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Tysabri Check In, Support and Information Part Three

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Old 10-11-2017, 01:02 PM   #541
Riverwild
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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?


.
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
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
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Natalie8 (10-24-2017)
Old 10-11-2017, 02:44 PM   #542
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River I am so very sorry to hear about your fiance. I am so sorry you had to go through all that you did. I can relate to it in a way. Having the rug ripped out from underneath you like that makes recovery slow and hard. Wish I could give you the fast forward version of getting through it all but there's not one. I hope you are doing well and have someone there to talk to. If not just come on the forums here and you'll always find someone. Please take care of yourself.

Love,

Kitty

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Old 10-11-2017, 02:47 PM   #543
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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 am so very sorry to hear of your cancer dx. I hope the chemo does it's job and you can find something for MS that's as good as the Ty was for you.

Please take care of yourself.

Love,

Kitty
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Natalie8 (10-24-2017)
Old 10-13-2017, 08:02 PM   #544
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Riverwild,
I am so sorry
I wish you my very best!
Linda
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Natalie8 (10-24-2017)
Old 10-24-2017, 01:36 AM   #545
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Quote:
Originally Posted by Riverwild View Post
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.
When it rains it storms doesn't it? I'm so sorry to hear about this awful news. No wonder you barely made it out of classes. The positive JC virus must have been a shock, followed by another shock of tragic proportion. I had a parent commit suicide. All I can say is you will get through this eventually and come out on the other side. I'm not saying it's easy or quick but you will make it. In the meantime it hurts so much and you are left numb to the world. I'm sending you all the positive energy and thoughts in the world.

Tamoxifen can be awful I've heard. No boob cancer for me but it did involve surgery that was highly intense. And I think to myself, really universe? You had to give me MS and then exactly 10 years later give me freakin' cancer??

I worry about your MS. Is there nothing you can take with help from the drug companies with free meds? My doc thinks the chemotherapy will keep the MS quiet because it suppresses your immune system. The question is what to do next? Sigh.

Anyhow all I can say is We will get through this.
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Old 10-27-2017, 10:59 PM   #546
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Natalie and RW,

I just keep thinking about you I wanted you to know you are in my thoughts and prayers..

Linda
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Old 11-28-2017, 11:41 PM   #547
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Natalie and RW,

I just keep thinking about you I wanted you to know you are in my thoughts and prayers..

Linda
Thanks Linda. My last chemo is coming up soon. I survived it! But the oncologist is insistent that I don't go on any immunosuppressant drugs because she fears the cancer will come back. The only ones that don't fall into that category are interferons and copaxone. And I can't tolerate either. I don't know what to do. It appears the choice is cancer or MS. Quality of life v. Quantity of life (yes I had a bad cancer that often comes back). Anyhow, just have to keep plugging on.
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Old 01-04-2018, 06:46 AM   #548
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Default Tysabri side affects

I go for my third infusion on Monday but Iím kinda nervous about how agitated the infusions make me. It is so bad that I canít even stand myself. Everything bothers me. My husband who is wonderful and so supportive of me puts up with me even though Iím mean to him for about 10 to 14 days after my infusion. After my first infusion I had a horrible headache that lasted about one week, so on my second one they Gabe me an injection of Toradol (think thatís what it was). It helped with the headache but I still had the strange feeling of pressure in my head as I did after first infusion. The pressure is not painful, itís like my head is stuffed down to my neck. Sounds weird I know but itís the best explanation I can give. Another thing I noticed is that my teeth kind of bother me too. They seem to be more sensitive to chewing and coldness. Smells bother me more as well.
So Iím wondering if anyone has experienced any of these symptoms after starting Tysabri?
I was dx nine years ago. Have been on Copaxone, Aubagio and Gilenya.
Like all of you I have day to day symptoms. I am mobile. MS has affected my cognition horribly. Have had all the neuro psych battery of tests which proved to SS that I wasnít able to work.
Anyway, thatís me in a nutshell. 🙏🏻
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