Corona Virus Confusion

[Ijbefc]

Hello, I am 51 and have polycythaemia vera, treated with hydroxy and aspirin. After weeks of trying I have received a letter from my haematologist stating that I am at no more at risk from the corona virus than people who dont have my condition and that I only need to take the standard precautions. I'm very confused as I thought having a blood cancer and being treated with chemo meant that I should 'shield'. Does anyone have the definitive answer? Thank you.

[Superwoman]

I got my Letter on Saturday, but had been self isolating for the last five weeks anyway, it stated in the letter that I have been identified as being extremely vulnerable, I now need to isolate from the day that I received my letter. I have ET JAK 2 positive, this letter came from my GP’s but it seems as if it is a standard letter from the Government which quite a few of us have had. I would speak with your GP surgery.

Jean

[Ijbefc in reply to Superwoman]

Thanks for the reply. My GP was my first point of contact when I didn't receive a shielding letter, he wrote to the haematologist who sent me the info I stated in my original question. It appears that we are not all getting the same information despite having the same condition.

[Spirit123 in reply to Superwoman]

I got one from nhs and one from hospital

[piggie50]

If you read back through the posts you will see there is lots of confusion. I have PV , taking Hydroxicarbamide and clopidogrel. My haematologist and GP told me the same as you. Then I received a shielding letter from rheumatology as I also take methotrexate for RA. If I didn’t take the drugs for RA, I don’t think I would have received a letter.

Hopefully Professor Harrison will be able to enlighten everyone at the Webinar on Tuesday afternoon. Maz has posted a link to register, I’m hoping it will be very informative.

Best wishes

Judy

[Dazakella2010 in reply to piggie50]

I have received a letter from guys and my gp that states I am classed as “at risk” and I am to shield.

[mark382 in reply to Dazakella2010]

Would you mind telling us what condition you have and what treatment as we all have different conditions and different treatments. I have PV and on aspirin and venesection. Thanks.

[Dazakella2010 in reply to mark382]

Yes of course..... I have ET jac2 + on aspirin and peg.

[mark382 in reply to Dazakella2010]

Thank you for sharing that. I've been looking at all the posts to see if there was a patern to who has and who hasn't received letters. Initially I thought it was due to It being the type of medication, other than aspirin, but some pop up with being only on aspirin. As you've said in other posts the government guidelines are blood cancer irrespective of treatment or stage. The WHO classes MPNs as a blood cancer and if I read the medical guidance correctly all conditions are coded, so you would think it would pickup on codes, assuming we have been coded correctly. Let's see if we are any wiser after Tuesday webinar, at least we are looking at one of the world's experts on the subject. Keep safe.

[Spirit123]

I received the letter from the government. Says not to leave the house. Says if employed the letter is sufficient for employers. Stay at home. I have ET and bronchiectasis.

[MCW22]

Have you self registered on the government website? If not then I suggest you do so. I kept registering every week for over a month because I too had been fobbed off by gp and consultant. It finally paid off. Without the government recognising you as vulnerable and passing your details to supermarkets you cannot get delivery slots. I am now able to buy groceries online and not have to risk going out. Pv is blood cancer for sure and is one of the criteria for being classed vulnerable. Keep pushing, don't just sit back and accept what you've been told when you know it's wrong.

Carol

[nodmeister in reply to MCW22]

I've just registered for the 8th time but told a few porkies to try and get a response. I took am sick to death of the lack of consistency with advice and instruction. It's exhausting, pass me another g&t🤣

[nodmeister in reply to nodmeister]

Don't know 'too' turned to know!!!!!!

[mark382 in reply to MCW22]

Unfortunately you can only register if you live in England.

[Hat3]

I am 57, have ET and on hydroxy and aspirin. I received a letter last week from the haematology department I attend saying I was vulnerable and should stay at home.

[tracey13]

My husband has post PV MF he's on ruxolitanib. His consultant said his bloods are all in range and there's no need to be shielding just stay safe and it's fine to go out for a walk.

He's not on the shielded list at our doctors but he's on the vunerable list.

We just following government guidelines .

Tracey

[Joerp]

I have had a letter from guys but but one from government. Speaking to my consultant at my local hospital and one at guys both agree that, although technically I’m under the umbrella of Blood cancer and cheamo, when looking at my figures (white cell count, age etc, I’m in a good place and should consider myself at the same risk as most people. So be sensible but not lock your self indoors. I’m going for bike rides and stopping in shops (being strict at 2M distance).

