cyclophosphamide for MS

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

Postby amielzbth » Thu Apr 01, 2010 6:47 pm

RedPenguins:

Thanks so much for your input and info. It really made me feel more at ease. Leon has his consultation on Tuesday (April 6). I can't be there because its at 2:30 and I have work so I'm more nervous. But, I have to work and make money and hope that it can help a little when Leon is on leave from his job...

Ami
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Postby RedPenguins » Thu Apr 01, 2010 8:56 pm

Tell Leon to bring a mini-recorder and record the meeting. That is what I did when I met the docs at Hopkins.

Good luck to both of you.
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Postby mommasan » Fri Apr 02, 2010 9:08 am

I am in the same boat as you, Steven. I was considered "relapsing-progressive" when I had the HiCy. For the first 3-6 months after the treatment I got dramatically better. Then I just started to progress without relapses. For a while I could walk about 1/4 mile without assistance. Now, just getting down the driveway with my cane can be a challenge. Dr. Kerr said that he felt my nerves were getting used to the increased signaling. Unfortunately, this is not the case.

In some ways I am still better than before- no more tremors, much better balance, better bladder control, though some bladder spasticity. Much better sensory-wise. I am probably a bit stronger, too. However, spasticity is MUCH worse and getting worse as time progresses.

I no longer make the trek to Hopkins. My local Neuro. follows me. I still take Copaxone every other day, lots of supplements like NAC, resveratrol and 50,000 i.u. of D every week. I push myself to exercise as intensely as I can 5X per week, but progressive is progressive.

So, now I am on the long waiting list for Dr. Sclafani and I am going to start Ampyra as soon as my insurance company can get it together. If you are RR, this is definitely a more promising treatment, but I have had MS 24 years now, so I guess this is just the nature of the disease.

Sandy
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Postby steven73 » Fri Apr 02, 2010 9:54 am

Hey Sandy! I'm really sorry to read that you've had a similar outcome. I really am. But I am glad to read that you've had some improvements that lasted. How about Barb? She was also dealing with some progression when she was treated wasn't she? She is such a sweetheart. She loaned my sister in law her wheel chair to get me up to IPOP when I was pretty much obliterated from the combination of MS/HiCy and Johns Hopkins completely ran out of wheelchairs. Has anyone heard from her recently? That summer of 2008, there were a few of us who were a bit more disabled than the usual HiCy patients and I've wondered if they were curious how far into the disease process HiCy could help. I'll always appreciate them giving me the chance to try this.

I had a very similar outcome Sandy. I felt a little better at first and even tested better on my three month check up. By the five month mark though, I was starting to fall and then by the about seven months, it was crutches/wheelchairs from then on. Like you, spacticity has been a monster. There's days when I'm just lurching one leg in front of the other with crutches and any new medications seem to set if off even worse.

Dr. McArthur also recommended Ampyra for me and I'm really looking forward to trying it. Dr. Kerr put me back on Interferon back in October but I didn't tolerate well and last trip, Dr. McArthur and Dr. Harrison were adamant that at this stage of the disease, it would do no good. I asked about cellcept, IVIG and all the other usual suspects but they were certain that those wouldn't help. They are going to have another MRI done down here at home to make sure there isn't some activity and if there isn't, I'll never go through another MRI again. At the progressive stage, it's largely pointless anyhow.

I left Hopkins thinking it's pointless to go back but they are going to do a trial with the Functional Electrical Stimulation bike for SPMS and I've love to get in on that. Dr. Harrison said that in a few years, drugs may be available to restore mylenin but I don't know if I've got that kind of time. But that's another reason to stay established there at Hopkins I guess. Plus, it's always a blast to see Dr. Hammond. The world's nicest doctor. I've got to say, Dr. McArthur was a very nice man too. Dr. Kerr was so optimistic that conversations with him were addicting. Going back every three months was a pleasure because it was a pick me up.

I'd love to hear from other HiCy patients. This board really died for a while.
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Postby mommasan » Fri Apr 02, 2010 1:10 pm

Hi Steven

Yeah, this board has really died, especially with the promise of liberating stenosed veins. At first, it was almost hard to believe that I was going downhill despite HiCy, but given that lesion load appears to be inversely related to disability, I wonder what we've done to ourselves by stopping our immune systems from getting involved? Either way, I didn't really have a choice at the time.

I too wish there was more feedback from others who have gone thru this, especially those of us who were somewhat progressive when we got on board. I'm so sorry to hear that your situation has taken such a bad turn.

Sandy
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Postby chrishasms » Sat Apr 03, 2010 10:16 am

Same thing as you guys. I had a ton of improvements for 6-9 months but then the spasticity came back. I feel great otherwise though. In fact, some things still continue to get better. I can move my right foot again for instance.

