Someone other than Chris

A board to discuss Revimmune as a potential therapy for multiple sclerosis

Someone other than Chris

Postby chrishasms » Mon Dec 01, 2008 3:55 pm

I had talked to one of the Docs at JH and I won't say who, because I didn't ask if I could say this lol.

They have had to treat someone else again. I have no idea who. I guess they are 3-4 months out. I have no idea how long they made it before they reactivated either.

I may have experienced some fatigue today. I had a crap night though so it's hard to say.

Wed I am in JH so on Thursday or Friday I will tell you what the thoughts are.

I still don't feel any more disability than I did before I knew
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Postby steven73 » Mon Dec 01, 2008 6:33 pm

Hi Chris,

Do you know if they were treated with Copaxone or not? My MRIs were stable when I saw Drs Hammond and Kerr back and October so I'm 4.5 months out and about the same.


Are you pretty certain that you'll do the treatment again if it's offered?

Steve
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Postby chrishasms » Tue Dec 02, 2008 1:16 pm

Sure why not? I got better somewhat, and it wasn't that bad.

The biggest thing I am interested in, is the other diseases who have been treated a second time and then they are in remission for a long term.

I have no Idea what but I guess they have had to do treatments in other diseases more than once to get it to stick. I may be wrong but that seems right.

Maybe my MS is one of those? I would hate to not try it to find out. Three times....now that one we may need to discuss.
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Postby Lyon » Tue Dec 02, 2008 1:53 pm

oo
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Postby Jamie » Tue Dec 02, 2008 3:56 pm

Mel's having some issues, including new symptoms (bladder).

She's having an MRI next week, she will do this again with a longer period of being at 'zero' if necessary.
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Postby Lyon » Tue Dec 02, 2008 4:35 pm

oo
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Postby steven73 » Tue Dec 02, 2008 5:24 pm

Lyon wrote::lol: I've kind of got an idea that it's the same deal as treating cancer......it's essential to get every last bad cell or sooner or later the disease will be back...with it in mind that MS is not generally fatal so the researchers set the dosage level of Revimmune at a level to be effective yet as safe as possible. Maybe/probably they decided to err on the side of max safety and not effectiveness.

From the start I've wondered if there were sometimes white blood cells circulating deep in tissue which didn't make it back into general circulation in the time frame that HDC is still potent enough to eliminate them?

That's why this stuff is experimental, still a lot to be learned.

Bob


This went through my mind a lot while was doing HiCy. I want to say that my white cells bottomed at around 80. I wondered should it be blasted down to zero and then one more dose after that?

Chris, I remember Dr. Brodsky saying that he felt that HiCy was safer, in terms of cancer risks, than doing monthly pulse doses of Cytoxan.
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Postby pvns2005 » Tue Dec 02, 2008 5:34 pm

My white blood count bottomed out at negative 50 on HiCy. I guess that's less than zero. Logicaly, I should have never left the hospital.

Chris S.
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Postby RedPenguins » Wed Dec 03, 2008 5:19 am

I never quite hit zero....and it took a long time to even get low....and what freaked me out is that they started the growth factor before I even got low. My counts were very good throughout all of this - and I was doing well - that on several days post treatment, I was allowed to go outside - I wasn't on lock down. I wished it had gone down to zero or that I had gotten sick. I kept questioning everyone - and the docs and nurses all said it was fine.

When I first met with Dr. Kerr he even told me that one person who was treated earlier would be undergoing a second round of treatment.

I do believe there is a lifetime max for cytoxan....and so it isn't a viable option for continued repeated high dose blasts. But I know a second course is possible.

I agree with the others here - I would definitely undergo this treatment again if my health started failing like it was before.

I have to admit also, that I am SO sad to hear about you Sandy, Chris, and Melissa (Jaime)....it would be my worst nightmare come true to have this reactivate.

At the moment I'm "celebrating" as it is clear that I have NOT gone into early-menopause and so my fertility should be just fine. That and the hair loss were my biggest issues with the treatment! And my hair is growing back as thick and curly as it was before....and unfortunately with more greys than I'd like. (Kinda hoped it would come in straight this time - but I think it's curlier than it was before. Oh well, will go back to straightening it soon!)

I hope all of you will come through this okay.... please keep us posted.

Jaime - send my regards to Melissa - and tell her to email me!!

~Keri
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Postby steven73 » Wed Dec 03, 2008 6:49 am

Keri,

Glad to read that you're doing well! That's one thing I forgot to mention...my straight hair came back curly! :P There isn't one curly haired person in my family of two parents and five children. But I'm just happy it came back.

When I first read that Chris relapsed, my thoughts were "Ok, it really sucks but that's one person." It was discouraging when I realized that he was treated with Copaxone. But now there's what potentially three?

One thing Dr. Kerr told me was that for the first six to nine months, the treatment itself could potentially aggravate old/budding symptoms in some patients. So maybe these aren't complete relapses? Just trying to see the bright side....
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Postby mommasan » Wed Dec 03, 2008 6:53 am

Well, proportionate to body size, I probably got a higher dose than some of you. The cytoxan was given to ideal body weight. If you were above that, even substantially, then you got a lower dose than someone like me who was 88 pounds. I got it to actual body weight. We will see what my MRI's show, but I really am not doing well.

Sandy
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Postby mommasan » Wed Dec 03, 2008 7:01 am

One more thought. Even healthy people have mylein-reactive t-cells. But their blood brain barrier is not breached due to MS. Ours is. So, even if we retain a modest level of autoimmunity, we can have damage. Hopefully someone with more of a scientific brain cam chime in on this.

Sandy
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Postby Jamie » Wed Dec 03, 2008 11:00 am

Mel has her MRI today, we'll know then whether there's current activity.

The good thing is last time I freaked out the MRI was clear, this time I'm freaking out its time for an MRI.

Bob - all done in conjunction with JH.

Good point about body weight.
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Postby Jamie » Wed Dec 03, 2008 11:01 am

Also a good point about the BBB.

Honestly, if I hadn't have found this forum I probably would have had a nervous breakdown by now and its not even ME with the MS.

thanks guys.
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Postby Jamie » Wed Dec 03, 2008 11:04 am

Lets also not forget that JH are learning this as they go along too.

There'll be people who are harder (perhaps even impossible) to treat than others.

The MS process is not understood fully so a method of treatment QED cannot be fully understood either.
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