It's been six years since I've posted on Twin Peeks. I had reached a point where I thought nothing was
that interesting to share.
In retrospect, however, I see I may have omitted some important information for other metastatic breast cancer patients who hopelessly search for information on the web. I was one of those people six months ago when I couldn't find any more than two people to "chat" with about their experience with a particular treatment.
So, what follows is a brief summary of my experienced since my last update in 2014. I may be leaving out information simply because I don't remember every detail of my treatment.
Around 2016 I felt so maxed out on chemotherapy. Not one doctor would acknowledge that my symptoms were chemo related. I had a new nagging cough that was so exhausting and at times brought me to tears. I was told I had acid reflux. I had severe stomach cramping, which would occur out of the blue or when I bent over to tie my shoe or just went to the bathroom. Test after test showed nothing, I was told maybe you're constipated. My sense of taste and smell was screwed up. To this day the smell of rubbing alcohol makes me gag. I was tired and for the first time kind of miserable.
Then I received a gift. I asked a contact who sat on the board of Memorial Sloan Kettering (
https://www.mskcc.org/) he could tell me the easiest way to reach someone about the possibility of participating in a trial (to date, I still haven't qualified for any). The next day I was confirmed to meet the head of the Breast Cancer department (Take heed:
Don't ask, don't get!), Dr. Jose Baselga.
Over a few weeks, it was confirmed that I had definitely gone through menopause (on chemo you might
think you have when in fact you haven't) and through extensive gene testing provided by MSK I learned I had no odd gene mutations. This was checked because some mutations can show you're a candidate for a chemo drug that isn't specifically for breast cancer, but you still might respond well to it. It was concluded that I was primed for post-menopausal hormone therapy. I went on Ibrance (a pill, yay!!!) also known as Pablociclib,
https://www.ibrance.com/ coupled with Letrozole (another pill, yay!!) and together these drugs gave me a great two year streak with no growth and little to no side effects. Research shows that two years is the average success rate with this cocktail and I was happy to fall into that group. I must mention that all of the symptoms mentioned in the paragraph prior went away after I got off IV chemo. So yes, it IS possible to what I call
max out on chemotherapy and if you're doctors say it's not, don't believe them! You know your body best and sometimes, when possible, it just needs a rest!
In the middle of my Ibrance treatment, this sadly happened:
https://www.propublica.org/article/astrazeneca-hires-dr-jose-baselga
I was stunned and devastated to lose Dr. Baselga especially given the circumstances. He and my Lenox oncologist, Dr. Keith Brunckhorst, were the perfect team for me! Who could fill the shoes of Dr. Baselga?
I was gratefully lead by him to Dr. Sarat Chandarlapaty who still sees me.
https://www.mskcc.org/research-areas/labs/sarat-chandarlapaty
After Ibrance, I was put on Fulfestrant, two HUGE shots given in your hip that caused pain, soreness, and numbing for months even after treatment ceased. This drug, more commonly known as Faslodex
http://chemocare.com/chemotherapy/drug-info/faslodex.aspx bought me a few months. I was then put on a combo of Afinitor
https://www.us.afinitor.com/ and an aromatase inhibitor, Examestane and I have no recollection of side effects.
https://www.webmd.com/drugs/2/drug-17764/exemestane-oral/details
Fast forward to April 2019, a scan showed the lung tumors were growing and the cancer metastasized to my liver. It was too soon then to treat the liver with anything outside of using drugs so we decided to just watch it. But we decided, under the care of Dr. Jillian Tsai
https://www.mskcc.org/cancer-care/doctors/c-tsai to do three sessions of radiation to the two largest lung tumors on the left and ride sides. Results were decent with some reduction in size of the lung tumors, but the liver tumors continued to spread.
In February and March of 2020, MSK's interventional radiologist, Dr. Amy Deipolyi, performed Y-90 radiation, a very targeted treatment administered on an out-patient basis while under sedation, through the groin, first to the right then the left lobe of the liver. It was this treatment that lead me to scouring the internet for other people's experiences and eventually writing this post. I had no way to predict for how long I'd be bed-ridden from the side effects that were like none I've ever experienced.
https://www.radiologyinfo.org/en/info.cfm?pg=radioembol
There was a lot of nausea the first round but worse, strange, indescribable pain around the abdominal area as a result of the blood supply being cut off to the tumors. I found only two people on Facebook groups that shared they had similar experiences and convinced me the pain would dissipate within about six weeks, which it did. I had much less pain on the left side in March.
Prior to being approved for the Y-90, United Healthcare rejected it
three times. They suggested I try a systemic treatment, WHICH I'D BEEN ON SINCE 2012. They said because the liver wasn't my first metastases (the lungs were) it wouldn't work. They said there were less expensive and experimental options out there. It was INFURIATING. Dr. Deipolyi, however, armed with her success stories, persisted and after three appeals re-submitted the request at the beginning of the year and it was approved. Was it a new person reviewing the case or just a new annual budget that got me approved, we'll never know. I urge anyone whose treatments are rejected to PERSIST. Kick and scream. Out the insurance company on social media. Call the pharmaceutical companies. I did all of this. Remember, insurance companies are businesses and like all businesses, they want to make money and they
do not have your health in their best interests.
The scan in May following the Y-90 treatment showed excellent results on the right side of the liver--there was little to no activity. The left side didn't fare as well but we thought it had been too soon to make any conclusions. There also was still one pesky lung tumor that was resisting the April 2019 radiation so we proceeded with two
double-shot radiation treatments to that one tumor: two days in a row of twice daily radiation.
A follow up PET scan was done a week ago. It showed that the right side of the liver remained stable with the exception of just a couple of tiny new tumors. Unfortunately, for the most part the left side rejected the treatment and there are a couple of new tumors. There's no explanation for this and Dr. Deipolyi was SHOCKED that one side would respond so drastically different from the other. One reason given is possibly I've been on so many treatments, that the cells aren't kicking butt like they once might have. Lastly, an area on my hip that we've been monitoring closely has been confirmed as cancer. This would be my first, hopefully my last, bone metastasis.
Next steps: Dr. Tsai is very confident that with three radiation treatments, the tumor in the hip socket can be destroyed. This week I will find out when I will be treated. While this is happening, Dr. Brunckhorst, at the recommendation of Dr. Chandarlapady, is going to see if he can get me approved for "off-label use" of a chemo called Herceptin.
https://www.herceptin.com/ Herceptin has been associated with successfully treating HER2+ BC patients, which I am not. But they are in phase III trials for treating hormone receptive positive breast cancer patients like myself and the median success rate has thus far been eight months. Sounds good to me!
During the pandemic I've been fortunate enough to be able to work from home, which I've been doing in our house in PA since March following the second Y-90 treatment. I do not miss the rat race in NYC and I'm much happier and presumably healthier--mentally anyway--with a garden, fresh air, daily 3-4 mile walks and no Covid crowds to worry about. Yes, I may've jumped ship and abandoned my city to live in a bubble, but I've done so guilt-free. And for anyone reading this who ever said to me,
You cannot or will not ever leave NY, you're a true New Yorker, and you'll just be bored, I'm happy to report you were wrong. :)
I plan to provide an update when new results are in. In the meantime, please feel free to ask questions, provide feedback or share this post with anyone who is continually on or looking for new treatments and wants to share their experiences.
Peace. Love. Thanks for reading.
LB
