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]

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

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 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]

Andy

I am just so pleased to read that things appear to have finally turned well for you. I shall be watching with hope that all goes well for you. You deserve it. Certainly you have helped me in my early days of treatment for this MM journey and i’m sure that goes for others.

Best wishes

susie

Hi Jeff,

I attend Wycombe General. I was monitored there for MGUS for a few years before it became active myeloma together with a plasmacytoma on my spine. At the beginning I felt confident in the care but as time has gone on things seem to be more and more slap dash, especially when it comes to drugs. I find some are omitted on one cycle then…[Read more]

Thanks Andy. I’ve always picked alcohol free mouthwashes. I shall bear in mind the salt water mouthwash. At the moment I’m using Cordosyl daily (dentist recommended) as it is for preventing gum problems. I have 2 weeks to go till my next hospital appointment when I will question them about the whole thing.

Jeff, Sounds like you were you not told…[Read more]

Hi All

Happy and a healthy New Year to everyone.

I’ve read on here that when on Zometa it is important to keep up dental hygiene, and to use prescribed mouthwashes. My hospital has never mentioned anything about dental problems or preventions. They didn’t even advise me to get a dental check before starting the infusions, which I did off my own…[Read more]

Hi Dorothy}

Thanks for your good wishes. I shall be keeping my fingers crossed for your MRI and team appointment.

I wish you a healthy and happy new year too.

Keep Well

susie x