Newly Diagnosed (9/2017) with PV and ET

[bmboulanger]

I'm newly diagnosed with both PV and ET and still learning about the symptoms and treatments. Once diagnosed, my hematologist asked that I participate in a study of MPNs being conducted at UNM (University of New Mexico) Cancer Center. My hematologist has been very careful with treatment, slowly increasing my Hydroxyurea dosage until she got it just right. I have had few problems with the Hydroxyurea but did change to taking it at night before bed to minimize side effects during the day. She has been conservative with phlebotomy so as not to lower my iron levels too much. And though I'm not the fireball I used to be, if I get enough sleep, I am still able to do everything I've always done. I look forward to following others who have MPNs. I have included a more thorough overview of my diagnosis, treatment and supplement use in my profile. Thanks to all for sharing your health experience to help others with theirs!

[PeterNB]

I was diagnosed with ET and MF 8 years ago, still going stron, ask your doc about Ruxolitinib it has helped me more than any other MPN drug

[Susana7]

Hi, Welcome to the forum! I was initially diagnosed with ET (Jak2+ and very high platelets) but as the HCT rose the diagnosis changed to PV. You can’t have both, see the WHO diagnostic criteria (which state that to be diagnosed with ET you cannot have PV): mpnconnect.com/pdf/who-diag...

If you are Jak2+ with platelets and HCT both elevated then that is consistent with PV (whites might also be high in PV). Your doctor is right in that you can lead a normal life if the disease is well controlled. Sounds like yours is 😊. I have been on Pegasys interferon and aspirin for 2.5 years and all my counts are normal. I feel good generally and work full-time. Good luck! Susana X

[bmboulanger in reply to Susana7]

Thanks, Susana! Interestingly, my hematologist said that my bone marrow biopsy confirmed ET but not PV, but that she was diagnosing both per symptoms: the JAK2 diagnosis and consultation with a panel of hematologists that had reviewed my results. I have never questioned this, and have assumed that I have both. I'll ask her to explain at our next visit in May. I've noticed that most people participating in this forum are from the UK, and, through a little research, I've also found that treatment is dramatically different. Here in the U.S. it is driven by the insurance companies; what they will and won't pay for. Interferon is only prescribed if the disease is at an advanced stage and Ruxolitinib (Jakafi) is rarely prescribed. I, too, work full-time, but retiring in one year and looking forward to having all of my time to do what I want and to spend more time with family. Regards!

[Susana7]

Yes, we have a National Health Service in the UK that provides free treatment for all, paid for by taxes. It is under huge pressure at the moment, lacking in funds and short on staff, and quality of treatment can depend on where you live - but I am a great believer in such a system and grateful for it everyday. If you are on Facebook, there are several very active FB patient groups - for ET, PV, MF and interferon users - where the majority of members are from the US. Many in those groups have had success in getting Pegasys approved by their insurance companies, with support from their doctors, even if they were refused initially. So worth discussing with your haemo. All the best to you, Susana x

[bmboulanger in reply to Susana7]

Hi Susana! I saw my hematologist today and asked her to explain to me which MPN I have, PV or ET after reading your initial reply to my post. She was able to clarify better for me, and I'm so glad you wrote that so that I could get a better explanation from her. She has a very thick accent, and I always struggle to fully grasp what she is saying to me, so today we went through it again thoroughly. Thank you for your comment which initiated today's explanation!

She said that my BMB confirmed both the JAK2 and ET, but that because I have consistently high RBC, she and her colleagues see it as an 'overlapping' of MPNs, though only ET is conclusive, and given the new guidelines by the WHO.

Hydroxyurea has worked great to bring my platelets down, but has not, as of yet, been able to get my RBC/HCT below 47. She would like to see it at 45 or lower. She, today, increased my dose of Hydroxy to 500 mg, 1 x daily in hopes of lowering the RBC and keeping the need for phlebotomy to a minimum as I don't seem to tolerate them well.

It has been five months said I had a phlebotomy, and these past couple of months have been quite profound in how well I've been feeling, I believe partly because of that. I believe it may well be everything else that I'm throwing at my health (vegan diet for cholesterol and weight management, many supplements including mushroom supplements for immune support, high doses of Krill oil prescribed by my cardiologist, better sleep, consistent exercise etc.) or that the medication has normalized my blood, but something is working, so I'll keep it all up!

Thank you, again for your input!

Regards,

Barbara

[Susana7]

Dear Barbara, delighted to know you are feeling better and glad my post was helpful and you got some clarity on your diagnosis! Indeed, my haemos also talk about diseases overlap, they are on a continuous spectrum.

I only ever had one phlebotomy. They raise platelets so not ideal if both platelets and red cells are elevated. Hopefully the Hydroxyrea will control your counts in the future, without the need for phlebotomies. If not, there are alternatives: you could ask to try Pegasys interferon - it has worked wonders for me and keeps my blood normal, currently with no side effects.

And really great that you also made other lifestyles changes to improve your health - that is so important! I All the best to you, Susana xxx