susannah replied to the topic Admitted yesterday. in the forum Carers 13 years, 5 months ago
Hi Min so sorry to hear Peter is having a bad time in hospital, i remember when Michael was in you try and hold things together for there sake, but then you have to go home and hope they are being well cared for.I to agree about the dogs Ihave Lucy a chocolate Lab and we walk miles together Im sure people think im mad because im talking to her all…[Read more]
susannah replied to the topic Bendamustine Clinical Trial in the forum Treatment 13 years, 5 months ago
Thank you all for replying, thanks Min the consultant did mention Melphalan
but you know what its like they seem to through so much at you, and I dont know about the rest of you, but sometimes you just dont take it in. Its been a tough few days and we both had a cry this morning ( something Michael never does) we know theres not many options…[Read more]
susannah replied to the topic 2nd SCT in the forum Treatment 13 years, 5 months ago
Hi Keith Its good to here Velcade has done the job for you and youre on track for a second SCT
Good Luck and Best Wishes
Sue x
susannah started the topic Bendamustine Clinical Trial. in the forum Treatment 13 years, 5 months ago
Hi my husband Michael came off Revlimid about a month ago as it had stopped working and his PPs had started going up. As there were no more treatment availiable at our local hospital we went to Nottinghma City on Friday were he was accepted on a clinical trial combination of Bendamustine Thalidomide and Dex. As its a trail the treatment is…[Read more]
susannah replied to the topic 3rd Relapse? in the forum General 13 years, 5 months ago
Hi Michelle I havent posted for a while but i do read posts most days. Sorry to hear of your mums setback, but its good shes back on Revlimid. My husbands just be taken off after 18months we see his consultant Friday to see what next? I will be interested to know what your mum has next
Take Care
Sue x
susannah replied to the topic Revlamid in the forum Treatment 13 years, 5 months ago
Hi Bridget Thanks x
Sue
susannah replied to the topic Revlamid in the forum Treatment 13 years, 5 months ago
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,…[Read more]
susannah replied to the topic Final Goodbye to Patrick in the forum General 13 years, 6 months ago
Hi Tina Patrick is at peace now from this b illness. You are so brave offering support to others, but im sure after reading Patricks posts that is what he would have wanted
Love
Suex
susannah replied to the topic Quietly Panicking! in the forum General 13 years, 6 months ago
Dear Gaye Im so sorry to hear you are not to well,i do miss reading your posts. You have always been so supportive over the years, i only wish you lived near by and i could pop in and support you
Take care
love
Sue
susannah replied to the topic My brave husband Kevin has finally lost his battle with myeloma in the forum General 13 years, 6 months ago
Dear Susan Sorry to hear about Kevin, my husband Michael and i followed his posts on the old sight, he was such a brave man
God Bless You
Sue
susannah replied to the topic My Wonderful Husband Patrick in the forum General 13 years, 6 months ago
Dear Tina I was so sorry to here about Patrick, you must feel totally empty and lost, i really cant imagine what you are going through my heart goes out to you . Cherish the good times Tina even MM cant take them away
Thinking of you
All my love
Susannah (Sue)
Would have posted sooner but could not access the sightx
susannah replied to the topic Need to offload in the forum General 13 years, 6 months ago
Hi Lorraine Just wanted to let you know, my husbands on Revlimid and has been for been for the last 18months, last August or there abouts he became so exhausted that he had a treatment holiday for 3 months, it did him the world of good and has tolerated it much better since,
Take care
Sue x
susannah replied to the topic Halfway point in the forum Newcomers 13 years, 8 months ago
Hi Keith Really good news to here that Velcade is working for you
Best Wishes
Sue
susannah replied to the topic Hello New Arrival To MM Club in the forum Newcomers 13 years, 8 months ago
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
susannah replied to the topic Revlimid – When to take it in the forum Treatment 13 years, 8 months ago
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…[Read more]
susannah replied to the topic Revlimid & Velcade in the forum Treatment 13 years, 9 months ago
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…[Read more]
susannah replied to the topic Revlimid & Velcade in the forum Treatment 13 years, 9 months ago
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…[Read more]
susannah replied to the topic Who the heck are you. in the forum Off topic 13 years, 9 months ago
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…[Read more]
susannah replied to the topic Pomalidomide in the forum General 13 years, 10 months ago
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…[Read more]
susannah replied to the topic Revlimid Maintenance Therapy in the forum Treatment 13 years, 10 months ago
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…[Read more]