Bad news - MRI results

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

Postby Lyon » Mon Dec 15, 2008 5:33 pm

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Postby Jamie » Mon Dec 15, 2008 7:02 pm

I thought I posted that a while back, it's in my bookmarks.

If I didn't apologies, but that article is what made up our mind and why we are so dead set on re-doing the treatment if Mel reactivates. The second dose will surely kill all the memory cells.

Third time though? Not so much.

It's tough being guinea pigs, but surely we owe ourselves a second throw of the dice, after all Camapth often needs two infusions too.
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Postby Lyon » Mon Dec 15, 2008 8:07 pm

oo
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Postby RedPenguins » Mon Dec 15, 2008 11:41 pm

Thank you, Bob, for posting this.

My thoughts are exactly that.... and no, I'm not a doctor, nor do I play one on TV - but I have some ideas! I have thought that re-dosing is smart.

Of course, I plan on telling Dr. Kerr to fill me up with that good ole poison - I tolerated the first round with tremendous ease: this time - I want to be sick as a dog, knocking on death's door, puking up my innards, and preferably lose some weight this time (I gained weight last time!). Then I will feel like my immune system has been obliterated. I also think staying at or near zero a little longer might be wise....as I never even hit zero before they began the growth factor treatment.

Dr. Kerr has told me that re-dosing is an option.

I hope to speak with him tomorrow, presuming I can wake up before it's 5pm in Balti!

~Keri
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Postby mommasan » Tue Dec 16, 2008 6:50 am

Well, I don't think you need to get sick for it to work. If I recall, Mel's count got below 50 and so did Marlene's and neither one got terribly sick. Chris's didn't get as low as theirs and he was sick as a dog. Don't recall what mine got down to. I wish I did right now, as it seems to be the key.

Sandy
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Postby mommasan » Tue Dec 16, 2008 7:31 am

This data makes me think that we should be taking copaxone for months before we start the HiCy and continue it during and after.
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Postby chrishasms » Tue Dec 16, 2008 9:59 am

Well I am pretty sure I will be getting round two.

Right arm is starting to suck again and legs are getting heavier daily. My 1 year is March, so I figure I will be there in May this year. However I still am not suffering from fatigue thank God.

It's nice because I actually know this time so I can save some change and not go into credit card debt LOL!
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Postby Jamie » Tue Dec 16, 2008 1:22 pm

Mel's WBC went to 0.

Has anyone had bloodwork recently? Interested to see the WBC and particularly the lymphocite numbers.

Mel's counts at 6 months were all slap bang in the middle of normal except limphocites which were below normal in number.
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Postby mommasan » Tue Dec 16, 2008 1:34 pm

I'm about 6 months out. Same as Mel. Lymphocytes are still slightly below the normal range. All else is normal. I don't know whether my count went to 0 or not.

Sandy
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Postby mommasan » Tue Dec 16, 2008 1:36 pm

Just checked. Lymphocytes were 748.

Sandy
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Postby chrishasms » Tue Dec 16, 2008 5:23 pm

I just had all my stuff done. My blood Sugar was 100. The doc didn't mention anything else. They checked my thyroid too.

I'm healthy as an Ox.

However Chenell said something to me that made big 'ol lights flash:

My Neutrophils hit 0 but my WBC never did. Now I wonder since this is a Phase II trial, did we just find our placebo group??!! Did we get the real thing ( full version ), or, did we get enough to ALMOST do the job?

http://www.chrishasms.com/blog/2008/03/ ... post-hicy/

See what I mean?
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Thank you to all the HiCyers

Postby greenwave » Wed Dec 17, 2008 8:21 pm

I have been lurking around this forum and on all the blogs since March when my husband was diagnosed with MS. Although I'm a physician, I found out about this first from you all. This should tell you about the state of our collective knowledge. I cannot even tell you how grateful we are that we discovered this. We are finishing our HiCy treatment currently, although with 2 episodes of a blood infection, it has otherwise gone pretty well. I am sorry to have heard about some of the recent setbacks for some of you. All I can really say is that that really sucks and that you all have given not just us hope. but hope for other patients who may benefit from this procedure. Not even to mention that this is way safer than a bone marrow transplant yet with similar efficacy. So you've saved current and future lives.
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Re: Thank you to all the HiCyers

Postby Lyon » Wed Dec 17, 2008 8:49 pm

oo
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Postby Jamie » Wed Dec 17, 2008 11:14 pm

Well put.
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Postby mommasan » Thu Dec 18, 2008 6:57 am

Had my 6 month at JH yesterday. I am doing somewhat better strength-wise and balance-wise and spasticity. I had no new or enhancing lesions. I spent a good deal of time speaking with Dr. Kerr about the HiCy. I am paraphrasing him: About 20-30% of people have a high level of the enzyme that detoxifies the cyclophosphamide. These people will not get down as low as the rest of us, or stay low for long. My count went to 16 the next day it was 17 and it stayed low for several days. The fact that it stayed low was a good thing according to Dr. Kerr. Body weight plays a role. If you are bigger you have more plasma. This means the medicine is more dilute in your body and you don't get the same intensity of the blast as a smaller person. The problem that Dr. Kerr wrestles with is: How do you know how much more you may need give people who are heavier for their size and/or who have high levels of the enzyme? Too much can kill. There were a couple of people who had to be retreated in the original group and are doing very well. Chris, as far as Dr. Kerr is aware (Keri needs to update him) is the only one of the 29 who has reactivated. He's still not sure of the significance of the copaxone in all this.

Dr. Kerr feels that all the tingling and pins and needles I have been experiencing could be signs of nerve healing. So, only good news for me. No 4-AP yet. A few people have been accidently overdosed, and had seizures, by compounding pharmacies because it is not standardized enough while compounding. So, I will wait till 09' when it is FDA approved.

Sandy
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