Hello-

Don’t be to down hearted I had a SCT in 2005 and it only worked for just over a year but since with the help of the various chemo available i’m still getting on not to badly some of them worked some didn’t, Velcade gave me the longest remission, unfortunately at the moment I am waiting for the latest one “Panobinostsat” which becomes…[Read more]

I always get a copy of letters to my GP and normally within a week of my consultation,  as you say they are very useful and I have to say they are always a good report on what was discussed. I must say I do miss some things said so it’s always why I have a second pair of ears (my wife that is indispensable ) but yes the letters are yours to have…[Read more]

Hello Jeff

I did go to Day Case unfortunately my consultant is away but they got my records checked me over but as I am due to see him next Tuesday gave me some oramorphand and MST i must say it has taken the edge off the pain so it was worth going and next week i can sort it out proper.
Thank you foryour comments ,most helpful
Regards. Pete

Hello AndyG

Just to let you you pom has made me quite ill and have had to stop, but my consultant has a plan B thank goodness, as my MM has started to get active again with pains in my arm and shoulder.

as this new drug is not available until April I am just on Dex which I tolerate quite well and don’t get many side effects except feeling a bit…[Read more]

I was only on 2mg to start with, but they really did cause me serious side effects as did the other tholidamide base derivatives.

So now I wait to see if this new drug due soon will be better.

Hi Jan unfortunately the pom really made me unwell even put me I’m hospital for a week on a antibiotic drip because something they call CRP was showing I had an infection, and my appetite has gone and lost 2 stone since I started pomalidamide. But I really have to wait to see my consultant in 2 week then decisions have to be made. I am only on…[Read more]

Hello Sarah I wish you well on your treatments, I have to say that I have had quite a few years of remissions from some of the drugs, my biggest disappointment was that my SCT only lasted about 14 months but Velcade actually gave me 4 years, but only had various results from Bendamustin, and lenalidamide, and now it seems I can not tolerate…[Read more]

Yes Ann Lynn perhaps I am being over dramatic, I will really know more when I see my consultant in two weeks time, I don’t really want to carry on with the pomalidamide if it makes me feel like  I do, so I hope he can come up with something else. Thank you for your reply I will try and keep my positive head on.

Peter

Hi Tina

Yes I know how you feel,  but having MM is like being on a roller coaster as far as and when it likes to get active again I am sure your consultant will have a plan , I have been on this roller coaster for over 12 years and sometime I feel the ride is coming to an end when my consultant comes up with another plan so keep positive, I try…[Read more]

Hello Avril

It really is worrying when there is a lack of feedback, perhaps you should try and see the myeloma nurse most haematology dept  have one and normally you should know who it is. I have a phone no of mine who I can contact if I have any problems or queries.

Thank you everyone for all your support,

Yes Andy my consultant is really switch on, he has now been treating me for 11 years, its not always a easy ride as you know but I always feel he does the best for me. i’m afraid I am one of those that ask many complicated question i just put my trust in him, he always explains when things are going good o…[Read more]

Happy new year all,

Looks like my bloods have recovered to start cycle 2 of pom, but he’s has cut the dex in half , the only side effect I was getting was bad night sweats, strange with most users it seems to keep them awake but I don’t to be getting that problem yet, in fact it makes me quite tired. Still only time will till the further down the line