Sheena is going for HiCy
 

I know this board is some what neg on HiCy, in spite of this, I want you to know I have passed the 1st stage of acceptance for HiCy. My records are are at J.Hopkins. I have been deemed an excellent canidate. I am currently awaiting a call to fly in and meet with the Drs. Then I will I hope and pray to get in fast.

I do not expect it to be easy - I expect to be very ill for several days. In the end - I do expect a cure for a while. Then I will go again if needed.

I know and neuros back me - I can not with stand another major attack. The 1st one almost took me out. I was lucky, then I got on ty fast. TY is great but it is as a friend said "a patch". It will not last forever and I am tired of being sick from it all the time.

The choice is mine and I made it long ago.

I ask only that u accept my choice and support me as I go into this. I have not made this choice based on info or results for any board member. As I stated, this choice was made long ago. It just took me some time to be sure - act on it - for all records to get to JH...

Hi Sheena - Glad to see your post. I wish you the best of luck with the HiCy and will say some prayers that it works for you.:hug:

CONGRATULATIONS, Sheena. :)

I'm a bit surprised that you are of the impression that the forum is negative on HiCy, and I don't think that is true actually. :confused: I know that people tend to be skeptical when a "magic bullet" is touted, but that's only because we have seen that happen, and not pan out, too many times.

Personally, I think HiCy might prove to be a great option, and I wish you all the best.

I hope you, Keri, and whoever else who tries this will keep coming on to tell us the progress you are making, because your input will influence some people to consider this viable option.

Whatever works!

Cherie

That's great Sheena!!! Have you been following RedPenguins?

Good luck Sheena and please keep us posted on your progress!! You've certainly been through a lot and need something positive to help you through this. :hug:

Sheena, where did you get the idea this board is negative on HiCY?

We are a supportive group when we are not being belittled or degraded. :(

(I think you are probably referring to Chrishadms...that's a whole different circumstance and you cannot consider that situation at all!)

YooHoo, Sheena. You go girl!! :)

Please do, report in often, to tell us of your experience and progress. We are here to support you.

OH, and what Av8rgirl said..;)

Good for you! Deciding treatment is a tough decision and posts about personal experiences from others whether HiCy, Tysabri, or even a CRAB is very important in making an informed decision. Please do keep us posted as you move forward with treatment, I think there is a lot of interest in the treatment here at NT.

Good luck Sheena! I hope you'll get great results with HiCy.

I don't think there's so much negativity, but maybe a little bit of skepticism or maybe fear of the unknown regarding a new treatment at times. I think we all agree though that we need to have a wide choice of treatments since we all respond differently.

If I needed HiCy treatment, you can be sure I'd take it as well. :)

Wishing you the very best Sheena.

I know that if I qualified, I'd go there too. It's a big leap, but like you suggested, if your disease has you on a ledge, that's the option left - a big leap.

Please keep us updated. The more posts people see about the process, the more comfortable people will become with hearing about it and understanding the "unknown".

I hope this treatment is a huge success for you.
:hug:

Sheena,

Anything to fight this monster is worth a try.

I hope that it works wonders for you.:grouphug:

-Vic

You'll be in my prayers, Sheena. Please keep us updated on your progress.

Sheena,

If I were in your shoes I would be going on the med too. It is one of a very few that actually work and it even reverses symptoms. That is a big WOW to me!!


Good luck to you.

gmi

I guess I've been out of the loop lately:eek: What is HiCy? I've seen it out here a few times but didn't pay attention. I thought they were talking about HiCi which is a nice fruity drink:thud::blush::ROTFLMAO::ROTFLMAO::ROTFLMAO:

I really don't know what it is:o

Best of luck to you - I hope it's a miracle drug!

Revimmune.

http://www.accentia.net/science/revimmune.php

Hi Sheena, I'm so glad to hear you have some hope back in your life! I know things have been so hard since the diagnosis. I wish you the best with HiCy!! :hug: Know that we all fully support you 100%. :circlelove: Keep us posted on the process.

YAY Sheena!!
 

Sheena, I'm soooo glad you posted this and let everyone know. Everyone here, so far, has been supportive of me. (btw, did you get my email the other day??)

Anyhow, I'm glad you have your foot in the door - now we need to get the rest of you there.

I am just about 2 months post treatment (2 months since the last dose)... So far is has been a magic bullet for me. I'm still "recovering" - but not dealing with the MS symptoms barely nearly as much. It's amazing. No, I'm not saying I don't have MS and I'm not saying "cured" quite yet (time will tell on that) - but I will say this - I am improved in a way that none of the CRABs, etc. have done for most people. I also believe that I am HEALING. This isn't just about symptom reduction and a slowing of progression...but I really think this is the closest we have to a cure right now and I will stand by that belief for as long as I can!

A few weeks ago I received the neurologist's report from Dr. Kerr from my initial visit at JH. Man, I was in baaaaaaaaaaaaaaaad shape. It was very difficult for me to read how bad it was. :holysheep:

I was saying to someone the other day - "this has been amazing because I'm certain that by Xmas I would have been in a wheelchair and now I'm not even needing my cane!" And her response was: "Christmas??"

- I thought she meant that I was exaggerating the situation, that it wasn't nearly as bad as I was making it to be - so I said, "okay, next summer?" She replied - "NOOOOOOOO, it would've been sooner than Christmas even!" I was kinda shocked because even though I was saying how "bad" I was doing - I don't think I ever acknowledged just how bad it was for me. :( :paperbag:

Sheena - I am sooooo excited for you - and I hope you get in soon.

I need to finish creating my blog (yes, I've started it!!) - and then everyone who wants to know can learn more about this experience.

While I'm not 100% better - I'm at least 100% better than I was before. (Does that make sense?)

~Keri

ps/Oh, and my hair is growing back!!

thanks for the link cheryl. i didn't know what it was either.

why do they call it HiCY?

i'm glad you shared sheena. and i hope it helps for you.
i look forward to hearing about how you are and hope you let us know how you're doing?

best of luck.

The HiCy stands for high dose cyclophosphamide, meaning that it's being used in high dosage over a few days with the intent to quickly eliminate the immune system rather than being used low dose, long term as a suppressing agent.

Cytoxan/cyclophosphamide has been around for over half a century and has had many uses in that time, including use as an immune suppressant against MS in lower dosages.

Despite the fact that most any sensible person wouldn't want to stand in front of ANY steam roller, the difference between "rebooting" and "long term suppression" is a little like the difference between standing in front of a stopped steam roller as opposed to standing in front of a steam roller that has been slowed down but is still rolling :winky:

In both cases a little difference makes for a huge difference in outcome.

At the end of the day it's probably true that the "rebooting" agents themselves are no great miracle, but the discovery of "rebooting" as opposed to "long term suppression" is the exciting difference and eventually, hopefully, a treatment will be discovered which eliminates specifically the factors responsible for MS and it won't be necessary to eliminate the entire immune system.

Bob

Sheena
I hope you get to do HiCy. Sending positive thoughts your way. Keep us posted.

:hug:'s

Oh, YooHoo, Sheeeeeeena....You still there? :)