@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.
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.
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!!
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
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)
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
@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.
@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.
Hi Sue I’m doing ok, tired lol. No, no sign of a letter. I struggled to get through to my clinic, then they only had answerphones. One of which states that the secretary works Monday to Thursday. Guess which day I phoned?!
I have now left messages on 2 answer phones so should hear next week
Oh that must have been frustrating @Olive21 Olive!? Really glad you’re being persistent in trying to get in touch with them - fingers crossed you hear back very soon!
Oh @Olive21, what a hassle you are having, since shielding I have realised that sometimes I have really had to be persistent, please let us know if you get a response to your messages or you don’t. We await, take care.
Hi Olive, contact your mp, I had the same problem, spoke to my mp and she was willing to help, finally spoke to one of doctors in practice, he checked it out and came back to say I should have been on the list, I ha e been fighting for this since beginning. Olive hope it all gets sorted for you, keep safe xxx
Thank you so much @ladicaz for your advice to Olive! It’s so good to hear that contacting your MP helped you but I’m sorry it was such a long road to finally get a shielding letter. How frustrating I imagine that was for you.
I’m doing ok, tired lol. No, no sign of a letter. I struggled to get through to my clinic, then they only had answerphones. One of which states that the secretary works Monday to Thursday. Guess which day I phoned?!