MPN's - living with

Hello all!

Thought I’d create a thread for those living with an MPN (myeloproliferative neoplasm) such as PV, ET or MF. What has your experience as a chronic blood cancer patient been like? What has helped you cope with ongoing treatment?

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This is a great idea as this group of cancers are very rare and I’m sure there will be patients who are feeling quite isolated. I have been educating myself on these disorders which I’d never heard of and it would be great if someone with real life experience could tell us their experiences. Best wishes alfie

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I was diagnosed with ET in 2013 at age 69 as a result of blood tests prompted by a severe attack of vertigo. Started on 500mg of Hydroxycarbamide (Hydroxyurea if you are US-based or a student of chemistry!) daily, plus baby aspirin, then went up to 1000mg of HC and have stayed there ever since. The CALR test which came in shortly after I was diagnosed showed positive, with the deletion mutation. Platelet levels have continued to hover around the 550-650 level, which is above the recommendations, but the (excellent) folk in Aberdeen Royal Infirmary Haematology reckon that pushing up the HC dose would depress haemoglobin further than desirable. And that’s about it! I’ve been one of the lucky ones; the cancer has been fully controlled by the HC, have had no serious side-effects (apart from brittle nails - if anyone knows an answer to this, please tell me!) and I used to say my lifestyle was about normal for someone in their 50s, apart from the 7 at the beginning of each birthday. But it’s got more complex in the last couple of years with separate diagnosis of advanced prostate cancer. Was offered radiotherapy for this, but decided the risk of converting my ET into AML or more rapid development of myelofibrosis (already a recognised high risk with the CALR deletion) was too high. So am on two forms of hormone antagonist, which control symptoms completely, but are known to lose effectiveness over time. Have appointment with Urology next week, so will learn more then.
As I said at the outset, my MPN has been very gentle and responded well to treatment. From contacts with others, this is all too often not the case, and too many patients get severe side-effects or poor control with HC. So research is still vital to find other treatments. And, to make a political point (sorry!) we must ensure that any stupid Brexit deal doesn’t disrupt our supplies of the necessary drugs.

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Thank you for opening up an MPN thread :slight_smile:

I am fairly new to my MPN journey, diagnosed last year at the age of 38. I’ve found it quite difficult to fully understand as my diagnosis is ‘myeloproliferative neoplasm unclassified / cellular phase of myelofibrosis’ … and so don’t currently fall within one of the 3 main categories. It’s been tricky to find information relating to this and difficult to know how to explain it to my friends & family. I’m just on watch & wait at the moment, taking a baby aspirin daily :slight_smile:

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Dear Stephanie, welcome to the forum. You do indeed seem to have a very rare variant of your disease based on the available information online that I have seen. However it’s good to hear you are at the watch and wait stage. Has your doctor made any attempt to explain the implications of this disease in the long term ? Or just told you that you will be monitored. From my experience you have to push quite hard for information as there is a tendency amongst haematologists to be reticent in telling you things in fine detail. Hopefully someone in the forum will be able to answer your questions but regardless you will find emotional support here and a listening ear.
Best wishes alfie

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Thanks Alfie
I’ve seen 3 different consultants since being diagnosed and they seem to have varying levels of knowledge about it! The haematologist that I was initially under was quite informative and indicated that it was a very early stage of MF and ran my results through the DIPPS scoring system which came out at intermediate stage 1. Having had different haematologists since Christmas has been difficult with one telling me that the disease was too complicated for me to understand so to stop asking questions! I’ve just moved areas so will be under a new hospital so hoping for a more positive experience :slight_smile:
Thank you

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Dear Stephanie, as someone who has a extremely rare but different disease to you I have to say I am not surprised by this attitude, I have read the very small amount I could find about my condition and don’t feel the doctors can tell me anymore than I already know, maybe that’s the case with you. Haematology seems to be a very complicated area of medicine and the doctors are more like scientists. I think the most important thing for you as you are on watch and wait is to concentrate on your emotional well-being as this will mean your diagnosis will have less impact on your daily life. We have many forum members who are not having active treatment but nevertheless find the monitoring process unsettling so don’t think just because you are not yet symptomatic that your are not worthy of support. Blood cancers take us on a journey down a long and winding road and we shouldn’t travel it alone. Best wishes alfie

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Hi all thanks for opening this thread , I was diagnosed with pv two years ago after a very bumpy ride all seems to be under control with daily dosage of aspirin and venesections ,I have bad veins so usually pass out when having this done when needed I have my bloods checked every three months and if I fly long hall I need to inject myself with fragmin to thin my blood , I do get extremely tired and suffer quite bad with my skin now I do count myself lucky ,but do have days when I feel sorry for myself , any information on these conditions will be really helpful thanks all x

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Dear carol, welcome to the forum. I’m glad to hear you’ve got your disease under control. Fatigue is a much discussed subject here on the forum which seems to effect many blood cancer sufferers. I don’t have pv but I believe it is quite rare and I assume it will require life long monitoring which is a added stress we all familiar with and are here to support you.
Best wishes alfie

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Welcome to the forum @Stephanie! It sounds like you’ve had some challenges with your haematologist and wanting to be informed - never stop asking questions! I hope your move to a different hospital goes well. How are you finding watch & wait?

