Hi All

I have had a blood giving day today..they took a whole armful!! I have my first appt for the Haemachromatosis on Friday so repeat of all blood tests required and  going for another scan tomorrow. Have to say I find it really hard that since March 2014 I have become this person whose life revolves around hospital appointments and…[Read more]

His kidneys must of recovered well because they don’t usually prescribe CDT if there’s any kidney problems. Velcade is the usually the drug used for people with kidney problems. Steroids can bring on diabetes.

Every day is a gift

Andy xx

Wow Fiona.
Philip has been through the mill. Like you said in your original post he’s had no respite.
It’s strange how different levels of PPs cause problems. I read online of someone who gets problems when they go above 5!
I was put forward for an Allo unfortunately the only match they found wasn’t quite good enough. Luckily I got 22 cycles out…[Read more]

Hi Fiona.
Seems as though I read something that wasn’t there. I’m sorry.
Why is the doctor pushing Philip along the Allo route isn’t an Auto SCT an option?
What was his last treatment? Was it Velcade because that in some cases works well at getting the paraproteins down but doesn’t keep them down for very long.
Which ever route Philip goes down I…[Read more]

Hi Loopyladye.
First of all welcome to the forum though I know you’d rather not need to be here.
I know what you mean about the relief of diagnosis. I had a bad back for 18 months before I was finally diagnosed and it was a relief to know I wasn’t imagining it and it had a name then came the shock as it sank in I had an incurable cancer.
I was in…[Read more]

Hi all.
I agree with all that Chrissie and Rebecca say.
Though I’m not as optimistic as Chrissie about a daily tablet to maintain our condition. My reason? It’s because myeloma isn’t a single disease or maybe that it’s not caused by a single entity. That is why we all have different journeys and react differently to different drugs. Genetics are…[Read more]

Hi everyone.
Welcome to the new newcomers to the forum.
Nikki – myeloma is cancer of the bone marrow, plasma cells in reality. They go wonky, for want of a better word, and start producing paraproteins, which serve no useful purpose.
They compete with your white cells I think and this is why you will become susceptible to infections and find it…[Read more]

Hi Fiona.
I was diagnosed Oct 2011 with my PPs at 49 the lowest my PPs have been was 11.4 but not for very long.
Never been in remission and went through all the standard treatment in a few months none of them worked. Then went onto Revilimid which wasn’t widely available at the time and got 22 cycles of stability before that ended. I’m now on…[Read more]

Hi Maureen.
I can understand what you mean about using up the treatments available too quickly. I got through most of the standard treatments in six months and none worked. I was put on Revlimid as a last hope, it wasn’t standard treatment then, and after a slow start plus the introduction of cyclophosphamide it got my PPs down to the mid teens.…[Read more]

So glad it is good news Susie, fingers crossed all well at your next monitoring. Can they sort out the compressed discs and compression fracture?

Karen

Hi Marge

well I have been on the Velcad for 5 months now, it stopped working on month three so i have had Cyclophosamide to the mix side effects ?? am tired and weary more so as the other one was added,apart from that Not much else as yet, to be fair its ben kind to me 🙂

Good Luck with it

Tom Onwards and Upwards xx

Hi Deborah

I had mine in 2009, got four years out of it and that was great, yes I was bloomin cold in the room should have taken my throw in 🙂

Mouth wash now I used bottles of it every time i went to the loo, walked past it thought about the loo I mouth washed (they will give you more lol) , cant emphasise enough to use moth wash as often as…[Read more]

Hi David.
You do seem to be giving the medics a run for their money. Boring out your prostate doesn’t sound like fun! and now a lump of flesh to be removed as well! Makes having you two teeth extracted sound like a walk in the park.
You’ll be glad when July is over.
I get to see my consultant at the end of the month I wonder what she’s got in…[Read more]

Hi Susie, so glad to hear MRI scan not as bad as you had feared. Fingers crossed for your results.

Oh Sal, what a waste of your time, you must have felt very frustrated.

Best wishes Karen

Hi,

We have adopted a “need to know” attitude with our daughter who is now 7. Last year we bought the Kelsy book which she read and refers to sometimes. The illness has affected her, especially when I went into hospital for a few weeks at a time and she keeps asking me or rather telling me to be careful so I don’t break any bones. On the whole…[Read more]