[susannahParticipant]

Hi Keith Really good news to here that Velcade is working for you

Best Wishes
Sue

[susannahParticipant]

Hi Henry My husband was diagnosed at 45years old, that was 15years ago, Hes had 2 SCTs the first lasted 8 years the second about 4

Good Luck
Sue

[susannahParticipant]

Hi Debs

My husband Michael takes his Revlimid about 5pm, when he first started he used to take it in the mornings and he was asleep most of the day, hes still very tired but not quite as bad.

Hi Gaye funny you should mention the Thalidomide and the effect it had on unborn babies, we were in clinic a few months ago and this guy came in with only one arm, when we strted talking it appeared his mum had taken Thalidomide during pregnancy and he was born without his right arm and hand. He to had MM and was being treated by Thalidomide! He said he didnt have a problem with it.

Best Wishes
Sue

[susannahParticipant]

Hi Wolf Thanks my husband will mention Pregablin when we get the appointment at the pain clinic His PPs have gone fron undetectable to 3 but his consultant says she is not to worried as Michael was on 10mg before his 3months off, and what she says is that the Revlimid has to get into his system again, so she will wait to see if there is any change when we go back in 3 weeks. She did say because of the problems he had on the higher dose she would be loathe to increase it again, so watch this space.

About the bloods Michael has his done at our GP surgery about 4 days before his appointment, and then we get all his results even his PPs, but what with all the changes in the NHS I dont know how long that will carry on

Best Wishes
Sue

[susannahParticipant]

Hi Wolf My husband has been on Revlimid now for 15months, he started on 25mg with dex. Last August he became totally exhausted and considered stopping treatment as he felt so ill,his consultant decided to give him a treatment holiday for 3 months ( the Revlimid had reduced his PPs to undetectable levels) He restarted again in November as his PPs started to creep up again. She has put him on 10mg without the dex, he is still tired but seems to be coping better. He to had to come off Velcade after 4 cycles because of PN which causes him quite alot of pain, we saw his consultant on Monday who has refered him to the pain clinic , he has taken gabapentin for months but it seems to have stopped working

Take care
Sue

[susannahParticipant]

Hi Min My name is Sue its my husband Michael who has MM and has since the age of 45. That was 15 years ago, hes had 2 SCTs Thalidomide, Velcade and now hes on Revlimid and has been for approx 15months We live in Nottinghamshire and treatment is between our local hospital Kings Mill and Nottingham City.
By the way love the pic of your dog, we have a chocolate lab called Lucy,
she knows more about me and MM than anyone else love her to bits

Love
sue

[susannahParticipant]

Hi Gaye and Tina Just wanted to wish you Gaye and Patrick all the best I have always followed your posts closely,as we know only to well that we could soon be in the same boat. Pomalidomide is this a thalidomide based drug, ive not heard of this one? Michael and I are back at the hospital tomorrow his monthly visit for Revlimid (we hope)

Good Luck
Sue

[susannahParticipant]

Hi Joanna My husband has been on Revlimid for some time now. The last time we saw his consultant she did discuss options with us as we were concerned Michael is running out of them, like yourself he has had 2SCTs Thalidomide twice and Velcade. she said that there are other options availiable and would discuss them with us as and when. So have a word with your consultant,
we have always had a problem with funding and had to fight for Velcade and Revlimid so dont take no for an answer
Keep fighting
Regards
Sue

[susannahParticipant]

Hi David Just wanted to add Michael and I used MIA 2 years ago he was on Velcade at the time we paid £30 and that included flying me home if there were any problems
Regards
Sue

PS We only went as far as Southern Spain
to see my brother

[susannahParticipant]

H Keith So sorry to hear of your relapse, just wanted to wish you all the very best for Monday. Ive always appreciated your kind words over the months,and now its my turn from Michael and myself good luck

Regards
Sue

[susannahParticipant]

Hi Joanna Im sorry to hear of your problems with Revlimid.My husband has had his dose reduced from 25mg to 10mg with no steriods and thats a bonus for both of us! and things do seem better. He was on Revlimid for a couple of cycles before it settled down any, apart from the rashes and tiredness he had a couple of nasty infections but fingers crossed he does seem ok at the moment. Like yourself Michael has had 2 SCTs, velcade and Thalidomide so we to are aware options are running out

Take Care
Sue

[susannahParticipant]

Hi Jo my when my husband first went on Revlimid he to had a rather lumpy red rash on his face and neck, his consultant gave him a fungal treatment which helped. After a few weeks it did go. He started taking Revlimid agagin just a few weeks ago and the same thing has happened but not as severe.

Regards
Sue

[susannahParticipant]

Hi Amelie Sorry I havent replied before but I have only just managed to log on to the new site, says alot for my computor skills. My husband Michael has been on Revlimid for 13 months now, the worst side effect is the extreme tiredness. His pps were undetectable after a few months, and as he was feeling exhausted for most of the time his consultant decided to give him a treatment holiday , he had to restart again in December after a 3month break as his pps went up to 2 He started with 25mg every day for 3 weeks then a weeks break, he now has 10mg every day for 3 weeks without Dex
and he has felt much better

Hope this helps
Regards
Sue

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