My Letter

I know i owe you a post on everything i Did. But ive been wrestling with my feelings about my medoncs reaction to the news and her wanting me to continue on chemo. So i composed a letter to her and thought id share it because it might be interesting to you. Although you may not be quite as weird as i am, im alive and weird, and reading my letter may help you to advocate for yourself when you need it.

 

Hey dr. xxx,

I want to say how happy i am to be back under your care. And that i respect you. But i have hit the wall and i need to push back and advocate for myself. This last month and especially this last week (ive been traveling since sunday morning and only slept in my own bed last night), while on two kinds of chemo and coming to high altitude have wiped me out. Something/ is trying to move into my chest, im exhausted, and the diarrhea and acid stomach is out of control. I did not take chemo friday night, not today saturday, and im thinking of taking tomorrow off too… basically id like to wait until i have normal digestion before starting again. i need to rest and detox and boost my immune system.

im not really feeling good about the plan going forward and i will articulate why. I’ll start with the science. Xeloda and nerlynx were approved by the FDA as a combined protocol for HER2+ through the NALA clinical trial where it was compared to the Xeloda and Tykerb combo. https://www.targetedonc.com/…/phase-iii-nala-trial-results-…

While i am grateful there is another treatment option for people in my shoes, it is important to note the limits of any proven efficacy. First, there was NO complete response even after 18 months, for any of the participants. There wasnt even statistically significant overall survival. There was significant Progression-free survival AFTER 6 months which is why it was approved.

“Landmark analysis showed that the PFS curves began to separate after 6 months with 6-month PFS rates of 47% versus 38%, 1-year rates of 29% versus 15%, and 18-month rates of 16% versus 7% for the neratinib arm versus the lapatinib arm, respectively.”

So, now lets look at my latest results… the tumor is completely gone. When dr. xxx told me it had reduced, i asked what the new measurement was. He answered there was no measurement because there was nothing to measure. Note that in the reprt there are no measuremnts. I may hav misled you by sending you that photo-because it looks like there is a little white dot. But if you expand the photo, youll see it is a white arrow the radiologist put in to show where the tumor WAS. There is a small gray fuzziness indicating residual edema. So 4 years ago when they first saw it as a speck, it had more mass than it does now. I think you can characterize this as a complete response. But since it came after only 3weeks of xeloda and 10 days of nerlynx, i personally dont attribute it to the chemo. I realize that is the paradigm you operate in, but that would make my performance on that drug combo so astronomically beyond what was demonstrated in the years long clinical trial, i think science supports me saying something else was at play. The very first words out of DR. xxxs mouth was “WHAT did you do between the last MRI and this one?” He has never seen anything like this before and i dont think he thinks it was the chemo either.

Now, lets visit Kai’s imagination emporium, where repeated unexplained by science events keep happening. This is actually the 6th significant tumor i have made disappear without a credible scientific explanation and they are all supported by data in my medical record. So i think i deserve some credibility, even though its outside the box. People in the box die, so i live outside it.

* october 3, 2012 i was diagnosed with mbc. Tumors populated my lungs, liver, every vertebrae, and my entire pelvic girdle. The diagnosing doctor estimated i had 2 weeks to 2 months to live. The most threatening tumor was a large golfball-sized tumor in my clavicular lymph node. TheY biopsied that and my pelvis to type the cancer. I had my first chemo infusion of TCH on wednesday october 17. On saturday october 20, i placed my hand on the tumor and meditated. It went away in 2-3 minutes… completely… no trace… i felt it disappear under my fingertips. It is the only instance where i have direct experiential proof of something i did that brought results that could not be attributed to any other factor. The following wednesday, i told my medonc that the tumor was gone and she said that was impossible, that couldn’t be, id only had one chemo infusion. She came and felt and it was gone and she expressed she had never seen such a thing in 45 years of oncology. I didnt bother telling her how i did it because, well, its outside her paradigm.

So, then i do massive amounts of chemo and radiation, enough to kill most people, but i weathered it because of my naturopathic regimen. I feel that i had so many tumors in so many places, i needed all that toxic western medicine to “blast the barnacles” off the hull. I do credit a role for chemo and radiation but is dont believe i would have survived without my naturopathic regimen which detoxed me, nourished me, and boosted my immune system. Meditation was a significant part of my regimen as well. Against all odds, i was stable and doing well a year later and then they find 9 brain tumor/mets, 8 of them leptomeningeal, and the prognosis is three weeks to three months survival. No one has heard of mbc leptomet survival greater than a year. That was 6 years ago. So i take huge amounts of cannabis oil and mediate for hours a day scrubbing the tumor in my parietal lobe and the outer 3 leptomets in my cerebellum. I try to take Tykerb but it is too toxic. I never had a full daily dose of 6 tablets at once. I had like 12 tablets total over a two week period so the medoncs didnt think it could hav played a role in the complete and never-before-seen complete disappearance of the four tumors i meditated on.

I had SRS on the remaining five and i was NEAD for 5 and a half years, not only systemically, but most miraculously, in the brain. Again, i dont believe anyone else has achieved these miracles. I do believe that herceptin and perjeta could be playing a role in controlling the systemic disease but i also believe my naturopathic regimen is as well. I believe my daily ingestion of cannabis oil has played a role in NEAD in the brain since H&P dont cross the BBB.

So, cut to the sudden doubling in size of this thalamic mass. I believe it was brought on by stress and my not paying enough attention to handling it right. So, i mediated on love and beauty and grace in a general way but one night, i picture the tumor and throw a “firecracker” in it. It explodes in a fiery ball and is gone. I remember thinking, “well, i just got rid of the tumor”. Any anytime i tried to work on it again, i couldn’t find it, it was gone.

Now the only proof of this that you might accept is if i had had an mri the next day showing it was gone before i even started chemo. I dont have that proof, but by now, im really starting to believe in my ability to dissolve tumors. Now if you want the answer to be more substance driven, i did triple my cannabis oil and i did a full round of artemisin herbal combo (i took it because of the parasite theory but there is a ton of research showing that artemisin crosses the BBB and also kills cancer). I did many other things as well but those are the ones i think are most significant.

So, now the tumor is gone. Because you believe the 3 weeks of xeloda and 10 days of nerlynx had something to do with it, you want me to continue on them for 3-4 months and have another brain mri then. I dont really understand what we would be hoping to see. The tumor cant be any more gone. I guess if it came back that would show us that xeloda and nerlynx ARENT working. I personally dont see that happening. I asked dr. King if there was any treatment he would be recommending for me and he said no, theres nothing to treat and suggested a brain mri in 6 months just to make sure things remain stable.

Ill tell you what im worried about and why im pushing back. Gadolinium toxicity from too many brain mris and secondary cancer from unnecessary chemo. And poisoning my body in general unnecessarily. I will humor you and continue the x and n for a little while in case it can do a clean up of any possible rogue cancer cells looking for trouble. But im so not down with 3-4 months when its wreaking havoc on my body and there is no tumor. And i would prefer to wait 6 months on the mri so i can detox the gadolinium.

Thank you for humoring me long enough to get my thoughts out. I guess ill start back up on the x and n until i see you in early february and well discuss and decide then?

Sincerely, Kai