Cyclophosphamide

Everyday living
1

Hi all,

A while ago I posted asking about the above and not many people had heard of it. Well I’ve just got back from seeing my Neuro and he really thinks I should give it a go. He is a brilliant Neuro in London and although after months of thinking its not for me after todays meeting we have decided to go for it. Im PPMS dx 3/11 and in his words my progression has been rapid. Im a full time wheelie already and cannot even stand alone, let alone walk. Im 51. The drug is a type of chemo administered by IV infusion every month over a day or two for 2 years. The idea is to completely wipe out my immune system and with no immune system, no attacks on my CNS. Side effects are hair loss and sickness and suseptibility to UTI. Success rate is 1 in 5 which I thought were poor odds but the Neuros, there were 2 of them, basically said compared with no alternative they were worth a try. Antibiotics are given as a prevention rather than a cure. The ultimate aim is to stop/slow down progression.

Poxy disease this isn’t it? From running building sites building high rise blocks to not being able to stand in less than 3 years is frustrating to say the least. But, you know what? There is always someone worse off.

So mri’s on brain and spine on Friday and start treatment Tuesday 26/11.

Steve x

2

good luck with the treatment,i hope it stops you progressing so quick.and yes its a poxy disease.

J x

3

Good Luck, I reckon that I would do the same in your situation. I still have no DX as yet.

Please let us know how you get along.

Moyna xxx

4

Thanks ladies. Feel like Ive nowhere else to go. Moyna I know its horrendous being in limbo but its hard to find the right words to say to you. " hope you get diagnosed soon" sounds so wrong. Try and be strong, Steve x

5

Thanks ladies. Feel like Ive nowhere else to go. Moyna I know its horrendous being in limbo but its hard to find the right words to say to you. " hope you get diagnosed soon" sounds so wrong. Try and be strong, Steve x

6

Good luck Stevie. It must have been a difficult decision but I think the good neuros try to guide us to the best thing for us. I hope you are one of the lucky ones and it works for you. It is certainly worth a shot - if you didn’t try it then in 10 years’ time you would be wondering ‘what if?’

Take care, please let us know how it goes.

Tracey x