Joelle, your opinion is great appreciated and I certainly hope others do just that, give me their opinion and not argue about anyone else's opinion.

I know Tysabri is a touchy subject with some people, I happen to be one of those. LOL

I anxiously await some of these current trials to be finished and look forward to having more options. I have gone to the website for trials to see about being in a trial but because of my age, 58, I seem to be too old. Seems they haven't heard that 50s are the new 40s, or something like that.

Sassy, I agree with Joelle. It's your decision at the end of the day. You have a lot to consider and you have to sit down and seriously think about the pros and cons of what you want to do.

Have you thought about doing C every other day instead of every day?? That might be an option.

Yeah, I know what you mean about the age issue with these clinical trials...

Hi Sassy,

I'm so sorry you have this dilemma! But you asked my opinion and here it is. If I were you, I would not take the Tysabri.

Melanoma cells won't necessarily show up in the skin only. I'm not a cancer expert, but I know of someone who was a long time Tysabri user (started with the beginning trials) and a melanoma survivor from many years previous. That person developed a brain tumor that had mestastisized from melanoma cells. It was a very bad tumor and I don't even know if that person is still alive.

I don't like to bring up this example since there's no way of knowing if it's really a direct result of the Tysabri... but I would want to hear it if I were in your situation.

But as everyone else has said, it's your decision...

Hi Sassy!

I am also sorry that you facing this problem. As you may know I have been through betaseron, copaxone, and tysabri all in one year. The reactions that I was having to copaxone were also considered out of the norm -- whatever that means. I had lower back pain with a few of mine in addition to all of the other problems plus cold chills and shaking. If you can handle the copaxone and if you and your neuro think it is working, I would consider staying on it for now. Perhaps you could consider the every other day option that was suggested. I remember reading one study that suggested that it was just as effective.

There are alot of unknowns with tysabri, and you could always reconsider it in the future. I have made the decision to take nothing for now, but my next alternative will probably be either be imuran or cellcept. Perhaps you could discuss these with your neuro. The MS center that I went to in St. Louis said that these are alternatives being used for those that cannot tolerate the other treatments.

Brenda,

I would not use Tysabri as a melanoma survivor.

You quality of life is a balance between dealing with the existing bouts of pain versus the potential for melanoma.

I think that the worries you would experience relative to melanoma would impact the quality of your life more than dealing with the existing levels of pain.

If I was in the same position, I would avoid Tysabri and pursue pain medication along with a mild course of a tolerable MS medication.

I would not tke the risk...

-Vic

Sassy, you already know how I feel about Tysabri being right for ME.

I didn't have ANY previous problems before MS. If I had, I would have done everything I could to find out how Tysabri would affect whatever it was that I already had. If there wasn't enough information to satisfy me, I would have waited and looked at every other option.

I don't have anything else but hugs and support for you in whatever decision you make.

Sassy, a person I used to work with ( retired and 62) now has melanoma in three places and none of them are on the surface of the skin. I don't mean to scare you. I saw that you were 58 and I am in my 50s too.

I believe its in their neck, abdomen and liver. Treatment is at Sloan Kettering and the course of chemo is not working so now they are adding a clinical trial for something else to try to make the chemo more effective.

This person has had PET scans to monitor the melanoma over the years.

The intial melanoma was on the scalp. This person loved to sail. That first melanoma was probably more than 10 years ago.

So I agree, a dermatologist scanning your skin is not enough. I hope this helps you.

Sassy,

I agree with the previous comments and know you are in a tough place. I think you should do more research and keep weighing the pros and cons of your choices. Have you tried solu-medrol? My Neuro offered me steroid infusions while on Copaxone to help with flare ups.

Avonex had the same horrible effect on me, so all of the betaserons were ruled out.

You can always call Biogen Idec (tysabri.com) and Teva (copaxone.com) to speak to their nurses, even if you are not currently using Tysabri. They will be glad to answer any questions.

I also scan clinicaltrials.gov periodically to see what other medications are being evaluated.

Does anyone know when the next Tovaxin trial starts?

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I finally had my 3rd Ty infusion. The nurse got my vein on the first stick.

Joellelee, Cheryl, Wiz, Vic, Barb, RW, starfish and hotfoot,

Thank you all for your replies, opinions and well-wishes. I must say I am pleasantly surprised.

In my mind what I thought I would hear is all the great things about Tysabri and maybe sway me to that side.

I am so thrilled you were all so honest. I am going today for the full body check, OH JOY! But its probably due anyways and I have a few "spots" I want checked. They don't look like Melanoma but just want to know what they are.

When I had my second MRI they were actually "ruling out melananoma of the brain" and when I learned I had MS it was somewhat of a relief. The only two persons I ever knew with melanoma died from it traveling to the brain so MS seemed like a walk in the park back then, now I wish I could walk that park but oh well I'm alive to camp in the park and ride my scooter around it.

And the suggestions for the every other day Copaxone sound like winners. I had cut way back on the injections, probably about every third-fourth day but have been back on them daily for about a week now. If I start having the IPIRs again I think I will try the every other day routine.

I was telling my SHG friends last night that I am very thankful for them but I did tell them that the daily check in here has been my lifeline! And once again some great friends here threw out a lifesaver to me and I will be forever grateful.

And if anyone has the opposite opinion of these I'm very willing to listen.

I had infusion # 15 today.

Got home from work at 6:30 a.m, threw myself into bed and went right to sleep. Hated to get up to make my appointment, 5 hours of sleep doesn't work for me when I need to sleep!

Hit oncology right on time, the nurses were all prepped and waiting for me, everything went smoothly, infusion started at 1:30, much quicker than usual. The place was empty today, so I got to chat with the nurses.

There's two new Ty patients coming on board this month, so I won't be the only one again!!! Both are MS patients, they haven't had any Crohns patients yet.

Noted during a quiet moment that I was starting to itch in places that couldn't be scratched at that time...quietly got up and did a trip to the ladies room and ...I found a FLEA!!

I was getting all worried that I was having some sort of reaction
I was within a minute of calling the nurse back in and telling her to slow the drip and get the Benadryl ready!

The rest of the infusion went smoothly and when I got home I did the 1800petmeds order for Frontline.

I'm tired and ready for bed NOW, but I am forcing myself to stay up for a few hours so I can sleep all night...hopefully!

Onwards and Upwards!!