Thursday, September 19, 2013

An Exciting Time to Have Cancer

I am realizing that I have been, perhaps, too delicate in describing my health situation. People keep asking me questions that indicate that I need to be more blunt about the current state of affairs. 

So here are the bold facts, no holds barred:
I have Stage 4, metastatic adenocarcinoma, a non-small cell lung cancer (NSCLC). It is incurable, and considered terminal with an average life expectancy of eight months. Since there is no cure, there is no end date to the treatment.  I will continue to have chemo (or other treatments) for the rest of my life. There is no plan to do surgery since the cancer has already spread throughout my body, making removing it from my lung pointless according to current thinking on the subject.

As of my last CT scan, my current chemo regiment appears to be working. This is a great thing, but it is by no means permanent. The tricky thing with cancer is that is can mutate and become resistant to the chemo at any time. 

I am currently on a triplet of chemotherapy drugs: Carboplatin, Pemetrexed (brand name Alimta), and Bevacizumab (brand name Avastin). The standard treatment is to do four rounds with this trio (assuming it continues to work) and then go onto maintenance of Pemetrexed for as long as that keeps working. 

At my last appointment, my oncologist suggested that I do two additional rounds of this powerful trio since it seems to be working and I am tolerating it. I am totally on board with this decision, and actually walked into the appointment armed with a list of arguments to convince her of this approach. I was pleasantly surprised when she suggested it before I had a chance to launch into my pitch.

Let me back up for a moment and clarify what it means for the chemo to "work." There are essentially three possible verdicts from a CT scan.
1. The cancer is shrinking
2. The cancer is stable, meaning neither shrinking nor growing
3. The cancer is progressing, meaning the current tumors are growing and/or there are new metastases. 

My first CT showed verdict #1. Yay! In order to continue on the current line of chemo, you need either verdict #1 or #2. If you get #3, then you need to pursue other options. These take the form of other chemotherapy combinations or clinical trials. 

And that brings me to the title of this post.

I am discovering that a whole lot has changed in the 20+ years since I had treatment for my childhood cancer. Not only do they have MUCH better methods for managing all the terrible side effects of chemo, the whole way of thinking about treatment is undergoing an interesting and exciting shift.

It used to be that the three tools for cancer treatment were to cut it out (surgery), burn it out (radiation), or kill it with poison (chemotherapy). While these three are still used extensively, there are a few new approaches. For example, one of the chemo drugs that I am on, Avastin, is technically not chemo at all, but biologic therapy. Rather than killing the cancer outright, it starves it by preventing it from creating blood vessels to feed the tumors.

Another very exciting treatment is based on finding the driving mutation of the cancer, meaning figuring out what went wrong to make it grow out of control, and stopping that mechanism with a targeted drug. There are two well researched mutations for NSCLC, EGFR and ALK. My cancer does not show either of those mutations, but there are many others being researched currently. If we find my driving mutation and match it with the correct drug, controlling my cancer could involve a daily pill, with fewer side effects than chemo.

The third, and perhaps most innovative line of research involves using the patient's own immune system to track down and kill the cancer. There is a trial for this therapy going on in Karmanos, just down the road in Detroit. My doctor and I discussed at my last appointment that this is a possible option for me if/when the time comes to switch to a new plan of attack. 

So, although the prognosis of my disease is pretty much horrible, I do not feel entirely foolish for remaining perpetually optimistic. With all the changes going on, the statistics are becoming outdated. Also, I am young (the average age at diagnosis is 72) and healthy (I mean, other than the cancer!), which will (hopefully) put me on the good side of the bell curve.


A few days ago, Mikaela had a follow up appointment with her cardiologist and we learned that the last of her premie issues has resolved. Resolved. Over. All those nightmarish months when we prepared for the worst, not sure if the girls would survive, and if they did what sort of lives they might have. Now, they are simply two happy, healthy, and dare I say adorable little two year olds.

No one knows what the future holds.

I hesitated quite a bit before posting this, knowing that it is a lot if information to digest. But I believe it is best to face the truth, and step boldly forward.

My next scan is on Friday, September 27. We will get the results on October 1, and if things are still working I will begin my next round of chemo that day. Thank you for all the well wishes, prayers, good vibes, FOOD, and endless love and support. I am so fortunate to have so many wonderful people in my life. You are all superheroes.

It's okay, even superheroes get tired sometimes!


Unofficial Stepdad said...

Rooting for you loudly from far, far away, Tori! Keep us all posted. There is a whole community out here sending good vibes your way. xoxo

Ausie Cousin said...

I cannot even begin to comprehend your life Tori but I do thank you for taking thet time to help us get an insight into what is happening with you and the varying treatment options. God bless and may our prayers and good wishes help in some small way. Once again thank you.

Ausie Cousin said...

I cannot even begin to comprehend your life Tori but I do thank you for taking thet time to help us get an insight into what is happening with you and the varying treatment options. God bless and may our prayers and good wishes help in some small way. Once again thank you.

Mike Fedel said...

Tori, the way you confront this subject so directly impresses me every time I read one of your posts.

Jen Budd said...

Hey Tori-I know it has been a long time! Debby shared your blog with me and I cant stop reading it. You are amazing. You inspire me and my inner monologue to live everyday with a positive attitude.
At dinner last night my 7 year old said grace after he was done I was telling him about you and what I had been reading about your life. He said, "why didn't you tell me that earlier I could have prayed for her?" He was very relieved when I told him we could add you and your family to our nighttime prayers. You are now joining the ranks with prayers for our cats, the safety off all penguins and toy wish lists.

Much love to you and your family-
Jenny Truitt

Lil-Lytnin said...

Thank you! I am not sure who this is, but it is wonderful to hear about people rooting for me!

Lil-Lytnin said...

Thank YOU for caring enough to read about what is happening with me. I'm not sure which Aussie cousin this is - I think I have 64 - so I will just say it is from all of you. :)

Lil-Lytnin said...

Thank you, Mike. You impress me!

Lil-Lytnin said...

Wow Jenny, great to hear from you! It has been years! I am honored to be among the penguins, cats, and toys. I hope you and your family are well.

Unknown said...

Admin, if not okay please remove!

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