cyclophosphamide for MS

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

cyclophosphamide for MS

Postby amielzbth » Tue Mar 30, 2010 12:51 pm

My fiance is probably going to end up doing this. Has anyone here done it? Or is this Hici the same thing? Please let me know the side effects as you experienced them. I just want him to be OK. He'll do it, but I need to be prepared for what's to come. He is getting sicker and I am so scared of losing him its been messing with me in horrible ways. Please let me know what happes when you're on this stuff...

Ami
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Postby Lyon » Tue Mar 30, 2010 1:19 pm

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Postby steven73 » Thu Apr 01, 2010 3:54 am

Dr. Kerr has left Hopkins but they have a Dr. Harrison who is devoting his time almost entirely to determining who has been helped by HiCy and who hasn't. I'm SPMS and was probably on the verge of it, if not right there when I was treated. I could walk short distances unaided at the time. But as much as I greatly appreciated the folks at Hopkins and their attempts to help me, I've continued to progress.

I still believe HiCy works but as with any treatment, the earlier the better. It really does sound as though if there's no MRI enhancement, it may not be worth the trouble and risk. I guess what I'm getting to is that they seem to be putting a lot of thought and analysis into who would benefit from this and who won't. I was just up there a couple of weeks ago. I like Dr. McArthur and Dr. Harrison a lot. Both very nice guys.

It is a difficult treatment to experience and I'd want to know that it would help. Sorry, I'm rambling but I'll be back later to better describe my experience with the treatment.
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Dr. Kerr has left Hopkins but they have a Dr. Harrison ...

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

Steven73:

Which John Hopkins are you taking about? Leon would be interested in knowing.

Thank You!
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Postby patientx » Thu Apr 01, 2010 7:10 am

Ami,

Where is your fiance planning to have the HiCy treatment done?
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Postby amielzbth » Thu Apr 01, 2010 7:13 am

Mostly likely in NYC.
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Postby patientx » Thu Apr 01, 2010 8:21 am

amielzbth wrote:Mostly likely in NYC.


I was under the impression that only 2 hospitals were doing the HiCy protocol/procedure - Johns Hopkins in Baltimore and Rush Hospital in Chicago. I think Stony Brook was one of the first to do it, but I don't think they still offer the treatment.

I could be wrong, and it's been a while since I have looked into this. I don't even know if Hopkins still offers HiCy.
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Postby amielzbth » Thu Apr 01, 2010 8:32 am

According to my fiance, there's a doc who does it at NY Presbytirian (can't spell). He works with his Neuro. His Neuro doesn't agree with it, but Leon is pushing for it.

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Postby amielzbth » Thu Apr 01, 2010 8:54 am

Actually, its Wiell Cornell....sorry! I'm about to find out the name of the guy as his neuro (Dr. Timothy Vartanian) just had the medical secretary send the referral for the chemo treatment.

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Postby amielzbth » Thu Apr 01, 2010 9:07 am

The other Doctor who performs the chemo is named Dr. Susan Gauthier.

Here is her info: http://www.weillcornell.org/sagauthier/index.html
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Postby patientx » Thu Apr 01, 2010 10:20 am

amielzbth wrote:The other Doctor who performs the chemo is named Dr. Susan Gauthier.

Here is her info: http://www.weillcornell.org/sagauthier/index.html


You might already be aware of this, but cyclophosphamide has been used two different ways to treat MS. One is to give it in periodic, relatively low doses to quell the immune system. The other method, HiCy (high-dose cyclophosphamide) or Revimmune, is based on a different concept. This uses a very high dose over a week's time to essentially wipe out all of the white blood cells. The idea is that the body will generate new immune cells (the bone marrow is left intact), that won't attack the brain and spinal cord. The patients who receive this usually spend an extra week near the hospital so they can be closely monitored. This sounds really scary, but if you read the past accounts here, no one had any complications, and some had very good results.

