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Mutant Cancer

10/25/2014

ADULT MUTANT CANCER - confirmed, my cancer tests ninja positive for the T790M mutation, which is how it outsmarted the targeted chemo drug (Tarceva).
Cowabunga dude!
My next best option is to enroll in a clinical trial that is testing new drugs specifically targeted at the T790M mutation. I am currently seeking trial sites in the Midwest, but travel will be difficult and costs may not be covered. Best option, my oncologist at Mayo has submitted a "compassionate use" request to AstraZeneca and the FDA for the singular use of AZD 9291 in my treatment.

I can't imagine the FDA will have a response in my lifetime, but ...what the heck, keep your digits crossed.

Overall, my quality of life stays good. I don't have much energy but I enjoy each day on "slow spin". My left eye is getting more difficult but I continue to read books and compare notes with Book Club members (email me if you want to join). Brigit is out of the hospital and recovering nicely. Rocket Dog just learned to fetch, which has been great fun. Pic of Rocket "post fetch".

Results

10/22/2014

Thank You everyone for the thoughts and prayers.
I have learned that I do not qualify for the Mayo Immunotherapy Clinical study :-(
I am waiting to see if I will qualify for other trials, which use targeted chemo. I should know by next week and I will update again at that time. I am not feeling grief or panic over my results. All of life my "luck" has been fantastic...I got the guy, picked for the team, got the job, business success, kids successful, great friends...on and on. Lately it seems cosmic balancing is at work...aka lots of bad luck. Still I feel fortunate for the wonderful life I've lived and continue to live each day. Even as my cancer progresses (I can see change in my eye) my quality of life remains excellent. More than anything I long for calm, quiet space where I can read books and avoid my current "schedule" of responsibilities. Perhaps the safety, certainty and care that comes with hospice is exactly what I need.

Calm hasn't been working lately. Last Friday I raced home from a cabin retreat to meet Brigit in the ER. She had another collapsed lung, was hospitalized, surgery Monday, with hopes she will be released from the hospital on Friday. She is doing well but chest tubes and lung surgery is painful stuff. Routine these days is lots of time back on the 7th floor of University of Minnesota hospital.

Retreat

10/13/2014

News from my lung biopsy (not liver) will be available next week. The news: that I have/ or don't have PD-L1 markers and/or T790M mutation in the cancer...what does this mean? A "yes" gives me an option for treatment, "no" means that hospice is my next step.

I am spending this week on retreat at a beautiful lake cabin with puppy Rocket as my companion. The fall colors and sunsets are beautiful, as is the distant cry of the loon. Very relaxing, very needed.

Over the past week I have experienced incredible fatigue. It is possible that this is an immune system response caused by the new cannabis oil (pain is down, appetite up) - that would be good. Or this is an expected side effect of the cancer progression. Simply dealing with "what is", NOW appears to be a time that I am called to fold into myself, into more silence. I save my energy for my kids, my books and that darn little puppy who exhausts me. Please don't be concerned, or hurt, if I don't reach out or have energy for social visits. Perhaps my energy will return, perhaps not, but right now I get exhausted very easily, many times per day.

I truly appreciate that people care about me and want to help me, THANK YOU! Time is so precious, let me tell you the simple things that I need.

Quiet meditative time
Puppy sitters (So I can rest or run errands)
Help getting my kids settled - transporting furniture mostly (Brigit needs a dresser and bed platform)
An oil change and new windshield wipers (yes really)
Meals, when I can no longer cook for my family
Help planning a funeral - including audio visual
Good books, and people who read them
A peaceful place to be during my final days

Thoughts and Prayers

10/2/2014

For those of you who are sending thoughts and prayers my way, I can use your help NOW. Remember what we learned in book club...Heathen prayers are twice as valuable!

Friday I head back to Mayo Clinic for a liver biopsy. If my cancer expresses PDL-1, I will be eligible for Immune Therapy trials. Immune Therapy drugs (PD-1 or PD-L1) could extend my life by months, maybe even a year. They will also test for the T790M mutation, which will qualify me for other chemo trials that are showing success in slowing cancer. If the cancer spreads to my brain I will not qualify for these trials.
This is a race against time, without treatment I likely will not see 2015. Hmmmm... who would think I'd be dying to see one more Minnesota winter :-)

What are we praying for?
*PD-L1 Markers in my cancer
*T790M Mutation in my cancer
*Getting randomized to the immune therapy drug Yervoy

Thanks to friends Amanda and Mary for helping me locate a cannabis oil that is low in THC and non-sedating. You don't know each other but one of you found the contact and the other encouraged me toward pursuing it. Cannabis oil is another Immune Therapy drug that can slow cancer. You should both know that I had given up on this option, but your calls and emails kick-started my efforts. I will be receiving this new product tomorrow, it gives me a ray of hope. THANKS!

Mutant Cancer

Results

Retreat

Thoughts and Prayers

Colleen McCann

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