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 wonāt qualify for the trial that had been previously mentioned so Iām 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 canāt go on the trial, @Coastgirl. But I hope you still have a couple of options?
Yes, isnāt it sad to see Britainās 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 isnāt a mistake? It puts my wait of a month or so into perspective. I hope you will be OK.
Thank you also @Fullofbeans. Iām sure there will be other options (eventually) and Iāll be sure to let you know. How are you feeling now?
2 Likes
Donāt 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
Iām really well, thanks, @Coastgirl and feeling very positive about the year ahead. Iām starting this year with no side effects at all from my Stem cell transplant, and in a couple of weeks Iāll be 2 years post-transplant - which is a big health milestone to celebrate. So Iām feeling great at the moment - thanks so much for asking. 
4 Likes
Hi @Fullofbeans yes, I also believe in celebrating all my āwinsā.
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 ! Thatās a really happy way to start the new year!
Iām also relieved @Erica that youāre 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. Itās 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 Iāve had some great support in recent from the BCUK helpline and Clinical Trials Support Service which helped particularly when there was a temporary āradio silenceā from my clinical team.
3 Likes
Iām sorry to hear that @Coastgirl, but yes - now that itās 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. Iāll try to find it for you. X
2 Likes
The Liverpool Echo. āInobrodibā.
(Sorry itās got that horrible phrase in the title. If you can ignore it, read on. Itās very positive.)
3 Likes
I always feel better with a plan to 
Iām
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 āradio silenceā, isnāt it frustrating.
Really look after yourself and please keep posting.
2 Likes
Thank you @Fullofbeans. This is a really hope-building article. Iāve 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 donāt 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 thereās 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 Iāve had to have blood disorders in my thoughts, Iāve read about so many new drugs for various blood issues.
Yes, grandchildren - that really would be the cherry on lifeās cake, huh? Iām 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 donāt have any grandchildren either.
Any news?
Look after yourself
2 Likes
Hi @Erica,
Well, an amazing thing happened today: I got through to my consultantās 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 donāt think thatās 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 youāve got an appt @Coastgirl, so that you can find out whatās going on and what the plan is. But itās still a little while to wait. I hope youāre able to distract yourself a bit?
Yes, you havenāt 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 whoāve gone through the specifics of what weāre facing is invaluable, isnāt it?
Hope youāve 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