Hi all
I’ve just posted a résumé of my anniversary treatment to date! Then spotted your post Vikki!
Bendamustine is a next drug for me too, if Pomalidomide fails – and assuming no further sct. It is given IV and you lose your hair etc so it’s more onerous than the oral chemo.
My disease is IgA lambda light chain oligo secretory mm – so I had a p…[Read more]

Hi Andy
That’s a great result, let me know if you are in newcastle.
Love Helen

Hi Mavis glad to see you still in remission, you have to make the most of it. Get out as much as you can on that mobility scooter.
Re quality of life… Yes it is important and I understand what Dai felt, but even though I only got 14 months from mine, and had a terrible recovery, I’d still do sct again if it could keep me here longer. We will…[Read more]

Hi Andy
Thanks, I have cells saved for second sct but it’s not going to be an easy decision. I’m on the 2nd Dex night! No sign of sleep for me! Tomorrow will be exhausting. Finished the first week ok and feel well.. Bloods still iffy, risen neuts but dropped hb and platelets! Anyway not back for 3 weeks now.
I’ve spent the day making table…[Read more]

Hi Vikki
I’m on Pomalidomide now.. Possible sct ahead, nothing definite yet. Hope Colin continues well on the Velcade, I got just on 11 months with it, not as long as I had hoped, but nearly another year, I’m hoping this lasts longer.
Love Helen

hi Ali
Good to see you again and glad your mum is doing ok again, 2 months between appointments ..that would be nice!
I’m at the end of week 1 on Pomalidomide, so far so good! Dex is terrible but otherwise I’m feeling pretty normal, whatever that is!
The move won’t be until next year, got to get the wedding out of the way first.. Nearly all…[Read more]

Hi Maureen and Colin and Vikki
I hate this new web site!
I’m just signing in here! Just to prove I’m still around. I’ve tried to post stuff but the connection keeps crashing and I can’t be bothered to rewrite everything. ( hmmm sounding grumpy already and only just started the dex! look out world!)
No real news from me- I feel tired but have…[Read more]

Hi Jean
I tried a few times to reply to this post yesterday but see my reply is missing! I’ve posted a bit about my latest treatment plan and am feeling ok really. Hope you and Frank are keeping well
Love Helen

Hi Jan and Andy
Well the bruises are reducing a bit and the aching leg is subsiding now!
Jan, I was hoping to have followed your lead here and sort of dropped back to ‘smouldering’ for a while, you have been quite lucky I think to have been so stable for such a while.
My neuts have been around 1.1 for the last few months but dropped to 0.6 last…[Read more]

Hi Jan
Thank you, it’s been a bit tough the last few weeks indeed. We haven’t moved yet, just got survey booked.
How are you doing? Are your light chains stabilised? I had BMB today,(very painful :-() as mine have jumped suddenly to the same level I was at at diagnosis. I’m starting on Pomalidomide next week.
Love Helen

Dear Andy
Looks like it was a very good holiday ….. and thanks for the insurance advice- having been turned down by World First! After 4 years of good cover… I went to ‘Now I cann travel’ and got cover including the myeloma, with 3rd relapsing disease, for £97 so am off at the end of the month.
And David , you seem to be doing well following…[Read more]

Dear Eve
I’m so sorry to hear that Slim has died, he was my travelling companion since diagnosis. You have been such an unwavering, wise and stoical support to him for such a long time, I take my hat off to you.
This disease is so relentless and not for softies, but I often wished he had had an easier path.
I do hope your celebration of his life…[Read more]

Hi David and Andy
Sorry to hear about your father-in-law Andy, very sad for you both.
No news to report, off all drugs, light chains 175, slightly neutropaenic so can’t find travel insurance that doesn’t cost an arm and a leg! Bit miffed about this as am going to Marbella film festival in October ( daughter has film in!) so will have to keep…[Read more]

Hi
I too am having a month off treatment, mainly as none have worked for very long for me, so I’m having a break, more bloods then see what happens. If your dad is finding it very hard going then perhaps it is best for him
Helen

Dear David
I’m just thinking about you and hoping that all is ok apart from the ‘bag’ and all?
Love Helen

Hi Maureen
I had Revlimid in 2011, right at the beginning with dex and cyclophos, it worked well and got me to zero in 4 months. Then I had SCT, relapsed after 14 months on 40 mg Revlimid maintenance daily. – treated with Velcade, Dex and cyclophos which also,took me down to zero again. 2nd relapse after 6 months took me to May this year, I’ve…[Read more]