So Keri and Me?

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

So Keri and Me?

Postby chrishasms » Mon Jan 26, 2009 4:42 pm

So Keri and I are the only ones eh?

Just curious if anyone else has popped off anything. I am starting to wonder if I am the guy who popps of one or 2 lesions then never has an issue again.

I just feel better than I have in a month so it got me thinking.
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Postby RedPenguins » Mon Jan 26, 2009 8:48 pm

Chris - I keep thinking that we will be like that other person and now be miraculously cured. I feel less confident in that, especially knowing that the doctors have thought now that the dosing might have been off due to my weight. :(

I go see the docs on Feb 11. Too far away for my taste....but I guess it doesn't matter. I'm thinking they might not have much to offer me? I want to/will do the treatment again - are they offering you a re-dose as an option??

I just finished taking my 6 months of antibiotics.

My hair is growing back nicely...so truthfully, if I have to have tx again, I'd want it sooner than later! No sense in being miserable with the short hair trying to grow only to lose it again and have to go through the growing again. Sigh.

Glad to hear you are feeling better. I am feeling a little better....but nowhere near where I was back in the fall. Still symptomatic.

~Keri
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Postby chrishasms » Mon Jan 26, 2009 9:33 pm

Well I have talked with them about retreating but I won't know until March if we will do it. I'm pretty stable right now.

I am thinking we taught them something. I bet you didn't get enough and compared to everyone else, I'm not sure I was kept at 0 long enough. I was at 0 for maybe, maybe a day if that. Chenell doesn't think I hit complete 0 and I don't really remember.

I'm hoping to make it to June, it's my birthday and rather than a bad MRI for my birthday like when I was diag'd in 04, maybe I can FINALLY be rid of this crud disease for a birthday present.
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Postby RedPenguins » Thu Jan 29, 2009 2:57 am

I never even hit zero.

I'm going on Feb 11th to meet with them... we'll see what they say...
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Postby chrishasms » Thu Jan 29, 2009 9:57 am

See I wonder who else didn't. Doc B just told me they redid someone else with MS just 4 months ago. I wonder where there counts were.

If you are out there, please let us know!!
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Postby Lyon » Thu Jan 29, 2009 2:53 pm

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Postby RedPenguins » Sun Feb 01, 2009 2:51 pm

I'm sure I could have been dosed higher - bsed on how ridiculously well I handled what they gave me! I will re-do the treatment if they offer it to me - and I would anticipate that this time I would get very sick ;( or ;) depending on how you look at it!

Of course, my hair is growing out well - and the thought of losing it again makes me feel sick (hey, sicker than the actual chemo made me! ha ha). It's going thru the "ugly phase" on it's way to having some length. So just like the first time I considered having this treatment, this time my biggest concern is the hair loss. Some things never change!

I've been wearing a wig to work still - and I could totally go without it - but am leery to do that until I know if I am having the treatment again - b/c if so, I will need to wear the wig....so I don't want to go from my long-haired wig to my own short hair, back to the wig! Oh, the dilemma of being a woman!

~Keri
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Postby Lyon » Sun Feb 01, 2009 3:17 pm

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Postby RedPenguins » Sun Feb 01, 2009 10:49 pm

LOL - thanks Bob....that made me laugh out loud for sure!

I actually just finished coloring my hair - as it is coming in very grey. I had grey before - but now it's worse. Ho hum.

Once again I feel like my life is on hold - waiting to see "what next".... I often lose hope....so many people (pretty much everyone) said that there would be a cure in my lifetime and to be thankful I got sick now and not years ago, etc. etc. I am glad that Obama is allowing stem cell stuff to happen.... but I guess it is extremely hard to hold the hope that something, anything, can "cure" this or reverse it altogether.

I guess we will have to wait and see. Sigh. My worst nightmare!

~K
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Postby mommasan » Mon Feb 02, 2009 8:55 am

Keri,
I believe there is still so much to be uncovered in MS research. I am pretty sure that it will come soon enough to allow you to have a normal active life. Unfortunately, Revimmune continues to be the sledge-hammer until a more precise tool can mainstream. I know that Dr. Calabrese recently presented in NYC about the new research he is doing at Hopkins. I also know that Dr. Kerr has written about stem cell research he was doing on animals. As far as the Obama administration goes, I am sure it will be a priority. Michelle Obama watched her Dad die of MS.

As far as progressive people like me, I don't have as much hope for being normal. My last search on the NIH website for SPMS showed very little in the way of clinical trials. The thoughts that axonal fallout just happens without immune involvement have never sat well with me, though. If MBP8298 can slow progression in SPMS and people with PPMS have been shown to improve with aggressive IVSM therapy, there must be immune involvement even at the later stages of the disease or disease processes where inflammation can not be detected.

I came upon research that was being done at Hopkins and completed in 2002. One group of MS'ers was getting HiCy. The other was getting cytoxan AND Campath for total immune ablation, followed by stem cell re-infusion. They did test for bands to see if it was effective. Anyone heard of this study? What happened to the groups of people getting this unbelievable protocol? I can't even imagine going thru this.

Sandy
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Postby chrishasms » Mon Feb 02, 2009 10:06 am

I had talked to Dr. Corboy hear in Denver and he too said, "I would love to see the spinal fluid before and after to see if the bands are there."

I just want to do it again.
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Postby RedPenguins » Mon Feb 02, 2009 4:10 pm

Chris, I wondered about that - spinal fluid. I never had a spinal tap, so nothing to compare it with - but I thought that should have been required for data to see if there was a difference. I don't know much about the spinal fluid and if it changes anyhow as time progress (ie: can results vary from time to time?).... but definitely interesting. Not that I'm volunteering to have it done (can you say OUCH, im a BIG baby!!) - but I guess I might question them this time around.

I'm all set to see them a week from Wednesday. Yeehaw.

~Keri
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Postby mommasan » Mon Feb 02, 2009 5:35 pm

Keri,
It's kind of a fete de acompli. I was offered a test when I was pregnant to determine whether I'd go into early labor, which I did. I refused the test, because even if it said I would deliver early, there wasn't a damned thing that could be done about it at that point to stop it. It would only have made me panic to no end. I don't really want to know whether I have those marker bands, because it would only make me obsess about it continuously. As it is, I think about it all the time.

Sandy
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Postby Jamie » Tue Feb 03, 2009 4:44 pm

What are 'bands'?
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Postby chrishasms » Tue Feb 03, 2009 10:18 pm

http://www.webmd.com/multiple-sclerosis ... spinal-tap

This is better than I could ever do. Corboy would have liked to see the before and after.
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