[sachbarnesParticipant]

update from me, biopsy and paraproteins came back at 0. so the rollercoaster continues as dad hasn’t been on any treatment since nov. kappa light chains and ratio still not at normal level though. plan is still for stem cell transplant hopefully mid feb.

[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

[sachbarnesParticipant]

Thanks for the info both. Unfortunately we are still waiting on Dads Bone Marrow Biopsy taken just before Xmas. Its so frustrating that we are still waiting, and our consultant obviously cant make a plan until its done. Just hoping it shows a reduction, and then Dad will go onto RD until Transplant.

However he finished VTD middle of November, so we are already at 2 months without any treatment (not counting the Cyclo Harvest primer). I am worried we will be potentially 3 months from end of VTD to STC, and thats if they allow it with the current Covid situation.

[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

[sachbarnesParticipant]

Hi Caroline, Jane. Our consultant meeting on 17th December also wanted dad to go onto D-PACE (no T as he thought its effect has been maximised). However they did more bloods that day which came back last week and the Paraproteins came down from 10 to 5.2. Surprising but then he wanted a bone marrow biopsy to confirm what will now happen before biopsy. If the biopsy results are similar reduction, to around 5% from 10% in Oct, then he will go onto oral drugs until transplant, otherwise he might still want to do D-PACE.

Talk about a rollercoaster. Good luck with the DT-PACE, it seems to be the best path.

Dads results:

59 para start of vtd
7 para end of vtd
10 para week pre harvest
5.2 para week post harvest

[sachbarnesParticipant]

Hi Caroline, we just had the same thing with my Dad. VTD finished at paraprotein of 7 in the middle of Nov. Then we had blood tests, and then started the Cyclo and GCSF injections. The blood results came back with paraprotein rising to 10. Consultant wanted us to continue with the Harvest, which happened successfully today. Meeting him next Friday to decide the plan forward.
I wasn’t sure going ahead with the Harvest was a good idea if his levels were rising, as isn’t it then harvesting more bad cells too? Not sure.
I am guessing Consultant will want more bloods taken and maybe another biopsy to see where we are. He has stressed that Paraprotein levels are a surrogate for biopsy, which is the only way to see true Myeloma activity. I know that many have varying levels of Paraprotein for stability for a long time. So hoping for the best next week.
Please let me know how you get on. All the best.

[sachbarnesParticipant]

thanks both. unfortunately 2 weeks after his induction finished, his levels have gone from 7 to 10 in the latest blood test results. light chain ratio also 4 to 8.
harvest is at the end of this week, waiting to speak to the consultant tomorrow. not sure we can go ahead with a STC if levels are rising right?

[sachbarnesParticipant]

Ah thanks. Yes Scotland is ahead of the game, approved there in January, and has been rejected twice in England and Wales since. All the best!

[sachbarnesParticipant]

Hi jiffie, can I ask where you are getting Dara with VTD upfront on the NHS? Or is it private?

Tx!

[sachbarnesParticipant]

Hi, can I ask why they switched to DT PACE, had his papaprotein levels plateaued, or was it due to the side effects, or both? Judging by your initial I assume the switch helped bring them down to remission levels.

Dad is in a similar boat and about to finish cycle 4 of VTD, and they are saying they might switch to DT PACE because of the side effects they think Velcade is causing, including eye infections, burning feet sensations, etc. His paraproteins have also levelled off after initially falling a lot in the first 2 cycles.

Thanks for any feedback.

[sachbarnesParticipant]

Hi all, on the topic of Antibody Testing, I read on the Blood Cancer UK forum that the one that is usually given is the Roche one. It has all the approvals and gives you an exact reading for the Covid Spike antibody instead of just negative/positive. You can get it privately from Lloyds Pharmacy online for £50, after filling out a few questions where a GP then reviews and approves. They can send a copy to your GP for your records as well. Link for anyone interested, has some further info on the test and numbers too, Here

I asked Myeloma UK specialist team and they said antibody testing is useful but only paints a partial picture, as the B/T cells are unmeasured. Personally we just wanted to know if dad had some, so found it worthwhile doing.

[sachbarnesParticipant]

Hi all, on the topic of Antibody Testing, I read on the Blood Cancer UK forum that the one that is usually given is the Roche one. It has all the approvals and gives you an exact reading instead of just negative/positive. You can get it privately from Lloyds Pharmacy online for £50, after filling out a few questions where a GP then reviews and approves. They can send a copy to your GP for your records as well. Link Here

I asked the Myeloma UK specialist team, and they said as some have mentioned, we don’t know what constitutes a good level, and also B and T cells form part of the protection and those are not measurable. But they said antibody testing can be useful, even if it only paints a partial picture. Also the various trial data that has been coming out shows range levels, and we know the level the NHS seeks for plasma donations, so we have some data as comparable.
I have pasted Dads results below which includes some info on what the number means. Thankfully his seems to be close to their median. Personally I would prefer to know he has some there anyway, even if we dont yet know what a good level is.

Your COVID-19 antibody blood result was Positive. This means that IgG and IgM antibodies to a specific protein of the SARS-CoV-2 virus were detected in your sample.
Your total antibody level was 155.0(U/mL).
At the moment we do not know what constitutes a high, low or average level of antibodies in the population. However, as a guide, NHS Blood and Transplant are targeting people who have antibody levels higher than 62 U/ml to donate plasma to help in the treatment of people who are ill with coronavirus. This doesn’t mean that if you have lower levels than this you won’t be protected against coronavirus. However we don’t know at what level of antibodies protection occurs. This test enables you to track your levels of antibodies over time, to see how quickly they decline after a positive coronavirus test or receiving the vaccine.
Among the 357 with detectable antibody after dose 2, median (IQR) antibody levels were 142.1 U/mL (9.44->250) (Roche)

• This reply was modified 3 years, 2 months ago by  sachbarnes.
• This reply was modified 3 years, 2 months ago by  sachbarnes.

[sachbarnesParticipant]

Ah I see. My dads transplant will be up in Oxford, and home is Berkshire so maybe we run into the same issue. Fingers crossed yours is sorted soon, please keep us updated.

Tx.

[sachbarnesParticipant]

Hi, was reading up on this same thing. Anthony Nolan say your transplant team should be helping arrange the revaccination? link and extract below. Will be meeting transplant team on Tuesday for initial consultation, so will be asking about this.

During your transplant your immune system is replaced, so if you received a COVID-19 vaccine before your transplant it is recommended you are vaccinated again after your transplant. Your transplant team will help arrange this. This official recommendation is in the Public Health England guidance for healthcare professionals known as the Green Book. The reference to revaccination after transplant is in Chapter 14 on page 20 here – you may find this link useful when discussing this with your transplant team.

[sachbarnesParticipant]

hi jbal did this subside? my dad just finished first cycle and is getting the same.

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