Do it, I would do it again.
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It's AJ

Postby AJWANTSACURE » Sat Apr 03, 2010 6:04 pm

AMI,

Im going to Chicago for HiCy - as long as blood work comes back good. I wwish I knew of this 5 yrs ago
<strong>STAY IN THE FIGHT TO FIND A CURE FOR MS</strong>
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Hycy, high dose cytoxan, immune ablation

Postby tashenoir » Sat Apr 03, 2010 9:38 pm

I am glad Keri posted! she knows a lot. I am doing this at RUSH University Medical Center in Chicago. I will admitted for about 21 days. I liked this option, I don't have to depend on my husband to get me back and forth to IPOP and all meds are readily available.

I have started the protocol inclusion testing and should be getting it in May. I can give you the blog addresses of other Hicy patients and you can follow me on my blog. Http://rebootingsteph.blogspot.com

Keri is right, they really do have this down to a science, knowing how people react to chemotherapy, how to get it through the system quickly and get your system producing new white blood cells quickly.

It's so important to go in with a great attitude. We can all help keep each other motivated, because the healing after will take time.
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Postby AJWANTSACURE » Tue Apr 06, 2010 6:37 am

mommasan,

i also ssuffer from tremors, balance problems and poor coordinatin.. how long b4 u saw some relief.

AJ
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Postby mommasan » Tue Apr 06, 2010 6:56 am

Hi,

About 3 months. Immediately after it I was worse. It seemed like the HiCy actually gave me an attack before it wiped out my immune system, which the LNP said was possible.

Sandy
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Postby AJWANTSACURE » Tue Apr 06, 2010 7:34 am

mommasan,

how r u doing now? when did u get tthe HiCy?

AJ
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cyclophosphamide and ms

Postby belsadie » Thu Apr 08, 2010 10:53 am

Hi to all
I had hyc at Stony Brook back in 2006. I had tried EVERY DMD out there: copaxone, rebif, beta seron, avonex, IV steroids,LDN you name it, I tried it.
I was rediagnosed with SPMS, four years after initial diagnosis and was desperate for a treatment that made some kind of difference...so...I had seen a news clip about this treatment being offered at Stony Brook, L.I. by Dr. Gladstone( he went to Johns Hopkins, now}. I qualified and was admitted for the treatment. The staff at SB was incredibly professional and friendly and I can't say enough about the incredibly smart, wonderful nursing staff.
I had a subclavian line inserted for med infusion and blood drawing [every 4 hours, at times]. the infusions were given IV on consecutive days and then the side effects hit [like a ton of brick!]
My hair fell out, I was as weak as kitten[that's putting it nicely],no appetite, no mouth sores though,Thank goodness, incontinent of urine. diarrhea, sleeplessness, and so on and so on and so on.
The care I received was PHENOMENAL....THE RN's answered my questions more thoroughly than the MD's[ except for Gladstone who visited EVERY day;even on his day off] the ancillary staff knew their responsibilities and carried them out faithfully.
My stay was about 30 days.
Going home was scary!!!Weakness persisted for weeks,so much so that I needed assistance to walk to the bathroom and take a shower.Any odor made me actually vomit.UHG....I thought 'd never recover.... I did
The out come is difficult for me to asses. The incredible fatigue resolved so did that ever-present feeling of balance loss. However, the stiffness/spasticity in my legs has worsened as the years go by
BUT .....I am convinced that without this treatment, I'D BE IN WHEELCHAIR My prayer for the hyc was that progression slowed until "something better" comes along and now CCSVI !!!!!!! Hopefully this will afford more inclusive, longer lasting relief.
GOOD LUCK if you decide to go this route. Check into the CCSVI treatment, though. You may save yourself alot of grief.
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It takes time!!!!!!!

Postby shyguy » Fri Apr 09, 2010 10:23 am

I had the treatment in 11/08 at JH Baltimore. The treatment is not that bad, its like having the flu for a week. My 1 year MRI was clear, and I feel alot better thank God!!!!!!! The treatment stops the constant attack on the nervous system, but we still have damage that needs to heal.... It takes time and effort, but you'll never be worse than what you are or were. I know how hard and difficult it can be, but we have reached the bottom of the hole. Now all we have to do is climb out.....
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Postby belsadie » Sun Apr 11, 2010 5:58 am

Sorry if I sounded like a naysayer... You're absolutely right. My brain MRI's show no advancement and healing has to be encouraged [maybe the anti lingo trials by BIOGEN will prove to be the answer to that!] I do feel some improvement, other than the spasticity that has worsened. I can now bend over to pick up something without crashing head first onto the floor [which happened 6 times before this treatment] and I actually stay up past 5PM. I look at this treatment as a stopgap til the next level of treatment comes along ...CCSVI???????
Being an RN, myself I guess I scrutinized every aspect of my experience, knowing the real danger I had signed on for. There is really no denying the risk taken when you wipe out all our defenses and I think it is doing any
potential candidate a disservice not to present those dangers from a first hand point of view. Sign up? ABSOLUTELY, but know that this is no walk in the park. I know everyone is different, but thereIS the reality of risk here.
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