rebooting at JHH

Jamie · Post by **Jamie** » Fri May 16, 2008 10:11 am

Even better 777.

Cyclops just bumped the contact post up mate on the main list of posts within the revimmune bit, should be easy to find now.

Cyclops · Post by **Cyclops** » Fri May 16, 2008 10:19 am

Merci beaucoup mes amis. I will contact Carrie as soon as possible.

o-)

Cyclops · Post by **Cyclops** » Fri May 16, 2008 11:09 am

Just spoke to Carrie. She was very helpful and has asked me to send my records in. Here's a little summary of what she said:

1. At this stage they would only be interested in seeing basic records specifically the radiologists reports not actual MRI scans.
2. They are most interested in people who have active enhancing lesions as they believe that these people would do best.
3. Its still possible to take part in the current phase II trial though I guess its depends whether you're eligible.
4. Out of pocket cost is $80,000 though most get part of this back.
5. If they accept you, it can take around 6 weeks for an initial appointment followed by another 2 months or more before treatment.
6. The phase III trial is currently planned for next year.

I guess none of this is new info but thought I'd share it anyway.

o-)

chrishasms · Post by **chrishasms** » Fri May 16, 2008 11:14 am

This is quickly being covered by all insurances so if you have insurance this will cost you only what insurance doesn't cover and the cost of living for one month.

The 80k is only if you don't have insurance.

777 · Post by **777** » Fri May 16, 2008 11:17 am

Thats why I am puzzled that they want to see me, I asked Carrie twice and talked to Dr. Hammond once. ButI have yet to recieve a call for an acutal appt. That's why I hope I dont invest the money to fly up there just for nothing.

Although I wouldnt have to worry about debating on having the treatment or not. lol

Jamie · Post by **Jamie** » Fri May 16, 2008 1:06 pm

yeah our medical cost was $4500 + prescriptions

Lyon · Post by **Lyon** » Fri May 16, 2008 1:16 pm

Jamie · Post by **Jamie** » Sat May 17, 2008 5:49 am

medical only, i.e. that's the bill we pay Hopkins.

the 'soft' costs were around another $7000 for accommodation, food, transport, parking etc, etc. It could be done a lot cheaper, it's just I'm a snob and we went first class all the way!

chrishasms · Post by **chrishasms** » Sat May 17, 2008 9:17 am

I hear ya, we went around 10k w/ the JH costs but I had to live life.

777 · Post by **777** » Sat May 17, 2008 9:50 am

I filled out some paper work late afternoon for tysabri. Since I have MS symptoms creeping back in on me, weak legs etc... I cant wait for treatment at JH. That and the fact nobody is calling me to set up an appt even though I was told they wanted to see me.

I realize they are busy, not their fault. But no guarente this even works or will be a benefit for me.

I was told anytime you mess with the immune system, it's dicey business. I just wish we heard from others that had this done, same more dont keep blogs. One would think out of the number of people who had this treatment more than a couple we would blogging it.

chrishasms · Post by **chrishasms** » Sat May 17, 2008 10:09 am

A lot of the people getting this are getting it because they have neuro's helping them. A good deal of them do not even have the internet.

I'm sorry they have not called you. I was very proactive and had her tell me who to call. I didn't wait for them to call me.

The simple fact of the matter is this: Every person who is getting this is happy they have done it. Go to the Tysabri forum on here and see how many folk are as happy.

If you are worried about your immune system WHY ON EARTH WOULD YOU MODIFY IT WITH TYSABRI!!?????????

I'm sorry it's too hard for you to believe the facts but all the folk who have done this so far have had their MS stop progressing or if they are not too far gone, are getting better.

I was there in HiPop w/ Steve from Virginia who couldn't walk and was worse than me when he got there and 2 weeks later was able too walk with his cane.

I was wheeled into JH and I can walk 100 yards now. This week I have stopped using my cane as much.

I really think this is a treatment for those who are proactive and want it bad. Maybe they never called back because they didn't really believe you were serious.

It's just my opinion and I don't mean to be rude.

chrishasms · Post by **chrishasms** » Sat May 17, 2008 10:15 am

http://ca.us.biz.yahoo.com/bw/080313/20 ... .html?.v=1

HA LOVE IT!!!

777 · Post by **777** » Sat May 17, 2008 10:16 am

They know I am serious, I talked to Dr. Hammond ( for about an hour and a half! ) and I have talked to Carrie 3 times. First time was when she asked for more MRI's, they wanted my history. The last 2 times I asked about my status and she said they definatly want to see me and someone would call in within 2 weeks, well 5 weeks have passed.

Who actually calls? A doctor or someone who just sets up an appt?

Only thing I can think of is maybe they are stack ranking, but they should have someone call and let people know. It's difficult for me to make arrangments, getting a hotel, someone to watch the kids etc... when I don't know what's going on.

chrishasms · Post by **chrishasms** » Sat May 17, 2008 10:24 am

777

If I was you I would leave message on their machine 2 times a day everyday until they had the shit straight.

mrhodes40 · Post by **mrhodes40** » Sat May 17, 2008 12:08 pm

If you are worried about your immune system WHY ON EARTH WOULD YOU MODIFY IT WITH TYSABRI!!?????????

You weren't talking to me,but this is exactly why I have refused any of the second tier drugs to date. I have been happy to try anything with no long term consequences (copaxone. methotrexate. abx. steroids) but have deteriorated right along. It just seemed a bad policy to me to alter your body in such a way that it can't recover. What if they find out MS is actually EBV in the b cells? And treatment is (whatever it is) and you can't have it because your immune system is permanently damaged by (some MS drug )?

This seems safe to me. And geez, I know scads of people who have taken chemo--most of it worse than this single agent. It is a well understood process, with known complications that can be managed.

Now if they were doing traditional ASCT with radiation, that's another cat altogether...........

sine we are on the subject, are the b cells killed in treatment as well? just curious.