Hello Andy

How lovely to have you back with us. I know how ill you have been, so give yourself time and your strength will improve.

I have always remembered the help and advice you gave me at the start of my MM journey.

Love and Best Wishes

susie

Hi Karen

Thanks so much. I have clinic appt next week so will find out what my PP’s are doing.

Unfortunately I’m not entirely happy with my consultant etc so I may ask for referral to another hospital. They have failed to give me advise over things and inform me of some changes on the trial I’m on.

I do wish you a speedy recovery from your SCT,…[Read more]

Come on everyone. Do sign Rebecca’s petition on 38 Degrees. We need to all band together to keep this in the forefront and not let people forget, otherwise it will be forgotten and we’ll never get these drugs back.

Hi Georgie, I think the mixed opinions about SCt are generally if you are older and have other issues or mixed opinions from those having to go through it – which is really just the “is it worth it? what if it doesn’t work for me?” type scenario – more personal doubts than mixed opinions. The medical fraternity in the Uk have no real mixed opinion…[Read more]

Hi there, as you will appreciate the damage from MM varies from person to person but regards exercise for your father that is for discussion with the consultant only – who will have full body xray results etc. Obviously the Mm has nibbled the bones to have a broken rib so you need to know the extent elsewhere before any running resumes. At some…[Read more]

Hi Rebecca
I’ve signed that. What about putting it on change.org as well. I feel we need to bring this drug scandel to the forefront. It’s all cost of course, but when you see NICE has just approved a drug for pancreatic cancer which will give those patients 2 extra precious months yet they deny blood cancer patients proven effective drugs. Why…[Read more]

Dear Andy.

Do get well soon. You have been such a help and support to a lot of us. You deserve the best.

Lots of Love

susie

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]

Hi, leaving work is generally classed as traumatic as a break-up, house move etc which is why the chances of a heart attack within the 1st 6 months I believe significantly increases. Personally, I feel it is easy to fill time/be more social in the so-called good weather months but winter, if you’re not careful, is much more isolating and too much…[Read more]

Hi Stanley, so pleased to hear you have changed your life and given up work. It is a very brave decision to not stick to the “norm” and bury our heads. Funnily enough over the last year the amount of people I know of who have died just after normal retirement age – or died within a year of achieving their golden pension whilst sticking at a job…[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]

Hi there, At 57years old is there a reason why SCT is not an option? it can be done with kidney problems and even whilst on dialysis? SCT is npw our best course for a longer remission pre relapse. The usual option at 1st relapse now will be either find a trial with a combination of drugs or thalidomide maintenance and then onto revlimid…[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]

Scary times indeed, totally devastated – we do not have a great arsenal of drugs and this certainly helps deplete our cupboard somewhat. Pom is supposed to be better for kidneys with a higher dose than rev could give without damaging kidneys so I was hoping it would be there for me in the future. I read the US site a lot with tailored treatment…[Read more]

Hi Eve, It is so nice to hear from you again – I used to read your posts and digest your messages with interest. I think posters often don’t realise what a help and comfort they are to so many – it is only a small % I am sure who actually post but a large % who read and it is very unselfish to give your feelings and thoughts to cyber strangers -…[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]