The past few weeks have been a blur. I feel like I’m constantly running from one obligation to the next. At this point I just want to lie down in my bed and sleep and read in silence. I’m becoming a bucket of fun at the ripe age of 26 eh?
The last time I updated my blog I had written about the recent news from my doctor. My last CT scan found evidence of disease on my liver (again), the lining of the left lung, and part of the abdominal cavity on or near my diaphragm. These areas for the most part are inoperable. I mean, you can’t really resect a lung. Although hearing the word “inoperable” is initially jarring, I’m okay with it. My body is tired and run down. It still hasn’t bounced back from the last operation. Though previously reluctant to do so, I’m ready to seek out alternative treatments.
So what am I going to do now? Drum roll please…
I’m signing a consent with Mass General Hospital in Boston for a chemotherapy trial. It is an MEK inhibitor trial which is on the newer side but shows promise in low- grade cancers. Remember, low grades are slow growing, which is good but generally unresponsive to traditional chemotherapies.
I am going to be in a randomized double blind placebo controlled trial. This means that I don’t know what I’m taking and neither do my doctors. It’s like chemo roulette. I could be in group A that receives a drug called Pimasertib and SAR245409 or group B that receives Pimasertib and a placebo. No matter what I will be receiving treatment. This drug is administered orally which is nice for convenience BUT I will be required to go to Boston for check ins.
Stop using medical jargon. What the hell are these drugs?:
MEK = A molecule involved in the growth of human cells including cancer cells
MEK Inbitor (Pimasertib) = Interferes with MEK activity thus potentially crushing some cancer by blocking these cells from rapidly growing.
SAR245409= Drug that targets different proteins that area also involved in the abnormal growth of cancer cells.
Each drug has a different target and they are testing to see if these two drugs in combination are more effective than the MEK alone.
It was not easy for me to make the decision to do this. I mean, you have to really trust the universe and let the chips fall where they may. With any drug FDA approved or not (in my case), there are risks involved.
Side effects in phase I have previously included: gastrointestinal issues, swelling of arms/legs, fatigue, nausea/vomiting, skin rash, decreased appetite, fever, inflammation of mouth, stomach pain, edema, visual impairment/in extreme cases blindness.
A direct quote from my consent form is “blurred vision may occur if the part at the back of the eye which transmits visual signals to your brain separates from the eye ball. Decrease in vision may occur if there is a blood clot in one of the main blood vessels at the back of the eye). I know that they HAVE to tell you the possible risks and every drug carries serious risks but WHAT THE EFF. I did not feel good leaving my appointment having discussed the potential risks. I’m just picturing myself stumbling around my apartment with my seeing eye dog and vomiting all over him as I feel my way around the bathroom for my skin rash cream…
Okay that is really dramatic but that’s where my mind goes. I spent a few days before committing to anything and really gave it some thought. The more I considered this trial and my alternatives, the more I realized that if I did anything else at this point I would be backpedaling. The benefits must outweigh the risks if this trial has made it to phase II.
I was almost at 98% sure I was going to do this trial prior to leaving for Vegas. After attending Stupid Cancer I am at 100%. I was in a session called Cancer as Chronic run by an ovarian cancer survivor. She has been dealing with this for almost 10 years now and has 7 large and active tumors. She’s a rock star even if she doesn’t feel like it right now. I asked a question about clinical trials and afterward a girl came up to me and shared that she has low grade ovarian and she did an MEK trial in Detroit. She told me that it worked well for a while and that she tolerated it well. She unfortunately had to go off of it eventually for one reason or another but she strongly encouraged me to do it. A few weeks ago I asked the universe for a sign to guide me in making this decision. The universe sure is direct, huh?
On Thursday, May 8th I go to Boston (MGH) to start my testing and sign the consent form. I will be meeting with Dr. Michael Birrer, the Principle Investigator of this study. I hope he is as warm and wonderful as Dr. Robison and Dr. Dizon. I’ve grown accustomed to a pretty lovey-dovey, human, level of care. I’m pretty spoiled, really. He has a tough act to follow.
- Routine Blood Tests/Biomarker Blood Test
- 2 Electrocardiograms
- Day 15: Pharmacokinetics Blood Samples (PK). I basically hang out at the hospital all day and they take my blood after ½ hour, 1 ½ hours, 4 ½ hours, and 8 hours. This is to measure the amount of drugs in my body throughout the day. (Good thing I saved those Barnes and Noble gift cards from Hanukkah because I will get some serious reading done).
Week 8 & beyond:
After the first 7 weeks my appointments will be spaced out and I will only need to be in Boston for check ups/assessments on Week 8, 12, 16, 24, 32 and every 12 weeks thereafter. If anything, I will certainly be under very careful watch. They not only monitor my physical health but also my emotional wellbeing and financial impact (if any).
I will be sure to update more frequently when I have a better idea of what is going on but these are the first steps.
Last week I was in Las Vegas for the Stupid Cancer OMG 2014 Summit. A conference that brings together young people crushing the shit out of all kinds of cancers. I went with EffLeukemia’s own Tony Lanza and we met my brother out there. It was honestly a blast but I think I’m all Vegas’d out. It is non-stop stimulation and I don’t know if I am cut from that cloth. I am very glad I went but I think I would be okay with not going back for a while.
Vegas should actually be its own post and it will but for now I will say that I thoroughly enjoyed the time I spent with Tony and Adam. I am thrilled to have met some amazing people at the conference that inspired, supported, and challenged me to fight and continue to “get busy living”.
Pictures of the dapper Tony and Adam to come!