Thank you all for your replies.

I hate to think I am approaching a time when I need a blue badge, Its like accepting I’m getting past it. I’ll see how it goes. People seeing me walk would most probably not see much wrong, but I’m in agony when I walk any distance, so much so I just have to sit for a while. I will do it via Macmillian.

best…[Read more]

Hi Andy

Good to hear from you. It seems a lot that used to post here are now on facebook, which I am not.

Amazing, you on your 30th cycle, and seems you’re doing well and I’m so pleased for you.

Have good holidays

Best wishes

susie

Hello jaylo

Welcome to the forum.

Try not to worry too much. You can be in the MGUS phase for years and some never become active.
I was MGUS for at least 4 years, with a paraprotein of around 30 and a bone marrow of less than 5%. It wasn’t till it went up significantly with a bone marrow above 10% that I was diagnosed as Myeloma. During the…[Read more]

Hello Sara

Yes Wycombe General in High Wycombe, where I’m being treated. Stoke Manediville Hosp as well. Is it yourself that needs treatment ?

Best wishes

susie

Hello Sara

I was on the Myeloma X1 trial. Randomized to Revlimid arm. Not on treatment now but it worked very well and brought my paraprotein down really fast. I’m in Bucks, Wycombe actually. If I can be of any help feel free.

Best wishes

susie

Hello Bridget

Sorry you’ve had to join us here. Try to only use this site for info, or Myeloma Beacon (an American one)

I too live on my own which made going through treatment very tough. Thankfully I had good support from close family and friends.

If you would like to put your email address on here, I’m quite happy to email you through your…[Read more]

Thanks for that Angela. I’m going to phone my consultants secretary next week to ask for the letters. I’ve done this several times in the past and spoken to consultant. I get sent just the one. Strange thing is, when I was being monitored for MGUS I never had to ask yet always got a copy.
Maybe they’re cost saving on stamps. !!!

Hi suenev.

I was on Myeloma X1 trial and was randomized to the same as you. I too had side effects, tho no rashes. I had the severe diarrhoea, visual problems, leg muscle cramps, breathlessness, and some others too. All I can say as the cycles went on I became more able to cope with these problems. They had to stop the cyclophosphamide in the…[Read more]

Hi Andy

I’m so pleased you are improving so well. Give the memories time I’m sure they will fade. Good luck with the intensive physio.

Best wishes

Susie

I find it hard to believe that medical professionals and patient reps (who I understand are on the deciding panel) took Rev & Pom off the list. They are proven drugs with lower side effects than the older CHEAPER drugs. I believe that because they are so effective we would live longer and therefore cost greater amount of money in the long run. To…[Read more]

It is brilliant M UK are fighting our corner. Don’t know what we would do without them. However, I doubt this government will take any notice at all so I won’t hold my breath.

Hello Helen

Gosh you have been through it. I know what you mean about getting really uptight before clinic/treatment appointments. It almost makes me ill, yet the clinicians etc never appear to appreciate how we feel do they. I’ve also got quite uptight since it was announced by the CDF that they are dropping 2 of our drugs.

My PP’s were 14 on…[Read more]

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 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