Hi Vikki

Great to hear from you. Sorry to hear Velcade didn’t work for Colin. Not on here very often so when I got your post I looked back to see how Colin was doing. He’s had had a rough time and he’s thinking OF GOING BACK TO WORK!!!!! I hope the new treatment works. Blo*dy disease.

Frank has his up and down days. We both took chest…[Read more]

Hi Dawn.
I am still in limbo; M spike leveled off at 37. hb 11.9 but mri spine and limited skeletal survey no lytic lesions .Am awaiting bone marrow on 23/2 and pet scan 24/2
The skeletal survey in sheffield did not include long bones which is contrary to the guidelines of 2011 British Haemotology society.The pet scan broke yesterday and hence…[Read more]

Ps Ron – Ellen and or Maggie are brilliant (on the helpline). Helped me on many occasions.
Best wishes
Jean

Hi Ron

My husband had shingles last year (1 year after SCT) it was bery painful and he still gets some pain. Consultant prescribes aciclivoir anti virol and pregabalin for pain. He has been on them for over 1 year and consultant in No hurry to take him off them. Frank is 72 and he got a letter from GP to get the shingles. He checked with…[Read more]

Hi Val

Just picked this up. Do hope Peter is back home and on the mend.

Love.

Mavis x

Hi Helen

Good to hear from you again and to hear wedding went so well. Do try and find something else to look forward to!

Good luck with all your deliberating. I do hope that, like for Andy, they are able to pull something out of the bag for you. Aren’t there ant trials coming up for relapsed patients?

Love and best wishes.

Mavis xxx

Hi Karen

Just wanted to send best wishes. Let us know how you get on. There’s still lots in the tool box to knock it back for you.

Love

Mavis

Hi Eva

Sorry to have to welcome you to this site, if you know what I mean!

I’m not great on the intricate blood results, but must say, I can understand you suspecting Myeloma when I read your other symptoms and because your Dad had blood cancer. Was that Myeloma? It would be very helpful to you to have a word with one of the Specialist Nurses,…[Read more]

Hi Andy

Just caught up with your post. I’m so happy for you it’s wonderful news. Know you have had hard times – so keep up the good work

Hi Vicki and Karen,

I try and focus on the fact the myeloma is so individual so even if the first remission is not the 4 to 5 years maybe the second one will be, it is a case of finding the drug that works best for the individual. Phil had velcade as his first treatment (on a clinical trial) and although it worked it has left him with peripheral…[Read more]

Hi Karen,

Sorry to hear your pp numbers are rising. It is a shock when you get the news, we felt the same when we found out my husband Phil was relapsing – we also wanted 4 or 5 years remission after the SCT. Phil actually only had one month of complete remission but his pp numbers rose very slowly. Phil started treatment again last week just…[Read more]

Hi Tracey

I’m not on the site much but came across your post. My husband was diagnosed September 2006. I went to pieces .- I cried most of the time but I was referred to a therapist. It took time but I eventually it helped me. Frank had a STC transplant in March 2013. It’s not been easy but he is in remission (thank God) and we try to live each…[Read more]

Hi Andy

Just caught up with your good news. I can’t tell you how happy I am for you, and that after all this time they seem to have found something that works for you. Long may it continue.

You are so supportive of everyone else you deserve a break. And, YES, every day is a gift!

Best wishes.

Mavis

Hi Katie

Sorry your mum has had to join this elite club! However, as everyone says, don’t panic. Myeloma isn’t a walk in the park, but nor is it the immediate death threat it used to be.

Your asked about para protein levels before treatment. I know 30 is bandied around as the marker for the start of treatment, but my Consultant said it is the…[Read more]

Hi

Welcome to the Forum from me too. The diagnosis of MM is hard as most of us had never heard of it and the fact that there is no “cure” is disconcerting.

I am just on 70, having been diagnosed over four years ago. I have always taken the line of having as little treatment as possible. After a year I had six rounds of CDT which brought my…[Read more]

Hi Susie

I’m glad for you that the end of your treatment is in sight and, who knows, you may yet reach undetectable PP by the end.

I am now nearly three years post CDT and still doing well, apart from bone pain. I am so glad I didn’t go down the SCt route. I have had no maintenance drugs, just four weekly ZOMETA infusions. I saw my Consultant…[Read more]

Hi Peter/Ian/all

Just wondering how you are getting on with your new regime? I hope you are feeling better and that the paraproteins are coming down.

I have been told that the original date for my transplant which was mid Feb is now not going to be until mid March because of the waiting list. My paraprotein which only got down to 11 after 9…[Read more]