Well I have already sent emails to certain politicians. I don’t expect any response, I’m just a tiny minion, but it makes me feel I am doing something.

One sees Jeremy Hunt bringing in the 28 days to a definitive cancer diagnosis, when at the same time they deny patients some cancer drugs. Doesn’t equate to logic the way I see it.

I know M UK…[Read more]

Jan. I just wanted to say how well you have put it. We have to stand up as one body to try and get this decision overturned. It’s bad enough to cut one drug but two ! If Scotland and Wales can have these drugs let them explain why not in England.
I shall be emailing a lot this w/e. Health Secretary, David c and my local m p .
Come on everyone the…[Read more]

Just a further thought. That lady from Nigeria that had £145.000 worth of nhs (maternity) services would have got almost 19 cycles of Revlimid.!!!

I feel the same as all the previous posters. I’m absolutely gutted. I don’t understand that pom appears to be available under the NHS in Scotland and Wales, but in England it isn’t.
I shall be emailing my MP and anyone else I can think of. However this is going to take everyone bombarding the officials until they give in. I’m sure Myeloma UK will…[Read more]

Hello Helen

Thank you so much for your reply. I find it a real comfort to “talk” to people who know what its like. I do go to a support group but we’re on summer break at the moment until the end of Sept. I do know I will get over how I feel at the moment. You have to don’t you.
May I ask how high your PP’s went before they started you back on…[Read more]

My Dear Vicki

I was so sorry to see your very sad news. Colin is at peace now. My thoughts and prayers are with you during this very sad time.

susie

Hi Peter and welcome. You will find some very helpful, knowledgeable folk on here. I know when I was at the start of the MM life I found it so helpful and comforting to speak to people going through the same hardship.
I wasn’t having Velcade but was on the Myeloma X1 trial and on Revlimid, Dex,and Cyclophosphamide. I always found the dex made me…[Read more]

Hi Andy

Well done. So pleased for you. Hope it keeps going like that for a very long time. You deserve it.

Best wishes

susie

Hello. I’m sorry you have had to join this forum, but welcome. You will find lots of knowledgeable folks on here.

Wasn’t on thalidomide myself, I am on the myeloma x1 trial and was randomised to Revlimid, so I can’t speak from experience. However everyone reacts in different ways, just as myeloma is a very individual disease.

I suggest you…[Read more]

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

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

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

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

Hi finn.

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

Best wishes

susie

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

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