There are a few reasons why the world famous blog would be back up and running.
- The Cubs won the World Series
- I won Top Chef
- I spun the Melanoma wheel of fun again
The top 2 haven't happened........YET. (shout out to Isbell and the "YET" theme!!!) So #3 is the big winner for now! Several weeks ago I called the great Nurse Terry at Dr. Beitsch's office, and told her I felt a couple of bumps in my neck. Her response was simple......"Do you want the 9:15 or 3:00 Wednesday". A sonogram and a needle biopsy confirmed that melanoma was back. This time we agreed to leave it, and head to MD Anderson to check options. If we cut it out, again, the options are very limited because MD Anderson doesn't have anything to measure, so I'm not eligible for clinical studies, ect... A quick email to Dr. Ross and Dr. Patel at MD and I had an appt a week later. A quick recap of last week........I drove down to MD early on Aug 29th, and had a PET scan at 1:00. Tuesday I had a neck CT scan with contrast at 6:20 am, then met with Dr. Ross and his team at 9:30. CT scan confirmed 4 tumors in my neck, Dr. Ross could feel all of them with my head contorted to angles I only thought a Muppet could achieve. Then I met with Dr. Patel and her team Wednesday and they did a biopsy on a tumor on my jaw line.
Dr. R has clinical studies that are available, with TVEC, chemo, TVEC + Ipi (Yervoy), and any combination and surgery all being options. Most of those are being ruled out, as there is a chance I could be randomized into the surgical side of the study, and we don't want that. (been there, done that, got the cool MD Anderson shirt)
Dr. P has studies and everything has a really cool name, like PDI, CTLA4, LEEO11, MEK162, ect... (feel free to make up your own, nobody will know) And she has some NRAS targeted therapies also available. Most people are BRAF positive or negative, I had to be "special" and am NRAS positive. NRAS+ offers up some trials that are new and hopefully have great success soon, if needed. Here is some light reading on the BRAF gene if you are bored: BRAF cool info Dr. P also had a biopsy done on Wednesday (I have a cool 3mm incision and 3 tiny stitches to prove it) and they will be testing to see if I'm PD-L1 positive or not. What you say, you want a link to read about PD-L1???? Boom.....
So.........what does all this mean and what is the plan????
Dr. R is presenting my "case" to the Tumor Board (this group would be a blast at a party) on Monday, Sept 12th. Dr. P is waiting for the PD-L1 results (you should be an expert after clicking on the above link). And I have another appt at MD Sept 14th. By then a plan should be set. I was hoping to hear back this week, but it's now going to be next Wednesday before all the results are in, and everyone has talked.
The Cubs Magic number is 10, Hook 'em Horns, where can I buy a life size cut out of Shane Buechelle, hashtags are so 2015, thanks for all your thoughts and prayers!!!!!!!!!
Mike
Oh my gosh--thank you for the good laugh, amidst very troubling content. Also, I sure wish you were around in my dreams in my childhood so you could have slain that terrifying alligator that used to chase me! He would have looked great as a trophy! Lots of stuff still brewing. I will pray for all of it. Praying for wisdom from above for the doctors, and peace, hope, and faith for you and your family. And of course healing. --Jodi
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ReplyDeleteI had no idea what you were facing when I saw you at the reunion. We are definitely praying for wisdom for the doctors, peace during the process, and healing. And P.S. --- I had no idea you had such a knack for writing! Had I known, I may have tapped into this resource for help in high school. :D Love your humor in the midst of this storm my friend. Hang in there! Becky (sorry about the technical difficulty!)
DeleteMike, I am so sorry to hear you are battling this again. If the answer is one that you don't want to hear, there is a Dr. Ray Hammon in Rowlet that is having remarkable results with natural IV infusions and nutrition that are not only reducing tumor growth, but building healthy tissue over destroying it as most cancer drugs do. I hate to think of you feeling sick and having good tissue killed off 5 hours away when you may be able to be treated in your own back yard in a way that could actually stave off the disease so that you have quality as well as quantity of life. I hope you can be open to researching the possibilities. Praying for you, Dasha and your family.
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