Quit Ty? ->Ocrevus? Cancer concerns.

[Carolinemf]

Hi,
I have read through the majority of the posts here regarding Ocrevus and have found the majority of my queries and concerns answered in one way or another. So thank you everyone.

I have my neuro apt next month and we have been discussing me switching to ocrevus from Tysabri (6 1/2 yrs).

I have multiple symptoms as we all do, but the one that bothers me the most is memory and cognition.
I haven't as yet read any positives is this area with ocrevus, even though my neuro said last time he had info saying it was better than Ty with this. Would love opinions/info?

The other thing that concerns me is that I have already had multiple BCC's and one Squamase cell removed (years in hot Aussie sun) and am likely to have more. Am i at more risk than those with no history do you think?

Thanks for any n all replies in advance.
Caroline

[Myoak]

Hello Caroline,

First, your neuro said he had info saying memory and cognition is better with Ocrevus than Tysabri. That is a bit sketchy, IMO.

How is cognition measured? One way is with the Symbol-Digit Modalities Test (SDMT). I wanted to find the most recent data to understand what the good doctor might be basing his statement on. I found a small 2017 Tysabri trial reported no change in SDMT (this is consistent with other natalizumab studies); so that can be viewed as no change in cognition. While earlier this year Roche reported a small improvement in SDMT with Ocrevus; so that can be viewed as a small improvement in cognition.

Good news right? Yes! But is a small benefit in cognition as measured by a rather flimsy (IMO) SDMT the only consideration in switching DMTs, or even the most important consideration?

Caroline, you do understand that there were 6 cases of breast cancer with Ocrevus and zero with placebo in the 3 combined ocrelizumab studies, Opera 1, Opera 2, and Oratorio.

Is it credible to believe that is pure coincidence? I don’t.

Please read my post in JCV…Jitters which helps explain what is going on. I talked about B-cells required to fight JCV but please realize that B-cells also fight cancer. So, if you take Ocrevus, and keep taking it, you are permanently suppressing your immune system without a good way to reverse that suppression.

Ocrevus keeps destroying B-cells long after you stop taking it! That is why the extended study showed it continued to be effective against MS; it keeps working, it keeps diminishing B-cells long after you stop taking it, at minimum 18 months as reflected in the study I posted in that thread.

Tysabri, on the other hand diminishes comparatively quickly and has largely disappeared after two months by merely halting treatment.

Considering the incidence of cancer these days it is highly probable that many, if not most, of us will need our immune system effectively battling cancer at some point.

Tysabri can be reversed much more easily than Ocrevus or Rituxan and that may be a huge consideration for many. That reversal factor will undoubtedly save lives, IMO.

Here is a video you may find helpful…
https://youtu.be/EzM1NbZ-7nU

Best Wishes!

Oh, btw! One of your best doctors in Australia was “mobbed” last year during his research presentation at the 2017 ANN meeting. Michael Pender is his name.

I posted about him and what he was doing a couple of years ago in the Charcot Project thread which you can find under New Treatments, Trials, and Research.

If Pender is on the right track and I believe he is, most or all of the current MS DMTs will be tossed in the trash within 10 years.

Yes, Virginia, if you have MS there is a Santa Claus… Pender is well on his way to establishing MS is caused by a virus and how to treat it; he will be world famous in a few years. Love those Aussie’s who think outside the box!

[oceanpride]

In 13 years since dx Ocrevus is the only thing that was ever offered to me. I’m PPMS. So I didn’t have any choices except take it or leave it. As far as forgetting goes , everybody forgets. I definitely feel better after taking it, but still know I have MS. I’m not much help but wanted to comment because it’s nice to see a post from you. Haven’t seen one for quite awhile. Good luck with your decision

[Myoak]

Ocrevus is tremendously effective against MS, there is no doubt about that.

We just don't know yet how the incidence of cancer seen in the trials (0.5% in RRMS; 2.3% in PPMS) will play out in a larger number of pwMS over a longer period of say, five years. Data will tell us.

For those can wait, doing so may be prudent.

For those on it or going on it, please know Ocrevus is a very highly effective DMT for MS.

[Carolinemf]

Thank you so much Myoak for your HO!
You have obviously done research and very eloquently put it together tailored specifically to my concerns. A stranger from the other side of the planet.
There are so many on here that post info etc just to help others that their generosity is humbling.
I have so much difficulty compiling info- especially - a quote from here - a bit from there- as soon as i go out of something i often can't find it again. So i started printing everything of interest and using scissors and in some ways this is more tangible to my 'auld brain' but still not cohesive enough for me to glean a true opinion and discuss 'cohesively' with my family or doc.

in short I was already leaning towards prudently remaining with what i know but it helps to have some one else enunciate for me the pros and cons and you have eloquently done that.

I know of doc Pender. We are both in Qld and i was going to try and join one of his studies a couple years ago but didn't meet criteria.
I to believe he is on the right track. I had an Aunt and an uncle who both passed from ms . not only did we share dna but we grew up on the same property and were exposed to identical work, people, circumstances etc and i don't believe this is a coincidence.

And aside from how much i appreciate your info i also enjoy the conversation .
Caroline.

[Carolinemf]

Hi Ocean pride,
It has been close to ayear since i visited. It's nice to be remembered.
I have often thought of those i had gotten to know on here and wondered how they were doing but needed a break to focus on other things. Have read as many posts as i can where the old regulars are at - some doing well- some not so much.May catch up with them over time. Not sure exactly why i came back at this time precisely - I do have the odd query (like this one) that is helpful to discuss with people who can help but it may also be that i'm just lonely as well.
I have always been one of those people who 'can talk under water with a mouth full of marbles'
But i spend the majority of my time now alone. A combination of choice and circumstances.
I became a Grand ma recently and only had a 2 people outside family to share this news with and one already knew -facebook . It was nice to share on here.
It is also nice to answer others and possibly help them as well . Have spent bulk of my life caring for others but this old control freaks skills aint bin needed for awhile.
So reading your reply was lovely.
Caroline

[Remy9111]

Cancer is certainly a concern with these drugs. I was on Tysabri for 9 years and then was diagnosed with stage 3 gynecological cancer (message if you want the details). I had to go off Tysabri to do the chemotherapy. The oncologist said I cannot go back on any immunosuppressant medications for fear of a cancer relapse. My neurologist had thought perhaps I could try Gilenya. He said Ocrevus might not be smart because of the breast cancer cases. But again the oncologist said absolutely no immunosuppressant MS drugs.

My neurologist had to defer to the cancer doc. My options were only Copaxone and interferons. I tried both at the start and couldn’t tolerate them so I am out of luck. Still, I probably wouldn’t have done anything differently. Tysabri gave me 9 years of normal life an no relapses. The o my thing I would advise is do all of your regular cancer checks (skin, mammograms, paps, colonoscopy etc.) and if you have any weird symptoms for more than 2 weeks always get them checked out.