Wow - this board has been very quiet lately!
Anyhow, just updating:
I continue to see improvements daily! Yay.
Today I started on Copaxone. Boo. Big owwie. More owwie than the HiCy itself! Go figure!
Hope everyone is well....
~Keri
First copaxone injection - post HiCy
-
RedPenguins
- Family Elder
- Posts: 153
- Joined: Sat Apr 26, 2008 2:00 pm
- Location: Los Angeles, CA
- Contact:
-
RedPenguins
- Family Elder
- Posts: 153
- Joined: Sat Apr 26, 2008 2:00 pm
- Location: Los Angeles, CA
- Contact:
Hey Steve and Chris! How are you guys?
Chris - I'm way too pudgy to have it set at 4! LOL
I just sent updates to the docs at Hopkins. I've been doing pretty well! Returning to work today - just to see 2 clients. (no more this week, then next week, 6 I think.)
My blood counts are still low (in my opinion) - my white was ~5000 and neuts were ~3900. I was reading on Mel's blog that she was up to 10k by the time she left Baltimore! Do you know where you guys are at?
Bob - I think the estimated length of time is one year on the copaxone, but I could be wrong.
~Keri
Chris - I'm way too pudgy to have it set at 4! LOL
I just sent updates to the docs at Hopkins. I've been doing pretty well! Returning to work today - just to see 2 clients. (no more this week, then next week, 6 I think.)
My blood counts are still low (in my opinion) - my white was ~5000 and neuts were ~3900. I was reading on Mel's blog that she was up to 10k by the time she left Baltimore! Do you know where you guys are at?
Bob - I think the estimated length of time is one year on the copaxone, but I could be wrong.
~Keri
Hi Keri,
I was a quick responder to the human growth hormone. My white cell count actually shot up to 19,000 briefly!
But by the time of my last IPOP appt last Thursday they were back down to 13,000. They told me that wasn't unusual though. I just had blood drawn at my family doc yesterday morning and I'll find out tomorrow what the verdict is on that. I will say that my red cells are slow to come back. They should be at least 41 and on Thursday they were at 32.
I actually ended up spending another week in the hospital due to a fever that was related to the hickman line. But to be honest, it was easier on me to do the usual IPOP stuff from the hospital room than to go back into Baltimore each day.
In terms of MS, I can't say that I feel any difference yet but I was one of the more disabled people who were there that week in terms of mobility so my gains might be limited or at best, stability. I was relieved when I spoke to Dr. Hammond yesterday though when he told me that a month out was still very early anything at this point would be a bonus.
Keri I think you're right about the year on Copaxone. That was the number of refills that was listed on the Copaxone form that we sent back over the weekend and I remember Dr. Kerr saying one year.
Keri, I also wanted to add that I'm sorry I wasn't very conversational the two times we met but I ended up getting really pounded by the Cytoxan. When you came to my room that one time, I was pretty drugged up but still very sick. When we met in the IPOP that one day, that was the first day out of the hospital for me and I was still nauseated! I ended up using the little yellow bed pan in the IPOP that day. Don't get me wrong, I'd do it all again though. I still feel very privileged to have been able to do the HiCy even though it was the toughest thing I've ever done. It was all I had left.
Oh, are you totally bald yet? I went bald the day I went back in the Hospital. I was losing hair so quickly that my mom brought a razor and shaved it. I hate it but they told me that maybe a month after it fell out that it might start growing back.
I was a quick responder to the human growth hormone. My white cell count actually shot up to 19,000 briefly!
But by the time of my last IPOP appt last Thursday they were back down to 13,000. They told me that wasn't unusual though. I just had blood drawn at my family doc yesterday morning and I'll find out tomorrow what the verdict is on that. I will say that my red cells are slow to come back. They should be at least 41 and on Thursday they were at 32.I actually ended up spending another week in the hospital due to a fever that was related to the hickman line. But to be honest, it was easier on me to do the usual IPOP stuff from the hospital room than to go back into Baltimore each day.
In terms of MS, I can't say that I feel any difference yet but I was one of the more disabled people who were there that week in terms of mobility so my gains might be limited or at best, stability. I was relieved when I spoke to Dr. Hammond yesterday though when he told me that a month out was still very early anything at this point would be a bonus.
Keri I think you're right about the year on Copaxone. That was the number of refills that was listed on the Copaxone form that we sent back over the weekend and I remember Dr. Kerr saying one year.
Keri, I also wanted to add that I'm sorry I wasn't very conversational the two times we met but I ended up getting really pounded by the Cytoxan. When you came to my room that one time, I was pretty drugged up but still very sick. When we met in the IPOP that one day, that was the first day out of the hospital for me and I was still nauseated! I ended up using the little yellow bed pan in the IPOP that day. Don't get me wrong, I'd do it all again though. I still feel very privileged to have been able to do the HiCy even though it was the toughest thing I've ever done. It was all I had left.
Oh, are you totally bald yet? I went bald the day I went back in the Hospital. I was losing hair so quickly that my mom brought a razor and shaved it. I hate it but they told me that maybe a month after it fell out that it might start growing back.
Hey guys, Mel was the same shot up to 23,000 I think then back down, eventually she stabilised around 10k.
Her red cells took the longest to come back into (low) normal range, only just got there now.
Her hair took about 6 weeks then it started growing quickly, baby hair though.
Reading the campath guys you can see improvements even 2-3 years later.
HiCy seems to be rapid improvement then slow, slow gains.
It took years to accrue, stands to reason it can take years to repair.
Just a chance at halting this though is all we were ever promised, anything else is bonus time.
Her red cells took the longest to come back into (low) normal range, only just got there now.
Her hair took about 6 weeks then it started growing quickly, baby hair though.
Reading the campath guys you can see improvements even 2-3 years later.
HiCy seems to be rapid improvement then slow, slow gains.
It took years to accrue, stands to reason it can take years to repair.
Just a chance at halting this though is all we were ever promised, anything else is bonus time.