Hi Ali
If all bloods are all ok this is a good thing, means the bone marrow is functioning properly and saves starting on the treatment route just yet. The treatments have to be kept in reserve for as long as possible as individually we don’t know how quickly we will work our way through them all, but the plasmacytoma needs fixing so close review…[Read more]

Hi Izzie
Good luck with the transplant, hope you have an easy ride. Keep drinking as much as possible!
The zometa is usually stopped for a few months over the transplant time, I restarted mine at the 3 month mark on the myeloma xi trial.
Love Helen

Hi Jan
The mystery of the myeloma numbers! Long may yours stay down. I went back for more to be taken today and have my fingers firmly crossed.
Hi Stanley
Welcome from me and thank you. I hope you sail through the treatment and get many years of event free time. Try not to worry about tomorrow, just get the most out of every day.
Hi Andy
Sorry…[Read more]

Dear Rebecca
Thank you, ‘the messing with ones head is a serious problem’ and I consider myself relatively lucky in this direction! I have been angry a lot of the time! I find that the inability to plan more than 4 weeks ahead crucifying sometimes, and I get very jealous of people who book things or send me invitations that are years away!
Also…[Read more]

Hi Maureen
Thanks.
I have no idea! I was one of the unfortunates that got huge problems with the SCT that I think they are a bit reluctant to jump in again, my numbers also started rising slowly only 14 months in, so not a brilliant response. They say they will go for it again if needed though.
I think it will be pomalidomide but I haven’t had…[Read more]

Golf then! ….Hope you have a lovely break
Helen

Hi Rebecca
I’ve not heard that but it’s a possibility, my consultant is thinking I’m really only responding to the steroids :(, hence the rapid drops and quick return. Hey oh it’s just wait and see! I went from 690 to 60 in one cycle and was down to 12 after 3 months. This time it was 155 to 40 in one go! The ratio has never been right until…[Read more]

Darlington? Do you have any plans to go any where else? You could have a trip to Richmond or Northallerton for lunch.
Helen

Hi Ali
That’s all right then! I’m afraid that I’ve become a lot more ‘blunt’ recently …. I used to be fairly tactless, but now it’s total!…… I blame the disease!! Has your mum heard anything yet?

Hi Mavis good to see you are still in remission. I only just requested early retirement, it hasn’t happened yet, I’m hoping to go another few…[Read more]

Hi DickB
Sorry your results aren’t as good as you’d have hoped, but the advice you have had so far sounds reasonable.
And Rebecca… I too have no M spike, only IGA lambda light chains, when I was diagnosed they were at 690 only but I was dreadfully anaemic with 40% myeloma on bmb.
My response to induction treatment was quick and I went into SCT…[Read more]

Hi Izzie
First time I’ve been called a couch potato!
But yes moving helps a lot but when you can’t stand on your feet without it feeling like you are walking on marbles it is very difficult.
I worked full time after my relapse until I’d finished the 4th cycle of Velcade twice a week, then the dose was reduced to once a week but I found the…[Read more]

Hi Izzie
The pain from peripheral neuropathy is horrendous! I found I had to keep my feet up and rest my legs a lot of the time and took all the painkillers and the psychotropics all the time.
Good luck with the SCT
Helen

Hi Poppy
If it were me I would do as Sarah just said and ask the nurses, listen to what they say and ask what they would do if it were their Gran. Then I think I’d bring my holiday forward and go anyway…infections are very unpredictable but when your immune system is failing then they are even more unpredictable.. That way you might get some…[Read more]

Hi Ali
I’m sorry, was I too blunt with my post? Rereading it it seems very bald, though I’m not sure how else to say it! It still might be nothing but needs checking out thoroughly. It’s good that you’ve not been driven by the numbers too, I’ve not asked for mine for a while, I’m just enjoying life between appointments.
You will be happy to hear…[Read more]

Hi Ali
I think its good to just pop in now and then, it means you are finding other things to do! Like holidaying with your lovely boys!

Plasmacytoma might mean increased myeloma activity in one of the bones….worth asking if this lesion is new or was present before on previous bone scans and has changed. Either way your mum should be on close…[Read more]