Letter from Sajid Javid

[RogerPinner]

The government has decided that shielding is unnecessary, but in a new letter (27/09/21) have kindly invited me to look after myself. I hope I'm not being political Newdawn, but I fail to understand the logic of recommending that we have a third jab when they are aware that many of us will get little or no protection from the vaccines, whilst at the same time relaxing pretty well all the safety measures like mask wearing, social distancing, home-working etc for the general population which would offer us some real protection.

In addition the letter is purportedly written by the Rt Hon S J, no more the friendly 'Matt', I'd become so used to.

Hey-Ho. Roger

[Cheshire2016]

We received the same letter by email - on the same day my husband tested positive for covid.,He’s nearly 1 post post FCR, and had his 3rd vaccination 8 days prior to the test. Fingers crossed that it’s only a mild case. It’s going to be a very anxious 10 days.

[Fran57 in reply to Cheshire2016]

Bless you. I pray he will be better soon…. such a worry for you… that third vaccine may make all the difference 🤞🏻

Yes, Paul had the same email yesterday, Roger.

I like the way it starts by saying that Paul was”previously identified as clinically extremely vulnerable “. … and he’s not now?? But, it’s okay, because he “ should think about extra precautions “ and “ might want to think about extra things you can do to keep yourself safe”…. really? Oh, such good advice! I don’t know why we didn’t think of that 🤦‍♀️

He is waiting to go into hospital for his third Venetoclax ramp up tomorrow. He had his third covid vaccine yesterday and had a headache and was really hot all night…. I’m hoping that’s because the vaccine was working, and not a side effect of the Venetoclax!

I’m not sure there much more he can do “ to keep himself safe”

Fran 😷

[RogerPinner in reply to Fran57]

Fran see my reply to Dr Koffman,Brian, I think you are assuming that Paul has covid (which is unlikely).

In the UK Ronapreve is not approved as a prophylactic. Before you can be treated with it you have to catch Covid, have a PCR test to confirm it, get yourself admitted to hospital, and pass the no-antibodies test; and if you can't do that within about 4 days max of catching the virus, the mab is probably going to be ineffective. It's not like the US.

Roger

[bkoffman CLL CURE Hero in reply to RogerPinner]

I am willing to be corrected, but I believe that it is approved for prophylaxis both pre and post exposure, but is just not available so it's moot.

[RogerPinner in reply to bkoffman]

Brian , I hope you are right but that's not my understanding. However, without wishing to be political, it seems that a number of messages from the UK Govt. relating to covid are not as clear as they might be.

Roger

[Hidden in reply to Fran57]

Brilliant irony. They care more about money than lives he is an ex exchequer.Keep yourself safe when the bulk of the population following HMG freedom advice are inadvertantly doing their best to infect you.

[bkoffman CLL CURE Hero in reply to Cheshire2016]

Can he get Regen-Cov . It's authorized in the UK but in short supply. Early use really helps.

[RogerPinner in reply to bkoffman]

Brian, (copy Fran)I think you are assuming that Paul has covid (which is unlikely).

In the UK Ronapreve is not approved as a prophylactic. Before you can be treated with it you have to catch Covid, have a PCR test to confirm it, get yourself admitted to hospital, and pass the no-antibodies test; and if you can't do that within about 4 days max of catching the virus, the mab is probably going to be ineffective. It's not like the US.

Roger

[Hidden in reply to RogerPinner]

Facts and knowledge are very useful.

[Annie1920]

I do so agree

[Pageboy]

Glad you got to the end of it! It was so long, poorly written and pointless, I gave up half way through 😄

[Jacksc06 in reply to Pageboy]

Agreed. It smacked of "Tell me something i don't know".

[Hidden in reply to Jacksc06]

Yes there was nothing in the letter that was new or assisted me at all.

[Harvist]

Got the email letter yesterday. Very poorly written as info, essentially legalese like those mobile phone agreements that go on for pages and nobody ever reads.

