Forum

Cyclophosphamide

Hi

As we are all in the same gang (PPMS) 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

Meant to add Im booked in to start 14/01/14.

I’m so very sorry that you have found yourself in such an awful position. I’ve read of people having this treatment but have no first hand knowledge of it. I can only say that if I were in your position I would council as many opinions as possible …especially family…and then maybe your MS. Nurse, if you have one. Generally I find that , although my neuro is excellent , my nurse is much easier to chat too, less formal . I do hope someone will come on to the forum later that can be of more help to you. Perhaps you’ll let us know what you decide and how you get on, in the meantime I send you my very best wishes, Nina

Hi Steve

I’ll be very honest and say that I don’t know what to say except “you poor man”! Your post has really touched me and I couldn’t just read it and run. At the end of the day the decision has to be yours. The doctors are probably trying to give you a chance of halting the attack by your obviously focused immune system but as the one who has to cope with all the side effects, I can understand your reluctance. I honestly don’t know what I’d do in your situation.

The only suggestion I can think of is for you to make a list of pro’s and con’s and discuss them with someone. I’m sorry, I don’t know what kind of support network you have, is there someone you can do this with? If not I’m sure I’m not the only one here who’d help you discuss the implications. This list has to be realistic, not just the facts handed to you, but the emotional implications that bother you and has to be complete, as you know the effects, but not everyone has the full picture.

I’ve never had chemo but I’ve had a full dose of anti virals which have a similar effect, but that was prior to ms, and gave me a potential cure so I’ve no experience to call on. I really feel for you Steve, and want you to know that we’ll offer whatever support we can, I’m sure the others will be with me on that. Good luck and I’m so sorry I wasn’t much help, as I said before, I couldn’t just read your post without offering my support.

Cath xx

Thats an awful sh***y choice to have to make :frowning:

With those chances, my gut instinct (and it is just my instinct) would be to let nature takes it’s course, unless you are desperately unhappy as you are.

I can’t see what the benefits really are, slowing progression I guess… if there was a possibility in some kind of improvement then I’d be chasing the carrot but I can’t see that there’s an actual improvement to take such a gamble for.

My heart goes out to you Steve, I hope you’ll keep us posted on what you decide to do.

I hope you take my comments as just my personnal thoughts, not advice on what you should do, seriously, I’m sitting here with a worried frown just trying to think what to say.

hugs

Sonia xx

Hi Nina Cath and Sonia,

Thanks for your kind words. Nina my family are of the opinion I should go for it, I know it crucifies them to see me unable to walk in such a short period of time. Cath, the one thing I can’t get out of my head is what if I put myself through all this and nothing changes, or worse the treatment triggers some other God awful illness? And Sonia Im 100% with you! I know its my decision and if they were offering a cure I wouldn’t hesitate, but they’re not. A 1 in 5 chance of slowing progression only. Thats the trouble with this disease isn’t it? We may one day plateau but not knowing how bad we will get before that day makes any decisions pure guesswork.

I respect everyones comments as opinions and not advice and I know only myself and my family will decide on what we do.

Thanks again

Steve xxx

Steve the family want what’s best for you I know but if you do go ahead it must be your choice, not theirs. I can only imagine the confusion in your mind and wish you well. No one can give you the guarantees you want or need but we all wish we could. Have you thought about posting on the Everyday Living site? There may be someone who’s had this treatment. Just a thought.

Cath xx

Ditto everything Cath says, this has played on my mind all day today and the only thing I can be really sure about is the fear I’d feel. We’re here if you need to talk and hugs

I know if I won the lottery I’d be heading to Canada for a bone marrow transplant (even tho I think I killed one person) but failing that big win, I just hope for the best and keep buying the LDN (cos at least it’s kind to me and the one drug that doesn’t send me to sleep).

I hope your neuro isn’t putting a timescale on it? I was gonna say think it thru carefully but actually, in your position, I might just shout “heads” and toss a coin! And I’m not being flippant, I can’t imagine how you must be feeling.

Sonia xx

Steve I wonder if you have thought about this. I have researched stem cell carefully, and I have discovered that, so far, the only stem cell treatment that has proved very successful in trials has been carried out in Canada. The big downside / danger to this treatment is that the immune system has to be destroyed before transplantation . It might be worth considering this treatment if you’re going to under go the risky bit anyway.

