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HOPE
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latnahc posted:
Hi, I am 50 years old and was diagnosed in 1993. Disease progressed rapidly as I went from relapse remitting until 1998 and in 2006 went to Secondary Progressive. I have taken mega drugs from cortisone therapies to Mitoxanthrone therapy in 2001 and kept progressing until neurologist decided to try in 2006 a protocol drug therapy called cyclophosmoside chemotherapy. I have since been on this therapy and receive treatment every 16 weeks at the hospital. NO side effects. Nurse comes to take blood tests every 2 weeks. I use a motorized wheelchair and can no longer walk.
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hackwriter responded:
Hello latnahc,

It's great that you've suffered no side effects on Cytoxan (cyclophosphamide). I'm guessing that you have remained stable since starting the drug in 2006, though you haven't said so. I hope this is the case.

Thanks for telling your story, I hope you'll give us an update on your health while you continue treatment with Cytoxan.

Kim
 
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latnahc replied to hackwriter's response:
Thank you. Yes my condition has remained stable. Chemotherapy every 16 weeks and neurologist strongly recommends I continue unless blood tests tell him that I should Stop.

However, I still am living with anxiety and worry and still hope
that a cure will soon be found!

Thanks.
 
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latnahc replied to hackwriter's response:
Hi hackwriter,

update. I went to my neurologist yesterday and was first told to
stop Cytoxan. 7 years did its job and can stop.

After discussing some more he let me know how I felt if we are to continue Cytoxan for one more year (3 more treatments).
Carlo.
 
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mrscrg responded:
Hi, I am 3 I. I was dx'd in 2005. I have had every sympton. My neuro says I am still in the RR stage. Just saw a new neuro who says I am SP. Under RR, no meds worked for me, nothing. With SP, chemotherapy is the only disease fighting drug I can take.

I am currently in a scooter. What I am doing now is eating right. Basically fruits vegetables and grassfed meats. I guess its working cuz I had an MRI there was a decrease in the lesions.

All of my hope is in God. Whatever He has planned is what it is. At 22 this was not in my life plan of course but it is what it is. God is my hope. Staying positive.! Believe a cure will happen.
 
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latnahc replied to mrscrg's response:
Hi mrscrg

Happy to hear that you changed neuro. Hope your disease stays quiet and yes, stay positive and try to keep yourself busy. I am doing activities that make me happy!
I go to an adapted workout center 3x week and there I not only try to stay fit but I socialize with patients that are going through the same emotions as me.
Yes, eat well and pray to God that a cure will soon arrive


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