This Is MS Multiple Sclerosis Community: Knowledge & Support

I haven't heard from anybody who had the HiCy treatment in July 2008. When I was at JH in July, they were pushing many patients through the treatment. The IPOP and 4-B Ward were getting pretty busy with us HiCy patients.

If you have had the HiCy treatment, post and let everybody know how you are doing.

After the growth factor was out of my system the only thing negative after the HiCy treatment is this afternoon weakness. It's not MS weakness or MS fatigue. May be due to my blood being wacky or the antibiotic. we will see after blood tests on August 20th.

Keri how are you doing?


Chris S.

Hi Chris,

I answered your post on the MSWorld board and I'll copy and paste that reply here. Sorry for being repetitious!


I was also there on 4-B and at IPOP. I loved the staff at each one. They were excellent. I had a pretty tough time with the Cytoxan but I'd done pulse doses and they said that people who've done Cytoxan before seem to have a tougher time the next go round.

I have a lot of spinal damage so I can't really say that I've had any recovery yet and I might not get any but if it'll keep me from getting worse, that's good too. But I spoke with Dr. Hammond last week and he said that a month out is still very early and not to give up hope.

The only trouble I had with the growth factor was that it caused me some serious bone pain in my back and in my right thigh a few hours after each infusion but that went away after it was stopped.

My blood counts are pretty much normal except for a red cell count that just getting into the low normal range.

Come to think of it, I think you were in the room next to me for a couple of days. I remember the week that I was getting Cytoxan, my mom met a woman who was there taking care of someone from Alabama. Didn't you get re-admitted for an infection? I was pretty out of it so I never met either of you but I remember my mom telling me about you. I eventually had to get re-admitted as well. My hickman line got a little infected and I had to be re-admitted for antibiotics but it really wasn't a big deal.

Have you had any hair grow back yet?

Well the hair has started to grow on my face but only around the lips and its like I have 12 year old peach fuzz again. Got the same on my head but its like baby hair. Really blonde 5 o'clock shadaw on my head.

Keri,
Val is doing good. She is one hell of a woman to go through that treatment with me. We bought her a diamond necklace to show her my appriciation. She flipped out.

I told her you were totaly bald. haha!


Chris S.

Hey Keri!

You know, as far as your numbers being low, I'd seriously chalk that up to each person being different. You didn't get sick at all from the Cytoxan where I spent four days sick, semi-sedated and even wearing a diaper the last three! Ugh. Not a pleasant memory there! But on the flip side, my numbers were approaching normal when I left Baltimore. We're all a little different. But if it was Joyce who emailed you, I'd take her word to the bank. I was sooooo impressed by her. She is one sharp lady.

It's funny, I too miss Baltimore in that I stayed with family and it was great seeing them. I actually found the whole process at Hopkins to be fascinating despite how hard it was on me. I'll actually always be a bit nostalgic for it.

Keri I can't really say that I've had any real improvement at this point. I have a lot of spinal issues and that might not reverse. Fingers crossed but we'll see.

My hair loss was kind of weird. The day that I got re-admitted, which was just short of two weeks after the first dose, I woke up with hair all over the pillow. I went to IPOP and was shedding like a cat and by the time I was re-admitted that evening, they put towels on my bed over the pillow I was losing so much hair. My move gave me a buzz cut in the room the next day but didn't have a razor to take it down to the skin level. I woke up the next day and most of it on the top had fallen out but most of it on the back and a good bit of it on the sides stayed in. We went ahead and shaved it down with a razor to keep it uniform though. I ended up keeping some stuble on the top and a lot on the sides and back but none of is growing. I also haven't had to shave since my hair fell out. Janice from IPOP told me about six weeks after it fell out is a good rule of thumb for when to expect it to grow up. I'm still not used to the bald thing to the point it's annoying me. It's not even a vanity thing. I'm used to having very thick hair and I'm just not used to have this bald head!

Kyle I had done pulse Cytoxan before and I knew it was going to be rough. But I was the exception, not the rule. I wouldn't let my experience scare you. I didn't have to be sedated but I actually requested it because I knew how sick I'd get.

Look at this way, four or five bad days to prevent a lifetime of worsening MS is worth it. If it stopped the autoimmune process, then so be it. I'd do it again.