This Is MS Multiple Sclerosis Community: Knowledge & Support

Chris here, was wondering if anyone could help. I am scheduled to start cyclophosphomide therapy in 9 days. Its a major infusion, four hours, every 28 days. How do I know Im doing right with this...my neoro told me the hicy is not something they do there and could not refer to anyone accept John Hopkins. I am dds 6.5, I beileve he said this is not what they look for typically? I have read conflicting reports however. Cant type anymore. Would love a phone number or referel to someonw currently treating in HICY

Thanks,
Chris A Atlanta, GA, can travel - so anywhere I can consult and schedule would be greatly appreciated!

Strange my neuro would have never mentioned this treatment option had I not mentioned it first. when I showed up for my appointment i gave to the nurse who takes your vital the word cyclophosphomide, I then asked her to show it to my neuro so he doest get blind sides when I ask him about it.....next thing I know I sceduled for chemo therapy....but am I supposed to go through this to get to the HICY?

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Thanks. What Im saying is I am going regular 4 hr transfusion onece every 28 days. Neuro was not big on the idea of HDC, wasnt clear why but i remember he made reference to my edss score of 6.5 being too hight (secondary progressive) and not rr. Anyway, no, I just starting the regular or what ever dose once monthly..

Do you happen to have contact info for HDC?

Thanks Bob, good to see you

All brand new discovery for me Bob, really kind of shocked that im about to start chemo therapy just a few days after asking my neuro about cyclophosphamide. I have a feeling this will be good for me but not the HDC I ultimatley need. Littel deperate with the new changes and progression since I was last on here. Already been to Bulgaria for ccsvi...what shit

Hi Chris,

I can't tell you if you're nuts or not. However, I will say that you may wish to do some homework on cyclophosphamide before you begin treatment.

Here's some info on it from the Mayo Clinic's site.
http://www.mayoclinic.com/health/drug-i ... THOD=print

Here's an interesting newspaper article that discussed the risks associated with chemotherapy drugs.
http://www.thisisms.com/ftopicp-122773.html#122773

These articles are just starting points. I don't recall reading much about the long term success rate using a pulsed cyclophophamide treatment for MS. This, as well as the side effects, are two things that I would look at very closely.


NHE

Thanks NHE. I did some reading. Im not sure the pulsed version is the way Im going so monday I will most likely back out once im there. I began making alternate plans for the high dose version. I understand the dangers. MS has got a hold of my life anyway. In my mind, theres is nothing worse than letting this disease run my life.

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I'm glad you are getting great information to make your treatment choices. I was given Cytoxan in 2007 during a particularly bad relapse. I took it for about a year for 4 days once a month. It really helped me. I wish I had followed it up with Copaxone, rather than Betaseron. I'd rather have another relapse that go on that drug again - and I told that to one of the drug's principal investigators. I prayed that I would stay relapse-free long enough to get the CCSVI liberation treatment. I did and the results are awesome!