[piatkazParticipant]

Hi all just to let you know my mini allo has officially failed,found a fracture in my neck vertebrae C6 so had surgery last week removed 90% of the vertebrae and put a cage in and plated it to C5 & C7,the biopsy showed active lession and also now lightchains in blood are increasing.When area to operation has healed i will have radio therapy on that then go onto velcade which i used a couple of years ago and worked wonders so here we go treatment again.
Ian

[tomParticipant]

Hi Ian

Wow I heard what you have had and its amazing, I hope you are doing well, are you still in hospital?, how did you fracture your neck?. gosh I dare not sneez now.

Hope your soon better and please dont sneeze

Tom "Onwards and Upwards" x

[piatkazParticipant]

Hi Tom
I came out of hospital last week 48hrs after op and doing really well just got a few aches from where they stretched my spine for the op.The neck injury just started after falling a sleep in a transport car 3 months ago just shows what damage this pesky MM does to your bones without you knowing it.
Onwards and upwards
Ian

[EvaParticipant]

Hi Ian,
Sorry about the mini-allo. I'm sure it's a real possibility that the Velcade will do well again. Let us know how you're doing.
Best,
Eva

[KeithH17Participant]

Hi Ian
interesting to hear of someone returning to a previous treatment.
I've heard doctors speak of this but not from anyone who has actually done it.
Hope all goes well for you and the Velcade works.

Take care…Keith.

[tomParticipant]

Hi Ian

Well you have done well out in 48 hrs 😎

Gosh how weak our bloomin bones are? I have been today to see my Doc bloods are good but I tild him about a pain in right upper arm/shoulder so he sent me for X ray so have to wait till next thusrday for results. am sure he will say its just old age 😀

Keep fit

Tom"Onwards and Upwards"

[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

[MariParticipant]

Dear Ian

Sorry to hear about your allo, specially with what sounds like a nasty op to follow. Good luck with the velcade i am sure it will work well for you,

All the best

Mari xx

[eveParticipant]

Hi Ian

You must be feeling a bit down,all that treatment and mm taking hold once again.i hope the velcade does the trick again and would be interested in the result as Velcade worked well for my hubby first time round,and its good to know what is round the corner.

Some times I wish I could swear on this site,and i am too old for the under 50,so will have to do with the swear box at home.Eve

[EvaParticipant]

Dear Keith,
I've returned to an earlier treatment. I began CDT for induction in May 2008 like most patients at the time. I then had a transplant( autologous) near the end of 2008. After relapsing sometime between two and two and a half years after transplant, I went back on Thal and Dex without the Cyclophosphamide. It's been a long hard road with problems caused by my reaction to Dex withdrawal each cycle. I've been taken off Dex for the last four months and have remained just on Thalidomide.
My relapse was quite aggressive( 70 % plasma cells in bone marow and broken humerus) and we took a gamble by going back to earlier treatment. After nine months my M spike disappeared, but I needed additional tests to confirm my meds were working. My myeloma is a difficult one to track now as I've become a very low secretor. However, a bone marrow biopsy suggested less than 5% plasma cells and my freelites went back into normal range, so it appears I was doing ok. Even if I were to relapse again this week, I've had a year on the same treatment as before, and it seems to have worked.
I've read quite a number of case histories from the States where patients have been retreated with Velcade or Revlimid. It seems to have a chance of working if you are not on the treatment while you progress. I've even read of cases in which a patient was receiving a very low dose of something, began to relapse, then had the same med at a higher dose together with dex and managed to get a response again. Some of the latest trials are looking at ways of sensitizing patients to Velcade again, for example, by adding another agent.
Best,
Eva

[BADGERParticipant]

Hello Ian

I am sorry your allo didnt work glad they are letting you go back on velcade as it worked well before good luck with the new treatmenr
lOve Jo x

[BADGERParticipant]

Hello Dear Tom
what have you been doing I hope the pain in your shoulder has been caused by lifting all those pints or kids you take care and let me know how you get on
Big big hug
Jo

[tomParticipant]

Hi Ian

Well you for one have made a fat Bald man very happy Lol, ye the skipping was trying to teach Grandson Liam how to skip 🙂 Hope his Mum and Dad keep it up so he wins the Race at skool 😎

Eve I have been told its alo for the young at heart and am sure we all fit into that one Lol xx

Jo Am sure it will be from lifting the beer and Grandkids (not at same time though lol) but it needs to be checked out now had it long enough :-/

Anyways Its Friday and "Poets Day today so have a great week end and dont worry about the rain it will still arrive 🙂

Tom "Onwards and Upwards" xx

[wendyduffieldParticipant]

Hi Ian

I am really sorry to hear that your mini allo has failed, I cant understand how this happened given your blood tests were so good and that you had achieved 100% donor chimerism. You must be pretty pissed off. It goes to show that not enough is known yet about this procedure and whether it is worth the risk.

Anyway I hope the Velcade and the radiotherapy does the job and you are not in too much pain.

Take care

Wendy

[PerkymiteParticipant]

Hallo Ian, I had a very similar operation in 2009. I have full movement of my neck and most people do not realise my head is held up by titanium 😀 rods. I broke my neck getting out of beds! All the very best of luck with your treatment.

Kindest regards – Vasbyte

David

[Author]

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