I have ET and am on Peg and aspirin. My blood counts are well controlled and I'm generally fit and well. I have the flu jab every year - as instructed by my haematologist. I've not yet received a letter or a text, but I did get a phone call from Guys this evening - confirming that my check up in April won't happen. Also organising for my meds to be sent to me and to confirm that I need to follow the shielding guidelines. (Which to be honest I have been doing since last week). The Doctor was clear, according to the government "vulnerable" guidelines: MPNs are a blood cancer and Pegasys is immunotherapy. It's been a huge relief to get full clarity - as there are so many mixed messages out there for us. My experience of the team at Guys has always been totally amazing, and I'm enormously grateful to them especially at this challenging time.
Warm wishes to you all. Stay well.
Lou xx
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Yes I imagine you’ll hear from them some time soon? I think someone else on here had a call yesterday so I guess they’re just working through the list.
That’s strange.... I have ET JAK2+ on aspirin and peg..... I have been shielding since last Wednesday anyway but it would be nice to receive a call too.
It's all very strange. I match these. High risk ET JAK2+ Peg interferon and Clopidogrel. My bloods are presently well balanced. I have an appointment at the Christie on Wednesday 1st. April and phoned to ask if it was still going ahead. I was told that all clinics are continuing unless I'm otherwise informed. P.
That’s very strange.... all appointments are being cancelled and changed to virtual appointments..... it’s not safe and not advised to attend appointments.
Hi I also thought all appointments were being cancelled and called my hospital last week as I had an appointment on Thursday to review wether to start hydroxy. They said they had 3 categories, category 1 stay at home do not come in, category 2 come in for bloods only and get a phone or video call, category 3 come in for bloods and see your consultant. I was in 3. As a lot had been cancelled the waiting room was a lot quieter than usual and I was able to sit apart from other patients.
I’m with Guys my appointment was April 21st. I too have had phone consultation. I’m to have bloods taken at GP. Another phone consultation and meds by courier to follow.
Unless you get your official confirmation that you are in a shielding category, you will not receive the assistance that is part of the official shielding package.
What exactly is that assistance? The only thing I've heard about is priority delivery slots for online grocery shopping. I don't shop online for groceries.
Hi that’s good you now have had good advice and it’s good they will get your meds to you stay safe and hope all this virus will be gone soon best wishes Poppy
Yes clarity is so important, I hope that we can all get more of this in the next few days....
It's the uncertainty that's the worst part of this situation for all of us, not just those of us in the MPN world. I've been so heartened to hear of all the acts of kindness, locally, nationally and even internationally. Wouldn't it be wonderful if one of the consequences of this virus, that does not discriminate, is a legacy of more compassion in the world?
Louise we have met I am Colin. We absailed together. Isolate yourself as much as possible. You are only taking 1 chemotherpay agent . I am taking 2. I was admitted for 24 hours with a severe infection that despite my discharge summary I suspect was early sepsis as blood cultures can not isolate taking an antibiotic for hand celluitis due to hand washing. I had skin damage from hand washing. I was discharged after 24 hours feeling back to normal after 3 units of blood. Please encourage all your contacts to give blood or else we will be sidecased
Fabulous of you to clarify as I was unsure whether to count myself as high risk, ET and taking hydroxy daily. Hope you are able to stay very well and safe at home.
Lovely to have so much company and support for each other. Roll on the firums again, we shall love to meet up with other members of MPN !Take care.
My GP receptionist says that I have to get my Consultant to inform them that I am flagged as high risk!
I asked if they could request the chemist to put us on their delivery list for our prescriptions.
The small chemist shop seemed too crowded even with a limited number of customers waiting for prescriptions.
Anyway, the chemist has a screen at the door now and hands prescriptions out from there. The queue is short and well spaced, and with less traffic about DH can park in the street.
We are managing fine now. We couldn’t get any grocery slots from Sainsbury’s. I sent an e-mail to Asda to inform them that we were on the Public Health England high risk list. They replied with a link to give us early access to the calendar for delivery or click and collect groceries from our nearest store.
We have the phone number for the local volunteers.
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Uncertainty over MPNs re Coronavirus
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