Waiting for an appointment...

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

Postby chrishasms » Mon May 19, 2008 7:51 pm

LOL!!!

Haven't you noticed I'm a no legged man in a ass kicking contest!

LOL!!
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Postby RedPenguins » Tue May 20, 2008 11:56 pm

I WROTE THIS LAST NIGHT - AND THEN MY INTERNET WENT KERPLUNK - SO POSTING IT TODAY!!

Well, I did hear from JH today. It seems that they have contacted a bunch of people to get them set up in their system...and I'm one of them. Guess slow movement is movement. I have a tentative date set up - though they told me that I would be seen much sooner. I plan on continuing to be proactive to get myself seen there as soon as possible. It does seem that everyone is being told the same standard line, so to speak. Naturally, you might tell from my other posts, that I don't do "standard" anything! Thus, I will continue my campaign to get to Balti sooner! I seem a lot more serious than others who have posted on this and other forums (at least some of the posts I've read people aren't 100% certain they would even do it)....but I'm 210% going to have this treatment and want this treatment and as soon as they give me the word - I'm there. I don't need to think about it more.

Chris & Jaime - thanks for having my back! ;)

777 - aka Katje from the other forum - interesting you said here that your appt is for June, yet on the other boards, you are upset b/c your appt isn't till "next year".

Also interesting that you'd want to try a treatment such as this considering they really feel that those with active inflammation have a better chance of success....and you don't have any active inflammation. Regardless, I wish you luck and success in this or any treatment option you pursue.

Okay, time to try to sleep.

It was 98+ degrees here today - of pure heat. My sx are out of control at the moment. :( And even though I wasn't in the heat much and it's been hours since I've been exposed to it - they aren't letting up. Sigh.

~Keri
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Postby chrishasms » Wed May 21, 2008 5:24 am

Ya it's getting hot and my magic number is around 75 in or outside. I still have damage so as soon as it gets hot all the stuff that bugs me comes back but not as bad. I can still walk easier than before but the fatigue can suck if I don't get a perfect nights sleep.

Again, totally heat related. When it was still cool I had nothing. The heat fatigue now is still different and better than the MS fatigue from before.

Hang tough folks I got some bad info. I was told wrongly they were shoving them in as quick as they could. I guess they are getting everyone ready for the Phase 3 and doing the off label as quick as they can.

I know it sucks to say this but - "patience".
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Waiting for an Appointment

Postby susan » Thu May 29, 2008 6:03 am

Hello-

My name is Susan and I have been reading everyone's entries.

I founde Revimmune myself (not thru my doctor, which really angers me) and am more than interested.

my EDSS score is 6.5 and to quote Marie "I am out of wait".

I have talked to Carrie at JHH and JHH has my file.

From what I have read should I be bgging Carrie for an appontment? She indicated six months to me also, possibly sooner.

I have so much to say-this forum has educated me so much, but i type with one finger so it is difficult to address everything.

At this point my life has become very limited.

This protocal makes so much sense. Its drastic but my life sucks so much (sorry if anyone finds that offensive). I just need one positive.

How do I get to JHH sooner? Thank you.
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Postby HiCy » Thu May 29, 2008 11:45 am

Susan,

Squeeky wheel gets the grease. You need to be persistent. They have your file but do they have a recent MRI? I would get your doctor to prescribe one for you and get it down to them. It gives you another reason to call Carrie and push your case.


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Waiting for an Appointment

Postby susan » Thu May 29, 2008 1:21 pm

Thank you Hi-Cy for your advise.

They have my MRI civical and brain, but not the thoracic. Thank you for your input. I will try using your advise.


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Postby susan » Sat Jun 07, 2008 10:05 am

Just wanted to say I spoke with Carrie yesterday and she indicated JHH won't be treating SPMS (me) until the fall.

However, I did find our conservation positive. She is very good at her job.
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Postby rainer » Sat Jun 07, 2008 11:02 am

I think it's great that they are planning on treating it when so many others won't even try.
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Postby chrishasms » Sat Jun 07, 2008 11:04 am

So they are for sure starting spms in the fall.

Thank God. Simply stated.
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Revimmune

Postby Brainteaser » Sat Jun 07, 2008 7:54 pm

This treatment (cure?) sounds very encouraging and I commend those who are taking the initiative to try it. I would likely do it if offered but I fear I might have the wrong MS profile (basically PPMS) plus I'm a bit old and grumpy.

But my key query is whether JH is taking non-USA patients? I read that 777 is from Finland? - I assume this means the place near Russia. So, do people here know on what basis they are taking non-nationals? - ie is it a certain percentage of patients or people from particular countries? Maybe I need to wait until the treatment hits our shores or is picked up by one of our Asian neighbours.

Thanks,
Phil
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Overseas patients

Postby sandonpoint » Sun Jun 08, 2008 5:45 am

My guess is that they would welcome overseas patients, but from reading other peoples posts, you need at least $80,000 US Dollars ( Eighty Thousand ) , just typed it twice so you know ;)

$30k plus for your treatment and $50k just in case something goes awry with the chemo and you need intensive care.

But the advantage for overseas patients they dont have to deal with insurance companies , just write out the check or use your black Amex card and your away simple ! <- sorry for carcasm, but its sooo much cash.

My advice for you is start to lobby relevant peeople in your country ASAP.

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Postby Jamie » Sun Jun 08, 2008 9:25 am

In the UK you can lobby your local NHS trust to contribute to treatment overseas if it's not available in the UK.
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Postby Cyclops » Sun Jun 08, 2008 9:45 am

I'm from the UK. When I phoned Carrie she didn't say anything about it being a problem - quite the oppositte. She was keen for me to send my records.

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SPMS

Postby ladystewart » Sun Jun 08, 2008 11:08 am

susan wrote:Just wanted to say I spoke with Carrie yesterday and she indicated JHH won't be treating SPMS (me) until the fall.

However, I did find our conservation positive. She is very good at her job.


I have been viewing site since Feb 2008 and could not log in to respond--oh well...Now I can :)

I talked to Carrie and she infomed me that JH had my records. Dr. Hammond has called me as well. I was diagnosed RR (as all are) and am now SPMS now--from doctors. I found Revimmune on my own 6/2007 but now out of wait!! Doctors do not recommend this--I am so glad I found out about Revimmune!! Many need to know.

I have 2 children and my husband and I are happily married (15 years and counting) but my lifestyle has changed drastically. My children wish to go swimming at times and, I used to be a liifeguard, I cannot swim or save them as I used to be able!!! SCREAM :roll:

JH next stop--as soon as possible. I hope I see many there.
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Postby robbie » Sun Jun 08, 2008 3:05 pm

JHH won't be treating SPMS (me) until the fall.

this might just keep me alive.
Had ms for over 19 years now.
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