My older brother who had MS tried the chemo drug and he said he never felt better! He always said it was a good therapy.
Good Luck and let us know how it works!

Which chemotherapy are you refering to?

Haven't heard of this? What exactly is this chemo therapy and for how long?

The chemotherpy drug is called mitoxantrone
it works as an Immunosuppressant

it can slow the disabilites and slow down the attaches

google
mitoxantrone/MS and there is quit a bit of info
the sideffects can be bad
web.md has a few good articals on it

Yes, I have done this treatment. It seems to have knocked the MS on its ars. At least I have no new lesions since then. I am in the exploritory stage of finding out what it means that my spinal cord has shrunk. I do not know if this is caused by the MS attacking, or if it is a symptom from so many years of lesion build up.

I had all but last of the treatments to meet my maximum. My heart had a MUGA scan done every year. It was determined at the last MUGA scan that my heart was starting to get damaged, and I had to stop the treatments. That was about 5 years ago. Another risk is leukemia. Knock on wood, I do not have it (or not that I know of).

I wish my dr would have started me on this sooner, but I think they are afraid of the risks. I would take these chances again, because I would rather have 10 years of "good" quality of life than 30 of MS at its worst.

Its sounds as if you are a prime candidate. I usually took the treatments late on Thursday. I always drove my self there after work and then went home. I took it easy on Thurday night and gave myself permission to take off on Friday and give myself three days to recooperate. I never missed a day of work. My worst symptom was that I felt like I had a bad whiskey hang over (Though have not had one in 30 years). My gut hurt and I had a headache. I found it better to just keep chugging along rather than take the anti-naseau medicine which actually made me feel worse.

Please feel free to contact me if you have any questions.

Steve

Thanks Kayce1970 for the follow up. I've researched it it seems very interesting. Not sure if its worth the risk of the effects but you gave me something to consider later.

Half of my chest isparalized so it was worth the risks but I know what you mean it is scary

My new MS specialist has recommended CYCLOPHOSPHAMIDE (CYTOXAN) chemo therapy for my aggressive SPMS. Betaseron didn't work, & my EDSS scales were rapidly deteriorating, 2 pts in less than a year. My MRI showed 3 new 2T lesions, or is it T2, whatever!, in my brain, and they couldn't even determine in my spine because there are too many old ones in the way, so they just said "suggests progression" since my last MRIs 11 months ago.

Idk the diffrence between the Cytoxon & mitoxantrone, but it was, and still is scary, the side affects. The risk of causing bladder cancer bugs me, like we don't have enough bladder issues already!, but my urologist says they give a med that blocks whatever compound from adhering in the bladder that significantly reduces that risk.

I'm worried also about the damage it can cause to your heart, as heart disease runs in my maternal female side of the family, but I'm gonna try to get hooked up w/ a good cardio that knows about chemo damage so I can be monitored closely. That will ease my fears.

And since it suppresses the entire immune system, the neuro following the treatment told me if my temp rises above 100.8, to go to the ER immed for a full workup.

And my dentist told me not to floss and do peroxide rinse if my blood count goes below 20k, because the mouth is the highest germ zone! Makes sense.

The studies have shown 80% have stopped progression, & most of them have improvements in their EDSS. It's too bad it's got a limit of 3 years of treatment time to minimalize the side effects. These treatments are for the MSers that are not doing well though, that are progressing, and other thing have been tried and have not worked, it's just not to be taken lightly.

So all in all, when my 15 yo son said don't do that treatment, it's too dangerous, I said to him, I have to do something to try to stop it. It can stop you from swallowing & breathing, and that could kill me, so if this actually could help me get better, something they've been using for more than 15 years, than it's worth the risk! I'm not even 40 yet, I don't like taking chances with my life, but I would also like to live a little better, cause MS stucks for me.

Good luck with what you decide.

update on the chemo
it started to work and I know more about it now that has eased my fears
mitozantron does not cause bladder cancer but it can cause lukemia not much better - heart failur - stop making blood
the stats are for everyone on the drug if you have cancer they give you 18 mg per meter of skin
for ms they give 12 mg /m skin
they gave me 8 mg/m skin
with a total of life time dose of 120 mg/m skin
so after the next dose I would be at 16 mg

it has started to work for me
2 months ago I was paralized from chest down
when I started to have trouble breathing they gave me high dose steriods I got better this time they held on for 4.5 weeks
I started to get worse once again but 1.5 - 2 weeks later I started to get better
now I can move my legs and I started physio
when they tested my muscles before I was at 0-1
arms L 0-1-2 depending on what muscle
R arm 1-2-3
today legs at 4-5
even my MS doc can hardly believe how well I am doing
so the next dose is a go

Good LucK!
I never really got sick from the chemo. Be sure your dr keeps you on scheduled MUGA scans to make sure your heart is okay. I had to stop short of the last dose ore two.

Do you still have to duo alot of blood work to watch your blood counts?

yes I do. at present I get it done
once weekly
once I get the chemo it goes to
3 times weekly for the first month
sencond month 2 times week
third month once weekly
I get a echo cardiogram done on the 11 nov
they are going to run all of the white counts each kind of white cell to see what they are doing
liver function
kidney function
heart enzimes etc.
urin tests
after this dose they are thinking about putting me in reverse isolation to make sure I don't get sick as it is worse in hospital
he also said that they will watch that I do not get infections
my super pubic catheter site is being changed daily sterial saline and antibacterial soap and being taped down
normally they wash with normal soap and cloth and change dressing weekly
my pic line is now being changed 2 time week instead of once weekly it may go to 3 times weekly
any redness any where is going to be investigated
they are being very careful
and that takes some of the fear away
K

Good luck Kayce and you know I mean it from the bottom of my heart and I hope to hear that you are able to walk again
Hugs
Dave

does the chemo worsn the neuopathy pain?

"does the chemo worsn the neuopathy pain?" It did not worsen for me.

Yes to the scans I get an echo cardiogram 2 weeks before each dose of chemo
and before the dose of chemo they give you a drug to protect the heart
and I get medga blood tests
the first month after chemo tests 3 x week
second month after 2 x week
third month 1 x week
urin tests every week to check for infection
any redness checked rate a way
may go into isolation to protect me from getting sick as I am living in hospital
They said I may have to ware a face mask when I leave my room they said it would be different if I was at home
I would only ware the mask when I left my home
but hey I can move and breath
yeah me