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Old 10-11-2017, 12:02 PM
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Quote:
Originally Posted by Natalie8 View Post
I haven't been checking in regularly - I can't believe I joined this forum 10 years ago! I wanted to update the forum in case people still visit. I always loved everyone in here.

I was at the nine year mark to the month for Tysabri when I was diagnosed with cancer. I had surgery and started chemotherapy. But my neurologist said that I needed to go off of the Tysabri. My sense is that I will not be able to go back on the drug because of all the chemotherapy medications which obviously suppress your immune system. I am still JC virus negative. I have no idea what I will go back on when the chemotherapy is over. It was emotionally crushing because Tysabri has been my lifeline for so long with zero relapses.

Anyhow I guess it's good news there are more new drugs out there these days. Anyhow it was a good 9 year run on Tysabri. I'm going to miss that drug.
Natalie, I had no idea this was happening to you and I pray that you stay symptom free during your treatment and are able to get back on Tysabri if you can. I know how well you have been while being treated with it.

I had a lumpectomy, fortunately it was just atypical cellular growth but it was suggested that I go on Tamoxifen, due to family medical history of BC. I had unbearable side effects from it so it was discontinued. I am just supposed to watch and test and mammo until the girls are flat or gone.

Sadly, I too have been taken off Tysabri for now. I tested positive for the first time in ten years for the JC virus antibodies. The doc thinks it is a false positive but due to circumstances beyond my control, I have no insurance at this point and cannot afford to retest.

My fiance took his own life while I was away visiting relatives in June and I am just now coming out of the fog of his loss. I found him when I came home, and believe he took his life less than 8 hours before I got back, after following the clues he left. We had a memorial service for him this past Sunday, and one in his hometown out of state in September. I am learning to live on my own again after almost twenty years with him by my side, and it's not going that well.

I had the blood test for JCV a week after his death, my insurance was done shortly afterwards and I just didn't care at that point. I canceled all my infusions (scheduled six months ahead) and other appointments, barely finished the college classes that I was in, withdrew from two, passed two and just gave up on one and took the F.

So here I am, not a very positive, upbeat report this time, eh? I have no job, no insurance and just don't care right now. I imagine I will wake up at some point and get myself together, but it's not going to be today.

Love to you, and filled with hope that you will get through your troubles,and come out clean and free of illness.
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


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I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
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Negative for JC virus antibodies!
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I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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"Thanks for this!" says:
Natalie8 (10-24-2017)