AllyG
12-13-2005, 10:00 AM
Hi Everyone,
I read the post about "Life Expectancy" and I have to say it was more informative than most docs I've asked.
My real question is about the chemo - can anyone tell me exactly what the benefits/side effects are?
My uncle just began his first session (5 more to go) and I just wondered what this means. Up to now he thought he had relapse/remit but this has gotten much worse in the last 2 years. He doesnt seem to be coming out of attacks. It seems to me he has progressive or secondary progressive.
I have to admit - I've been purposely ignorant about these two forms of MS - I didnt want to know what it meant, I wanted to believe I will remain as I am. But watching him I realise I could be very naive - it COULD turn this way for me later.
Could someone explain progressive Ms and treatments to me. I was at my 6mth check up yesterday and my neuro brushed it off and said I shouldnt worry about it,it might never happen.
I'd like to know what it is - so I know what to expect for my uncle.
Thank you all for your wonderful advice so far - its great that people can help others in this situation.
Take care.
I read the post about "Life Expectancy" and I have to say it was more informative than most docs I've asked.
My real question is about the chemo - can anyone tell me exactly what the benefits/side effects are?
My uncle just began his first session (5 more to go) and I just wondered what this means. Up to now he thought he had relapse/remit but this has gotten much worse in the last 2 years. He doesnt seem to be coming out of attacks. It seems to me he has progressive or secondary progressive.
I have to admit - I've been purposely ignorant about these two forms of MS - I didnt want to know what it meant, I wanted to believe I will remain as I am. But watching him I realise I could be very naive - it COULD turn this way for me later.
Could someone explain progressive Ms and treatments to me. I was at my 6mth check up yesterday and my neuro brushed it off and said I shouldnt worry about it,it might never happen.
I'd like to know what it is - so I know what to expect for my uncle.
Thank you all for your wonderful advice so far - its great that people can help others in this situation.
Take care.
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curious11
12-13-2005, 05:43 PM
Hi AllyG :wave: Sorry to hear your uncle is going through such a hard time right now. Secondary Progressive MS is the type that starts out as RR and then becomes progressive over time. The other form is Primary Progressive MS. This is the type that usually isn't defined by specific "attacks", because there isn't a remitting period in between. As far as treatment, Secondary Progressive is treated with chemotherapy. It isn't as targeted as the disease modifying drugs, but it has shown to be helpful in secondary progressive. Is your uncle on the chemo Novantrone? As far as Primary Progressive MS, no treatment has been shown effective. I guess the problem is... this form of the disease progresses at a slower rate and it is harder to track the effects of treatment. Doctors tend to focus on symptom management with other medications, instead of treating MS as a whole ineffectively. I am surprised your doctor wouldn't discuss this with you. Knowledge is power. But I guess he was somewhat right... don't worry about what may happen down the road in your case. Just take it day by day. But since your uncle is going through it, it is good to be educated. I hope this helped alittle. I have done alot of research because when I was diagnosed I wanted to know everything about everything. It helped me somehow... so I hope this helps you. Take care :angel: