Government advice about sheilding - SHARE Metastatic ...

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Government advice about sheilding

Beryl71
Beryl71

I'm in uk. I've just had a letter saying I no longer need to shield on the advice of gp or consultant. Now if it's the GP who completely missed my symptoms last year I don't trust the decision, so plan to ask consultant next week when I have s phone appointment. Given I was told to be very careful whilst on Ibrance and letrozole and have an emergency card with a list of symptoms for which I have to go straight to A&E, I'm slightly puzzled . Am not going to change anything yet.

Had anyone else had a letter yet?

47 Replies
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Hi Beryl

I’m in the UK and haven’t had any letters at all regarding shielding or anything else...I’ve just used my own common sense and kept away from shops or crowded places...at the time of the lockdown I was on Afinitor (similar to Ibrance) and exemastane

I go out all the time but I’m sensible...I mainly go to see/ride my horse and keep out of the way of people

I think you can be too obsessive over this and then start losing your confidence about going out

Barb xx

Beryl71
Beryl71
in reply to Barbteeth

Yes I can understand that. It has been a such a contrast to my life before and of course the diagnosis has been a life changer. But when the nurse gave me instructions when I started my treatment, I just burst into tears, she made it all sound so scary, but so far I've felt so much better, so am keen to regain some freedom but with care. My letter said I was very vulnerable, and now it says I'm not very vulnerable, but I think it relates to government help and actually I haven't had any of that because I had my own support system. I think there's a confusion between the economics and the health and well being with the government messages,

Barbteeth
Barbteeth
in reply to Beryl71

I’m lucky as my husband does all the shopping so I don’t have the burden of that...thank goodness as I totally hate it anyway

I even have a ‘blue light’ card so I could have priority in queues and online shopping but I’ve never even needed to use it

I do find the government rules and regulations so transient especially with my dental practice...they keep changing everything on a daily basis...bonkers...treat us like idiots

Good luck with rejoining the world...it’s pretty awful at the moment though!

Barb xx

Beryl71
Beryl71
in reply to Barbteeth

I know , I had a little walk and sat in the woods and painted with a friend the other day. It was such a treat. I love my garden but it's good to widen my horizons a little. I used to be a world traveller before all this, the cancer and the virus!

Barbteeth
Barbteeth
in reply to Beryl71

Oh how lovely...you’re so lucky being able to paint...I love art but I’m afraid I’m totally useless myself...enjoy!

Barb xx

I was diagnosed metatastic during lockdown and I've had a few letters regarding shielding, I got one a few days ago stating from August 1st I can return to work if it has all precautions in place. I'm currently on chemo which wont end til mid August and I'm remaining on herceptin and perjeta infusions. I certainly won't be returning to work any time soon, currently furloughed.

I'm using my own judgement. During 2015 when I first had chemo I was hospitalised with neutropenic sepsis and that was without being in the midst of a pandemic.

Beryl71
Beryl71
in reply to cazlav

Thank you, take care.

13plus
13plus
in reply to cazlav

Wise decision to follow your own gut.

I wouldn’t trust mine either. I was completely misdiagnosed in 2018 and went 9months in agony only to be told after a second opinion I had Stage 4 Breast Cancer in my bones and lungs. Unreal. I would do as you are and the Oncologist.

Best wishes

Same here, I said I felt like I'd been kicked in the chest and had a cough. They said silent reflux. 9 months later an xray showed breast cancer in my lungs and breast bones, plus had moved to hip and lower back. I'd had ghastly hip pain and blamed it on my pilates class!

My pain was in the ribs. Both sides. I’d had breast Cancer in 2013. It was grade 1 so very small. I went to the GP here and she said it was Costocondritis. A complaint teenagers get. I was 67. She said keep taking Ibuprofen. I went to her 3 times. She still said it would get better. Meanwhile I hurt my ankle and went for physio. I asked if he could help,with my rib pain. He couldn’t because I hadn’t been referred for that. During that day he called me to see if I’d had any blood tests due to my previous Cancer. I said no. He immediately called another GP who was excellent and sent me for tests straight away. I had two broken ribs from the Cancer, numerous mets in my pelvis, mets in my spine and, shoulder blades and head. It’s also in my lungs. I was beside myself with anger. I’ve been on Letrozole, Denosumab and Ibrance for 16 months now. What we have to do to get peace of mind aye? I’ve also had a letter. Take care and best wishes

Cheryl.

You take care. My gp said costococondritus at the same time as telling me she was worried about what showed up in my lungs on xray. But for me it had been 26 years since my original tumour. All I remember after my scan were the words widespread and scattered.

Oh dear, and we have to trust them.

Best wishes and keep in touch

Cheryl

Ugh....I was told it was in my head and that I needed to be on antidepressants and antianxiety meds and to see a psychiatrist.

Beryl71
Beryl71
in reply to Violets_mom

I hope you took it up with them when you got your diagnosis. Take care.

They are the professionals. Why does this happen with diagnosis. Sometimes think we are treated like guinea pigs. A simple blood test tells all.

Hi Beryl,

I didn't get a letter telling me to shield or that I was in the vulnerable category. I just got the standard letter from the Prime Minister that I think everyone else received outlining the precautions we all had to take to stay safe and so on. If you are unsure of what to do, I would contact your oncology nurses or oncologist and ask if it's safe for you to venture out. I can understand why you would mistrust your GP.

Take care,

Sophie

I have received a letter for those ‘shielding’ from ‘Department of Health and Social Care’ , dated 22nd June , explaining that the government’s rules for those of us ‘shielding’ is changing , in two stages , on 6th July , and then on 1st August , and it sets out the new rules and any help offered . Is this the same letter you have received? x

No. My letter originally told me to shield until end of June because I was at risk. This letter tells me I am no longer deemed at risk of severe illness and therefore I am not covered by the programme any longer!

