anymore! If I want to do it, I do it! Planning another big trip this year! Don’t let this rule you. Will add you to my prayers
The anxiety is understandable for anyone recently diagnosed with PV or any MPN. Even harder when you are younger the the norm for PV. There is some very good news regarding your prognosis. Treatment has improved for PV to the point that many people can expect to live a normal lifespan. ashpublications.org/blood/a... Moreover, the understanding of MPNs is progressing. MPN Specialists are talking about how they expect that 10 years from now, the treatment options for MPNs will transform care. The older studies regarding lifespan may simply not apply to you.
Some MPN experts are now recommending starting Low-risk PV patients on interferon (Besremi/Pegasys) sooner to reduce the risk of progression. The Low-PV clinical trial is underway to provide evidence to support this recommendation. Speaking from my own experience, Besremi is a superior option for treatment. It has been easier to tolerate and more effective than both hydroxyurea and phlebotomies. I am at higher risk for progression due to also having the NF1 mutation. Treatment with the interferons has significantly improved my quality of life and my allele burden has been reduced from 38% to 9% in 18 months of treatment at low doses.
You have more options to treat the PV that I did when I was first diagnosed with a MPN 31 years ago. I was originally diagnosed with ET but it progressed to PV 9 years ago. I have lived a great life and at age 67 continue to do so. You should plan to do the same.
Regarding blood pressure, if you control the erythrocytosis, then your blood pressure should stay under control. The hyperviscosity of blood is the issue. I used to have hypertension. My BP returned to normal when we controlled the erythrocytosis. Bear in mind that we can always develop unrelated cardiovascular issues that would increase our risks. That is why it is so important to take good overall care of our health. Healthy choices regarding diet, exercise, weight control, cardiovascular conditioning, reducing exposure to toxins/carcinogens, etc. are more important for people with MPNs.
The burning on your foot sounds like a classic PV microvascular symptom. Be sure to talk to your MPN Care team about it. I have also experienced that issue when off aspirin. The aspirin keeps it under control for me.
Regarding your MPN Care Team, it is very important to consult with a MPN Specialist. There are some MPN Specialists who focus on younger patients. This is just one example. pediatric-mpn.weill.cornell... It is worth doing whatever it takes to consult with a MPN Specialist. Here are two lists.
worldwide mpnforum.com/list-hem./
USA pvreporter.com/mpn-speciali...
Do be sure to check out the resources for younger MPNers on the MPN Voice site. Look for the blogs by the amazing Alice. They are terrific.
Wishing you all the best.
Thanks Hunter! Do you recommend starting on Peg or Besremi or does it not really matter to start? I want to stay away from hydroxyurea because I want to live my life & stay away from all the secondary skin cancer people get being on that drug. Plus, Besremi & Peg are the only drugs that can put us in remission
The evidence is still pending on whether there is a significant difference between Pegasys and Besremi in terms of efficacy and tolerance. Theoretically, Besremi may be easier to tolerate than Pegasys due to its monopegylated formulation. In addition, Besremi is FDA approved for PV. Pegasys is used off-label for PV. Based on those criteria, the case can be made for Besremi over Pegasys.
My own experience is that that there is no difference between to two forms of interferon. A few people have reported that they responded better to Pegasys. My thought is that we are all different. Some may respond better to one than the other, but many will not find them any different. There is a reasonable preference for a drug that has FDA approval for the condition being treated. For many people it will come down to what your insurance/healthcare system will cover. Note that Besremi costs 3X what Pegasys does. It may be easier to get Pegasys approved than Besremi.
I would be OK with either Pegasys or Besremi. I started on Pegasys and did fine on it. I switched to Besremi because it has FDA approval and for the possibility that it might be easier to tolerate in the long-term.
Suggest you review your treatment goals with a MPN Specialist. If you choose to add reducing the risk of progression to the priorities, that will drive the decision making.
Wishing you all the best.
I would suggest Pegasys because Besremi is horrendously expensive ($13,000+ a month in the USA). So for a 26 year old to take Besremi for 40 years would add up to over 6 million dollars! Whereas Besremi is available only in single use syringes, Pegasys is available in vials that have a longer shelf life (up to 3 years) and it's easier to draw partial doses from these vials using a new one dollar syringe and needle each time. Young people such as yourself that take Pegasys have a higher chance of achieving a stage called "Minimal Residual Disease" in which case the usual weekly injections are stretched out of every 3-4 weeks, further lowering the annual cost of the drug.
Hi Nrl303,
Sorry to hear about your PV diagnosis.
I was diagnosed with ET in 2020 with a BMB, Jak2+. The aspirin really helped with sore hands and feet. Doctor said that your body has a secret, it can make blood clots, and now we know it too. Fast forward another year and I have PV and my 20 yr old daughter who was getting headaches for years is diagnosed with ET.
A few years on and we are both thriving. We adjusted our lifestyles only slightly as we were very healthy to start with.
Find an MPN Specialist to help care for you. Take care of yourself mentally and physically. I am on Pegasys for a year now and daughter is watch and wait.
Join the young group and keep your sanity.
Medicines are being invented, trialed, tweaked and combined with great out comes. Best of health to you ❤️❤️
It sounds like your daughter and my son are in very similar circumstances. He was just diagnosed with ET and is about to turn 20 y/o. Our kids will likely (hopefully) live in a completely different MPN world than we do now. I also think watching their mom’s thrive thru disease (I’m not an MPN patient, but a 3 time cancer survivor of other stripes) gives a bit more optimism and strength. I hope this community can give the OP similar support! You, she, he, they will thrive!!!!
I'm sorry you have to go through this initial stage of trying to understand this diagnosis. I'm sure you will get a lot of good advice here. Rest assured you can expect a pretty typical life expectancy. Treatments are always just getting better also!! I was diagnosed during pregnancy and it rocked me. A few years on and I feel GREAT and living a completely normal life. It will be okay. Best thing I have ever done was to find a MPN specialist. They will ensure optimum treatment throughout your long-lived life.
I think the main rule is as little stress as possible. Create a good positive mood for yourself and look at life with optimism. To reduce stress, I drink a cup of green tea every morning, which reduces cortisol, and I take hawthorn capsules to balance blood pressure. And it is very important to have a favorite hobby. I do a blood test every three months and talk to the doctor once a year.
This is just my experience with blood pressure.
My blood pressure has always been good at around 110/70. In the years leading up to my ET diagnosis my systolic increased to 125-130. I thought it was age related.
I was diagnosed with ET in 2016 with a borderline haematocrit of 47.9. I began treatment with hydrea. I got a complete haematological response within a couple of months. And surprisingly my systolic blood pressure returned to normal. I’m convinced the viscosity of my blood at the time was the villain. There is no other explanation!
Hey Hey 
I was diagnosed with 23 and remember being really scared and not really having the possibility to talk to anybody. I think it is always a good idea to either look for help in such forums or even consult a professional to talk through your anxieties.
There are many online therapy possibilities too if you feel it's difficult to arrange it live with work etc. and I have to say that it did help me quite a bit. My initial reaction was to just almost ignore the diagnosis because I did not know how to cope with it. I feel, with the years I have just accepted that it is there and I'll have to be with it for some time. However, I have traveled to all the wonderful places of this earth, went for several months on research cruises and hikes and road trips, and never really felt that I was not able to do this because of my diagnosis!
You will be okay, talk to specialists and people who can help you with the anxiety and don`t let it control you ! Sometimes there will be drawbacks and values might be elevated or you afraid to go to the doctor, but you are never alone with it 🙂
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