[susieParticipant]

Hi Maureen

I’ll remember that about the blood results etc. My consultant always answers any questions I have but he never seems to offer any info. But he is a very pleasant chap and there is only 2 consultants at my hospital. However its something to bear in mind. Thanks

Best wishes

susie

[susieParticipant]

Hi Tony

Thanks for your reply.

I shall continue to try and get these letters as they prove a good record to have. As I said, I used to always get them with the MGUS, and that was without asking. Its just weird.

Best Wishes

susie

[susieParticipant]

Dear Vicky

I just wanted to add to the many posts following your sad news. I wish you both all the very best. Remember doctors can be wrong so try and keep hope in your hearts.

My thoughts and prays are with you

susie

[susieParticipant]

Hi Reescj1

I found your post rather interesting. Do you know if unrefined sugar is ok to have ? I only ever have the golden unrefined sugar.

susie

[susieParticipant]

Hi finn.

Thanks for your reply. Yes I am on pain relief, co-codamol.

Best wishes

susie

[susieParticipant]

Hi All

Finn. Interesting to read your symptoms. Is your pain there all the time or like mine, just when you walk ie weight bear ?

As Zometa strengthens bones I wonder if the pain is the zometa actually working.

Best wishes to all

susie

[susieParticipant]

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, even my Achilles tendons are very painful. (waiting for a scan)

I wish you the best

susie

[susieParticipant]

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

[susieParticipant]

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 yes.

Thanks again

susie

[susieParticipant]

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 there was more proof that it did extend time of remission.

Best wishes

susie

[susieParticipant]

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

[susieParticipant]

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 measurable as it was too narrow to measure. I’m so pleased as it was 63 when I started treatment. I’m waiting for results of a BMB I had a few weeks ago.
I hope you remain in remission for some time yet.
Best wishes
susie

[susieParticipant]

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

[susieParticipant]

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

[susieParticipant]

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

[Author]

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