Hi Sonia and Anon

Im not familiar with whats going on in Canada. Any pointers please?

Thanks

Steve xx

Hi Steve, what a bloody awful position to be in! I would do what you are probably doing anyway, read everything on the internet about it. Have you asked if you cannot tolerate the treatment if you can just stop without consequences? It’s almost an unbearable decision to have to make… a fine balance of what your life may be like without the treatment… Given that MS can plateau and stop progressing… but of course nobody knows the odds of that happening. Read everything out there. Judge if the uncertainty of MS progression is worse than the uncertainty of the treatment… and if you decide to go for it make that a firm decision. No ifs or buts. I would think a positive mindset would be a great help if you can do it. Whatever you decide I wish you all the luck in the world… And please come back and tell us how things are going. Pat x

Hi Steve

What an awful decision to try and make, but I do agree with the others, it has to be your decision.

I think others on EL have had chemo treatment, but I thought it began with mitrox something, so not sureif this is the same or not, sorry not much help.

Whatever you decide I wish you all the very best.

Pam x

It is confusing, I did a little google search yesterday but it was a bit too techie for me.

Steve the Canada reference was about an article I read, I will try to find it but again, I read it straight after I’d been diagnosed so my head was in a spin, I’ll post the link if I can find it :wink:

Sonia x

Hi Pam

If I dont get on with the Cyclo… my Neuro said they will switch me to Methotrexate which is not as powerful apparently, I will post on EL. Thanks everyone. Steve xx Sonia I googled MS stem cell Canada and got some sites showing research etc but I really want to know if its offered by a reputable source out there and for how much.

I think it’s all research thing so nothing definite!

Sonia x

So sorry to hear of your awful dilemma Steve. Hope you manage to come to a decision that you are comfortable with! I wish you the very best and will be thinking of you! Teresa xx

Hi,

I took it orally for 6 weeks [was supposed to be for 6 months] did make my legs stronger but the bladder irritation became intolerable so gave up. If you have it administered by IV they can give you something to mitigate that particular side effect and I didn’t feel sick or have any other nasty symptoms.

Apparently it can improve prgressive ms if you can stand the side effects so just reporting my experience, can’t make a reccommendation one way or the other, except to say at least your neuro is making an effort to do something for you which is more than most of them where PPMS is concerned.

Good luck with your very difficult decision

Margot x

I do so agree Margot. They usually just leave us to get on with it. When first dx I used to go to annual neuro appointment with a feeling of anticipation… What help would they give me… and would always leave disappointed. Now I look forward to a good cup of coffee in the hospital cafe, a look at the artwork they display in the foyer, a nice ride in a taxi… and… hmmmm… oh yes I spend about 10 minutes with a registrar and with luck get a good letter should I need one for benefits! Oh well, a few years on this board and I know more about MS than the so called specialists. Pat x

Steve

This is the newspaper article that I saw:

http://www.cbc.ca/news/canada/ottawa/ottawa-doctors-optimistic-about-new-ms-treatment-1.1368173

Like I said, it very much seems to be trial only but interesting all the same

Sonia x

Steve, you asked ’ would you go for it or not '.

Absolutely not mate. Stay off those toxic drugs, they only make you worse is my opinion anyway. Dont know how bad your pain is but try and manage that with as few drugs as possible. You mentioned constant chest infections, I too suffer with them and Ive found taking a daily dosage of something like beechams powders( I use annadin extra x 8 a day) keeps colds and stuff down to a minimum and takes the edge off of the pain without making me too drowsy.

Bottom line is there is no cure at the moment for this disease BUT there are many a toxic drug supposed to help the symptoms. In my experience the side effects of these drugs( short term ,feelin sick tiredness) ( long term, god alone knows) outweighs what dubious benefits there maybe…

Hang in there mate, like the rest of us we pray for a proven cure or treatment. Till then dont be a guinea pig to these treatments with possible serious side effects or ones that will cost loads but still unproven.

Other things that help me are an ice pack on the base of my spine and sometimes one strapped to the back of my bad leg. 8 Annadin extra , double brandy, 4.5mg ldn per day. Still in pain and very difficult to walk but not zonked out and still alert.So about the best trade off I can get !!

Hope this helps, having said that I do realise that we are probably all in different stages and what helps one may not help another. Such is this god awful disease.

Best wishs NW