Big Changes

It was a big day today at the hospital. I arrived shortly after 7:00 am expecting to be out of there by sometime around 10:30 am and ended up not getting to leave until about 2:00 pm. Since I had to go in fasting for my CT scan, I was really ready to get out of there! A big thanks to my friend Nicole who probably didn't know what she was in for when she agreed to go with me today.

But all of this also means there is a lot of news so settle in and get comfortable if you want to continue reading the rest of this. I had my CT scan and it showed that the cancer is progressing in my liver. There was one pretty large mass and several small spots scattered throughout my liver. This means that the chemotherapy is no longer effective and I will be discontinuing that treatment. My doctor said I lasted on it much longer than she expected or what is normal for a cancer patient with the BRAF mutation.

So, as was planned for when the chemo began to fail, I will now move on to the clinical trials that my doctor told me about at the beginning of my treatment. This is where my most recent miracle comes in because a spot just opened up! Spots don't just come along every day and the fact that one was available right when I needed it is truly a blessing. Sadly, this spot was actually slated for someone else but given my overall health and activity level along with my youthful age, the doctors felt I was a better candidate for the treatment than the other patient. For this I feel very bad. I do not like that my getting this treatment means someone else won't. I wish everyone who wanted it could have it.

I was accepted into the trial, went over all of the paperwork and signed up today. This is why it was such a long day. By law they have to tell you everything about everything which meant they had to go over 32 pages worth of information. I really wanted to just say, "I'm not paying any attention to you because I am thinking about how much I want BREAKFAST right now and I just want to head over to Elmo's as we had planned to get the orange blueberry french toast and an omelette." But I didn't say that, I sat very patiently and tried very hard to hear and understand every word they said. So, here is what I can tell you about the new plan. (And by the way, Nicole and I were sharing that omelette and french toast, I didn't actually eat two meals all by myself. Not that I couldn't have.)

I will start by taking two new drugs, trametinib and panitumumab. (I know this means nothing to most of you but since I do have a few doctor friends out there and people who know about cancer treatments and such I will just give all the details so they can savor my every word.) These drugs have been approved by the FDA for use with skin cancer. The clinical trials are to determine the effectiveness on other cancers that contain the BRAF mutation, including colon cancer. They say that about 250 people in 6-8 different countries will be participating in this study. Trametinib is a pill that I will take orally every day. Panitumamab is given intravenously every two weeks. Since this is for research purposes they will be giving me a lot more tests and monitoring my overall health very carefully to see how the drugs affect me so I will be getting CT scans more often as well as under go many other tests. If, after six months, my cancer continues to progress, then I can go into a study of a three drug combination, the two I have already listed and adding dabrafenib. My participation in the study is expected to be about 6-8 mo. but I can continue for as long as the drugs are effective and I am benefitting from them.

All of my expenses will be covered, the medicine, the testing, I will even be reimbursed for the gas mileage to go to my appointments, parking while at the hospital and even food for days that I have to be there for several hours. Ironically, they just had open enrollment for health insurance at Kevin's work and he added me back onto his insurance (for an exorbitant cost) which will kick in next month. So now that all of my treatment will be free, I will have insurance to pay for it!!

One of the major side effects of this drug regimen is a rash which tends to look like acne. So, if you happen to see me, no, I did not get in a time machine and go back to the teenage years, and if you find a lack of pictures of me on Facebook, you'll know why. But as my doctor pointed out, I didn't lose all of my hair so maybe I won't get the rash! With me, you just never know.

But, the good news, possibly the best news I have had since all of this began, is that currently about 30% of the people who have participated in this trial have experienced a complete remission of their cancer. To be honest, I am not sure if that is patients on the two drug plan or three drug plan, I suspect it is with the three drugs, but if the two drug treatment plan doesn't work for me I will get on the three drug plan so either way it is good news.

I will begin the clinical trials within the next two weeks and when I do, I will let you know how it goes! Here's to a whole new beginning.