[piatkazParticipant]

Hi Jill

All my specialist said was it was 2 infusions (iv) per week and there are less side effects than most but will ask all the questions next week when I see my main specialist
Ian

[piatkazParticipant]

Thanks for all the replies just comeback from seeing my specialist in Shrewsbury and she thinks the revlimid isnt working my lightchains have gone up to 500 and wants to jump in early before the lightchains start damaging my kidneys.Go to Birmingham to see my main specialist on Next Wednesday to discuss going on to Bendamustine I know this is done by IV but what is the protocol ie how many times a week is it 3 weeks on a week off when is the dex taken etc
Thanks Ian

[piatkazParticipant]

Thanks Andy I was hoping for a reply like this it does give you hope but I know everyone reacts differently to treatments.
Many thanks Ian

[piatkazParticipant]

Hi Pete
Thanks for the reply i know its was a long time ago but what treatment and dates were your not on treatment and on treatment it's 9 years since you were diagnosed and to have had only one ASCT is amazing,let us know how the scan results are if you want you can e-mail me on piatkaz@aol.com
All the best Ian

[piatkazParticipant]

Hi Nicki
When i was on Velcade it hammered my lightchains down from 2000 to 30 on one cycle and after auto Stem cell I only got 18 months remission but you look on this forum and many have had years everyone is different,I'm even on velcade again for the next treatment and it's hammered it again I've been diagnosed for 5 years and still going strong
All the best Ian

[piatkazParticipant]

Hi Pete
Wow 4yrs remission from velcade hope I get something like that I was diagnosed Jan 2008 had C-Vamp then stem cell transplant that only gave me 18 months remission,then had Velcade for 6 cycles then a mini allo using brothers cells but only got 12 months remission but similar to you my results lightchains were ok but ended up having vertabrae destroyed by MM in my neck so needed operation and radio therapy.lucky enough I am on velcade for the second time so got some eggs left in the basket for the future,just finished my 7th cycle one more to go but only having it once a week because of the PN over the last few cycles my lightchains started to rise but very minimal so they are keeping there eyes on them.hope the rt does the trick and the scan come back good like you say you have to stay positive
All the best Ian

[piatkazParticipant]

Hi Tom
Had my next treatment this morning and had my dex reduced to 10mg so far no problems with my legs touch wood and had the velcade subcut also, that way really does reduce the side effects of the velcade.
Onwards and upwards
Ian

[piatkazParticipant]

Hi I spoke to my specialist and she seems to think it's because of the Dex so thinking of reducing it.

[piatkazParticipant]

Hi Ozzy

Yes i had the husky and high pitch voice whilst on Dex am still on it and still get it also suffer with hiccups for the days I'm on dex.Hope all goes well for you.
Ian

[piatkazParticipant]

Hi Steve

Welcome to the site,Sorry cant help with the issue with kidney problems I just have issues with bone damage but after treatment,radiotherapy and surgery I'm doing well.I see you mentioned eye trouble I am on Velcade also, This is the second time I've had Velcade on the first lot of treatments (Nov 2010)I suffered with eye trouble swollen eyelids,lumpy, sore and itchy my specialist said it was a less common side effect with Velcade and gave me steroid eye drops, this helped a great deal never cured it but made it easily tolerable.When all cycles were completed it disappeared after a short time,to prove it was the Velcade I went on my second journey with this drug in Sept 2012 and exactly the same happened.
Hope this helps
All the best Ian

[piatkazParticipant]

Cheers Tom (twinkle toes) I'm lucky I've only got 5 to have 25 would do my head in,I've made the most of today been out fishing and got a nice red face from that thing in the sky I think it's called the sun made the most of it before the treatment started.
onwards and upwards
Ian

[piatkazParticipant]

Thanks for all the replies,I had surgery on my neck putting a cage around my vertebrae (C6) due to the pesky mm destroying it and was taking gabapentine for the nerve pain,I stopped taking this a week ago due to pain in neck subsiding and found out through a friend (Deb) that this is used for PN so took it again last night and had best nights sleep for ages, I will see how it goes I've got appointment with my specialist this week to discuss when I go on Velcade so will mention it to him then.
Many thanks Ian

[piatkazParticipant]

Hi Gill
I have got neuropathy from old treatments but not like this strange how it's just started up when I'm not started any treatment yet
Ian

[piatkazParticipant]

Thanks for all the replies,David you said you had similar procedure how long is it before the backache subsides due to the stretching of the spine in the operation,Not hurting just aches I know it's only been 12 days since the op but just woundering.
Thanks Ian

[piatkazParticipant]

Hi Tom

good luck with the x-ray I'm sure it's nothing you didnt look that old on fb with the skipping rope nimble feet you still have
Ian

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