I think if you talk or get advice from your personal consultant it’s probably more accurate than a blanket email because you are on a list. They can look at your individual situation and make a judgement with you if you want and need to isolate or if you may not have to. If people can isolate (and can get work done and food) and want to because they are concerned then, letter or not, they can but I don’t think there is a hat that fits all of us and it seems some consultants are actually looking at individual cases.

[mark382 in reply to Joerp]

I haven't had a letter and would prefer not to have to shield for 12 weeks as it could cause problems as my wife has severe mobility issues and is over 70. At the moment I only take the dog out and keep away from people. Go shopping once week to local Co-op, which is well organised and people keep their distance. If I do get a letter and shield for 12 weeks, so be it. Hopefully Wednesday (believe it's changed from Tuesday) will give a bit more guidance.

[Palace53]

I have got the same as you but with budd chiari asked gp and haemo both were not sure about the risk but on Saturday got a letter to say I am I at risk group

[Loobylou72]

I have had three letters. two from different hospitals I attend and one from GP all telling me I am at high risk. I spoke to my haematologist who is a specialist in Jak-2 conditions to ensure it was correct. I've got Budd Chiarri, ET Jak-2 and had a huge DVT in my left leg. I'm taking Aspirin, Furosemide, Interferon and Warfarin. I just changed to Interferon recently after starting on Hydroxy. Having blood tests every week as Warfarin unstable after having to come off it for bone marrow biopsy. That's fun too!! I too hope we get some answers on the webinar, I think it's great that Mazcd and the MPN team has arranged this; at least we get direct insight from the specialists on what we should all do. Lou

[ChrisAnnSen]

I enquired 5 weeks ago of my haematologist and today was rung by her secretary to say that yes I am vulnerable. She told me to go on line to register for a letter. Didn't tell me what website or whether I was just vulnerable or very vulnerable (I hadn't realised that there were two levels). I eventually located the website and registered, it didn't say a lot except not to leave the house but seemed to indicate that it was up to me to decide which level of vulnerability I was. Not very satisfactory to say the least. Should I even receive the 'letter' and it says that I have to stay at home for 12 weeks from the date of receipt I shall be very peeved as I've already been restricting my movements for 6 weeks.

I've registered for the MPN Webinar on 29th April in the hope that we will really find out what we need to know.

I am 75 years old and have ET +Jak2 positive - on 12 Hydroxycarbamide a week plus aspirin and feel fine!

[Susana7]

I have PV and am on Pegasys but have not got an official shielding letter. I did get a generic letter from Guys Hospital with CoVID-19 advice for MPN patients but it was not a shielding letter. I have sent in a question for clarification on this point to the Leukemia Care MPN webinar on Wed: do we all need to shield or is it case specific?

[piggie50 in reply to Susana7]

Hi Susana7

Strange that you have not received a shielding letter from Guys, yet Dazakella2010 has, this just goes to show that there is no blanket decision on shielding. It makes sense to me that your Heamatologist, wherever they may be, has access to your blood counts and can advise. I have also sent the question to Leukemia Care for the webinar. Hopefully we will get an explanation.

Stay safe

Judy

[Susana7 in reply to piggie50]

Hi Judy, there does appear to be inconsistency in practices. At the webinar I am hoping for a clear explanation of whether we should all be getting letters or whether it is case specific. Part of me wants the shielding letter as a recognition that I have a serious condition, while part of me does not want to have to shield as I am doing well with my condition! In any case, I have been self-isolating since mid March, and working from home, just in case. Maybe see you at the webinar! Susana x

[piggie50 in reply to Susana7]

Gosh! I hope you don’t see me, I’ve not put any make up on for 8 weeks! 😆

[Susana7 in reply to piggie50]

😂😂😂

[Johnsb]

I live in the USA and Colorado more specifically. I track the deaths in our state and the risk seems to be more age related. 60 to 70 is about 11% of our deaths, 70 to 80 is 25% and over 80 is 51%. So it seems that your age is the biggest risk factor at least in Colorado. Asthma and heart disease seem to be the next biggest factors in who dies. Hope this helps!