13plus
13plus
in reply to Beryl71

This sounds wrong to me. If your are on iBrance you remain high risk but you need to discuss this with your oncologist. If it is important in terms of access to other resources perhaps they can correct the governments files on your behalf!

HI Beryl, I am on same drugs as you, I am in UK and have had letter to say I have to shield until the end of July. I can go out and meet people outside from 6th July but no shops etc until 1st August.

Yes that sounds like the same letter I have received this week , and I too am on Ibrance , but the main thing is to be cautious and not go to busy places x

Thanks , looks like there's a bit of variation in advice and we'd best be a bit cautious. I won't be running off to the beach yet.!

Same as my letter. Makes us all confused

I had the letter re 6th July and doing more on 1st August but I will be doing what I feel is safe for me. I walk the dog and have done since lockdown started but only go places where we see virtually no one and will carry that on, I’m going to form my own little bubble of friends to see who I know will keep me safe. My one exception is my granddaughter, I have not seen her since March but will see her in July, she’s 13 , we will met outside for walks , picnics etc( can’t wait first picnic date is 7th July it better not rain!). Girls go with what you feel is safe for you all our circumstances are a bit different 😀😀

Hi there, I've had the letters about shielding and then the 'pausing' of shielding in Aug - just to add I asked onc if I should think of self as 'extremely clinically vulnerable' as stated on the letters (I'm on Palbo, Letrozole and Denosumab) and she said 'not really'! As neutrophils are first line of defense against bacterial infection, they're not employed in body's response to viruses - that's the lymphocytes. She was surprised I hadn't been told all this before (it's a big hospital, never seen her before). You live and learn! X

13plus
13plus
in reply to GollyG

Wow! That’s interesting. I’ve never heard of that either

Hi I’m in the U.K. also just received letter saying I can go bk to work August 1st if safety measures are in place

I live in Northern Ireland and I'm on the same medication as you and I've been told to to shield for until August but recently they have said that I've been alowed out but not to meet people

If on chemo (IBRANCE is a type of) you would have needed to shield or any other in Immuno-suppressing drugs shielding would have be really necessary. If not on those drugs, that would depend on age and other medical conditions. This is my interpretation anyway!

Beryl71
Beryl71
in reply to MCBS

Yes am on Ibrance. Thanks.

I’m in the US. Not only don’t we get letters about shielding, we have a puppet President who refuses to mask up, ignores science and only cares about his polling numbers. Dismal situation....the UK will be wise not to let us in. (Though it would be lovely to travel there someday and meet you all!)

Beryl71
Beryl71
in reply to MacroMom

We have our problems too! But I understand what you're saying! Take care.

hdhonda
hdhonda
in reply to MacroMom

Amen. Blessings, Hannah

Hi

Just received the letter a few days ago. Don't trust government decision, given all the botch-ups, and the agony I'm in from the extreme sude effects of Zoladex & Letroxole. Ibrance also tends to lower my white blood count considerably, thus making it easier to catch anythi g that's out thete. I have go e out to hospital with mask & gloves. My GP is still advising use of these to me. Best be safe than sorry. I also took a walk usi g a mask 😁 At least nobody can see my sweaty face when the hot flashes strike.

Stay safe, Stay alive. Take care.

Cherie

Beryl71
Beryl71
in reply to doomkiller

Poor you, take care.

Ultimately it is our lives - my oncologist has take me off IBRANCE because of the shutdown. He will review the position at the end of July. I have been going out throughout shutdown to a limited number of shops. Will keep the same approach for the foreseeable future.

I’m in Canada and a lot of restrictions have been lifted but wearing a mask is required to access some places. Our health minister recommends wearing a mask whenever you are in public.

Beryl71
Beryl71
in reply to Sarcie

Yes my oncologist told me that. I do that when I go to the hospital for my blood test and gloves to deal with the parking machine, but not if I walk in the fresh air where there are few people and I can keep my distance. Masks make my glasses steam up!

Sarcie
Sarcie
in reply to Beryl71

They make my glasses steam up also. So frustrating.

Beryl71
Beryl71
in reply to Sarcie

I have been given a little stick on metal strip you can attach to the back and shape over your nose. It improves things!

Sarcie
Sarcie
in reply to Beryl71

That’s what I need.

girlsptz
girlsptz
in reply to Sarcie

Sarah you can get the stick-able ones on Amazon. I also wear glasses so I understand the fog up business.

Sandra

Sarcie
Sarcie
in reply to girlsptz

I’m going to have to check that out. Thanks

13plus
13plus
in reply to girlsptz

I’m learning quite a few things on this one thread! ❤️

Hi there! I'm in England & am currently on Ibrance, Fulvestrant (Faslodex) & Denosumab - mets to pleura, brain lining, spine & ribs. I'm also currently a midwife on labour ward with 3 kids 16, 15 & 9.

I have had letters - most recent saying shielding 'paused' as of 1st August. I've been shielding at home since March & my husband & children too. My husband works from home anyway, luckily! We've recently made a safe 'bubble' with my Dad & step mum (who have only been out to walk their dog). We've all been going out for walks & I've been to hospital for bloods/scans/radiotherapy, etc.. but that's all. My work are not keen for me to come back, as so frontline in my job, & my consultant agrees - due to the Palbo being a protein kinase inhibitor & my lungs being messed up due to multiple drains & surgery & pneumonia last year caused by my cancer. Current plan is to return to work at the beginning of August. It may change, who knows! 🤷‍♀️ However, my kids need to get back to school & see their friends for their own mental health, so I guess I'll have to take my chances soon enough! Xxx.

That's tough. Good luck and take care.

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