This Is MS Multiple Sclerosis Community: Knowledge & Support

I am so glad to find this forum! I received my final dose of high dose cytoxan on March 19th and have been home for two weeks. I am a 43 year old woman diagnosed with RRMS in '94. Progressed to SPMS in '00 and have experienced slow disability (especially gait) since then. Progression really picked up about three/four years ago and none of the conventional treatments helped.

My neurologist (Dr. Ugo Goetzl of Raleigh Neurology) suggested HiCy and after research and soul searching I did it. I have been following Chris (of ChrisHadMS), Kathy (of Rebooting Kathy), and others who have done the treatment at Johns Hopkins or in Chicago. I only know of one other person who has received the treatment where I live in NC. I'm grateful to find all of you.

I have had a very easy time since leaving the hospital - no fever or infections; no bladder issues. My blood cell counts bottomed out exactly a week after the final dose of cyclophosphamide and exactly a week after that, they were all back to normal. Of course the two shots to stimulate white and red blood cell growth helped.

I begin my PT program at the end of this month which I am so excited about; especially after reading about Chris's successes. Improvements experienced already include loss of nystagmus, improved leg strength, less fatigue, and improved congition (loss of "brain fog").

I have two questions for you veterans: 1. How long after treatment did you continue to experience nausea? 2. How many of you went on Copaxone after treatment and when did you start it? It's so encouraging to hear of your successes so far out of treatment.

_________________
Danielle

I was done with the nausea 2 days after the crud was outta my system. I started the Copaxone about 1 month after it.

Congrads on the early improvements. You will probably tighten back up like the rest of us but that will let up again at month 15ish. You will have good days and bad days but you will notice your worst days are never as bad as what your old good days used to be like.

I talked to the lady you speak of via email but she asked me not to say anything because she was worried about something going wrong lol! How is she doing now? Do you know?

Did I happen to mention just how happy I am some other doctors with a name are doing this now?? Man I am sooooooooooooooooooo happy more people can finally start to experience an improvement!!

Hi!

I'm also in NC and I did the HiCy treatment at JH. I used to see a different doctor at RNA but that relationship didn't end well so that's when I headed up to JH. I stayed sick for a solid weak after the chemo but would have the occasional wave of nausea for a while after. However, my wimpy stomach is very prone to nausea! I get sick just doing IVSM!

I hope you continue to feel better!
Steve

So how is it so far for you Steve? BTW you are not the Steve I met at JH in March of 08 are you?

Hey Chris. I like your web site by the way! I guess you could call me stable. I had a great three month appt. with improvements in all categories but didn't do as well on the walking at seven months (had to miss a month because of weather in B-more). That had to be a different Steve. I was there in July.

But Dr. Kerr mentioned that any remylenation could be at least year out. I also remember reading an article in the B-more Sun that mentioned the greatest success stories such as Richard Bauer and one guy who had to be hospitalized at 10 because he was doing to badly, but a couple of years later, he was traveling with his wife. So it sounds as though low spots might be the norm for the first year or so.

Additionally, I really believe that I was one of the most disabled people treated. I wear dual afos and have some issues with my arms as well. But a lot of that was relatively new so I think the guys at Hopkins were willing to take chance on me. My MS hit hard, and mostly in the spine, but for the first year after diagnosis, I was relatively stable, walking unaided, no braces and doing my own grocery shopping while doing Betasron. I switched doctors and to Tysabri and for eight months, I tried to set a progression world record. After I finally argued my way off of Tysabri, I switched to pulse Cytoxan and ended up at Hopkins in July of last year, a few months after my former doctor in Raleigh had someone tell me over the phone that "there are no other options."

Oh, DRStines727, you asked about Copaxone. I started it in August of last year, about a month after the treatment. Also, I'd love to know the specifics of where you were treated? Were you hospitalized at Wake Med or Duke? Did you go back everyday for follow up care?

.

Hi Chris and Steve,

I was at Durham Regional Hospital which is part of the Duke Health system. My oncologist is Dr. Hathorn with Regional Cancer Care. I was released from the hospital two days after my last infusion. I did all my follow up at Regional Cancer Care - two visits first week out and one a week later. Dr. Hathorn said he wants to see me in six weeks. Antoher difference from what you experienced at JH is that I had my infusions via IV. I did not have a port put in. They tried to run a pic line in my arm the first day and after three tries, I told the nurse to get lost.

I have my first follow up with the neurologist in a few weeks. Please share with me any questions I should ask him. I plan to discuss Copaxone, but I'm not sure what else I need to ask. I have a blog. If you'd like to read it, send me your email addresses. Thanks.

_________________
Danielle

Hi Danielle,

Glad to see that you were SPMS and still considered a good candiate. Did you have active lesions? We couldn't get it done at Hopkins unless we did. I was nauseas for about 2 months on and off We start copaxone at Hopkins 1 month after coming home. But the Rush protocol was different post-HiCy..

Sandy

Chris,

The other gal in NC who did the treatment is doing well. She's mostly using a walker instead of a wheelchair and has returned to the gym. Are you still able to walk without a cane?

_________________
Danielle

Hi Sandy,

I haven't had active lesions on MRIs for years. However, clinically I have continued to progress. What is the Rush protocol post HiCy?

_________________
Danielle

I still use a cane but it's my fault as Sandy will attest. I have now stopped using my cane in the house to try to get back to where I was in that video.

The biggest detriment I had was my PT ran out. I had to go 5 months with doing 0. I have Medicare so it covers unlimited PT as long as you have a doctors permission. I go 5 days a week now.

I was going to release a video of me on my Birthday( the day I had the MRI in 04, saw the white spots and new I had MS before the doctor saw the MRI-happy birthday!!) just because I thought it would be a fitting 5 year anniversary. The way the PT is sticking to me this time is making me so interested to see how I will be!!

I wonder when people will finally realize we are not stupid or taking our lives in our own hands and will finally start to push their doctors to do this for them as well?

Yeah, Chris- It's my fault, too. I'm trying to adjust to being stoned all the time from Lyrica right now. I can do a little more, even stoned because the pain is slightly less.
Sandy

I am happy to say I just did 1 hr of water PT. 15 of which was walking on the underwater treadmill at 1 mile per hour!!!

I also did 3 minutes of eyes closed balancing, w/o holding on to anything, with 2 enormous water jets blasting at me!!

Hi, Danielle

Don't quote me on this. I do recall someone saying they do 5000 i.u. of vitamin D daily instead of copaxone post-HiCy.

Sandy