Ocrevus...

[erash]

Interesting that Ocrevus received FDA fast track approval USA but is still awaiting approval in UK Germany Europe Canada Australia. Usually FDA lags behind 🤔

[Morllyn]

erash I am worried about the cancers, especially the breast cancers that occurred. I had breast cancer and do not know if it would be wise for me to try it.

[erash in reply to Morllyn]

Morllyn

I'm cautiously excited @ Ocrevus. But I'm waiting to see what happens once it's out there with a larger population. Of course, how long do we need to wait to see side effects that may not present themselves early on?

Individual risk needs to be considered. Most often samples selected for research studies are screened for or selected to exclude people with risk factors (cancer, extremes of age or even other chronic conditions like diabetes).

I have no knowledge of who was included or excluded from the Ocrevus studies and that can certainly skew risk...

No doubt, that's cause for worry or at least caution if you've had breast cancer 😶

[Morllyn in reply to erash]

The things that I read said that the cancers appeared 2 to 3 years after starting Ocrevus.

My MS would have to progress much further than it is right now before I chance another cancer, the surgery, chemo and radiation treatments were not fun.

[Raingrrl in reply to erash]

When I asked the researcher yesterday for the demographics/characteristics of the people that had developed the tumors, she didn't have that info. She only knew about the people in their specific clinic none of which had cancer. My data analyst brain wants details!!

I'm going to take a wait and see stance for awhile.

[Raingrrl in reply to erash]

erash

I just found this info in a Q & A about Ocrevus on the National MS Society. It talks about the demographics of the patients in the PPMS study.

Q. Is Ocrevus more likely to help me if my disability from primary progressive MS is mild versus severe?

A. It is not known who will benefit most from the use of Ocrevus. The study involving people with primary progressive MS only included individuals between the ages of 18 and 55, who had scores on the EDSS disability scale between 2.0 (minimal disability) to 6.5 (able to walk with the help of a walker or bilateral crutches or other devices on both sides). It is not possible to predict how a specific individual will respond to treatment.

[erash in reply to Raingrrl]

Raingrrl thx! Now Im recalling seeing that before and also something about scars that have already formed cannot be repaired which might account for the lower edss selection.

[Karen-x]

What worries me is that with the current meds that can cause PML it was not discovered for over two years after it was on the market. That killed people while MS does not. So Im waiting and I'm praying for all that take it.

[CalfeeChick CommunityAmbassador]

Just to tease #erash, is that what I have? Extremes of age? I'll be 69 in May. I'm willing to try Ocrevus because I want more years!

[erash in reply to CalfeeChick]

CalfeeChick

per research standards, extremes of age could start as low as 55 yrs of age...we are both there.

But we'll show them right!

[jennie62 in reply to erash]

Just under the standard for extremes of age for what, about 7-8 months. AAAAAAAAAAAAH!

Maybe I'll just ask my neuro his opinion of Ocrevus instead of telling him I want to switch.

p.s. The local Office for the Aging (where I used to work) need to change their age range from 60 years old and up to 55 years old and up! I've only been telling them that for years!

[erash in reply to jennie62]

jennie62

nah...likely the ofc. for aging was providing resources. Using older cut offs means scarce resources are more abundant for the selected age grps. ???

Researchers (esp. pharma) often use narrower age ranges in order to get better outcomes. ???

My guesses anyway...

I'm glad my local community center uses 55 as the cut off as it lets me use lots of great free Sr. services

[jennie62]

erash

you are so right! The many reports I used to do had age range cut offs. When NYConnects started I was so happy they were going to help the under 60 y/o crowd. Sad to say when I left they were still receiving calls from the under 60 and re-routing them. No one else was helping them the way I had been. One can only hope the gal I trained is doing what I used to.

One (actually more) caller (about 55) I spoke with often had ALS and I had many neighbors under 60 who I often helped. One I helped with health insurance. She has MS and I would speak with her almost daily, not just about services available, but about MSAA. Wish I had remembered for myself early on. I'm just so happy I found this chat room!

[erash]

jennie62

I bet they wish you were still helping them out too!

By the way, so glad you did join this chat 😊

[Allen5280]

Now that I have heard boutique the possible cancer risk associated made me go 🤔 as well. Have an appointment with my neuro on Tuesday to discuss it in more detail! I was kind of celebrating over the possibility for a 6month treatment time of one infusion now it's got me somewhat concerned with the idea. Have lots more questions to ask when Tuesday rolls around.

[erash in reply to Allen5280]

Allen5280 let us know how the appt goes

[Allen5280 in reply to erash]

Sure will!!! 😆

[ddeadred]

As usual, I never get too excited until a new med has some history behind it... Sorry--got in on the beginning of Betaseron way back in 1994 and suffered unpleasant side effects for 8+ years until it caused an infection under my skin resulting in surgical removal of infection under my skin. That said, if I was unhappy with my current treatment of Copaxone (9+ years), I'd really research this new medication which promises so much with only two infusions a year!!!