[rebeccaRParticipant]

Hi, Has anyone received a letter to Shield whilst in remission and not on any treatment please? I ask because I believe we are to shield – as opposed to social distance – even tho in remission and not on treatment?

[mashParticipant]

Hello,
I’ve received a letter and text from the government to shield and I’m not on treatment.

I had my stem cell transplant two years ago, in remission (watch and wait) and due to see my consultant in May but don’t know what will happen now.

Hope this helps

Stay safe.

[rebeccaRParticipant]

Thanks, I haven’t received one and was wondering.

[stanley-1960Participant]

Hi Rebecca,

I got a letter from the kidney unit being asked by a specialist kidney doctor who asked me to isolate for At least 12 weeks. I would have thought it would have been from the haematology team as I have never been involved with the renal unit and kidney function has always been good.

Regards,

Stanley

[rebeccaRParticipant]

Thanks…..you couldn’t make some of this stuff up atm! I asked my gp for a shielding letter for work purposes and got a text response that I was not extremely vulnerable as not on treatment and social distancing would suffice …..from the same surgery who badly misdiagnosed me. Was told to wait another week as specialist units are now sending letters out – spoke to haematology who advised they have had nothing to do with it? Always seems like a fight with gps to get anything done. Will try n get a letter next week from them as need one for work.

[johnvParticipant]

i have just ask the question about shielding.. although I have been in remission for 18 years. I have not had any letter or any any form of text, only a general one from Gov..

I think my immune system could still be compromised. Yet all my 3 monthly blood results came back with in normal ranges I am in self isolation, But does this mean 12 weeks I ask.. Probably been forgotten HAHA..

But seriously to all of you be safe..

[rebeccaRParticipant]

I believe you will always be immune compromised as Mm is cancer of the immune system so should shield albeit in remission and no treatment – as per Bloodwise and this website. But hey, more importantly, how fantastic being in remission for 18 years! Did you SCT in that era?

[johnvParticipant]

Hi Rebecca Yes had SCT in 2002. Hickman line in for 6 months then high dose chemo (Cvamp).. Had none of these newer drugs.. Few issues with pain in lower back. BUT still in remission..

I know that immune system is compromised, try telling certain section of power!! because you are in remission and they don’t see blood. Everything is fine.. I wish things were a little clearer on where we stand.. My GP no nothing, I’m just on record of a patient with Myeloma.. I will stay put for now until things improve..

Keep well…

[rebeccaRParticipant]

This website, on the covid hub, states shield even if in remission. I have pointed this out to the Surgery and they said they will defer to the Myeloma Uk advice but……very busy, wait another week in case it comes from a specialist unit and then contact the gp and they will issue a shielding letter…when they get a template from the govt – not yet issued with one – tho they have received copies! always reluctant to take any action. On the plus side you have cheered me up no end with your remission longevity and have it in my to do list to emulate it! (Currently a mere 6+ years since SCT ….but little acorns n all that)

[zsazsaParticipant]

Hello John,

Wow 18 years in remission is absolutely fantastic and gives us hope. Would you have any advice on how beat MM for so long and to stay healthy and achieve the best result/outcome. Any diet you could recommend.

Many thanks

• This reply was modified 4 years, 6 months ago by  zsazsa.

[susantrParticipant]

Dear RebeccaR

I had to contact my GP because I had not received the shielding letter. You have a diagnosis of Myeloma, therefore you should be shielded. NHS England are quite firm on that. I received the letter 3-4 days after contacting my GP and today I was contacted by NHS England to ensure I had adequate support whilst being shielded. Hope this helps.

[mark-j-underwoodParticipant]

I’m 2 years 8 months post 2nd STC and received my shielding letter very quickly. I’ve got my wife shielded with me at my insistence since she was working, and give the transmission phase can be non symptomatic she could easily catch it and pass it to me without being aware she event had it. Given Myeloma patients are very prone to chest infections and pneumonia, my opinion is that anyone living with Myeloma should be living in a totally shielded household.

[noeyedeerParticipant]

I completely agree with Mark, my husband is 21 months post sct and is shielding. I work p/time and decided to shield with him, I used annual leave for the first 2 weeks of lockdown and have been thankfully furloughed since. Not sure what I’ll do when furlough ends, if it’s still recommended to shield – which I can’t see happening in the foreseeable future. Stay safe all.

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