Sorry if you know all this already. The name Susan Gauthier sounds familiar to me, and I see from her bio that she worked at Brigham and Women's hospital. Howard Weiner is the main MS neuro there, and he was one of the first to use Cyclophosphamide (in low doses) to treat MS. So, it's probably not a coincidence that Dr. Gauthier uses chemo also.
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Postby amielzbth » Thu Apr 01, 2010 10:32 am

Patientx:

I've been reading the forums and some of them are uplifting while others are intimidating and scary. Leon is excited to do this, though, and since its "his disease", I can only support him and be there for him.

As for me, I'm looking into real group therapy with actual live people specifically for caregivers. I need to cry with people who are experiencing my side of it. Even on the caregiver sites I find I get criticized for worrying just because I am the one who DOESN'T have the disease and it angers me that I can't even express my worries and anger without being put down for it on some of these so called "caregiver support sites" that in the end are run by people who have the actual disease.

I am in no way putting anyone on here down, by the way. I totally digressed. I'm just going to support and be there for Leon and get myself taken care of so that I don't have a nervous break down.

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Postby patientx » Thu Apr 01, 2010 1:51 pm

Ami:

It doesn't sound like those caregiver sites are too helpful. I can't say that I have seen this perspective - I'm unattached and dealing with this on my own, so far (my family isn't too interested). But I can imagine it takes a toll emotionally, so you have to do what you can to help yourself. An actual real live support group sounds like a good idea. Or maybe talking with a counselor.

It sounds like you are big help to your fiance. And if he has his mind set on something, and is excited, probably the best thing you can do is support his decision. I will tell you, after reading the accounts here, I would not have been as scared to get the HiCy treatment. (I did look into it at one point, but didn't meet all of the treatment criteria).

Not to belabor this point, but is it in fact the high-dose cyclo treatment that your fiance is planning to get?
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Postby amielzbth » Thu Apr 01, 2010 2:01 pm

Patientx:

To be honest I don't know. I think he is going for the 14 day treatment and I think it might be the full dose as he keeps mentioning the immune system being taken away...

It scares me so much to think about it. I've seen my grandmother go through it before she died of cancer and I've seen what it looks like to have no immune syster as my dear uncle died of AIDS related illness. So, losing his hair is the least of my worries...as a matter of fact, it isn't a worry to me at all. I'm worried about him puking and getting sick and almost dying.

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Postby RedPenguins » Thu Apr 01, 2010 6:09 pm

Ami - I know from the outside it seems scary...but having gone thru it twice - it wasn't that bad at all. Not sure though what the heck the 14 day treatment is...

HiCy is 4 days if in-patient chemotherapy. Then they release you to your home (or in my case, I was renting an apt in Baltimore near Johns Hopkins). I then traveled to Hopkins daily for a few weeks - where they took blood every day...and for a few days gave me a growth hormone to boost my immune system to go back online and build up. Those who did HiCy in Chicago had to stay in the hospital the entire time...they weren't released until their white blood counts were back online at a decent number. I think I spent close to 3 weeks in Baltimore in total.

I know it sounds scary to be without an immune system....but they only keep you at zero for a day or so before giving you the growth stuff to get you back on track. Yes, for a long time (several months) after the treatment you need to be careful with what you do (like don't hang out with sick people and wash your hands an awful lot)...but it wasn't that bad.

My mother died of cancer and I watched her suffer thru chemotherapy for years....and this was NOTHING like that at all. First, because we aren't "sick" with cancer - the chemo hits us differently...yes, it kills our immune system....but we're not "sick" to begin with, so I think that makes a difference.

I don't know anyone that "almost died" from HiCy. If done right, if precautions are all taken....he should be totally safe.

I would look into exactly what protocol they are planning to do. As I said, I watched a sick mother go thru chemo for years...and when I first found out I had MS, and I saw that they used chemo to treat it - I said I would NEVER touch the stuff...but this isn't regular chemo - this is a 4 day big blast of it and then that's it. Yes, some people got really sick...and then some, like me, didn't even throw up once! I was totally fine....even in the 2 weeks after the treatment while still stuck in Baltimore, I went out to the movies (during non-crowded times and had to wear a mask, but still, I was feeling great).

I wouldn't do the lower dose or something that took longer to deplete the immune system. But that's just me.

Make sure he finds out everything he can before he does this!

Good luck,

~Keri
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