I am getting down to the final mile. FDA approved treatment has failed and I am now deciding if I should participate in clinical trials. I have identified one option that has promise - AZD 9291 - this is a drug targeted for a cancer mutation which is the likely cause for my current chemo failure. The first round of trials with the AZD 9291 have been very successful with nearly all participants benefiting.

I will need a biopsy to confirm that I indeed have the T790M mutation.

First round trials are closed. Opening in October are next stage trials in New York, Boston and Atlanta.

I am now trying to lean more and research travel and lodging cost in each city.

Overall my quality of life is good. With progression I now have pain daily (intermittent, not too bad) and have less energy. I am reading more, I will repost the book club invitation in case you would like to read with me. We have a Facebook group set up for book club exchanges.

Crap darn it... my cancer is on the move again. Increased pain brought me to the hospital for another PET scan, and it showed cancer tumor growth and new sites of metastasis in the lungs and plura. My bones were clear, results from the brain MRI are not in yet.

It seems I have exhausted the usefulness of my current chemo, Tarceva, much sooner than I had hoped . I returned my dose to 150mg and will discuss treatment options with the University of Minnesota and Mayo Clinic. We will be looking for clinical trails .




On a lighter note, Brigit's new puppy Rocket Is a funny and cute  fluffball bouncing around licking us all back into happiness. 

Craig and I just spent a week in Beaverton, OR packing up our apartment. Our domicile is right now heading toward the mountains and over the plains toward Minnesota. In August a new chapter opens, we become Minnesota residents...Minnesotans & Minneapolitans.

Treatment decisions have been difficult and rapid.  We flew to Minneapolis for treatment only 5 days after diagnosis. After 5 very stressful months of treatment and living chaos, we are finally feeling settled in a nice home with a life that is calmer and more "normal". Having only one home base is the final stabilizing choice, until we know better what my prognosis will be.

I am beginning to feel very hopeful. Tarceva treatment, at the reduced dosage (100mg) is very tolerable. I HAVE HAD 5 VERY GOOD DAYS that feel energized and mentally acute, like how life used to feel!  I've even started planning projects at home. This is the quality of life I am seeking!  We are early in the process but if I can maintain current quality of life on Tarceva, I will have a good run. I joined an online forum called "Inspire" where there are lots of people with the same diagnosis and treatment options, many of whom take Tarceva. There are people on the forum who have been on Tarceva for 2, 3, 5, even 8 years. I am feeling almost like I know I have years ahead of me ... wow, what a different feeling.

To my Oregon Friends - yes I was in Oregon last week for 5 days. I apologize for not telling anyone. The work was very intense and I was sick for the first 3 days. There just wasn't any time, this time. Next time. Ok?

These days I use pot and pills to manage my life. Sounds like a disaster, but I have actually reached a livable balance point. The oral chemo, Tarceva, is working "too" well. My side effects (rash, diarrhea, hair loss, fatigue) have been severe and surprisingly that is a good thing. Research shows patients with severe side effects have the best response to the drug. I am choosing to reduce my dosage a bit, in hopes of preserving my hair and healing the rash on my face. I have joined an on-line forum called "Inspire" which allows me to discuss my condition and treatment issues with others. Several patients on the forum have reduced their Tarceva dose, due to side effects, and still have had an excellent response to treatment. There were 3 research articles on reducing dose that someone posted for me, all indicating that patients who reduced dose due to severe side effects had the best outcomes (likely correlated with the severity of side effects not the reduction in dose). Some patients report being on Tarceva for 2, 3, 4 years...imagine gaining that much time!

Tarceva research on reduced dose, another article,  and another

Oncology Woes - It concerns me that my oncologist did not  know that hair loss is a side effect of the Tarceva (widely reported on the forum). Instead, she suggested I see an endocrinologist to explore potential autoimmune issues. Lots of appointments, tests and needle sticks for nothing, thank goodness I researched it myself. I will shift to Mayo once my cancer begins to progress because I feel they are more skilled and have a more comprehensive approach to treatment.


As for pot, I have 80 grams of cannabis oil obtained from a legal Oregon Medical Marijuana dispensary. Only cancer patients can buy cannabis oil, and trust me, no one else would want it because it tastes awful and makes you dizzy. Cannabis oil is made by using solvents and low heat to draw all of the THC out of a rather large amount of female plant bud. It ends up as a blackish green tar that is incredibly potent and difficult to dispense...so we use an Oreo cookie. I take about .25 gram of the oil in a cookie each night. The picture below is my jar of cannabis oil (tar). The cannabis oil has helped with sleep, pain, nausea and appetite. Some patients report that cannabis CURES their cancer at the dosage of 1gm per day. I currently sleep all day if I take more than .2 grams. I'm not certain I can improve my tolerance to 1 gram without sleeping for a month, still it is nice to know the cannabis is available to help manage pain and improve sleep.

Research on Cannabis for Lung Cancer

Test results show a 50% reduction in my cancer tumors, with no new metastatic spread. My response to the drug Tarceva is viewed as "normal" by my oncologist. Recommendation is to continue with the Tarceva and hope for further reduction in tumor size. Dr. Fujioka seemed confident that "progression free" survival would be 9-11 months.
Yay!!
I am looking forward to another beautiful Minnesota Spring!

Overall my energy has been very good, especially for the past 4 days. Craig has helped me with cannabis oil dosage, to ensure that I sleep but not all day. This is working well. 

