Forum

Cycophosphamide

Hi

Ive posted on the PPMS site and it was suggested I post on here. I thought Id ask people what they would do in my position? I was dx 3/11 and am already a full time wheelie. My Neuro, alarmed at the speed of progression, has twice before offered me the above. This was something they used to use years ago. It is a type of chemotherapy, administered once a month by IV and the course is for 2 years if indeed my body can tolerate it for that long. Comes with usual health warnings, loss of hair, blood in urine, collapsing bladder wall, sickness/nausea and the possibility of starting off cancer. Chances of success are 1 in 5 which to me are crap odds and one of the reasons I declined previously. This time the Neuro and 2 registrars were more pushy, (in the nicest possible way!) They basically said there was nothing they could do to stop or slow up progression and the 1 in 5 odds were good compared to any other chance I have (none). The point of the chemo is to completely wipe out my immune system, (which as you know creates other problems), therefore no immune system no attacks on CNS or myelin. (As I understand it.)

I really don’t think Im strong enough to cope with all this as I already suffer from constant chest infections and keep thinking no immune system means trouble!

Plus Im already in a wheelchair, how much worse can I get? To me personally losing the use of my legs and my independence is hell. This treatment isn’t a cure as we all know, if it works it may slow progression.

So friends, please God you never have to make this decision, but if you did would you go for it or decline? Thanks,

Steve x

Hi, I just wanted to offer u some support with your decision. I haven’t experienced what your going through , but I was dx 3 years ago, 3 relapses In 6 months , I couldn’t walk , sit up, lost eye sight in one eye and other symptoms and didn’t understand what was happening. I was admitted to Hospital. I was advised to have tysabri it took weeks for me to understand and decide what to do. I just realised that I had to do something, my 3 children were only small and I was in hospital and so confused. I’m still on tysabri and just as frightened as I was then but understand a bit more about ms but feel extremely lucky to be as I am. All you can do is do what you think is right for you. I know your decision is different I understand how difficult it must be. Take care Hope x

Hi hun. I can identify with you somewhat, as I have been a full time wheelie for 10 years. I have had ??? for going on 16 years and i did present very PPMS like. None of my many tests ever helped prove PPMS, but I was labelled with it, as nothing else could be blamed.

in 2010 a different neuro dismissed PPMS and said I had HSP…but no-one in the family had signs of it, so my current label is;

Spastic Paraparesis/cause unknown.

So going back to your dilemma…no, I dont think I`d take the chemo drug, as without any immunity to infection at all, you could suffer even more.

Have you tried/thought about LDN?

luv Polllx

hi stevie

maybe as poll suggests, try LDN because it works wonders for some people with ms and does no harm if it doesnt.

i was just feeling at rock bottom with my rrms but theres always someone worse off and i’m sorry it had to be you.

carole x

by the way, a chemo drug called mitox was used a couple of years back.

maybe try posting with “chemo” as the title.

carole x

Hi ladies,

Thanks for suggestions. I got on LDN not long after I was dx so been about 2 years now. Not sure if its working or not tbh cos if I wasnt taking it would I be worse? Found some interesting people that have had HSCT in Russia and reckon its marvellous! Very tempted. Steve x

Sorry i cant help but good luck with whatever you decide.

Thought i would just bump your post back up to see if you get more replies.

Teresa.x