[flyhigher in reply to Harvist]

This the crux quote:

"The specialist involved [in your treatment] should advise on whether the patient fulfils the eligibility criteria and on the timing of any third primary dose. In general, vaccines administered during periods of minimum immunosuppression (where possible) are more likely to generate better immune responses. The third primary dose should ideally be given at least 8 weeks after the second dose, with special attention paid to current or planned immunosuppressive therapies guided by the following principles:

1. where possible, the third primary dose should be delayed until 2 weeks after the period of immunosuppression, in addition to the time period for clearance of the therapeutic agent

2. if not possible, consideration should be given to vaccination during a treatment ‘holiday’ or at a nadir of immunosuppression between doses of treatment"

Pretty clear to me. Achieving "a nadir of immunosuppression" is the problematic bit I would say.

[RogerPinner in reply to flyhigher]

It is clear that whoever wrote the letter either doesn't understand our disease and treatments, or doesn't want to.

I had my third jab 4 days after a necessary rituximab infusion (the first of 6 over the coming months) which almost certainly means the vaccine won't have had any effect. Alternatively I could have delayed the infusion for about a year and let the CLL run riot.

I understand that the country can't stop to protect us, but our problems could be given a bit more consideration without too much general adverse effect.

Roger

[Jacksc06 in reply to RogerPinner]

Yes the country can't stop but as we have "Put into the system" for many years it would be nice to be given a decent chance at survival - Monoclonal antibody's.

[G1llHa1n]

Instead of the frequently used 'as much use as a chocolate teapot', I'm quite liking the one on the ad where the phrase is ' as much use as a waterproof teabag'.

It's frightening how little concern for actual people is shown - it's all now dumped on the patients - and their specialists. At least I've got one - I understand that some CLLers haven't.

It's not surprising people feel abandoned.

[bkoffman CLL CURE Hero in reply to G1llHa1n]

Chocolate teapot sounds delish. And think of all the flavonoids one would get spooning up the mess.

[Loza73]

Very long email and time that I can never get back!!

[Hidden]

I completely agree. I was appalled at the content and tone of the letter. It would appear we are on our own and HMG no longer cares, if it ever did. It reminded me of the care and safety curtain they did not provide to care homes.

[Jacksc06 in reply to Hidden]

Abandoned forsaken and forgotten comes to mind.

[Hidden in reply to Jacksc06]

Yep, your words describe the letter and their morals in a nutshell. They never cared for or wished to save lives from the very start of this deadly epidemic. Only interested in spreading rather than preventing.

[Jacksc06 in reply to Hidden]

Herd immunity whatever the (Human) cost.

[Hidden in reply to Jacksc06]

That was the initial policy of this Brexit HMG and it still is bar 3 or is it 4 lockdowns.£38bn wasted/faffed up the wall of a not fit for purpose T & T.

[AnneHill]

I have reread that uncaring letter and there is one part that is interesting.It says they will be expecting treatments in the next few months. It says to make sure we enter our nhs no and postcode if we are being tested. That way they can be matched to our records and the nhs can contact me if I would benefit from a treatment.

I hoped that meant monoclonal antibodies or am I being too optimistic?

My consultant has said to ring the 24 hour helpline at the hospital. That goes through to oncology.

I just hope I dont get it. We have sold tickets that we bought ages ago and we have more things booked. I will have to make a decision about those nearer the time but concerts will have a lot of people close together and I cant risk that. I am hoping the 3rd jab will produce antibodies. I havent been tested but will after another jab. Anne uk

[Hidden in reply to AnneHill]

It could be used to triage you out treatment.

[Newdawn Administrator]

I haven’t received it. However will I manage without this sage guidance?! 😳

Newdawn

[mrsjsmith in reply to Newdawn]

You haven’t missed much ! I think I might have deleted it 🤔Colette x

[Hidden in reply to Newdawn]

You are becoming more political. Perhaps you will restore my comment you removed.

[Newdawn Administrator in reply to Hidden]

I see my comment as a light hearted reference to public health advice sent by the Government and have made no reference to individuals, personalities or political ideology. If I’d used this as an opportunity to insult the sender, his political leanings and made disparaging political comparisons then I’d personally report myself to my fellow Admins! It’s been made clear over and over that there’s no issue about discussing the way our health care is impacted by the prevailing political systems. It’s abuse and name calling which causes division that is contrary to the posting guidelines.

Newdawn

[JerrysGirl3]

just read this and I agree. I actually just answered a survey by one of my health care networks about masking or not. I answered YES to every question about whether doctors and health care professionals should wear masks, with the added comment I think everyone should still be masking. It will be too late when this whole debacle starts again 😳🙁