Donna I was shocked and saddened to read about your mum Gill. She was truly a lovely, sympathetic women who was alway supportive. I Loved to read about trips to France and the dogs. I always remember Gill replying to a post on advice for travel advice and she answered “Stephen says he’s not going to wake up in the morning with an acute case of…[Read more]

Hi Donna,

I am very sad to read this, Gill was incredibly welcoming when I joined the forum and her stories about the dogs and the trips to France where always delightful. My condolences to you, your brother and the rest of Gill’s family and friends.

Megan

post script
I have recently had chance to review my results over the years preceding active mm and now note that there was a slow rise in the free kappa light chain about 18 months before the m spike started to rise .This has been reported before in mayo clinic usa retospective study on mgus and smm.
I am in remission nearly a year post sct. m…[Read more]

Hi Cheryl

Don’t know if anyone answered your points so in case they didn’t here goes! Yes you should keep having regular infusions of Zometa. It kept me MM free for three years before I had to come off because of problems with my kidneys. Since coming off I have had much more pain and my PP has begun to rise.

As for X-rays and scan, some…[Read more]

Hi Andy

You can tell a lot of us “old stagers” are not on here often these days in that no one has replied to you!

Great that you are still getting treatment that is allowing your new normal to continue! Do hope you get to Greece and have a great time. Just imagine, four years ago these drugs weren’t in existence. As you say “every day is a…[Read more]

Hi Cheryl

The bit in your post I am replying to is the question about infusions. I feel rather an expert on this subject. I had about four years of four weekly Zometa infusions to prevent further bone damage. I was only taken off when I began to have kidney problems.
All I can say is, since I finished infusions my pain has steadily increased…[Read more]

Hi!! Am back! It’s coming up to two years now since Slm died,had lots of adventures,but would have liked to do far more!!!

I decide to come back and tell you,why you should grab life by the throat and enjoy evey minute you have,I will not be replying to any answers,!!

I was diagnosed with Bladder Cancer in June of this year,although it’s very…[Read more]

Hi Andy

I’m hardly on site these days but wanted to say that I hope your holidays have built you up. No reason why your protein level shouldn’t stabilise. After all this is an unpredictable disease. I do hope so.

Enjoy every day and the summer here, while it lasts!

Love

Mavis

Hi Maureen
Keep hopeful. Do hope news for Ian is better than you fear when you go back to hospital.
Love.
Mavis

Hi Heather!

I’ve been smouldering for 8 years. My pp is below 30 but my biopsy showed 15%. When my pp was at its highest (15) I was ill a lot, but the pp went down and now I don’t have any symptoms. Just the normal smoulder worries about progressing.

My consultant doesn’t like me being called a smoulderer since I’ve been stable so he keeps…[Read more]

Hi Helen

I’m very rarely on the forum these days. Just popped in and saw your post. So glad to read that you are doing well. Have you been able to get away anywhere. Hope you go from strength to strength

Mavis glad to read your remission is still strong. Frank is on pregablin for the aftermath pain of shingles. He’s been on them over 2 years but…[Read more]

Hi Helen

I am hardly on Site now as apart from you and Andy there don’t seem to be many names I recognise.

Congratulations on your fifth anniversary. It’s strange isn’t it to arrive at a point you didn’t think you would arrive at. I am now well into my sixth year post diagnosis so feel grateful I have survived so lon. Didn’t think I would…[Read more]

Hope it does work for you Ted. Keep us informed

Jean x

Hi Ted

I don’t know about adults but one of my sons, when a baby, had one chest infection after another. Things where really bad – they test d him for cystic fibrosis (thank God – negative). They suggested hemaglobin injections. He had them and it was great for him. My hubby is 3 year remission and recently he has had quite a few chest…[Read more]

Lorraine

Are you on FB. I asked and got replys – you can do a search for UK Myeloma Support Group on Face Book. Michelle posted “What problems is she having Jean? I’ve accepted all the joining requests over the past few days?” Someone else suggested that you ask Ellen Watters who is in Myekoma UK. If you still can’t get on let me know. It is an…[Read more]

hi mark ,
I went skiing for about 6 years whist smouldering but had mris and dexascans and the opinion of osteoporosis expert to confirm my risks were minimal and my insurance excluded myeloma . I also played tennis until my myeloma kicked off when i stopped but continue to play golf which surprisingly is seen as an impact sport ??? As far as i…[Read more]

Hi Jane

Sorry if I’ve mislead you. Frank smouldered for nearly 7 years and proteins where rising – very slowly – consultant decided to do SCT. In retrospect we think she did it a bit quickly because of his age. In Northern Ireland cutoff for SCT is 70. She started him on CDT. Chemo, Dexter and thalidomide. How long has hubby been smouldering? Is…[Read more]

My husband diaganosed with Smouldering Myeloma in 2006. Had SCT IN March 2013. We have BUPA and when diaganosed he spoke to his consultant about going private. She was not in favour of it and he went NHS. They have been brilliant. When he needs scans etc he gets them quite quickly. Couldn’t fault NHS

Jean

Skin complications
on day 44 I developed what was thought to be drug rash but this did not respond to antihistamine or hydro cortisone cream or indeed 4 other types of lotion. The rash was very red and the skin was swollen with very bad itching at night and shivering like sunburn reaction .It eventually settled on a second course of steroids,…[Read more]

Hi Karen.
My bone marrow showed 7% plasma cells in the trephine (5% in aspirate) compatible w ith residual myeloma /partial response but I am on double blind trial of maintenance therapy with 60% chance of receiving izaxomib. My mprotein fell to 9 before the trial suggesting some ongoing delayed effect from asct .
Low blood pressure could well…[Read more]