HiCy in July 2008

A board to discuss Revimmune as a potential therapy for multiple sclerosis

HiCy in July 2008

Postby pvns2005 » Sun Aug 17, 2008 9:36 am

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.
pvns2005
Family Member
 
Posts: 85
Joined: Fri Nov 17, 2006 4:00 pm

Advertisement

Postby steven73 » Sun Aug 17, 2008 1:28 pm

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?
User avatar
steven73
Family Member
 
Posts: 33
Joined: Tue Aug 05, 2008 3:00 pm

Postby RedPenguins » Mon Aug 18, 2008 2:17 am

Hey there! I'm here, too! I know you boys had a harder time with the treatment - but me, I wish I was back in Balti - it was like a vacation....and now I'm back in reality. Sheesh. I guess that's what I wanted though, right? :)

My hair is starting to sprout a little :) - at least on my head. I haven't had to shave my legs in weeks! I'm sure that will start to grow soon, too.

I mostly wear funky looking hats that my friend crocheted/knitted for me. I have a lovely wig (blech) that I wear when I go see clients....which I started back at work two weeks ago - just for a few hours a week.

My last blood test (10 days ago?) shows that my numbers haven't changed since I got home - meaning, they're still not at "normal" - my white counts are around ~5000 and neutrophils around ~3900. My red count is also considered low.

When I emailed my nurse practitioner at IPOP, she told me this was okay, that it could take months for the numbers to pop back up - - but now you guys have told me that your numbers are much higher - and were higher when you left Balti. Hmm. Any thoughts on all of this?

Steve - how are you feeling? Any kind of relief for you?

How bout you Chris? Gaining back some strength?

Are you guys working or socializing at all? Is being bald a factor in how you are out right now? I still struggle with it a lot - tho I have been told by many that my head is perfectly lovely being bald. Gag!

I know you guys had a rough go of it all.... :( I had wished there was more that I could do to help.

Have you guys scheduled your 3month follow up? I think we should have a reunion of sorts...I'm thinking around Halloween time - so I can visit my friend's daughter at college family days up in Syracuse NY. So, trying to see if I can coordinate the dates. What are your plans?

Have you all started copaxone? Yucko. I'm doing it....shooting up every day....and have the bruises to prove it!@

So....to reach me - email me:

keriz@socal.rr.com OR keri@lifehealingheart.com.

My blog of the experience will be coming soon.....

OKAY - LETS KEEP IN CONTACT!!

~Keri


Oh, Chris - how is Ms. Valerie???
User avatar
RedPenguins
Family Elder
 
Posts: 153
Joined: Sat Apr 26, 2008 3:00 pm
Location: Los Angeles, CA

Postby pvns2005 » Mon Aug 18, 2008 6:58 am

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.
pvns2005
Family Member
 
Posts: 85
Joined: Fri Nov 17, 2006 4:00 pm

Postby steven73 » Mon Aug 18, 2008 8:14 am

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!
User avatar
steven73
Family Member
 
Posts: 33
Joined: Tue Aug 05, 2008 3:00 pm

Postby steven73 » Mon Aug 18, 2008 10:22 am

Kyle wrote:After reading stevens story, I dont think I am that anxious to have this done. I think the diapers and heavy sedation did it :?


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.
User avatar
steven73
Family Member
 
Posts: 33
Joined: Tue Aug 05, 2008 3:00 pm


Return to Revimmune (cyclophosphamide or cytoxan)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service