MPN's - living with

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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@Wraggan1 Sounds like flexible working is key for many, especially when you’re living with a chronic condition like an MPN. Many people I speak to through our support services don’t realise they can apply for prescription exemptions, I think this is partly due to the relative rarity of the condition, and GP’s may not recognise its classification as a cancer.

If anyone hasn’t done so already, you can ask your GP or haematologist for a FP92A form, as you
“…are having treatment for cancer, the effects of cancer or the effects of cancer treatment" as this page from Citizens Advice discusses here.

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Hello all. There is a survey ongoing where we would love to get insights from patients including those with an MPN - you can find it here http://www.myonlinesurvey.co.uk/BW19WAW1/ and is an opportunity to share your thoughts and feelings around your diagnosis and the level of emotional & practical support you’ve received (or not received) since.

Please help us make your voice heard.

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I’m very confused!
I was diagnosed with ET about 4 years ago with JAK2 positive. I’m only taking aspirin daily.
I was on monthly appointments, then 3 monthly, 6 monthly, the last 2 years, once a year
I have had blood tests in between for other things.
I wasn’t told what ET really was and only found out , a year ago, when I needed a consultant’s letter to provide evidence I was under the hospital.
I researched platelets numbers and wasn’t concerned and still not as they seem within the safe range.
I’ve just found the website and forums for blood disorders/cancers.
Apart from these can anyone help me understand, with the their stories or circumstances? I was 47 when diagnosed. I have another health condition that has the same symptoms so in a way hit twice…I think! A booklet has been mentioned a Bloodline(?)
Also should I be ‘shielding’? I haven’t had a letter and my GP says not. However the list of vulnerable people on the government list, states ‘any blood cancer. 111 didn’t know.
Sorry for the long story!!

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Hi @Olive21
I too was 47 when I was diagnosed with ET and JAK2 but it came as a result of having a clot in my liver from another rare condition called Budd Chiarri. My platelet count isn’t high but my platelets are sticky so have to get levels down to a low level. I had the additional issue of having a DVT from the top of my hip to my ankle which only flared up after surgery on my liver - my leg doubled in size, not a great look I have to tell you !! I am on warfarin, aspirin, and was on Hydroxy but switched to Interferon last month. I have had three letters to shield and stay at home! MPN Voice has a webinar tomorrow with some specialists to talk about the current pandemic and impact on those with MPNs. You might want to register for that. https://us02web.zoom.us/webinar/register/WN_a5sK4-tDQtW-sRzF9qYlQw

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Or watch it live from here at 3pm as the Zoom has a limit on numbers.
https://www.facebook.com/LeukaemiaCare/
](https://www.facebook.com/LeukaemiaCare/?cft[0]=AZV3J07wvh-Fv4F3WKQZVmDbsYohVMK-ljn-umjoq8MI9MhMj_KwEIfDeYHZu67p9tenbs5KBltEQ2wMATI81fy9pY5PYnRTKrKGg6GPIrlSiMqhUjY6osUaeb6JCe-U8CJQo3F3ShN7UtpKpDBixtK8l9MJmSLlQqJB4m26B1Sq-Q&tn=kK-R)

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Hi @Olive21, thanks for re opening this topic I think it will be really helpful for people living with MPNs! Hopefully others will find this a good space to share their stories around living with MPNs.

In terms of whether you should be shielding, I’d really encourage you to get in touch with a member of your treatment team such as your clinical nurse specialist or consultant, to ask them for clarification around this in terms of your individual circumstances.
There are some uncertainties in the clinical community about whether certain groups of patients are at a higher risk or not, such as people with MPNs. While it’s true that these conditions and treatments don’t normally affect the immune system in a clinically significant way, Coronavirus is a new virus, and we can’t say for sure that these people are definitely not at a higher risk. This is why the NHS does include people with MPNs in the higher risk group.
However, as you know @Olive21, our guidance can only ever be general information and your treating team is best placed to provide information tailored to your individual circumstances due to their understanding of your current health, circumstances and medical history.

@Lou thank you for sharing yours and how you came to be diagnosed, I do hope you’re doing OK. It sounds as though you went through a great deal. Also, thanks so much for sharing the details of the MPN Voice webinar and the link! I do hope the webinar is really useful :slight_smile:

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@Alice_BloodCancerUK there is also a link on the MPN Voice FB page today for a survey around the feelings MPN patients are going through with the pandemic. I just filled it out as I think it’s tough for people to be isolated. Personally, I’m struggling with it because I spent 9 months of last year ill and came into 2020 with a positive attitude. Life deals us some tough cards.

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@Lou thank you so much for letting others on here know about the survey.

I’m so sorry that 2020 so far hasn’t been what you had hoped, it sounds incredibly hard to be going through this period of isolation and uncertainty, after spending so much of last year ill. We’re only a phone call or an email away if you ever just want to chat things through.

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