[colpotParticipant]

Hi all.
Thought I would let you know I am now on my 41st course of Revlamid< my consultant has reduced my dosage from 25 to 15 mg per day and so far so good.I feel really good for a change,I have been on reduced dose for 2months now so fingers crossed.

Keep smiling

colpot

[BADGERParticipant]

Hello Colpot

that is a brilliant response 41 courses how many years is that a lady inmy clinic has been on it for three years like you she has a reduced dose now
fingers crossed this keeps working for you all

Love Jo:-) 😉

[brochoParticipant]

Hi Clopot brilliant result with Revlimid!! Do you have any nasty side-effects with it and do you take Dex as well? long may it continue love Bridget x

[susannahParticipant]

Hi Colpot My husband has been on Revlimid for 19 months, and we thought he was doing well. Sadly it stopped working a month ago and now he has been taken off it. Thinking positive he has been refered back to Prof Russell at Nottingham city, from our local hospital, to see what next, We go this Friday so fingers crossed. Fingers crossed for you, hope it works for another 41 courses

Love
Sue

[tomParticipant]

Hi Colpot

Thats good news 😀 and am sure you are very happy with the reduction.

Its great when it all falls into place 🙂

Tom "Onwards and Upwards"

[MinParticipant]

Brilliant news Colpot and long may it continue.
Peters venture into Revlamid started out well then sadly stopped after 4th cycle. But life goes on. It never fails to amaze me how everyone responds differently to these drugs.
Just goes to show we are all different in every way ,under the skin too.
Min

[brochoParticipant]

Hi Sue just want to wish you luck for Friday I hope they come up with a good treatment plan . Crossing fingers toes and anything else for you love Bridget x

[susannahParticipant]

Hi Bridget Thanks x

Sue

[WolfParticipant]

Hi all,
Just goes to show how differently we all react. I'm on my 17th course and over 8 years since diagnosis. Started last year on 25mgs + Dex at only 10mg. I was on a strong pain relief regime at the same time which may have confused my consultant as to the cause of my severe disorientation attacks. Anyway the 1st 3 months had dramatically cut my paraprotein count to the lowest it had ever been but a month off saw it climb again quite rapidly. Resumed Revlimid at 15mgs + Dex at 10mgs. This stabilized things and lowered the pp count. Then my white cell count went wrong so we cut Revlimid to 10mgs, same Dex and this has working well for 4 months with pp count steady at an all time low.

Side effects: bad for 4 days of Dex,hyper in the morning then insomnia, and worse for next 3 days with a steroid hangover (but I've always reacted badly to Dex) then nothing worth mentioning for the rest of the cycle.

[BADGERParticipant]

Hello Wolf

It seems you have been doing very well on Revlimid and a low dose of DEX I always wonder if we need these massive doses of DEX they seem to give us
did you have a SCT at any time in the last 8 years
thanks for posting
Love Jo 😉

[WolfParticipant]

Can't complain…I'm 73 now. Yes sct in my 2nd year. This gave me nearly 3 years no treatment. Then had Velcade for 4 courses: stopped when I developed really bad peripheral neuropathy which left me permanently on Pregabalin. Again I had 18 months without treatment, then started Revlimid. With hindsight I should have started sooner. My pp count was very high and I had a serious onset of myeloma symptoms including collapsing sternum and 2 cracked ribs which may have been preventable. I wondered if there were budget implications or some other non-medical reason for holding back…one never knows and my lot are very tight-lipped if you ask "political" questions!!

[GeorginaParticipant]

Hi Colpot

That's great news. My mum has just started revlamid this week but on half dose (25mg every other day) as her counts are too low and they are not sure if they will cope with it. Unfortunately, they are not very optimistic about it working as her myeloma is very out of control at the moment. I'm just keeping everything crossed that it works.

I hope it carries on working for you for some time to come and will keep everything crossed for you.

take care
Georgina x

[tomParticipant]

Hi Colpot

Am sure your story will give us al hope that the light is at the back of the tunnel, well done and good luck

Tom "Onwards and UpwardsW

[helenpageukParticipant]

Hi all (hi again Tom)

My name is Helen.

My mum has recently been diagnosed with Myeloma and has been put on the RCD trial and has just completed her second cycle of the 20 tablets in the morning. She has been doing great and is incredibly positive however today she has had her first bad day. She has had severe diarrhea today and is incredibly tired all the time.I have just spoken to her on the phone and her voice sounded very croaky. Is this normal? I figured that her body may be recovering from the sheer amount of medication that she has taken over the last 4 days??

Take care all.

Helen

[helenpageukParticipant]

Me again. Just spoken to dad and he said mum has been confused today and has slept all day pretty much. Is this normal? Thanks in advance
Helen x

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