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 Rebecca, hope I can keep carrying on for a long time to come!

I find some of the posts both on here and on the Facebook Support page very sad. MM should not have entered EmmaJ’s life at 38 years age, thats not right. The same with many others who post on both sites, they are going through some tough old times.

I know its very scary but there…[Read more]

Emma, its not fair that someone so young should have to cope with MM. But age is on your side! You’ve read from Rebecca of her experiences.

I am a lot, lot older than you. In fact I had a second SCT at 72! 18 months down the line I am drug and treatment free, we travel, quite a bit, go to concerts, off to see Queen in London in December, and we…[Read more]

Peter, thats a very good question, where do the pp levels have to reach before treatment is triggered.

I had my second SCT in March 2016, pps were undetectable for ages, no drugs no treatment, currently they are at 2.6, consultant didn’t seem that bothered, she says that readings below 5 are unreliable! Come back in 3 months time, with a 6 week…[Read more]

Sarah, maybe this will help.

Why not contact the myeloma nurses at Myeloma UK.

They are very knowledgeable and understanding.

Best of luck

Tony F

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]

Hiya Steve, just read your post, you call yourself leicslad, does that mean you live in Leicestershire. I run the Leicestershire & Rutland  Myeloma Support Group, my email address is:

tony.farquharson@btinternet.com

If I can be of help please email me.

Regards

Tony F

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 Susie, I had 26 months of no treatment, no drugs after my first SCT. My pp’s never really dropped below 2, when I relapsed they climbed very slowly, got to about 8 before treatment was restarted. Pp’s were reduced to around 2 when I had a second SCT.

Hope the above helps.

Tony F

Evening Teresa, did I understand from your initial post that Daves brother died of myeloma? Interesting, I didnt think that this disease ran in families. Sounds to me that your GP was very alert and you were given an early diagnosis. Daves initial treatment seems to have worked well if you are being prepared for a stem cell harvest. Hope that all…[Read more]

I had 26 months remission from my first SCT so when I relapsed I was offered a second SCT. After treatment with my pp,s down to 2 I had the second SCT. Managed it quite well and returned home after 14 days, took a while to recover but am now a year down the line, my pp,s are undetectable, officially in remission, no drugs, no treatment, no…[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]

Jimbow…….you must be very proud of your dad, he is certainly a fighter and he deserves a long remission.

wish him the best of luck, and please keep us up to date.

regards

Tony F

Hope all three of you handle your next round of drugs and that they remain effective. I don’t often comment these days, there are times when I need to escape from Facebook Support and discussion forums and try to break away from the word myeloma. Easier said than done.

Pre myeloma days we lived in Keswick, wonderful times, wonderful area, my…[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]