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Don't know percetage, would have liked the info!

Posted: Fri Sep 11, 2009 11:22 am
by Monarch07
I had my first infusion of Tysabri Feb. 2009. Noticed my simple atypical mole changing in March. Mentioned it to my PCP in April, was told, we will keep an eye on it.Request an appt. in May for a mole check, could not get in til August. In july I had my 6th infusion of Ty. The first week of August had an appointment with Neuro. mentioned to him that I expected to have a mole biopsied at the end of the month. He looked at it and got me into a specialist the next day. Guess what, I have Metastatic (sp) melenoma. I was never asked nor told of this risk. I do not have a family history. I have had this spot on my chest all my life. It only changed after my first infusion.

Prior to going on Tysabri I did research, read the clinical trials and thought I was making an educated decision. If I had the info, I still would have gone on the medicine. I would have stopped and had this removed prior to my second infusion. It may not have metasized, it may have.

I loved being on ty and the results were incredible. I will miss it and don't have alot of hope. My only choice at this point is Capaxpone. I've tried everything else. I am in a relapse, I am fading from normal quickly and I have surgery to try to remove the cancer later this month.

I understand all points of view, I am an advocate for Tysabri. Our Doctors need to take responsability for giving us the information so that we know when to put up a red flag.

Think about. No history, very conscious of sunscreen, never changed until this and it could have been caught.

Just saying!

Re: Don't know percetage, would have liked the info!

Posted: Fri Sep 11, 2009 12:03 pm
by HarryZ
Prior to going on Tysabri I did research, read the clinical trials and thought I was making an educated decision. If I had the info, I still would have gone on the medicine. I would have stopped and had this removed prior to my second infusion. It may not have metasized, it may have.
Patient levels for Tysabri are nowhere close to where Biogen had predicted they would be at this point in time.

Their other star drug, Avonex, is losing market share monthly.

There is no way on earth that Biogen is going to caution doctors about the possible risk of melanoma with Tysabri because of the possible impact on revenues. It is unfortunate but the reality when it comes to how big pharma operates. It is all about the revenue and share prices.

I hope your problem was caught in time and that you are OK. MS patients don't need other medical problems on top of what they have to go through on a daily basis.

Harry