Second relapse for Multiple Myeloma on the horizon?

How @Coastgirl I just wondered how things are going for you?
Look after yourself

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Thank you for asking @Erica. I have no news as unfortunately there are no clinics running in my hospital for the time being, therefore I have no idea when I will next be seen. I have also discovered that I wonā€™t qualify for the trial that had been previously mentioned so Iā€™m just waiting to see what will happen next! We had a lovely Christmas with family here though, which was a very nice distraction from thoughts of relapse. I feel sad for the NHS: such wonderful people working so hard under such difficult conditions.

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Hi @Coastgirl I was awaiting an appointment for another non urgent cancer for about Jan 23 and it has come through for next Sept.
I am so glad that you had a lovely family Christmas, yes, family can be priceless and the best medication ever.

Sorry to hear you canā€™t go on the trial, @Coastgirl. But I hope you still have a couple of options?

Yes, isnā€™t it sad to see Britainā€™s jewel - the NHS - in such a state?

Hope you hear something soon about next steps. X

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Goodness, @Erica Erica, I thought all cancer appointments were on a two-week schedule. Are you sure this isnā€™t a mistake? It puts my wait of a month or so into perspective. I hope you will be OK.

Thank you also @Fullofbeans. Iā€™m sure there will be other options (eventually) and Iā€™ll be sure to let you know. How are you feeling now?

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Donā€™t worry @Coastgirl mine is a follow up appointment about my skin cancer op I have had and symptoms and if it were urgent I would have done something about it, but thanks so much for caring.

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Iā€™m really well, thanks, @Coastgirl and feeling very positive about the year ahead. Iā€™m starting this year with no side effects at all from my Stem cell transplant, and in a couple of weeks Iā€™ll be 2 years post-transplant - which is a big health milestone to celebrate. So Iā€™m feeling great at the moment - thanks so much for asking. :kissing_heart:

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Hi @Fullofbeans yes, I also believe in celebrating all my ā€˜winsā€™.
You go for it and really celebrate, look after yourself.

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Thanks so much, @Erica. And you take care too. X

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Congratulations @Fullofbeans ! Thatā€™s a really happy way to start the new year!
Iā€™m also relieved @Erica that youā€™re not concerned, although it does seem a long time to wait.

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So I now know for sure that this is my second relapse and the paraproteins are increasing rather fast. Tests are now in hand, however, so I will see what happens next. Itā€™s always easier to know what is what and to have a plan, I always think.

Has anyone else experienced second relapse from multiple myeloma? Do you have any tips?

I must add that Iā€™ve had some great support in recent from the BCUK helpline and Clinical Trials Support Service which helped particularly when there was a temporary ā€˜radio silenceā€™ from my clinical team.

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Iā€™m sorry to hear that @Coastgirl, but yes - now that itā€™s certain, at least a plan can be made. I just read an article in my newsfeed about a myeloma trial drug that is working very well. I think it was from the Mirror. Iā€™ll try to find it for you. X

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The Liverpool Echo. ā€˜Inobrodibā€™.

(Sorry itā€™s got that horrible phrase in the title. If you can ignore it, read on. Itā€™s very positive.)

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I always feel better with a plan to :blush: Iā€™m
Also glad you got some good support and hope your team are communicating better now x

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@Coastgirl Oh I am glad that you have a plan, I do like a plan.
I am sorry you had temporary ā€˜radio silenceā€™, isnā€™t it frustrating.
Really look after yourself and please keep posting.

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Thank you @Fullofbeans. This is a really hope-building article. Iā€™ve never heard of inobrodib but certainly there seem to be many new drugs on the cusp of being made available soon or in the future. I donā€™t have any grandchildren but that would be the absolute epitome of joy if I do live long enough to meet any!! No wonder that lady is beaming from ear to ear! I think it would be very exciting to take part in a trial and I am waiting to see if there are any suitable for me.

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Really hope thereā€™s a trial for you @Coastgirl - although there may well be more established avenues yet. But things are really changing and developing all the time. In the three years Iā€™ve had to have blood disorders in my thoughts, Iā€™ve read about so many new drugs for various blood issues.
Yes, grandchildren - that really would be the cherry on lifeā€™s cake, huh? Iā€™m not expcting to see any for a long time, but it is my sincere hope too. X

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Hi @Coastgirl Just checking to see how you are?
I donā€™t have any grandchildren either.
Any news?
Look after yourself

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Hi @Erica,

Well, an amazing thing happened today: I got through to my consultantā€™s secretary and found out that I have an appointment booked at the end of this month! Hooray!

Usually when things move slowly (in the cancer world) it means good news although at the moment I donā€™t think thatā€™s necessarily the case. But an appointment in the hand is worth having, so maybe I will get some answers soon. Thank you for asking.

I wonder if more people on this forum (with myeloma) are quite newly-diagnosed (?) as I have not come across much sharing of experiences at second relapse stage. Anyway, I will happily share mine once I find out more about the kind of treatment that lies ahead.

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Really glad youā€™ve got an appt @Coastgirl, so that you can find out whatā€™s going on and what the plan is. But itā€™s still a little while to wait. I hope youā€™re able to distract yourself a bit?

Yes, you havenā€™t had anyone come back to you yet about 2nd relapses, yet we know they happen, and that treatment continues. Are there any myeloma-specific forums that could help? The experience of others whoā€™ve gone through the specifics of what weā€™re facing is invaluable, isnā€™t it?

Hope youā€™ve had a couple of days of spring being in the air where you are. This sort of weather I always find so cheering and hopeful - and if you have a garden, that could be a brilliant distraction at this time of year (ie. lots of work!) X

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