[alpenatorParticipant]

This morning I had my final confirmation of MM following a bone biopsy.
I was given the choice of CTD or Myeloma XI trial and have decided to go with the standard treatment mainly because the trial would involve a lot of travel which would put too much on my wife. We are happy to go with the CTD.
I was also told that my back will need surgery to stabilise my spine (not so happy about that)
The chemo starts next Monday, so watch this space folks

[HelenRParticipant]

Hello again,

Good luck with starting the CTD. Hopefully at least getting to the stage of 'knowing what the plan is' makes it easier to engage with. I haven't had CTD, I had PAD, but I think any combination of three letters is a good thing to try 🙂 and I know the D is for Dex which is pretty mindblowing….!! You can read a lot on here about different people's experiences with that. It has some nasty features but it can also give you a lot of energy and reduce pain, so it's not all bad….

Surgery can be a daunting prospect, but I think other people have reported good results from back surgery on here, and I guess if you need it then you need it, so trust those surgeons and it'll be soon be a distant memory. I had a leg op and so have a titanium pin down the whole core of my thigh bone, which seems to function fine but is very odd if you stop and think about it!!

Helen

[eveParticipant]

Hi Athony or is it Tony!

Just to say good luck with your treatment,I do no think being on trials make that much difference now as second line treatment is Velcade and third line is Rividimid ,short form fot the 3 treatments are CDT CDV and CDR,the only difference it would have made is more bloods more BMB,so you are not missing anything.

My husband was on trials but was randermised for CDT anyway,had CDV next,then SCT now starting CDR off trials,

Any questions just ask,someone on here will be able to help??
Good Luck Tony,hope you do not have many side effects. Eve

[john62Participant]

Hi haw do i fiend spell cheque on hear
john

[VickiParticipant]

Hi Anthony

Just wanted to say good luck with your treatment….back surgery not something to look forward to but best tomget some scaffolding around that spine 🙂

Vicki and Colin x

[PerkymiteParticipant]

Hi Anthony, I wish you the very best of luck with your treatment. I think I would have made the same decision with regard to the trial.

I had my surgery in 2009 and it has been great. Pictures attached – if you can bear to look at them. I had the Collar on from 6 months and it came off just before Christmas – wow what a Christmas present.

Kindest regards – Vasbyte

David

[HelenParticipant]

Hi David
Nice pics, I can see your fractures very clearly, what a lucky chap you are not to have been paralysed!
Love Helen

[alpenatorParticipant]

Since last post (?) I got copy of letter from consultant to GP which mentioned that I would have CTDa chemo.
I believe this is a variation given to elderly patients (I am 77, so suppose that's me!)
The letter also noted that I have IgA Kappa Symptomatic MM. The IgA Kappa is something new to me, any ideas?

[PerkymiteParticipant]

You do not know just how lucky, Helen! I knew I had damaged my neck trying to get out of bed. I got myself back onto my bed with my head supported by my pillow and held my head square. The ambulance guys came along and said "Oh, it will only be a strain" and one started to put his hand behind my back to lift me out of bed. It was the other guy who quickly said hold on lets stick a collar on him just to be on the safe side :-/

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Sorry Anthony I have no idea. I think you are in Dai's area of expertise maybe?

Kindest Regards – Vasbyte

David

[HelenParticipant]

:-0 lucky ! I once looked after a man who broke his neck and he was the same , he held his neck and didn't let go until he had a large collar on, he said it felt as if he had to keep hold, he had a sense of his head feeling loose on his neck, very frightening I bet.
Helen

[Author]

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