Dear Eve
So sorry hearing this news Slim put up a valiant fight. Our thoughts are with you and please take care of yourself.
Paul & Gayle xxxx

Hi
Pauls been on maintenance Rev this is his second month, He is on 15 mg daily 21 days and 7 days off. He is taking it along with soluble aspirin for the blood clots. So far hes ok. Hes had 6 courses of CRD feb – July of 25 mg so his system was used to it. He hasn’t had any problems so far except very dry skin. He will be on it as long as his…[Read more]

Hi Stephen
No-one has the same response to treatment as others so I just go with the flow. My pps went up to 49 when I originally had CRT and then when I had my SCT and my pps stayed at 5 and never zero. That lasted 18 months and then went on velcade last Jan 2013 3 cycles and my pp went down to 7 from 48. That lasted 6 months before rising…[Read more]

TEST

Hi Sarah & Scott
It is a good place for info isn't it? I too am in a delicate situation.I relapsed in Jan had Velcade & dex till April but suffered so much with pn that they stopped it and had one course of rev & dex.My pps went from 49 to 5 so on 7th May went into hospital for the chemo priming for second sct. Had 8 gcsf injections but on Sun…[Read more]

Thanks Vicki
I was warned it could fail – didn't realise it could fail twice! I now everything crossed for June. I know my CD34 was 3 and they could only do transplant when it was 8-10, so I was way off. Shame they can't do a test before you have to go through priming chemo/injections.

The funniest thing was it wasn't my head hair that I…[Read more]

Thanks Tom, will also save me lots of money on haircuts/shampoos etc 🙂
Although I am now spending money on scarves and hats – and suncream for my head – a new novelty
xx

rebeccaR

Harvesting for a rainy day sounds like a good idea, if I'd known I could of done that I would of. I was on Cyclophosphomide through my cycles – I was always told hair may stay/thin/fall out, but it stayed. I think the priming CYC is 4 times stronger which is why mine fell out over a few weeks, I also pulled/brushed it out, ironically I…[Read more]

Thanks Ange, sorry things are progressing – but at least you are being closely monitored. xx

Dear Sue
Our thoughts are with you at this sad time, you have wonderful memories of the good times, Keith will be sadly missed.
You take care of yourself
Paul & Gayle x

Hiya David
I hope the Velcade works well for you. It got my pp's down from 49 to 5 in 12 injections but unfortunately I have had to stop it as the pn got so bad I couldn't stand it.I have been off it for two weeks and my feet havent come back to normal yet. I am now on Revlamid & dex and waiting to go in for a second sct.
Good luck
Ozzy

Hiya Eve
Dont know how to private email you so answered question by here. I don't know if I am on any trials but treatment was Velcade and Dex. They hit the pps down from 49 to 5 but the pn is so bad this week they have stopped this treatment. My feet have suffered and I cant sleep with them tingling and aching. My consultant is contacting the…[Read more]

Dear Eve
Its gutting when the remission is over and the myeloma comes back I know because I am in the same boat as Slim. If the Velcade worked the 1st time it might do the same again. It seems to be working so far for me and it has hit the pps from 49 down to 5 so dont give up hope.
Ozzy x

Hi Jean
My hair was coming out everywhere and it was all over my pillow I mentioned it to the nurse and she shaved it all off – I looked like Kojak and when Gayle came to visit that night she screamed. It soon started growing back and by 2 months later I looked like I had a curly perm and thick with it.
Best wishes
Ozzy

Hi Trish & Peter
I have had 8 injections of Velcade and start my 3rd course tomorrow. I had a very dicky start and have had a cold since January and am now on my 3rd course of antibiotics. I also take Dex and has your doc given Peter anti- viral tabs I have been taking these from the start.I have found that I have a temperature either the night…[Read more]

Hiya

Thanks all.I did start having the dreaded PN , very odd feeling-difficult to explain my hands felt things as hot whilst my arm would feel it as cold and tingling in the tips of my fingers. I had 4 velcades in the first two weeks and had a week off and then they reduced it to one a week and this week will be my 4th of this session. I don't…[Read more]

Dear Sue
Thinking of you and your family at this sad time.Hope all goes well on Friday – a celebration of Michaels life. Your take care of yourself.
Love from Paul & Gayle xx