[docmikeParticipant]

Dear All.
Like many of you, I have been afraid of catching covid and succumbing (recorded as an expected death?). Even despite triple vaccination the protection remains uncertain in terms of both antibody and t cell response .
now at last a gov press release 8/12. from 16/12 we are on a list of high risk patients of patients eligible for either oral molnupravir(LAGEVRIO) or RONApreve 2 monoclonal anti covid antibodies (injections.infusions )after having been assessed .by a clincal expert from the nhs covid medicines delivery unit CMDU.
hopefully a postive pcr and your nhs number /medical history/been on the highest risk list ,will mean they will contact you or advise proactively how to proceed rather than you having to contact them (test and trace????)
( other moderate risk patients are asked to take part in a placebo contolled trial PANORAMIC )
other antivirals txs are been/continue to be assessed for future inclusion . not least ;no treatmnet has been shown to give a 100% protection ;although i think the sooner tx is given the more likely it is to give greater protection.
omicron might favour giving the anti viral ???
wishing you a covid /myeloma free christmas
Michael Ashton frcp

[susieParticipant]

Hi Doc Mike,
Thank you for that info. It’s answered some questions I had.
You have a good Christmas too.
Best Wishes

[mulberryParticipant]

Thank you docmike. It was a relief to get an email confirming that we/I am eligible for treatment should we get infected, but you’ve given more information about what that treatment will potentially be.

[sachbarnesParticipant]

Dad got a Priority Home Antiviral PCR Kit in the post, to return if he shows symptoms. The front of the booklet says he may be eligible for new treatments if he gets Covid, based on his medical records.

Is that what others have been receiving?

Tx

[docmikeParticipant]

dear all
I ALSO HAVE RECEIVED THE PCR KIT TO BE SENT ASAP WITH SYMPTOMS OR POSITIVE LATERAL FLOW . IT IS THE FIRST STEP IN EARLY ACCESS TO ADDITONAL TREATMENTS WHICH IS CONTROLLED BY A CLINICIAN WHO WILL CONTACT YOU FROM 119?ETC. THE LOGISTICS OF THIS SOUND GOOD TO ME .
LIKEWISE I RECEIVED A LETTER FROM A LOCAL HAEMATOLOGIST (NOT MY MYELOMA SPECIALIST )WHICH CAN BE USED TO OBTAIN MY 4TH DOSE OF ANTI COVID VACCINE / OUR TRUE BOOSTER DOSE BUT ONLY AFTER 3 MONTHS FROM MY THIRD DOSE . SO AFTER 9.1.22 I HOPEFULLY WILL HAVE INCREASING PROTECTION
MICHAEL

[shropshiremumParticipant]

Got one too, as has my sister who had leukemia 9 years ago, and has ongoing health issues…

[docmikeParticipant]

Dear all ,
Ive had my fourth jab (2nd Pfizer ) but note that the pfizer antiviral drug paxlovid has been approved and maybe available for us ??? claimed to be 90% effective given prophylactically . Ideally it would be best if we had a 48 hour supply to start asap (double loading dose ? a personal medical opinion based on experience )
Antivirals will give us the best protection in the future and I think reduce?abolish hospital admissions for the general population
best wishes Michael

• This reply was modified 2 years, 10 months ago by  docmike.

[sachbarnesParticipant]

Was looking for info on Treatment options if Myeloma patients get Covid. Found the below on the NHS website, which is useful.

Two treatments in the U.K, as below, intravenous (Sotrovimab) or capsules (Molnupiravir).
By the looks of it Sotrovimab is the much preferred/more effective treatment (upto 85% vs 30% risk reduction).
Defo seems worth discussing with your team before they take action, if the time comes.

HERE

[garrath4748Participant]

Hi All.
I tested positive for COVID on the 31/12/2021. I had used the PCR test kit provided by the NHS just in case I developed symptoms of COVID. My very 1st action was to inform my Chemo team, using the emergency contact number. The idea being that they would refer me for the new drug treatment at the earliest opportunity. Bear in mind that there is a time limit on these drugs and they need to be provided as quickly as possible in order to be effective.
Unfortunately due to a lack of knowledge, I was informed by a member of the team that there was nothing they could do and that I would have to go through 111. As it was a bank holiday weekend the other referral option of my GP was unavailable. Over that weekend I spent several hours on the phone to 111, mainly in queues waiting to speak to someone. After much misdirection and confusion I was eventually referred to a clinic much further away than the facility which is located in the same hospital as my Chemo team. I received the Sotrovimab infusion on the 4th of January, just within the timeline apparently. At the time of writing, 14th January I am still showing positive on LFT tests and PCR. I still have cold like symptoms and an unsettled stomach.
Best wishes.
Garrath

[Author]

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