Hi Frances, yes I’ve had eye probs though nothing quite as bad as yours. Mine started with really itchy eyes, had to rinse them couple times a day. Then following eye test at opticians was referred to eye clinic with glycoma, was given eye drops, that appears to have cleared the problem but have to report back in 6 months. This is all very recent…[Read more]

Thanks Helen. It’s been a sad time.
No news is good news I think! My PPs have remained the same. Hopefully I’ll get a period of stability.
Just got our insurance for our trip to Kefalonia £67 for cover for the both of us! Must be the cheapest yet. Though the phone call was quite long and probably costly.
I got insurance when I was on Revilimid…[Read more]

Hi TontF, I have just seen Dr Barton ( for the first time), I said hello from you, she said hello back to you! 🙂 She mentioned there may be a myeloma group starting back up.
My blood count is all within range, kidney function okay, calcium back up( it was borderline), just waiting for my paraprotien. I am in day ward waiting for zometta (45…[Read more]

Hi David.
I’m just about to try and get some sleep before I start to read lol.
I hope everything goes well with the operation and you can cross it off your list.
I would like to be loose now and again lol I’m mainly tight 🙁
How did the skin biopsy go?

Every day is a gift

Andy

Hi DavidH
As DavidM indicates constipation is a seldom talked about but constant bed fellow with myeloma treatments. I find Dex bungs me up good style. And being on Dex once a week every week takes it’s toll. As DavidM says note down when it happens and you will see a pattern and hopefully you’ll be prepared and able to take some preemptive action…[Read more]

Hi Scott
Sorry for the delay in replying.
Just finished my cycle 8 and I’m on Pomalidomide and Dex. So that’s 8 28day months. I’ve not had any nasty side effects to report. Just the usual Dex highs and lows. I take 40mg of Dex once a week every week.
My consultant tells me she has things to try after Pomalidomide stops working though I’m a bit…[Read more]

Hi
I’ll throw my Dex induced bit of information in the ring. From what I’ve read I don’t think it’s so much cost based not having a 3rd SCT I think it’s statistics based. I could be wrong here but I have read or been told that the remission gained on a second SCT is “usually” around half the first. So I presume a third is shorter still. The…[Read more]

Hi Helen

Good the hear from you again 😉 my last PPs were 8.4! Unknown territory for me.
I know what you mean about ” another avenue closed” I got the same result from my brother and sister and I’m on Pomalidomide now cycle 8, I think, with not much to follow when it starts to fail. But hey ho that’s a worry for the future. At the moment I’m ok…[Read more]

Many thanks David

Regards

karen
xx

Thanks Tony,

I will say hi if I see her, never seem to get the same consultant twice in a row nowadays. Although I heard from Dr Garg recently, (emails) regarding holidays. She gave thumbs up as I am in remission! ;-).

Regards
Karen H
x

Hi Karen, said it before, dread those days before clinic, just like you.
Best of luck, if you see Dr Barton say hello from me.
Hope it goes well on Thursday.
Regards
Tony F

Hi, when I was having my stem cell transplant the hospital I attend have a six roomed isolation ward with private facilities ‘5 star’ there was a gent from the Middle East having a SCT, according to my nurse the whole treatment including harvest was £250,000.
Hope that helps
Regards
Tony F

Eve, so sorry. I am thinking of you both.
Regards
Tony F

Holly, sorry that you have joined this club, but it is the best place for sound advice and guidance. I was diagnosed in 2012, went onto the myeloma XI drug trial! it is all tablet form! no hospital stay. This was followed by a stem cell transplant. Not trying to tell you that it was easy, but I did it, so have many others. My paraprotiens have…[Read more]

Hi, in March 2012 the day before my wife and I were due to fly to Africa for a months safari my GP phoned to advise me not to go, a few days later at the haematology dept at Leicester Royal I was told I had myeloma. I have had no bone or kidney problems. I went onto the myeloma XI trials, and in early February 2013 had a stem cell transplant. At…[Read more]

Hiya folks, I attend the Leicester Royal Infirmary, I’ve only ever had one BMB. As a matter of course the hospital give the patient gas and air, worked a treat for me and speaking to others they were the same.
Odd how they all seem to work differently!
Regards
Tony F

Dear Sarah.
Sorry to read your sad news. Such an eloquent and beautiful post.

I can only add my sympathies to you and your family and wish you the very best for the future.

Thinking of you especially for next Tuesday.

Andy xx

Hiya.
When I was first diagnosed I was in and out of hospital frequently and didn’t think I would have very long. Talking about my diagnosis with anyone who’d listen helped me get everything into perspective and helped he come to terms with my myeloma.
We were married 3 days after the word myeloma came into our lives. Like I said previously the…[Read more]

Hi David.
Yes PIP is the replacement for DLA. All new applicants go onto PIP straight away and DLA claimants will be migrated over in due course. It’s all a money saving exercise that’s costing hundreds of millions to implement and the only way they seem to save money is to cut the benefit payments and delay the payments as long as possible.
Oh…[Read more]