May I just ask you both if the back pain continues when you were lying down ? I’m getting it, but I also have various disc problems ie herniated etc. and a vertebral slip. My pp’s are not measurable at the last count, after 6 months of RTD. I do feel and hope my back problem are down to wear and tear and not myeloma. I am so fed up with the pain,…[Read more]

Thanks Jono. I have thought about the better monitoring when you’re on maintenance. It may be worth going on it, then if it affects me too much I can come off it.

How long was it after your treatment finished did you start the maintenance ?

Best wishes

susie

Thanks Angela and Carol.

From what I’m hearing so far I think I’m beginning to err on not having maintenance. I’m not having SCT and it seems most of you that have chosen to go on maintenance have had the transplant. Whether that makes a difference I don’t know. If it was certain it would lengthen remission it would be so much easier to say…[Read more]

Hello Angela

Thanks so much for your reply. I’ve been off treatment for about 6/7 weeks and I’m still recovering from treatment. Am I right from your post your hubby was about 6 months before he started maintenance ? What strength of Revlimid and Varinostat is he on ?

I just can’t make my mind up as to whether to agree to it or not. I just wish…[Read more]

Hi Linda

I’m so sorry you have relapsed. What treatment are you going on now? I wish you the best. This disease is the pits isn’t it.

Best Wishes

susie

Hi Tony, Thanks for your reply. I’ve just noticed iv somehow put my post under the wrong section. Don’t know how I did that.
I didn’t have SCT and was put on the non intensive pathway of the trial. A SCT was never discussed with me although I don’t know I would have opted for it.
I too am having Zometa infusion every 4 weeks. My last PP’s were not…[Read more]

So sorry to hear this news – he was very generous in spirit, optimism and support which I guess is why this is seems so out of the blue. Condolences to you all.

Rebecca

Hi Dorothy

Thank you for your reply. It’s encouraging to hear that.

How are you now ? I hope you are recovering well and feeling a lot better.

Best wishes

susie

Hello All

I finished my treatment about 2 weeks ago. Since then I haven’t felt particularly well. I wouldn’t say I feel ill just not well. I expected to feel very well, as I did before all this MM journey started. My bloods are all normal. Am I expecting too much ?

Best wishes to all

susie

Hi Amanda, don’t come on here much now but just reading and note you are going into SCT with kidney failure – I had mine Xmas 2013 with a gfr of 28 and it didn’t impact on them (negatively) at all. Had it done at Leeds and they did say they have had a patient on dialysis who came off dialysis after SCT when the myeloma burden had been reduced.…[Read more]

Hello All

I have decisions to make in the next couple of weeks. Has anyone ever been on vorinostat ? If so what are your experiences of it.

Dorothy

I have been wondering how your surgery went and how you are recovering. Hopr to hear from you soon.

Best wishes to all

susie

Hi Andrea, All the best for Sunday – I had mine over Xmas 14 months ago and don’t come on here much now – just enjoying the remission/calm I guess. There is plenty of advice if you search under this topic but things I would take:- cheap packs of underwear from Asda or primark to throw away – I’m sure you’ve heard of the S&D time (not nice but…[Read more]

Hi Dorothy

I shall be thinking of you that day and wishing you all the best. I’m sure all will be fine. The 17th is the day of my hospital appointment so I wont forget.

Best wishes

susie

Hi Dorothy

Thank you so much for your good wishes.

How are things going for you at the moment ? Well I do hope.

Best wishes

susie

Hi All

I’m coming to the end of my last cycle on the Myeloma X1 trial and have got to tell them if I am prepared to continue on maintenance. Has anyone any advice on the pro and cons of staying on Revlimid all be it on a lower dose. I can’t seem to find much info on continued use.

Hope you are all doing ok and coping with this mind bending…[Read more]

Thanks Jeff. None of us know what the future holds and I don’t think any different about an SCT. Were you on any maintenance drugs these past eighteen months then.

I recently posted that the plasmacytoma on my spine had reduced significantly, which my consultant told me at my Christmas eve appoint. At my last appointment in Jan I asked for a…[Read more]

Mavis, Thanks for your reply. If I can do as well as you have I shall be happy. I have seen on Myeloma Beacon there are some doctors in the States that don’t agree with SCT and say in the future it won’t be used as standard treatment. We have to see if they are right.

Jeff, Thank you. It is indeed a great feeling. I remember when I started…[Read more]

Hi All

I had the end of cycle 5 hospital appointment today and saw a very nice registrar. Paraproteins are 3 which I was a bit disappointed with I was just so hoping they’d be undetectable. Never mind treatment has done me well and I shouldn’t grumble at numbers.

I did bring up my concerns about the drug inconsistent’s and was told it did…[Read more]