To feeling fine…
I am feeling fine…
I got to tell you, I’ve had a great run on my pink little pills - the BRAF Inhibitor I’ve been on. Nothing else. I saw no signs of progression from February 28th, 2010 to May 13, 2014.
Yes, my friends, a record of 4 years and three months.
Then…..they’ve found a little “something”….
I believe what they found was really nothing –
Probably just a hair I swallowed from clipping my horse the night before. I couldn’t sleep so I spent the night before my scans clipping my horse to keep my mind off things. My guy, Sergei, and my friend, Joanna, helped out. Nothing like hanging out at the barn covered in horsehair to keep your mind off things. That was Thursday, May 12th.
The next day was my CT Scan. A battery of tests starting at 8:30 am at Georgetown University Hospital. CT Scan at 1:00 pm.
Friday, May 13, 2014
Friday the 13th?
Then came the Results Show….
I’ve got to tell you, when Dr. Atkins, Dorothy and the social worker walked in without the usual entourage of student-doctor’s in-tow, I did pause and take notice.
I took a deep breath and relaxed my mind - my yoga instructor said this was what I should do if I thought I was going to be in a stressful situation.
I use this technique often. And I yell a lot.
That’s when I heard those fateful words - Dr. Atkins looked at me and said, “ummmmm….you’ve got new growth…”.
Anyway, the new growth is very small – just 5 millimeters (by the way, you know how small that is really is? Really small. I have no idea why his delivery was so somber). Dr. Atkins reassured me that it was probably nothing, but, “we’ve got to keep on eye on this”.
We’ll know more when I do my next CT Scan in August…..
I’ve been demoted back to CT Scans every three months.
More radiation for me!
Lucky me - I get to keep that glow!
My personnel opinion is they missed it previously, that its always been there.
Dr. Atkins just smiled and said that I was “a different kind of patient”.
I think that when your PET Scans start out looking like a Christmas tree, you can’t sweat the small stuff.
By the end of the appointment the social worker asked me if I would talk to some of the patients looking for support from follow survivors. That’s what I’m about – rah rah!
This was actually my lucky day. I got a chance to tell Dr. Atkins that I wanted to add a MEK inhibitor to my drug regimen a “combo treatment”. I know he isn’t a fan of my drug treatment strategy, but he expressed little or no reaction.
That was very cool.
You see, my two amazing doctors, Drs. Ribas and Atkins, have two very different views on treatment strategies. To Dr. Atkins credit, there was a recent report that adding the Mekinist to Dabrafenib changes the durability just marginally, by 10%, and that maybe the possible side effects aren’t worth adding the combo. But my main man, Dr. Ribas, feels a bit differently on the subject. And I’m going to ride the horse I rode in on – Dr. Ribas is a believer that the combo is better. I think a 10% improvement is worth the roll of the dice – remember, I started with a 14% probability of staying alive 12 months.
Every little bit helps!
Never fear, though, the MEK KILLER is here!
Anyway, I’ve started taking Mekinist in combination with my BRAF inhibitor.
I’ve added the MEK drug now for 34 days and have had no real new side effects.
But now I have to regularly monitor my heart and eyes. For the most part, though, they are reporting that adding the MEK actually reduces side effects.
I’m unfortunately back to a CT Scan every three months - that not only sucks from the time and additional radiation perspective, but I get they zap me but on the insurance side of things more regularly, too. Blue Cross / Blue Shield doesn’t like paying for those scans, and they cost $6,000 a shot.
Lucky for me its Mike who has to battle it out with the insurance company.
I got to tell you I had another one recently - they’re questioning my treatment because it has worked too long. BCBS doesn’t like to spend money. We have to fight to keep on the BRAF, and now we’re adding the double hitter of the MEK inhibitor and its costing another $20,000 a month.
This should make things a lot more interesting in the coming months.
And its frigg’in expensive!
On another note, on May 27th I went to San Francisco for the Melanoma Research Foundation to attend a Board meeting and a fundraiser. I met a mother and daughter diagnosed with stage IV melanoma a day apart, and neither were sun worshippers.
Goes back to the thought that not all melanoma is caused by the sun, but sometimes maybe its genetics or a weakness in the immune system. They have been on the Combo for 2 years and they’re both doing very well.
I also learned about a couple of new cutting edge treatments on the horizon that are proving to have great response rates in their initial trails – they’re combo treatments of the immunotherapy strategy of attacking the disease called ipilimumab and anti PD-1.
That’s what’s trending…..
I've been wondering if all the things I've seeing were ever real, were ever really happening…
Ok that song was ringing in my mind tonight for some reason.
It’s Summer, and all those Cheryl Crow songs are playing in my head from summers gone by. But there will be no more soaking up the sun for this beach lover!
Cheryl Every Day Is A Winding Road, I get a little bit closer…