I continue to struggle with Tarceva side effects (skin rash/acne, diarrhea, fatigue). The rash on my face is unbearable. I am also losing my hair (unexpected, unknown cause). Vanity is screaming!!! You would think, when coping with a serious illness, that I would no longer care  about "the small stuff" like appearance. Wrong. l feel even more vulnerable and "abnormal". I feel like hiding in the bedroom all day; I have to force myself into social settings.  I am working with my oncologist to reduce the severity of the rash either using antibiotics or by using a reduced dose of the medicine. This is a piece of "Quality of Life" that turns out to be very important for me. 

Mayo Clinic is as impressive as most of us expect it to be. I am now an established Mayo patient and I can return any time for assessment, treatment options and trials.  Dr. Aaron Mansfield is an excellent oncologist who spent considerable time with us answering questions and reviewing research.

BEST NEWS - All doctors expressed enthusiasm regarding the discovery that I have an EGFR mutation expressed in the cancer. I was switched immediately to a targeted oral chemotherapy called Tarceva (which was fully covered by my insurance - Thank You Dana). Tarceva is expected to reduce tumor size "significantly" and stop metastatic growth for about 1 year. Some patients can be kept on Tarceva for several years before moving to another targeted drug. Since EGFR is a known mutation, new drugs to prevent regrowth are already being tested. Still, there is a small chance that Tarceva won't work for me, or that side-effects will be intolerable.  In 6 weeks I have a CT scan at the U of M to measure the effect of the drug.

I AM AFRAID TO BE EXCITED. It's as if my life was handed back... tentatively. How do I live this uncertain edge? Will I feel as alive as before? Could I possibly feel good enough, long enough, too forget that I am sick?  Could I return to ignorance...or... a thoughtfully sober zest for renewed life! Am I bargaining here? There were so many thoughts and prayers sent this way, could this be my miracle? With too many unknowns I remain cautious, but my feet want to dance.

I am already dancing to THIS certainty:
- No more IV Chemo sessions
- No more fatigue and chemo "blah"
- Fewer medical appointments and procedures
- Having more energy to connect with those around me.
- Taking a break from the Keto diet and returning to fresh veggies

Craig and I talked about a future today, plans that started to reach beyond summer... 

I learned today that I tested positive for EGFR (Epidermal Growth Factor Receptor) a mutation in the cancer that explains why my cancer has been so aggressive. Good news is that there is targeted chemotherapy for EGFR mutated cancer (common in non-smokers). We should have known this weeks ago (thus the "fired" oncologist) but hopefully I can still enjoy full benefit from treatment. EGFR treatment is a pill, Tarceva, an oral chemotherapy that is expected to slow or stop cancer growth for 1 year. I still need to manage side-effects but fewer side-effects than IV chemotherapy...maybe I will feel more ALIVE on a daily basis.

I am afraid to grab on to it, but just maybe I have gained a some future, some hope, some LIFE! This is mind blowing, I am hesitant to get excited until I get a full review from Mayo Clinic tomorrow. I also have been told that insurance may refuse to pay for the drug, which is incredibly expensive.

Tarceva - read more

Sorry for not posting , I've gotten feedback that I should post more regularly.

Things have been exhausting here. I have officially "fired" my oncologist and start Monday with a highly regarded Lung Oncologist, Dr. Naomi Fujioka. It was literally a fight, with some high level strings pulled, to get on her calendar. I also have an appointment at Mayo Clinic on April 29 & 30. Mayo will assess my treatment so far and discuss options with me.

I am day two after my second chemotherapy treatment and I am wiped. My energy to interact with others or even get out of the house is pretty low. Craig is back and will join me at appointments to help make some of the now critical decisons, and Brigit is my research assistant helping determine options and assess drugs. Many of the new drugs are marginally useful, extending life only 2 months more than chemo and with vicious side effects.

Most important to me is quality of life, and my best chance at quality of life is NOW. Due to the poor prognosis with chemo, and the  blow chemo delivers to quality of life, I am leaning toward stopping chemotherapy. I will listen to Mayo, I will discuss and bargain for best solutions, but QUALITY not LENGTH of life will be my focus. If my biopsy shows a mutation, then my treatment will switch to pills and provide a better prognosis. I am also hoping to gain access to PD1 trial drugs by being plugged in at Mayo, the drug only works for 1 in 3 but when it works, patient lifespan is expanded by multiple years.

More Options Explored:

I remain on a Ketogenic diet, fasting during chemo, hoping to slow the cancer by removing sugar.

I cannot use hyperbaric oxygen due to the chemo agent  CarboPlatin. Perhaps in the future if I discontinue this chemo drug

Research from Harvard shows a very strong response in Metastatic NSCLC Adnocarcinoma (what I have) in response to Delta-9 THC. This research is still in animals with some human trials in Spain.  I am looking into cannabis options and a few synthetic THC drugs that are already on the market. Unfortunately, I just left a medical marijuana state.

Thank you everyone for the thoughts and prayers, flowers, gifts and supportive email. I apologize if I do not always respond, I think all of my energy has gone into trying to find a path through this grim medical grind, while still grabbing on to the sparkly moments. Brigit and I have laughed a lot, she threatens to "out" me on the blog, saying my behavior is ridiculous and it would shatter my solid blog image. I think, if you know me, you've likely been witness to my sillyness. We began planning my O-Bitch-uarie last night and discussed having a funeral that I can attend, I guess it's called a Celebration of Life. We have had fun with our twisted think-tank dinners, gathering friends in our tiny apartment, using spoons because we don't have forks, and laughing a lot. As always, Life is a fond adventure.