Cytoxan for MS

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hockeymom96
New Member


Date Joined Nov 2008
Total Posts : 11
   Posted 11/15/2008 10:40 AM (GMT -7)   
idea  Just wondering if anyone has heard of or had the medicine Cytoxan for MS.My doctor suggested I try it skull It is a low dose Chemo treatment that could help with my symptoms confused I have had foot drop problems and balance issues that solumedrol has not helped and my doctor says this cytoxan might or might not help me smurf He says with the dose they administer it will not cause my hair to fall out or some of the other symptoms that it does for cancer treatments shocked but I am not so sure about it shocked I was told it will probably make me nausious for a day or 2 smhair I am supposed to do an IV treatment every 2 months for 1 year eyes .Please let m know if you have heard of or taken this treatment and if you have taken it did it work and what side affects did it cause? cry I am a little worried about a chemo therapy treatment. mad Hockeymom

Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 11/15/2008 12:06 PM (GMT -7)   

Hi Hockeymom,

I found a few links with some info that I’ll put below for you. I’m so sorry you’re in this position, and can see why you are concerned. I truly hope that it helps you if you do decide to go this route.

http://www.webmd.com/multiple-sclerosis/cytoxan-therapy

http://www.mult-sclerosis.org/JulieannesStory.html

http://www.nationalmssociety.org/about-multiple-sclerosis/treatments/medications/chemotherapy/index.aspx

Sunny

 

edited to remove last link, copy and paste address into your browser to view info, I can't get that link to work

 

Post Edited (Sunnycitrus) : 11/15/2008 12:10:36 PM (GMT-7)


hockeymom96
New Member


Date Joined Nov 2008
Total Posts : 11
   Posted 11/15/2008 4:41 PM (GMT -7)   
yeah  Thanks for the links turn They are very helpful wink I am still not sure I want to go through with it because it is not a sure thing it will work and there are side affects that are not worth going through if it is not going to work confused .Well I am going to think about it a little more and see if I can find out a little more info about it and weigh the pros and cons. turn Again thank you for the info.Hockeymom :-)

Easier2Run
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 11/21/2008 11:08 AM (GMT -7)   
My best friend has MS and has actually been on this drug. I would go over and take care of her alot during her therapy. Some of her hair did fall out, but she did not lose it all. Her first treatment didn't really affect her, but the consecutive treatments after that really took a toll on her functioning. She was incredibly fatigued, felt sick and nautious all the time, and really couldn't do much for a couple days after.  While this drug kept her from relapsing for a couple months, she ended up getting really sick from some kind of bacteria that she had picked up, which threw her into a relapse, which was 100 times worse than the ones she had been having before the cytotoxin. They ended up taking her off cytotoxin. While it helped for a little bit, it ended up being worse for her in the end.
-Heather, 23 yrs. old
____________
- Crohns disease since 1995, offically diagnosed in 2003.
- Bowel resection in Dec. 07, Crohns reoccured July 08.
- Medications - Entocort 3mg.
- Emotional wreckage... to great to even begin.


hockeymom96
New Member


Date Joined Nov 2008
Total Posts : 11
   Posted 11/21/2008 12:01 PM (GMT -7)   
I dont think I am going to have this treatment nono   I do not want to lose my hair and I am not sure it would be worth being able to walk better if I am sick all the time skull Besides I am told that it may or may not work smhair With my luck I would go through with it and get all of the bad symptoms and it probably wont do anything for me shakehead I was told once the damage is done you can not get anything back shocked Since I have gone through solu-medrol 2 times and did not get any better I think it is not going to help sad .My doctor told me it would be a smaller does and would not cause my hair to fall out,but I have looked on different sites of this medication for MS and all of them mention hair loss and nausea. cry I do not like to feel nausious and I kind of like having hair. turn I think I would rather have some dificulty walking then be sick alot and lose my hair smurf .Maybe if my symptoms become worse later I might think about it but as of now I am not going to go through with it nono Thank you for the reply I think it helped me out alot wink Hockeymom yeah

