I've seen that others are receiving texts or letters telling them that they are at high risk and to self isolate for 12 weeks. I saw on the TV this morning that anyone with blood cancers should be doing this.
I have PV, JAK 2 positive, currently treated with venesections and low dose aspirin. I haven't been told to self isolate for 12 weeks, is it because my GP surgery is slow in doing this, or should I just follow the same social distancing as everyone else?
The uk government are sending out a text to everyone to stay at home as much as possible. Not sure about other texts or letters but I would err on the side of caution and follow the guidelines which Maz posted. Kindest regards Aime x😻
You will receive a letter or text by next Monday..... mpn have been included in the high risk group
I have pv too, no letter. I am on interferon alpha 2a, enoxoparin, warfarin. My doctor told me to isolate the same amount of time as the lockdown, not the 12 weeks. I csn see why it is so confusing!
Hi I have same PV Jak2 positive on aspirin and venesection and I had a letter today from my consultant haematologist informing me I am in the 12 week isolation high risk group.
I have ET and not every hospital is implementing the same restrictions. I spoke to the Service Manager of my hospital yesterday. The ONLY restrictions in place at my hospital are for people aged 70 and over are to stay in isolation for 12 weeks and/or those patients who have either AML or Leukemia and who are on a much higher toxicity of chemo (not the chemo I am on). This restriction also applies to Patients with primary cancers to self-isolate for 12 weeks.
I have had the same conversation and confirmation from my Haemo and my GP. All three have confirmed NO letters are being sent out from my hospital/GP to any patients with an MPN because they are not considered any higher risk. I am still expected to attend appointments and have my bloods done in the normal way. I have tried to keep up with any articles regarding this (I cannot recall whether it was Bloodwise or on the Government website) but have had that those with MPNs were not necessarily considered a higher risk. Obviously this may have changed and/or been updated over the past few weeks.
On a separate note, we have had to date a total of 7 deaths at my hospital from Covid-19. There are four Covid Wards at my hospital. On Friday 20th March, there were 2 more confirmed cases of Covid-19 in my area, (and 5 suspected cases). I, for one, will not be attending any appointments or getting my bloods done at my hospital regardless of what I have been told. I have been working from home for 2 weeks and will continue to do so for the next 3 months.
As my haemo doesn't think that ET Jak2+ is a cancer, I doubt if I will be receiving an "At high risk letter."
I think we should all be treated the same and not have to rely on the whims of individual doctors.
I'm self isolating none the less and have been doing so for the past 12 days.
Best Wishes To All and Take Care!
You are rights about not being subject to whims. Suggest it might be time for a new hemo-doc. ET has been classified as a cancer by WHO since 2008. The thinking and treatment for all MPNs is evolving and improving. You really deserve a doc who is staying up-to-date regarding your condition.
Here is a list of patient recommended docs with MPN expertise mpnforum.com/list-hem./ .
It does seem hugely variable. I'm PV Jak2+, and also have diabetes and heart diesease - oh and asthma. I spent a few days in hospital in October with pneumonia. I haven't yet had a letter. My work is home based anyway and I have been avoiding contact as much as possible, but I feel really guilty about deciding for myself, especially when funerals come in. I started off being a bit 'keep calm and carry on' but now realise I am much more anxious about being in contact with people - even at 2 metres. A letter would really help me justify to myself and my bosses that I need to be shielded.
The most accurate answer so far seems to run along the lines of "Theoretically people with MPNs are not at intrinsically higher risk unless something has happened to compromise their immune system; however, there are still a lot of unknowns with COVID 19 and we really do not know for sure." Ultimately you have to make a decision based on your own level of risk tolerance. There is not black and white answer here. Some of us are going to self-isolate. Some are going to social distance. Some will do something in-between.
Ultimately, no one can really tell you what to do for sure. Too much is unknown. For myself, I favor being cautious, aware, minimize my risks, and follow protocols to wash hands - don't touch face - maintain 6 feet from others when in public space (avoid public space for the most part). I have cancelled all face-to-face business activity and am on-line only and working from home. I have a relatively indolent JAK2+ PV, NF1, and a few other things but am actually in good health with an intact immune system. I am on a phlebotomy-only tx protocol. My risks are relatively low, but caution is reasonable.
Others among us have different situations. Each has to make the best judgement we can. We all have to do our part to protect ourselves, our families and our communities by how we handle this situation. Minimally - strong social distancing. More if you feel your situation requires it.
All the best to everyone. Stay well!
I’m 65, have PV and have venesections and have taken hydroxicarbamide for 10 years. I emailed my consultant at the Christie and he directed me to the info on Mpnvoice.org.ukwhich basically says it’s unclear whether hydroxicarbamide puts us at more risk .....Ruxolitinib definitely does.
I haven’t received a text from the NHS.
I suggest we’re all sensible and careful. I’m staying inside my own home and garden on this glorious day. To be honest as I don’t work I haven’t really noticed a change except from eating out, going to the cinema and socialising with friends - which I’m now doing via the phone and face time.
If you are still working, how many times have you wished you could have a few weeks at home doing nothing? A paid holiday. Make the most of it and don’t worry.
We have just laid 100 employees off on furlough ( tourism industry) who will be paid 80% of their salaries for sitting around doing nothing or going out to exercise. Come on folks, let’s look on the bright side , again, make the most of this peaceful time in our own homes, and don’t worry. If you stay at home you’ll be safe. You can clean, sort out cupboards, do a bit of decorating, gardening, sit in the garden.....
I just phoned our local food shop, asked them to get together a small order, paid over the phone. My husband drove to the store in the car, remotely opened the boot, order was dropped in boot and home he came!
I realise not all of you are lucky enough to live in a rural area, but we can all support our small shops at this time.
Louise
xx
Outcome after 4 years of weekly Pegasys injections for PV.
PV
I have PV with no symptoms
Haematocrit for those with PV
PV and dreadful itching
