Our Journey (To be continued)

My husband Mike, after a family camping trip over the 4th of July started coughing up blood. The Doctor thought it might be valley fever or TB but he was diagnosed in July 2007 with nsclc (poorly-differentiated non-small cell carcinoma with features of adenocarcinoma). He had a very large tumor in the lower left lung which was partially obstructing his airway. He had a CT and PET scan and Bronchoscopy Biopsy for diagnosis. Our HMO referred him to one of the best oncologists in our area (Phoenix/Scottsdale) and we had our first visit while Mike was healthy and feeling fine (except for the cough). The treatment plan was to be aggressive with 6 cycles low dose chemo (Cisplatin & Navelbina) and concurrent Radiation to the lung field. The Onc wanted to start immediately.
We went home to prepare for the first Chemo, but Mike developed a post obstructive pneumonia, collapsing his left lung and putting him in the hospital for 3 days in ICU. He was given heavy antibiotics to treat the pneumonia and had another PET and an MRI. The news wasn't good. He had tumor completely blocking his airway and 2 tiny brain lesions. We were Stage IV inoperable. The doctors (neurosurgeon & radiation oncologist) who saw us in the hospital determined that the best we could hope for was Palliative treatment to relieve his symptoms somewhat and give us quality of life for a time. We scheduled a rigid Bronchoscopy to debulk and remove as much tumor in the airway as possible allowing the lower lung to reinflate. We went back to our oncologist to begin chemo, and began seeing a Naturopathic Oncologist for supplements to strengthen the immune system and protect the body from the side effects of the treatments.
I became concerned the radiation oncologist wasn't treating Mike very aggressively. Mike was taking the Chemo and Radiation with minimal symptoms or side effects. We wondered about all the horror stories we had read and heard about. I suspected that the doctors weren't being aggressive enough with dose or treatment so I started doing some research and began pestering the Doc's with my concerns and questions. (I have notes in his file to prove it.) Half way through his Radiation the Dr agreed to reevaluate his case with the cancer board. They boosted the dose and increased the number of treatments. Now we were getting a full curative treatment regimen.
Following radiation in December 07 we were scheduled for treatment of the Brain lesions. The doctor explained our options regarding Whole Brain Radiation or Gamma Knife treatments. It would depend on the progression of the lesions from July to December and if we have more then the original 2 small lesions. The follow-up MRI indicated that the original lesions had not gotten any bigger and there weren't any more of them. This brought up lots of questions for the Oncologist and the Radiation Oncologist. Why hadn't they grown in 6 months? Onc said Cisplatin can slow down brain lesions because they think it crosses the blood brain barrier at the point that the lesion taps into the blood supply. If we treat these lesions what are the chances we will develop more at a later date? Depends on how effective the Chemo is in killing the circulating cancer cells, if there are already micro tumors seeded in the brain that are just to small to see yet (less then 1 mm) they will eventually grow large enough to be seen and treated. We decided on the Gamma Knife treatment because of the minimal side effects and the fact that our lesions were stable for 6 months. It was successful in completely killing the lesions and we had a clear scan 3 months post treatment.
Because of the chance we would be visiting the brain again in the future I started researching alternative treatments for brain tumors. I found two case studies in Germany of children with aggressive brain cancer and many newer studies currently being published on a treatment using a Ketogenic diet to control tumor growth and extend overall survival. Now I had something I could DO to take control and add to Mike's treatment plan. After reading a dozen books on low carb diets, Atkins, Caveman diet, Ketogenic Diet for weight loss, Sugar busters and all the published studies on the metabolism of cancer cells I could find I developed my own theory on human nutrition as it relates to healthy vs. cancer bodies. I call it Caveman meets Dr. Atkins. It's important to add a caveat to our nutrition plan. Just because it makes sense to us, doesn't necessarily mean it makes sense to anyone else. It certainly hasn't been endorsed by our Oncologist or Naturopath, nor has it been discouraged. This is not tested, except anecdotally on my husband for the last 18 months. I figured we had very little to lose, given our prognosis and it has given us a huge emotional boost and empowerment.
Following radiation we completed 4 more cycles of chemo (high dose Cisplatin and Gemzar). We had a wedding, celebrated Mike's 60th birthday and took our family (6 adults and 5 grandchildren) to Italy. When we returned Mike started 150 mg Tarceva daily. We have had two more Gamma Knife treatments for tiny lesions in the Brain (7/08 & 1/09). They grow very slowly reaching only 2mm in size in 6 months. His last MRI was clear, 9 months post treatment. His CEA tumor marker has been a good indication of response to treatment tracked over time. His CRP has been a good indication of our response to the anti inflammatory treatments. We also discovered that Vitamin D levels are important to the bodies ability to fight cancer. Mike was extremely deficient (<14.4) and needed 50,000 IU daily for two months to get his levels between 55 to 75 ng/ml.
Along with our strict diet, Mike is supplementing with herbs and compounds that have published studies for anti tumor properties (Black Cumin Seed Oil, Curcumin, DIM) and anti inflammatory properties. We have a strong relationship with the Naturopathic Specialists in Scottsdale Arizona and the Centre for Natural Healing in Ashland Oregon. (Both make consultations via phone.)
Something I've learned from this journey. Cancer is as complex as the individuals who have it. What is working for my husband might not work for a hormonal female with the same diagnosis. Mike's treatment plan was designed over 2 years ago and that’s almost ancient history given the speed of cancer research and treatment developments. And for some reason Mike has had an exceptional response to treatment. He is healthier then he's ever been and feels better at this point then he did before he was diagnosed. We have incorporated some other interesting things as well. Laughter Yoga boosts the immune system. We visit a lady in Maine every July for prayers for healing and spiritual renewal. We use a Far Infrared Sauna semi - regularly (except during the Phoenix summers) and we see our grandbabies every single day.
Our plan can be summed up as follows: 1 Kill the cancer, 2: Starve the Cancer, 3: Improve the bodies balance and immune system 4: Reduce systemic inflammation 5: ENJOY EACH DAY AND LIVE IN THE PRESENT.