Second relapse for Multiple Myeloma on the horizon?

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

2 Likes

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 won’t qualify for the trial that had been previously mentioned so I’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.

2 Likes

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 can’t go on the trial, @Coastgirl. But I hope you still have a couple of options?

Yes, isn’t it sad to see Britain’s jewel - the NHS - in such a state?

Hope you hear something soon about next steps. X

1 Like

Goodness, @Erica Erica, I thought all cancer appointments were on a two-week schedule. Are you sure this isn’t a mistake? It puts my wait of a month or so into perspective. I hope you will be OK.

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

2 Likes

Don’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.

2 Likes

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

4 Likes

Hi @Fullofbeans yes, I also believe in celebrating all my ‘wins’.
You go for it and really celebrate, look after yourself.

3 Likes

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

2 Likes

Congratulations @Fullofbeans ! That’s a really happy way to start the new year!
I’m also relieved @Erica that you’re not concerned, although it does seem a long time to wait.

3 Likes

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. It’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 I’ve had some great support in recent from the BCUK helpline and Clinical Trials Support Service which helped particularly when there was a temporary ‘radio silence’ from my clinical team.

3 Likes

I’m sorry to hear that @Coastgirl, but yes - now that it’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. I’ll try to find it for you. X

2 Likes

The Liverpool Echo. ‘Inobrodib’.

(Sorry it’s got that horrible phrase in the title. If you can ignore it, read on. It’s very positive.)

3 Likes

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

2 Likes

@Coastgirl Oh I am glad that you have a plan, I do like a plan.
I am sorry you had temporary ‘radio silence’, isn’t it frustrating.
Really look after yourself and please keep posting.

2 Likes

Thank you @Fullofbeans. This is a really hope-building article. I’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 don’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.

2 Likes

Really hope there’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 I’ve had to have blood disorders in my thoughts, I’ve read about so many new drugs for various blood issues.
Yes, grandchildren - that really would be the cherry on life’s cake, huh? I’m not expcting to see any for a long time, but it is my sincere hope too. X

2 Likes

Hi @Coastgirl Just checking to see how you are?
I don’t have any grandchildren either.
Any news?
Look after yourself

2 Likes

Hi @Erica,

Well, an amazing thing happened today: I got through to my consultant’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 don’t think that’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.

5 Likes

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

Yes, you haven’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 who’ve gone through the specifics of what we’re facing is invaluable, isn’t it?

Hope you’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

4 Likes