Hi Helen and Mavis.

I’m doing okay thanks.

Helen I’m on a Panobinostat regime at the moment. I was on MUK 8, Ixazomid, but as usual with me it didn’t work. I’m finding Panobinostat, Velcade and Dex a bit challenging but it is keeping me stable at the moment. You can only have 16 cycles of it and unusually the cycles are only 3 weeks long. I…[Read more]

Hi Helen.

Well I survived our trip to Belgium without having any major problems. Though I had to go straight to the day unit before going home for my regular appointment. Privigen, blood tests and drugs pick up. I’m now on cycle 4 of MUK 8 the best I can say it’s doing is keeping me stable.

Sorry to read that Daratumumab is not working for you.…[Read more]

Hi Susie,

as Jan says there is no hard and fast rules about the level of PPs when to restart or start treatment. PPs are only one factor out of several that are taken into account.

I have read posts were a tiny rise in PPs, as little as 0.2, from 1.5 has caused serious problems and I’ve also read posts of patients having well over a reading of…[Read more]

Hiya Helen

I’m doing ok at moment, just returned from a week in Kefalonia, I’ve just started cycle 3 of MUK 8. Not much movement on the PPs front yet. I’m feeling ok though just got the usual UTI that seems to be a constant companion of mine. Hopefully going to Belgium later in the month.

I’m glad that the Daratumuab is seemingly keeping you…[Read more]

Hi Stephen.

Are you on Pomalidomide or the MUK 8 trial? On Pomalidomide my PPs came down slowly, I think, over the first few cycles. To about 8. Then gradually rose to the mid teens where they hung about for about eighteen months then began to rise again.

When I as on Revlimid nothing had for the first few cycles then they added Cyclophosphamide…[Read more]

Hi Helen, Maureen,

Glad to hear  from you. I too are at the end of my Pomalidomide journey. I managed 40 cycles before it was stopped. Bendamustine or a trial was mentioned as my only options. Two trials were mentioned MUK5 and MUK8 unfortunately MUK5 had reached its target number of trialists, I think that was the one you’re on Helen, but I…[Read more]

Hi all.

Unfortunately when the forum was changed a few years ago it was virtually unusable for quite a few members. Messages wouldn’t post the kept disappearing and there was logging in problems too. These problems took time to resolve and by the time they were resolved an awful lot of members had move on to the Facebook group.

I agree with…[Read more]

Hi Paul

Welcome to the Myeloma club. I’m sorry you are joining us as myeloma is such a horrible disease. I hope the biopsy went ok and wasn’t too painful. I’m due one in the New Year.

The first thing you’ll notice is that no two patients have the same journey treatment and outcomes are very much an individual thing. There’s nothing much I can…[Read more]

Hi Scooby.

I was prescribed tramadol by my GP for my spasms.

Every day is a gift.

Andy

Hi Finn,

I don’t know what is available to me till I see my consultant on Thursday. The discussion with my specialist nurse was just a bit of speculation. I’ve only had a response from two drugs to date, Revlimid and Pomalidomide, nothing else has worked for me.

Hi Jan,

My scalp is healing nicely thanks. Though my thigh where they took the…[Read more]

Thanks Rebecca.

What a lovely post it’s given me a real boost thank you xx.

Well to my latest news. My PPs have continued to rise and all discussions are now about what happens next. My specialist nurse and I had a discussion about where I maybe heading when I picked my latest round of drugs up. It seems like there may be a few options open to…[Read more]

Thanks Rebecca.

What a lovely post it’s given me a real boost thank you xx.

Well to my latest news. My PPs have continued to rise and all discussions are now about what happens next. My specialist nurse and I had a discussion about where I maybe heading when I picked my latest round of drugs up. It seems like there may be a few options open to…[Read more]

Hi Susie.

The hospital were I get my myeloma treatment charge £3:00 for 12hours after a 20 min free period. The other hospital I’m frequenting lately is free for blue badge holders which I have.

I get my bloods done at my GPs practice now to save a trip to the hospital and £3:00 lol so now I’m only at the hospital once every 28days. Unless I h…[Read more]

Hi Jeff.

I didn’t know until recently that it was a notifiable condition. Fortunately when I was on Velcade, two cycles, I didn’t get it bad just a little loss of sensation in my fingers and toes.

Every day is a gift.

Andy xx