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Posted: Thu Jul 17, 2008 5:23 am
by MaggieMae
I'm so glad that so many are doing well with this procedure. This is the third time that I gave an article to our neurologist at Allegheny General in PA. He knows Dr. Kerr (told us that last time). This time he said that he has had two patients who had this procedure and they both had their symptoms return after two years and that the procedure is very risky. He really isn't in favor of it.
I believe in this treatment, but many doctors just don't want to hear about it. Can't the people at John Hopkins get the word out to their colleagues.
Posted: Thu Jul 17, 2008 9:22 am
by Lars
Merlin 26,
Are you in the Tovaxin trial?
Lars
Posted: Thu Jul 17, 2008 10:03 am
by RedPenguins
Cure, if there's a way for you to deal with the one needle stick for the contrast, I would say to go for it - b/c I know JH is specifically looking at that part of the MRI...
Maggie - you know, a lot of neuros say they know a lot about it - but they don't - and many are hesitant to go away from the "norm" - -
The procedure carries risks - but so do all of the other established MS treatments....except, no one has died from HiCy - unlike the other MS treatments! How's that for an interesting fact.
It's a very personal decision - and I would want to know more specifically about your dr who knows two people who had it come back - what does that mean? As far as what they are saying at JH - there are some people from the original 9 in the study who have gone on after 2-4 yrs who went back on conventional treatments b/c they had some return of disease activity...but NO ONE is doing worse than when they started. According to JH, I was patient #26 to have this procedure at JH - so it's interesting that your one doc has two patients who had it. Other places (I believe Stony Brook) did a similar treatment - where it wasn't as successful at HiCy - but it wasn't the same treatment.
For me - if this treatment means that I get 2-5 years with NO progression of the disease and no worsening of symptoms - then I'm THRILLED. But more than likely, I will get more than the 2 years - AND some of my disabilities will have healed/gotten better. Most who have had HiCY have had marked improvement in their EDSS scores.
Also, they have changed the protocol and now after the HiCy we go on Copaxone for 9 months to 1 yr - and the belief is that by adding this - it teaches the immune system from going whacky again - b/c I believe that they found that if they treated mice with Copax, then they couldn't later "give" them MS.
Just make sure you have the facts when making decisions. My phrase these days is:
It's MY body + It's MY disease = it's MY choice. Not my doctor's.
Good luck in whatever you choose!
~Keri
Posted: Thu Jul 17, 2008 11:57 am
by MaggieMae
Keri,
I agree with you totally. I'm not sure why Kyle feels they way he does. I think that most neurologist are not informed - they just think they are.
My thought was the same as yours - Does our doctor really have two patients that went on this exact treatment? Did he even check into or read the various articles I brought him? Did he personally talk with Dr. Kerr?
Tovaxin
Posted: Thu Jul 17, 2008 3:22 pm
by merlin26
Lars wrote:Merlin 26,
Are you in the Tovaxin trial?
Lars
Yeah Lars, ive been recieving the real stuff now for about 6 months. Apparently I no longer have any disease activity. They define disease activity as nothing lighting up during my MRI. However my lesion count remains at 12 and the symptoms ive had with fatigue, cognitivie issues such as dementia, weakness in legs, etc... continue to persist. There has been no healing whatsoever. Please also bear in mind ive been in the study for a year in a half. The first year yielded the same results prior to the open label. My edss score is still being measured between a 2.0 and a 2.5 but it was that when I was first diagnosed with MS 8 years ago. In conclusion Tovaxin doesn't seem to have in any way improved my symptoms. What would be really cool to try is HICY and then immediately afterwards get on Tovaxin. I might be able to then get rid of the MS, heal the lesions currently, improve my symptoms, and then with the addition of the Tovaxin keep everything steady and from reoccuring.
Posted: Thu Jul 17, 2008 5:52 pm
by RedPenguins
Merlin,
If you had HiCy - right now the protocol is to use Copaxone after the treatment, as a way to kinda train the immune system not to go wacky again.
~Keri
Re: Tovaxin
Posted: Fri Jul 18, 2008 3:23 am
by CureOrBust
merlin26 wrote:ive been recieving the real stuff now for about 6 months. Apparently I no longer have any disease activity. They define disease activity as nothing lighting up during my MRI.
Although thats good in itself, it appears JH are looking for disease activity before their treatment. It sounds that they are targeting people with clinically active disease.
merlin26 wrote:What would be really cool to try is HICY and then immediately afterwards get on Tovaxin.
Correct me if I am wrong, but if HyCy stops the MS, then you wont be making MRTC's, and so they wont be able to make a vaccine for you, so, no Tovaxin.
Keri, I can bear a single needle (I used to be on Rebif), its just till this came along, I had no driving reason. By the way, exactly where do the stick the needle?
.
Posted: Fri Jul 18, 2008 11:04 am
by Lyon
..
Posted: Fri Jul 18, 2008 11:53 am
by Lars
Merlin 26,
It seems I'm full of question, You said there is nothing "lighting up" on your MRI's, does that mean your staff is sharing results with you????? I have done everything short of begging my MRI tech and clinical staff to share anything, no deal!
Lars
Tovaxin / HICY
Posted: Fri Jul 18, 2008 1:16 pm
by merlin26
Lars wrote:Merlin 26,
It seems I'm full of question, You said there is nothing "lighting up" on your MRI's, does that mean your staff is sharing results with you????? I have done everything short of begging my MRI tech and clinical staff to share anything, no deal!
Lars
Well they shared one MRI with me but that was because they thought I was having a relapse and I wasn't. I can you tell you how to get your MRI reports but I have a feeling if I do it'll come back and bite me in the ass. Nobody knows that ive been looking at the reports this entire time. Im sure there are people from Opexa that frequent this site and id rather not publicize how ive been doing it. If I do they'll close the loophole immediately.
Posted: Fri Jul 18, 2008 1:43 pm
by mrhodes40
Goodness where do you live??? I am in Washington in the US.
I just tell the MRI facility that I want copies of my MRI and reports and bingo they come to my house a week later in the mail. I have CD of my last MRI and I can scan through my brain and see lesions appear and disappear which is spooky.
I can also go to my cupboard and take out the flair images of the lasts 5 MRI's and compare them , but the really great thing is that if I get a new doc I can take them with me to the first visit. Cool! Maybe we have rules in Washington state that allows it specifically they did not even question it when I told them this was what I wanted.
I hope you get copies of everything
Posted: Fri Jul 18, 2008 1:49 pm
by Jamie
Yeah same here, we've got CD's of all Mel's MRI's.
Posted: Fri Jul 18, 2008 7:04 pm
by CureOrBust
Kyle wrote:Cure they stick the needle in your arm. Only for a minute to inject the dye then it's out.
I am guessing directly into a vein?
Kyle wrote:If you are a bit screamish about needles, you really would not like this treatment. You need to have a lot of blood tests and have a hickman put in. MRI with contrast is nothing.
I am "OK" with needles. I watch when my doc takes blood. But normally I use Emla (local aesthetic). Its just the pain that bugs me. But I think its the combination of the thought of a metalic instrument piercing my skin in addition to the actual pain. If I take the pain away, I have no problems. On my last blood test no blood came out at first, so I started to laugh while the needle was still in my arm, saying to the dr "this cant be a good sign..."