Since I last updated, I have found a total of 8 nodules. Some have disappeared, but then another pops up. It's a never ending vicious cycle.
I seriously wish I had a dollar for every time I heard someone say "You can beat this." Because, honestly, I can't. Melanoma is not something you "beat". If you look at the statistics, only 10% survive past 5 years of diagnosis. Don't worry, I'm not giving up. Not by any means. I am just trying to make you all aware of how this awful disease works. Melanoma will come back. It will always come back. No matter what stage you catch it at, it will come back. It's just a matter of when. Mine was not caught early. Therefore, it had more time to spread to those lower layers of the skin and venture to the lymph nodes. It could have been prevented. If I had gone to the dermatolgoist earlier, all this could have been prevented. Now it may kill me. So, please, please get checked. Once a year go to your derm for a full skin check. It's worth it. Trust me! Melanoma takes around 10 years to surface. Which for me would have been in the high school years. I am paying for that beautiful tan I had each year before prom.
Ok, I am getting off my soapbox now. Point proven.
Anyway....I leave Sunday to head to Vanderbilt. They will biopsy at least one of the spots (I am hoping not all of them! Ouch!) If they come back as Melanoma I will discontinue the RO5. They would also like to do a CT scan to stage the progression, however, I am not so sure my insurance will cover that since I just had one a few weeks ago and I will have to have another before I start the next trial. So, Vandy is supposed to be checking with my insurance on that one.
I have already talked with my nurse at MD Anderson and there is currently a MEK trial that will be perfect for me. It is for patients that have already been on a Braf trial. What worries me is that it does not have as good a success rate as the RO5. And it only worked for a few months. But, what do I have to loose by trying a new drug? Nothing at this point.
If you have read, or watched the news, then you know about the "new" drug ipilimumab. It is actually an older trial, but they had to wait to publish the results in order to track survival ranges. Ipi only works on about 20% of the patients. However, it will probably be approved by the FDA by the end of the year.
So, at this time I am going to give the MEK trial a shot. MEK and BRAF trials only come along once in a while. If you can get in to them, then you go for it. My nurse at MDA did not think getting into the MEK trial down there would be a problem. I have to be off the RO5 for 10 days before I can start the MEK trial. That would make it July 9th. Since I will have to have a CT, MRI, labs, dr appt, blah, blah, blah, I will most likely wait until the following Monday to start anything. Or, since my Dr is there Thursdays, Fridays, and Mondays, they may bring me down on Th to get all that going, then see my Dr on Friday and start the trial then. Not sure at this point. We are waiting to schedule everything until we are certain that it is in fact Melanoma.
I know some of you are so sad by the news that the cancer is back. Please know, that the fight in me will never leave. Despite everything I have been through and continue to go through, I know that I am blessed. Cancer has taught me a lot. It has taught me a new appreciation for life, for my family, and for my friends. I take nothing for granted. But, boy does it piss me off when people do :)
Sjogren's and Bicycles
3 days ago