Termination Appt. and What Did You Switch To

hmtucker · Post by **hmtucker** » Tue Dec 30, 2008 6:49 am

Hello all,

Things are a little quiet on the Tovaxin board lately but I just received a call from my Tovaxin study group. The latest news is that the Campath (Alemtuzumab) folks have now decided that we former Tovaxin lab rats ARE eligible for the Alemtuzumab CARE-MS II study (see http://clinicaltrials.gov/ct2/show/NCT0 ... +MS&rank=2 )!!! If you are interested in the original paper detailing the phase II results of Alemtuzumab vs. Rebif study (Oct. 23, 2008 New England Journal of Medicine) PM me with your email address and I can email you the pdf file of the original paper (I have access to the journal because of my employment at the University of Kentucky).

I have my screening appointment next Friday, January 9. If you are/were interested in Campath but were told that you were not eligible because of your participation in the Tovaxin study you may want to call your research group and talk to them about this new development.

Happy New year,
Mike

Lyon · Post by **Lyon** » Tue Dec 30, 2008 9:48 am

hmtucker · Post by **hmtucker** » Tue Dec 30, 2008 3:00 pm

Lyon wrote:I certainly am going to look into it, but Jamie's not interested in spending any time on Rebif.

Bob,

I certainly have reservations about the Rebif arm as well. I started out this journey on Betaseron and I certainly don't want to go down the interferon road again. But I'll roll the dice on an 80% chance that I get into the Campath arm. "Do ya' feel lucky, Punk.... well do ya'?" I think I do

!

Take care,
Mike

Lyon · Post by **Lyon** » Tue Dec 30, 2008 4:43 pm

ssmme · Post by **ssmme** » Tue Dec 30, 2008 6:53 pm

My clinic's research department contacted me this morning about the campath/rebif trial same as Mike Tucker mentioned. I go in on the 10th of January to continue my treatment options talk with my dr armed with my latest mri results. I've never been on any treatment besides Tovaxin and steroids so even Rebif is an unknown for me. I'll let you all know how the talk goes.

Marcia

Lyon · Post by **Lyon** » Tue Dec 30, 2008 8:03 pm

Lars · Post by **Lars** » Wed Dec 31, 2008 9:34 am

Maybe it's time we had a clandestine discussion about Campath here on the Tovaxin site since so many of us are considering it. Pros, cons, effects and side effects, long term efficacy, risk/reward thoughts etc. Thanks again Mike, you may have given us the ultimate Christmas present and inspired me to spend time on the forum again.
Happy New Year,
Lars

HEC · Post by **HEC** » Fri Jan 02, 2009 2:54 pm

I started Copaxone on 12/16. I feel totally fine except for how much the shots sting. The injection itself is super easy, but the site reaction is a killer. Sometimes it's mildly annoying, but mostly it stings like waves of battery acid are being poured into my body for about a half hour. Not a constant pain, but real zingers of pain in that time frame, and I usually have a hive/welt the size of a silver dollar for at least and hour and sometimes all day. Icing first and after helps, but heat before and and ice after makes me bleed more, so I don't recommend that.

I noticed I am sleeping better which is a bonus as I'm an insomniac, and I noticed I have no numbness or tingling anymore (which might be why I'm sleeping better - the tingling can be distracting when you try to fall asleep). I can't say this is all attributable to Copaxone, but I noticed the numbness and tingling stopped altogether within a few days of me starting the drug. I still have wee waves o' vertigo from time to time, but even those seem milder (all of which could be Pollyana wishful thinking).

I have a follow-up with my neuro on 1/21 to discuss how I'm doing on the drug (I'd say two thumbs up, especially if the stinging lessens over time as my body adjusts). My dad's diabetic and has a few insulin shots every day, so once a day seems very doable by comparison and I'm feeling good. I'm going to ask my neuro about the Campath situation and if that's something available to me in my area...I will report back to the group if I get any helpful intel.

hmtucker · Post by **hmtucker** » Sat Jan 03, 2009 6:22 am

Lars wrote:Maybe it's time we had a clandestine discussion about Campath here on the Tovaxin site since so many of us are considering it. Pros, cons, effects and side effects, long term efficacy, risk/reward thoughts etc. Thanks again Mike, you may have given us the ultimate Christmas present and inspired me to spend time on the forum again.

Lars,

I think that's a great plan. I will hold off on any comments on the pros and cons until I have my visit with the doc this coming Friday. By then I will have digested a lot of info as well as asked a bunch of questions to the doc.

As for the Christmas present, that's pretty much how I felt when the research nurse called me to let me know that the Campath group had decided to let us Tovaxin lab rats into the Campath study!

Happy New Year,
Mike

Lars · Post by **Lars** » Sat Jan 03, 2009 9:08 am

Mike,
I had a long talk yesterday with my Tovaxin site (and my now current Neuro) about Campath. I was a bit disappointed in their view regarding it. The standard arguments came up i.e. safety, long term data, etc. I have found that drugs that are being "trialed" at most sites hold sway over those not in their loop. I was once again steered towards Tysabri but that argument lost some momentum when I reminded them that Tysabri (in my opinion) was no safer than Campath. I was then told about Oral Tysabri which IS being "trialed" at my site. I have never even heard of it! At this point, all things being equal and realizing everyone has an opinion, I am back to trusting my own instincts. And obviously that worked well with Tovaxin.....wait, now I'm confused again, crap.
Lars

Lyon · Post by **Lyon** » Sat Jan 03, 2009 9:53 am

dignan · Post by **dignan** » Sat Jan 03, 2009 10:53 am

Thought I'd chime in on the oral tysabri thing...it is called CDP323 and is in phase 2 trials. Here are some links:

http://www.clinicaltrials.gov/ct/show/NCT00484536

http://en.wikipedia.org/wiki/CDP323

http://www.nationalmssociety.org/news/n ... px?nid=227

Lars · Post by **Lars** » Sat Jan 03, 2009 12:48 pm

Thanks Dignan,
Bob, I think the appeal of oral Tysabri has little to do with the infusion issue and much to do with the possibility of reducing PML.
Lars
Dignan, as an edit thought, I just revisited your "Pipeline" list. WOW and I'm speechless. Amazing research! Many thanks.

Lyon · Post by **Lyon** » Sat Jan 03, 2009 2:49 pm

Lars · Post by **Lars** » Sun Jan 04, 2009 2:20 pm

Bob,
I agree with your thoughts but the level of immune suppression with the oral therapy may be the wild card.
Lars