Hi there,I've been recently diagnosed with Essential Thrombothycemia and Polythycemia Vera. I'm also Jak2 positive. I've just had my bonemarrow biopsy and will have those results in a few weeks time. My platelet levels are in the 600 mark and my red blood cell count is around 178.
I have been on transdermal hrt for around 6 months and it's been a game changer in symptoms for me. My consultant says I am low risk so Aspirin and monitoring is all that is needed but as I want to continue my hrt now has put me at high risk. My options as far as he is concerned are come off hrt or stay on it and I'll have to start taking chemotherapy tablets.
Would be really interested in others opinions or similar stories.
Many thanks
Heidi
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YogaRonnie
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No one has a red blood cell count of 178 so I assume that figure is actually 17.8 and refers to hemoglobin. I don't know anything about "transdermal hrt", but I do know Pegasys interferon is a non-chemo option to hydroxyurea. Interferon has this key benefit: youtu.be/W3JJBS645c4
Thanks for your reply. Yes I've probably got that wrong. It says Hb 171, hematocrit 0.52 platelets 672 and a few other things that I've no idea at this moment what they mean. So much to take in 😊. I will have a listen to what you sent me. Thx again.
HRT is an absolute game changer and it’s incredibly important to use it if you need it. I’ve been on patches for a few years and whilst I don’t feel 100% myself I feel so much better. I’ve also been on Hydroxy for years but was on Hydroxy before HRT. I was warned re family history of breast cancer when starting HRT but I had to get help as meno was so ferocious and harming my close relationships. You do what you know is right for you x
I am still on HRT patches years now after full hysterectomy. I was on Hydroxy & HRT but found my sweats came back awful. I am now on Peg Interferon & sweats not as bad. However I feel the drugs for ET do react on the effect of my patches. My HRT has always been approved as ok by MPN & Haemotology 👍
Suggest that you review and clarify your diagnosis when you get your BMB results. ET and PV are two different MPNs. You have either one or the other.
ET = thrombocytosis only.
PV = erythrocytosis. May also include thrombocytosis and/or leukocytosis.
If you are experiencing both erythrocytosis and thrombocytosis then the likely diagnosis would be PV, not ET. This will be confirmed by the BMB as bone marrow morphology is part of the diagnosis. Note that sometimes the differential diagnosis is not clear, resulting in a diagnosis of MPN Unclassified.
Others have already responded to the question about HRT. Suggest that you be sure to review that question with a MPN Specialist. It is very important to consult with a MPN Specialist rather than a regular hematologist on this sort of issue. mpnforum.com/list-hem./
The MPN Specialist can also review all of your treatment options with you. You do not have to take chemo tablets (e.g. hydroxycarbamide) unless you choose to. There are other treatment options such as Pegasys, Besremi, Jakavi, anagrelide, and more. Suggest you look at the risk/benefit profile of all of your choices before making a decision.
Thanks for your reply. My consultant didn't explain it that way. He just said that there was a few different MPN under the umbrella of myeloproliferative disorder and that I can have 1 or 2 of them or even all 3. Saying that I have 2 of them ET and PV.Be nice to get the proper diagnosis in a few weeks.
Wondering if treatment is different depending on which way round it works out to be.
There are actually more than three types of MPNs the Classic MPNs are: Polycythemia Vera (PV), Essential Thrombocythemia (ET), Primary Myelofibrosis (MF), Chronic Myeloid Leukemia (CML), Chronic Neutrophilic Leukemia (CNL), Mastocytosis, Chronic Eosinophilic Leukemia (CEL). mympnteam.com/resources/typ...
Note that these classification do not include MPN Unclassified, prefibrotic myelofibrosis, post Et myelofibrosis, post PV myelofibrosis. It is also possible for one MPN to progress into another. ET can progress into PV or MF. PV can progress into MF as well.
Treatment for ET or PV is different, though there are some common elements. Antiplatelet medication (e.g., aspirin) is usually recommended for both with high-risk ET or PV. Cytoreduction will usually be recommended as well with high-risk cases. (Note high-risk = age > 60). Many of the medications used for ET and PV are the same. What is different is that the target for PV includes controlling erythrocytosis, which is not relevant in ET. The primary treatment goal for PV is HCT<45% for males or 42/43% for females. This is often achieved using venesection as the first-line treatment option.
Hydroxycarbamide and Pegasys are the two most common medications used for cytoreduction. There are also other medications used like Jakavi. Besremi is the most recently approved medication for PV. If you do need cytoreduction for any MPN, be sure to review all of your treatment options with a MPN Specialist.
Hi, I find your GPs opinion quite shocking. HRT of any sort is a very individual choice and as someone who has been diagnosed Et and PV I have never had any issues with being prescribed HRT. I would discuss further with your hospital consultant and then feed back to your doctor, they are probably as confused as you are 😊. It seems you are in the early stages of diagnosis so don't panic. I am sure it will all work out OK.
Hi, Its my haemo consultant that's saying no to the hrt the other way round would be great!! Your right tho it is an invididual choice and I think I'll be better on it than off. See him in 3 weeks time so will go armed with all my info on the advantages. He may even learn a few things 😜. Thx for replying.
i think it is important to see an MPN Specialist if you can. I am 53 just started HRT - Evorel Sequi last year and with support of haematologist and menopause specialist they agreed the specific HRT they deemed safest. It is certainly something I will not becoming off as the benefits are amazing. Sometimes difficult to figure out which symptoms could be peri meno or which could be PV.
Once I was diagnosed in 2020, I looked for an MPN Specialist instead of a regular haematologist as they are more specialized in our disease.
Best of luck to you during these crazy times, we have all been there. Diagnosis is a necessary part of this process and once you wrap your head around the monthly blood tests and the terms you will be fine. I thought many of my MPN issues were all peri menopause related but many were issues with the disease that were similar. Restless legs, sore feet, itchy legs after showering, anxiety and headaches. Many of those issues disappear after taking the aspirin each day. I was diagnosed with ET but had many of the PV symptoms. Once I required a phlebotomy only months later diagnosis it became PV. It has been a learning curve and from searching this site you will find many answers and lots of support.
Surrounding yourself with positive support is very important. Sounds like your family doctor is a keeper. Hope the HRT and the diagnosis help and make you feel like yourself again. ❤️
The overlap between Peri/Menopause and MPN symptoms is frustrating - I officially entered Menopause within a couple of weeks of diagnosis of PMF (I have the menopause to thank for my diagnosis as until then my heavy frequent periods were blamed for my low Hb and higher nucleated red blood cell count) . I did start HRT in the form of gel and progesterone tablets 6 months ago, but didn’t get on with with (possibly, but may have been due to a completely different reason) the progesterone and stopped after less than 3 months. However post PMF diagnosis GP and Haemotologist have discussed and are both supportive of me starting again if I want to - particularly their comments were that the transdermal application was no/low? addition risk of clotting. The video that Maz has posted is worth watching. At the moment my menopause symptoms are now very mild so I’m not yet planning to start again. If it’s made such a big difference for you then it’s definitely worth pursuing to find the right solution and, as others have mentioned, getting some clarity on your diagnosis. Good luck!
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