[toffee66Participant]

I tested positive just over two weeks ago, roughly two months after my last jab. I had flu-like symptoms for 3-4 days and tested negative roughly a week ago. I am 7 months post transplant so I am having to get fully revaccinated. Fortunately I had my first two jabs before catching it (probably at my monthly treatment given timing!) and I am due my third in a few weeks.

UCLH Macmillan did a great job getting anti-virals (Paxlovid) to me same day (by courier) and I am doing fine. A few residual sniffles and very slight breathlessness on activity but nothing dramatic.

It is getting even harder to avoid it given policy and public behaviour so vaccination and access to anti-virals are really important lines of defence for us.

[toffee66Participant]

I’ve just had cycle 20 after my first relapse. I am now in four-weekly Daratumumab maintenance post SCT (September 2021) after initial DVD pre transplant. I am in Complete Remission for both my Myeloma and AL Amyloidosis with light chains, paraprotein, Troponin and NT-ProBNP all ‘normal’. Side effects are not bad at all. Mild neuropathy. A couple of days of high fatigue and cold-like symptoms after injection. Obviously it does not work for everyone but it has been a welcome addition to the treatment range.

The continuing development of new MABs, Bi-MABs, CAR-T & other therapies offers hope to all as like so many I am being treated with a drug that was not even officially launched when I was first diagnosed. Myeloma UK do a great job supporting drug development (clinician support, clinical trial promotion etc.) & advocating for drug approvals so fingers crossed that the future continues to get brighter!

[toffee66Participant]

Good to see you using this resource and the Under 50s Group. When local support groups are able to operate more normally face to face you might also find that very beneficial.

It is scary, annoying and just on a purely practical life level, extremely disruptive. Remember that you are not alone and as Tim, me and others show you there are reasons for optimism.

It can be hard to hold onto that in the early ‘sky falling in’ days when newly diagnosed but one day at a time, the best you can IS good advice.

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