[agness]

-- part 5 --

Radiation treatment really bothered me in light of all that I had been through. My MO said that the TCHP was going to dissolve the cancer -- and it had. So why was I going to cause my body permanent damage by burning it with radiation? I was suffering from some serious cognitive dissonance.

Remember that the addition of Perjeta to the locally advanced HER2 population happened in September/October 2013 and was really unprecedented. They took a drug that was working well with the stage 4 patients and approved its use neoadjuvantly for stage 3 patients without further study; the studies would come. This is why during chemo I could find no studies about TCHP, they didn't exist then and they don't now. They just took an existing protocol, TCH (Taxotere, Carboplatin, Herceptin) that was producing strong results and just tacked Perjeta onto the lot. The earliest that I've read that any published data will be available is Summer 2016. You are all still a mystery to the scientific community right now.

Except that there are people like me, who started a thread on breastcancer.org to get folks to post their responses to neoadjuvant treatment over the past year. What my early results show is that you have about a 50% chance with ER2+/HR- breast cancer of having a PCR, and slightly less chance if you are triple positive -- but still also almost half. For all respondents except for one there was major disease diminishment which is still an incredible win for all of us as sometimes they can remove the bulk of disease and that is the end of the story. I still think they need to understand why some respond really well and some don't but I don't see any plans for that to happen anytime soon. The best we can do is pool our own results if we have advanced tumor tissue testing done.

So back to rads...

I really hemmed and hawed about this. It is a one-way street, you can't go back from radiation treatment and it causes some serious damage in the process. Since I had a left breast cancer and an affected node behind my breastbone I was really concerned about the risk of heart damage from rads, especially while being on Herceptin. I managed to get into a study using proton therapy through Seattle Cancer Care that wasn't funded but offered patients cut-rate to participate. In the end it was about $15K out of pocket to do it this way, something not everyone can afford, but sometimes this is the way that treatments advance. Insurance actually covered the peripheral costs well so it could have been a lot more of an expense than it was.

Proton therapy uses custom fields and plates, plus lots of imaging, as they do in radiation oncology, to formulate treatment fields. The difference is in the energy source, they can control the depth at which the protons enter and disperse their energy -- there are no pass-through rays. Unlike those in my cancer group I had no burns on my back. My lungs and heart were not touched, maybe a bit of my pleura was affected in the field, but it was extremely targeted to my body and my cancer.

I tried to get her to do less. I read lots of articles and the risk of breast cancer showing up in a different area of the same breast is really quite low. She said that I didn't understand how sick I was and put me down. My partner was like, but the kids, do it for the kids, so I reluctantly signed up and did my 37 doses. I also had a really bad reaction to rads with wet and dry desquamation, burns, weeping open areas, it was awful. I've heard that for some of us the Herceptin might make rads worse on the body, but I know others who did both and didn't have such a strong reaction -- I think they don't know how to tell who to do more for and who to do less for.

While getting my proton treatment I had the chance to meet a lot of primary brain cancer patients, newly diagnosed adults and kids even with glioblastomas, astrogliomas it was heart-breaking. I took time to research ways that you could push brain cancer treatment using diet, supplements, oxygen, and more. Little did I know that I would be using that same information months down the line.