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Welcome to the forum @Tylerjack, and thank you for sharing a bit about your experience. It sounds like having your venesections can be quite challenging, I hope you’re able to take it easy after you have one. It’s okay and normal to have tough days and days where it feels unfair or too much to cope with, that’s why we created the forum so people could have space to share their worries and concerns. If you have questions or would like to talk about your condition, please don’t hesitate to get in touch with the Bloodwise Support Services, on 0808 2080 888 or via support@bloodwise.org.uk and we would be very happy to support you in any way we can. Dawn

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Thanks Dawn. I’m finding watch & wait a bit strange to be honest. On one hand I am thankful that I don’t require meds but on the other hand slightly frustrated that there’s nothing that can assist (or that I’m eligible for) at this stage to prevent the disease from progressing. I find the monitoring of the disease by my consultant reassuring :grinning:

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Watch & wait can be such a struggle, and a weird place to find ones self in following a blood cancer diagnosis, I am pleased to hear you find your consultants monitoring reassuring :slight_smile: Have work and friends been supportive?

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Yes and no to be fair … I think that it’s been quite difficult for my family & friends to understand so although they are not un-supportive, they don’t really understand it … my work are supportive if I need anything and I’m able to work flexi hours or from home if/when needed so all of that is really helpful. It’s just difficult for people to understand and it’s easy to forget it when there’s no treatment or anything visible taking place (if that makes any sense!) :slight_smile:

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Hi Dawn, I am recently diagnosed with PV JAK 2 positive. I went to the Drs as I had a rash, had my BP taken and started this crazy ride to where I am today. On HU as well as aspirin and BP meds as well. It’s been a struggle, but the booklet from Bloodwise was a great help. Today I took another step and registered here and joined this community. It can be lonely and also hard on family.

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Hi Stephanie. I have only just read your posts and wanted to say - I was diagnosed with MF at the same age - 38! Hopefully it will encourage you to know that was 29 years ago. It was beyond shocking at the time - I was told it was very unusual for someone so far off their 60’s, which meant they didn’t really know what to do with me. There were NO booklets, forums, nothing. I found a very old book in the library and that helped a bit. One doctor later told me to read up to get information and the next book I found told me I had 2 - 3 year life expectancy. Clearly not :slight_smile:. Things have moved on massively since then. I was on hydroxycarbamide for most of that time and tolerated it well. Not any more! After my 2nd leg ulcer I am now off it forever. Having tried anagrelide which seemed to work well until various side effects got in the way and then effectiveness in doubt, I went back on Interferon injections which I took for a few years way back when I was first diagnosed. It has never been ‘watch and wait’ for me because, without drugs, my platelets go dangerously high. I have also had a bad time with anemia lately. I have now just started on ruxolitinib but it is too recent to know if it is helping. Keep reading and asking and listening and sharing, and if a doctor ever tells you again that you shouldn’t ask questions - report him!! Good luck and take care. Best wishes, Marilyn

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Good morning all, I just wanted to draw your attention to this thread, asking for patient experiences of ruxolitinib for polycytheamia vera (PV) to enable us to respond to an appraisal of this medication. We would really value hearing from you, or anyone you know who has been given it.

https://forum.bloodcancer.org.uk/t/ruxolitinib-have-you-received-this-medication/1741/2

Many thanks, Dawn

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Welcome to the forum Anne - we are so pleased you’re here. Hopefully you find it supportive and welcoming, and helpful to talk to others and perhaps feel less alone. So pleased to hear our booklet was helpful. How have you been since your diagnosis?

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Hi Dawn, thanks for the welcome! Got to admit I struggled at first as I knew nothing about these types of cancers. And that word - Cancer is scary! I found my self repeating things to my family to reassure them, but then realised there was no one to reassure me! What made it worse was that the GPs in my local practice didn’t know it was cancer and didn’t know that this qualified me for the prescription exception card. But my employer has been fantastic! But then I work for a major Pharma company :slight_smile: I have a lap top at home and in the office for those days I am to tired to commute.

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@Stephanie It is difficult to make sense of it isn’t, even as the person diagnosed I imagine! Good to hear work have been supportive, was this much of a challenge to set up and discuss with them? People often find being on watch & wait quite tricky, because you look well and go to work and seem normal, but they don’t always know the struggles or how difficult some days can be. Have you moved to your new hospital now? Have they been more supportive?

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