andyg and tom are now friends 5 years, 12 months ago
andyg replied to the topic I'm still here! in the forum General 6 years, 10 months ago
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]
andyg started the topic New drugs article – and me -*READ* in the forum General 7 years, 3 months ago
My fame? Is spreading.
Well worth a read it’s our future.
Every day is a gift.
Andy xx
andyg started the topic New drugs article – and me -*READ* in the forum General 7 years, 3 months ago
My fame? Is spreading.
Well worth a read it’s our future.
andyg replied to the topic I'm still here! in the forum General 7 years, 3 months ago
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]
andyg replied to the topic P P, s v treatment in the forum General 7 years, 5 months ago
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]
andyg replied to the topic I'm still here! in the forum General 7 years, 5 months ago
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]
andyg replied to the topic The end of my Pomalidomide journey. in the forum Treatment 7 years, 6 months ago
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]
adriwest1 and andyg are now friends 7 years, 6 months ago
andyg started the topic The end of my Pomalidomide journey. in the forum Treatment 7 years, 7 months ago
Hi All,
well after 40 cycles of Pomalidomide I’ve had to say goodbye to Pomalidomide. It’s been a good journey with minimal side effects though there have been a couple of serious bumps along the way. I’m due to start a trial early next month after a little holiday in the lakes. Fingers crossed the trial works and I get a bit more time to have a…[Read more]
andyg replied to the topic I'm still here! in the forum General 7 years, 7 months ago
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]
andyg replied to the topic An improvement to posts stats? in the forum Off topic 7 years, 10 months ago
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]
andyg replied to the topic RE: Newly Diagnosed in the forum Newcomers 7 years, 10 months ago
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]
andyg started the topic An improvement to posts stats? in the forum Off topic 7 years, 10 months ago
Hi Web Team.
Firstly I must tell you it’s my Dex night so I may ramble on a bit.
In my chemo muddled brain I seem to remember talk of adding to posts how many times that particular post had been viewed. I may of imagined that but I personally would think it would be a good idea as it would help posters realise that what they write is not being…[Read more]
andyg replied to the topic Muscle spasm in the forum Newcomers 7 years, 10 months ago
Hi Scooby.
I was prescribed tramadol by my GP for my spasms.
Every day is a gift.
Andy
andyg replied to the topic A little update – seems a lot can happen in a short while. in the forum Treatment 7 years, 10 months ago
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]
andyg started the topic My 15 minutes of fame. in the forum General 7 years, 11 months ago
As Andy Warhol said we’ll all be famous for 15 minutes 😉 I guess this was mine.
Every day is a gift.
Andy xx
andyg replied to the topic A little update – seems a lot can happen in a short while. in the forum Treatment 7 years, 11 months ago
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]
andyg replied to the topic A little update – seems a lot can happen in a short while. in the forum Treatment 7 years, 11 months ago
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]
andyg replied to the topic Hospital Parking in the forum General 7 years, 11 months ago
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]