Just FedExed My Records to JH.

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

Postby Xenu » Sun Apr 20, 2008 9:54 am

Thanks, Chris. That's what I thought. If they want a more recent MRI, I would assume that they would at least authorize one / help me obtain it.
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Postby 777 » Sun Apr 20, 2008 9:57 am

this is where I am lucky, I see Dr. Frohman at UT Southwestern. He was doing a speech at JH the day my medical records arrived. I was talking to Carrie at the time and she said he was there, so hopefully they they talked to my neuro in person.

But I too was told by him this is not for everyone and told me there are meds in the horizon that might be a better option for me.
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Postby Xenu » Sun Apr 20, 2008 10:05 am

To be honest, 777, I was really quite stunned by my neuro's reaction. Aside from this incident, I'm really very pleased with the care I've received here in Boston---particularly at my hospital / clinic. I guess I was just expecting that she would at least a.) read the information I sent her and b.) have informed, logical (rather than knee-jerk, uninformed, fear-based) responses to the prospect of HiCy. The fact that she didn't know about it didn't bother me; rather, it was her complete and utter unwillingness to even read the article that was such a disappointment.
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Postby 777 » Tue Apr 22, 2008 3:51 am

You are aware of some of the long term side effects from this treatment. One being early menopause. I already had 2 kids. I don't know if you have any children yet or not and plan to. but that is something to keep in mind. The idea of early menopause doesnt thrill me. also you could lose your thyroid. There are other long term side effects from chemo that arent so pleasant.
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Postby chrishasms » Tue Apr 22, 2008 5:49 am

See, I just had this treatment and all this stuff about higher cancer rates, causing a bad heart, loss of thyroid is not I repeat not a valid worry. It's the same issue as the Avonex death rate. No real issue.

Folks, in MS patients there are people over 10 years out from treatment who are healthy as horses.

The one person who has died from HiCy died from Aplastic Anemia (not even close to MS)and they did a bronchioscope to them while the immune system was down. They died from a resulting complication. While under JH care, for 21 days post treatmet I was allowed to do nothing but take my drugs and relax. The death was years and years ago. Lessonsn have been learned. I couldn't pee without it being measured or checked. I was thoroughly watched and cared for.

There are people who have had Cytoxin 40 years ago. HiCY is now becoming a norm over bone marrow transplant if at all possible because it protects the marrow. They can perform HiCy if needed up to 5 or more times over someones lifetime if needed. It's old age issue's that limit when it can be done. Low bone density is a no no.

It can throw a female into early menopause no doubt. From what I understand, overtime, this to will rectify itself. They also have it out there men become sterile which is a huge huge huge myth to my wifes dismay lol.

If you were told you had Lymphoma you would have no reserves about Cytoxin so why the reservation if you have MS?
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Postby 777 » Tue Apr 22, 2008 5:58 am

going into menopause in our 20's for a female is horrifying. Turning into a 50 year old woman with hot flashes and gaining weight in all the wrong places and not to mention bone loss and skin thinning is kind of scary. Yes MS is scary, but if it can be controlled why risk it? I already had 2 kids so I dont care if it makes me sterile, I already had my tubes tied, but the menopause part I am not thrilled about.
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Postby chrishasms » Tue Apr 22, 2008 6:10 am

I'm saying that does suck, but, you come out of it from what I understand from the docs. It may be 6mo-2 years but you go back to normal.

I am 32 with no kids and I totally thought I would be sterile from this but to me it seemed totally worth it. At least I could adopt and be a father rather than never have a kid because I was a crippled veggie that couldn't handle one because it was waaaaaay to hard. Best thing is now I still can have kids!

You may want to call the folk at JH because most of the side effects can be controlled through drugs as well. JH is getting pretty good at this. They are opening more beds up for this even.

Just remember that over 100 treated and all of them are showing improvement. If it was that bad there is no way in hell they would keep firing through the patients like that.

By the way...I took my first shot of Copaxone this morning.....whooo hooo!
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Postby 777 » Tue Apr 22, 2008 6:15 am

I been on copaxone for over 10 years, I think thats what kept me stable all this time. What surprised me was Dr. hammond said I would continue with Copaxone after this treatment. I thought this procedure would make us med free... heck I been on copaxone forever!! But he feels this is a way to help retrian the immune system. After I had my baby, he wanted me back on it asap.
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Postby chrishasms » Tue Apr 22, 2008 6:24 am

There are a couple of reasons actually and I just talked to him yesterday so this is fresh of the press.....

1. Retraining the immune system.

2. In people using Copaxone the body was actually able to remylinate damaged area's better than without it. (Go figure)

3. In mice if they have used Copaxone, they can't give them MS. So it seems to act almost as a vaccine. It's why they think Copaxone works in less active forms of MS aka very early on in the disease better and more effectively.

I will either be on it for 6 months or 1 year depending on what group they put me in for the study. They gave me the option to use my data in the study so I said OK. It involves nothing from me.
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Postby 777 » Tue Apr 22, 2008 6:30 am

I was on copaxone early on with my disease and still after all these years might explian why I am doing so well with my MS. but I read in so manyother forums from people who hate taking this med because it's an injection everyday so they stop taking it.

Most want to take tysabri because the numbers are better. maybe I am living proof that copaxone does in fact work over time if people give it a chance. the injections everyday mean nothing to me compared to what MS can do to us. I think some people who are newly dx just dont get it.
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Postby Xenu » Tue Apr 22, 2008 6:59 am

777 -

I'm gay and have no interest in being heterosexual, getting married, or having any children of my own. (I'm also probably going into academia, which doesn't allow time for women to have children. If I did ever want to be a mother, I would probably adopt. The prospect of early menopause doesn't bother me at all.)

As for potential thyroid issues: the medication I am currently on (Rebif) can also royally fuck the thyroid. So either way....?

And as for the higher rate of cancer in the future, from what I understand the risk is really quite minimal. I mean, if I refused to take Rebif because of the (minimal) potential for liver damage, I think that would be equally as absurd.

Every medical procedure carries some risk. You have to weigh risks against benefits.

Your decision may be different than my own and/or Chris'.

The bottom line is that we all have to go through the process and decide what is best for us as individual human beings.
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Postby Xenu » Tue Apr 22, 2008 7:01 am

Also, Chris, Dr. Hammond also spoke with me regarding using Copaxone to "retrain" or "reformat" the immune system after wiping it out and repopulating it. If I get approved, I will most definitely opt in for the "reformatting" as well. :D
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Postby Lyon » Tue Apr 22, 2008 12:56 pm

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Last edited by Lyon on Mon Nov 28, 2011 4:18 pm, edited 1 time in total.
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Postby 777 » Tue Apr 22, 2008 1:21 pm

Chris how soon did you hear back from them after they received your MRI's and records? I know they got mine last monday. I have been glued to the phone all week. :?
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Postby chrishasms » Tue Apr 22, 2008 1:31 pm

Relax it took me easily 2 weeks of waiting and now they have more folk. They will leave a message!
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