Newbie Question

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

Newbie Question

Postby TaraStarks » Wed Mar 18, 2009 7:54 pm

Hi,
I just discovered this site today!! I was dx with RRMS 7/05, based on my workup we believe I had symptoms as early as 1996. I started Rebif 44mcg 3xs/wk and stayed on that therapy until I was diagnosed with Ewing's Sarcoma (bone cancer) 11/20/06. I had 1 exacerbation (4/06) between my MS dx and my cancer dx. Nystagmus - solumedrol resolved it.

I took a TON of chemo from 12/06 - 9/14/07. Adriamycin, Vincristine, Ifosfomide, Etoposide and Cytoxan.

Since chemo, I have been exacerbation free and my MRI's do not show any contrast uptake. There are only a few old plaques that are left. I've taken Rebif since 10/07 until January of this year. My co-pays skyrocketed to approx $425/month. I decided to try out my oncologists theory that they had thoroughly and effectively killed my immune system.

For those of you who have had a HiCy regimen, do you know what the dosage is that you received? I have my oncology records and I would like to compare the dosage of cytoxan that I received with someone who has taken the HiCy route. Mine was 1200mglm2 (1956mg) in 100 CCNS IV over 2 hours. I took that 6 times in addition to all of the other chemo as well.

Thanks for any info you can give!!
Tara
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Postby chrishasms » Wed Mar 18, 2009 8:11 pm

http://www.chrishasms.com/gallery/v/hic ... 0.JPG.html

Its a picture of the actual chemo bag. I had four of those, over four days, for one hour per dose.
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Postby Axiom » Wed Mar 18, 2009 11:52 pm

Tara,

The following abstract lists dosing information, although I'm not sure if the current protocol is exactly the same:

http://www.pubmedcentral.nih.gov/articl ... id=2574697

From abstract:

"Patients received 50 mg/kg/d of cyclophosphamide intravenously for 4 consecutive days, followed by 5 μg/kg/d of granulocyte colony-stimulating factor 6 days after completion of HiCy treatment, until the absolute neutrophil count exceeded 1.0×109 cells/L for 2 consecutive days."


Chris,
Not sure if it's on my end or yours, but I can't get your site to come up tonight.
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Thanks!

Postby TaraStarks » Thu Mar 19, 2009 6:49 am

Based on the info you guys gave it seems as if it is 50 mg for each kg of your ideal body weight? That is what I read. I think.... and if that is the case that is approx dosage I received (mine calculated out to 48 mg). I read that everyone had to take Mesna and Neulasta (I'm assuming that was the WBC growth factor). I had to take all of that as well with every chemo treatment. It took months for my counts to rebound to a normal level after chemo. My thyroid never bounced back - they are chalking that one up to chemo and the interferon therapy. I maxed out on Adriamycin, can't ever take that in my life time again. Cytoxan and Ifos levels were both reaching the borderline of taking too much and putting myself at higher risk for developing a blood cancer later in life.

I have had a quiet course of MS thus far. Only 1 bad exacerbation - numbness in my R arm, hand, fingers, leg, foot and toes. I regained everything from that loss except for my last 3 digits of my fingers. During my chemo treatments I regained the sensation except for the tips of those 3 fingers and now that is the only symptom from that attack left. I apparently have nerve damage and my back and my legs will burn/itch from nerve pain when I get really hot. It always goes away when I cool off.

My insurance company called yesterday to let me know that our co-pays had gone back to what they were last year, since that is the case, I am thinking about starting therapy again. I dread getting back on Rebif and am considering taking copaxone instead to see if the side effects are better for me. Then again, maybe Avonex b/c I would only have side effects once a week. I know the interferon is still maintaining therapeutic levels in my bloodstream b/c I have been off of it since I ran out of my last rx and that was only 2 months ago, so I still have a month of relative safety. I'm going to have to talk to my neuro regarding the chemo I have had and the risks of taking no immunomodulatory meds unless I have an exacerbation somewhere down the road. The unknown is so scary! I would hate to have disease progression b/c I didn't take the meds, but then again, I don't want the potential side effects and long term effects of the treatment if I don't have to.

I just don't know what to do!! Just wait until I know the net is there or jump and just expect it to be there............
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Postby chrishasms » Thu Mar 19, 2009 7:43 am

I would suggest you use Copaxone because all of us who had HiCy are on it now as a vaccine against reactivation.

In animal models of MS, they can't get the disease if they have been given Copaxone first.

Now in all of us 29, except one of us who will be retreated soon, have responded as such. In fact, I actually popped off a lesion and it healed along with a slough of other lesions as well. So I showed the Copaxone seems to have taught the body how to react to MS, and forget the auto immunity.

So if you still have an immune system that is naive to MS, use the Copaxone.
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Postby TaraStarks » Thu Mar 19, 2009 7:53 am

Thanks for the advice. I'm going to talk to my neuro today and see if I can get that started. Here's to hoping it will work!!!
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Postby robbie » Thu Mar 19, 2009 8:43 am

tara let us know what your neuro says it is interesting to all of us, thanks
Had ms for over 19 years now.
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Postby TaraStarks » Fri Mar 20, 2009 12:18 pm

Talked to his nurse yesterday to let her know my newest plan... Called my mail order pharmacy, they are doing their bit to go ahead and change and are set to call him on Monday to get an rx, and I called shared solutions to find out if they have any rx assistance available. $50 from them if I don't qualify for anything else - will know for sure after the Chronic Disease Fund runs their claim.

Does anyone out there receive assistance for their MS meds? If so, what organization do you go through?
Last edited by TaraStarks on Mon Apr 13, 2009 7:48 pm, edited 1 time in total.
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Postby chrishasms » Fri Mar 20, 2009 1:28 pm

I do through Shared Solutions / Teva where I get me Copaxone for free. Ask them about it.
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Postby TaraStarks » Mon Mar 23, 2009 12:22 pm

I should have known.... My doc won't switch my meds without an appointment first. So, I should know something 4/1. I don't foresee him giving me any problems with changing, copaxone was one of the original drugs he offered up to me when I was first dx. Since I haven't taken anything in a couple of months, they will not prescribe anything until they see me. If I've waited this long, I can wait for another week and half I suppose
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