Chitreana74
New Member


Date Joined Nov 2008
Total Posts : 1
   Posted 11/22/2008 11:27 AM (GMT -7)   
Hello, I am been dealing with MS for 10 years, I am been in all the inyection and I am currently taking Copaxone, but since August my MS is been worse. My doctor want to treat me with Cytoxin but I am kind of scare to lose my hair. I can deal maybe with nauseas, but it will be hard if I have to lose my hair. I still work, I am only 34 years old........reading your post at this point I am not sure if I should try or not.. Right now I have my right side of my body numbness, and I lost my balance really easy. Please, I don't know what to do, I feel really inpatient at this moment seeing me the way I am.

hockeymom96
New Member


Date Joined Nov 2008
Total Posts : 11
   Posted 11/22/2008 5:29 PM (GMT -7)   
I know exactly what you mean.I also could deal with nausea,but probably could not deal with losing my hair.This might seem like a selfish thing to be worried about but this is what I am worried about the most of this medication.My doctor informed me that it would be a low dose and I would not lose my hair,but I checked up on this and it says this is one of the side effects of this medication for the treatment of MS.I also see that one of the people who were on it for MS did lose some of their hair.I have enough problems with people looking at me funny because I have a hard time with my balance and walking,I dont need people looking at me funny because I am also losing my hair.I am sorry I can not help you out too much because I am just as confused about this as you are.I am 36 years old and am on rebif and have been on it for almost 1 tear.I have had symptoms of MS for about 12 years and have been officially diagnosed for 2 years.I am hoping my symptoms stay the same and do not get much worse.I have already lost my job because of my difficulty getting around and because someone witnessed me fall.I have been unemployed for a little over 2 weeks.I really think I do not want to go through with this at this time.Maybe if there was more of a chance that it would do something it might be different,but from what I have heard so far it really is not helping much.I have not heard any real success stories yet.Well I am sorry I can not be of much help to you right now.Maybe something else will come up that will give us more hope.Hockeymom

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 12/29/2008 12:12 PM (GMT -7)   
Hockeymom,
I have had cytoxan treatments last February and am going to be going back on them (I hope) real soon as my MS seems to be getting the best of me and my Neurologist thinks that the Cytoxan has been the only thing that has helped me since I was diagnosed. I realize that it can give serious side effects but that is determined by the dose that is given and I don't think it is real strong so I am not worried yet.  I trust in my Neurologist and I know he is trying his best for me and that's all I can ask.  I really don't think you would lose your hair but then again, I haven't been affected much by any of the treatments I have had except for the first Avonex Treatment when I got nauseous. Oh well, to each his own I guess but I really can't wait to start the treatments again because I have been washing out my body for 3 1/2 months from the Tysabri which didn't work for me either.
By the way, I used to live in Joliet for many years until I moved to Idaho in 2000, one thing I don't miss is the traffic becaue we don't even come close to having a traffic jam out here! turn   Take care and Happy New Year!

 
 
 
 
                                           Chuck Huckaba
                                    AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2007
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.

Post Edited (bohuck2) : 12/31/2008 3:36:24 PM (GMT-7)


KAREN WINKLER
New Member


Date Joined Oct 2007
Total Posts : 10
   Posted 4/2/2009 11:50 AM (GMT -7)   
Hey everyone if you go to a site called patients like me they have alot of people talking on this subject it actually made me make up my mind to take the cytoxan good luck to all of you Katen
I've been diagnosed with MS for two years started out on copaxone for two years but I continued to get lesions so doctor switched me to rebiff Ive been on it now for a month.  My husband Mark is great with me he stretches my legs every night and we go for walks everyday he knows when I'm tired and tells me to go as far as I can.


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 4/15/2009 10:56 AM (GMT -7)   
Karen,
Thanks for the tip. I went there and joined that site also. It's awesome!
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Just recently had Treatments of Cytoxin
                                        Liked to kicked my butt!

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