Cheryl, thanks for posting those links. I've been away from the computer.

Anyhow, the actual med (chemo drug) in HiCy has been around forever. The application in high dose and the follow-up care is technically what makes HiCy/Revimmune differently.

Currently only Hopkins is doing it - though there is talk that they will be starting (no idea when) in Denver and Chicago - but I have no official documentation on that.

Barb, yeah, it sounds scary if/when you don't have all the facts - which you can get from JH's people if you are interested.

The death/fatality rate is less than that of avonex (or other inferons) apparently. It is less than 1%.

They have performed HiCy on 20 people with MS thus far...and many, many more in the works. They have performed HiCy on over 200 people with various autoimmune diseases. It seems, however, that with MS it is most promising.

While they are not calling it a cure, they are calling it a cure. LOL

After the procedure, you do receive a growth hormone to help reboot the system and bring your blood counts back up. After a few months, you will begin copaxone for 6-12 months. They believe this may be the key to keeping the new immune system from having any thought of going wacky on itself.

Cheryl, thanks for posting those links. I've been away from the computer.

Anyhow, the actual med (chemo drug) in HiCy has been around forever. The application in high dose and the follow-up care is technically what makes HiCy/Revimmune differently.

Currently only Hopkins is doing it - though there is talk that they will be starting (no idea when) in Denver and Chicago - but I have no official documentation on that.

Barb, yeah, it sounds scary if/when you don't have all the facts - which you can get from JH's people if you are interested.

The death/fatality rate is less than that of avonex (or other inferons) apparently. It is less than 1%.

They have performed HiCy on 20 people with MS thus far...and many, many more in the works. They have performed HiCy on over 200 people with various autoimmune diseases. It seems, however, that with MS it is most promising. Actually, several more people have just finished receiving the treatment, so the # is probably higher than 20.

While they are not calling it a cure, they are calling it a cure. LOL

After the procedure, you do receive a growth hormone to help reboot the system and bring your blood counts back up....you are not released to go home from JH until your blood counts, etc. are at a functioning and safe level. After a few months, you will begin copaxone for 6-12 months. They believe this may be the key to keeping the new immune system from having any thought of going wacky on itself. After the treatment (and during) you are given antibiotics. You will remain on the antibiotics for several months. After one year, you will receive your childhood vaccines again.

There is a "Waiting list" at hopkins, tho I do not think it is one year. Talk on the boards is talk on the boards, so to speak. Take it with a grain of salt until you can confirm the information - or at least that is how I approach it. I do not know if they are taking people on the basis of how "poorly" they are doing or how good of a candidate they are. Apparently, they believe using HiCy on those more recently diagnosed is also very good - to stop the disease in its tracks, so to speak.

JH received my records on May 1. I have spoken with several of the doctors and coordinators. They are all very receptive and open...and will talk with you and answer your questions. If they think you are a good candidate, you are invited out to meet with the doctors. Apparently there is wait for the appt because it involves coordinating the neuros with the hematologists/oncologists, etc - tho again, I have no idea how they are going about this - determining who gets in first - if it is first come-first served or what.

I now have my appointment and will be leaving VERY soon to go meet with them. The protocol involves going to meet with the doctors to reconfirm you are a good match for the treatment. You go home while they get insurance approval. They order a bunch of pre-treatment tests for you to have done while still home. Hopefully within 6 weeks (or less), you will have insurance approval and you go back to hopkins for the treatment.

At that time, a Hickman line (central line) is placed in your chest. Then you are admitted into the hospital for 4 days of the drug. After that, you are released to a hotel or living place within close proximity to the hospital. You have your blood checked daily or near daily until you are again back up to a safe level of wbs and neutrophils. This should be about 14-15 days POST release from the hospital. You need to have a caregiver stay with you. They all monitor you very closely.

At approximately 12 days post treatment, you will lose your hair. While the day isn't exact...the fact that you will lose your hair is a fact. Women under 35 have less than a 5% chance of going into early menopause/becoming infertile. However, I have heard (THO I CAN NOT CONFIRM AS OF YET) that in this 5%, some have experienced a reversal in that early menopause (meaning it was temporary).

You then go back to JH for follow-ups starting at 3 months.

Obviously, there is a lot more to be said, like most treatments. And it is an individual choice, again. A lot of neuros do not know much about it or dismiss it or talk patients out of it. Again - I approach this as: It's my disease + It's my life = it's my choice.

Please do not take anything I have listed as fact (except the part about it being my choice and that I'm going VERY soon!!!) until you confirm the information!! I am not a doctor, I am a patient. I advocate for myself and ask questions. Feel free to ask me a question, and I will answer it if I can...

~Keri

ps/now I have to go pick up oral steroids - as my neuro - who didnt call me until 5pm today even though i started leaving messages on Wed night letting him know that I thoughtI was having a flare up....so even tho he wanted IVSM - they didn't start working on it until late on the eve of a holiday weekend. It's now 9pm and no one contacted me - so I had to call the on-call doc - who has called in oral steroids b/c we don't know if anyone got thru to anyone about the IV stuff! grrrrr.