NeuroTalk Support Groups - HiCy tomorrow (Thursday)

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- - HiCy tomorrow (Thursday) (https://www.neurotalk.org/multiple-sclerosis/49168-hicy-tomorrow-thursday.html)

I found this and I would call it, a must read for anyone interested in the HiCy treatment.

Long, but so interesting......

http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm

Hi Keri -- Good luck with your treatment. I will be thinking about you. I guess you must have finished the chemo already?? Check back and let us know how you are doing.
Hugs, Natalie :)

If her first day was Thursday her last day will be today. Then we wait for her neutrophils to hit 0. When she hits 0 she will begin the Filgrastim. Around 3-5 days.

She may be one of those that doesn't get sick but the headache I had was bad and I got sick.

I wouldn't expect to hear anything from her until Mon or Tues. The chemo is accumulative so the further in you go, the worse you feel.

Keri-

Hang in kiddo...your already getting better!

how did u make out with your revimmune trial
my wife is considering it
any improvement in vision or gait?

thanks

Quote:

Originally Posted by RedPenguins (Post 314566)

Hello everyone,

Just wanted to drop a quick note to say hello...and goodbye for now. Tomorrow I enter the hospital to start the HiCy (Revimmune) treatment. I am both excited and totally scared out of my mind. Not afraid of death (especially as there have been none with this treatment thus far) - just the whole idea of this process is mind-blowing. Then again, this whole MS thing has been rather mind-numbing to say the least.

In preparation for my upcoming hair loss, I had my hair cut short. Way short. However, the short is temporary, as baldness will soon follow. I bet at that point I will surely miss the short haircut! :eek: I do have a lovely wig though :cool:

Tomorrow morning I go to the hospital to have my central line (Hickman line) put in and then I get admitted.....and the first dose will be around 9-10pm........

So if anyone has any good/positive thoughts to send out toward Baltimore tomorrow - please feel free to do so!! I'll take all I can get (yeah, I'm being greedy with this one :p)

Hope everyone is doing well and continuing to fight the good fight (whatever the heck that means). I am the 26th person with MS to go through this process of HiCy at Hopkins...and I believe the most recently diagnosed. Hopefully the docs will continue to learn more about how to keep improving this treatment until it is a cure (or another cure comes around).

~Keri

good luck with your tx.
i hope it helps and you feel better. :hug:

Paviza - I underwent HiCy twice - July 2008 and May 2009. My life has drastically improved. I show little to no signs of MS anymore. In the beginning of the month, I participated in the Bike MS event! :) Every day I am thankful for having undergone this treatment!! Please private message me - and we can email if you have more questions!! ~Keri

Good luck! we are praying for you :hug:

A friend recently went to Rush in Chicago for HyCy. Here is a link to her blog for those interested. http://www.latemstunnel.blogspot.com/

I have been on a gram of Cytoxan IV weekly since July and it has helped tremendously to peel back the symptoms of progression that came about after a nasty long term infection. I actually feel better after each infusion than I ever did while on Avonex or Rebif or IVSM or IVIg. It is chemotherapy and does have risks but it seems to be working for me. We are keeping my white count between 2.0 and 2.5. Above 3.0 I have bladder, bowel, vision and spastisity problems and cognition and emotions run rampant in a not so great way. My doc said that having MS for almost 25 years with no treatment then starting to address the issue several years ago might have something to do with how well I am responding. It's been 35 years now with MS and I am grateful we have treatment choices.

Do any PPMSers have any experience or is it for RR?

I don't believe there are any studies using this for PPMS. I have not seen anything on it for MS other than relapsing forms.