The Last week of January I learned that my medication combo of Afinitor & Aromasin cut my tumor markers in 1/2. That was the biggest regression I have ever seen during my metastatic journey. I celebrated, I bought new clothes to fit the body that was shrinking due to the side-effects from Afinitor & Aromasin. I decided I was capable of taking on more work... I felt good, so I was like well lets try some more hours at work again. Things were good.
I even was able to finally schedule the surgery to remove my ovaries & tubes. This surgery would guarantee I would have less estrogen feeding my cancer & would save me from getting the painful Intramuscular Shots of Lupron in my bum.
My medical oncologist, gynecological surgeon and doctor at Sloan Kettering did not hear any fluid in my lung. It was a first in almost 2yrs. I was starting to believe I was allowed in the secret society of women who lived on Aromasin & Afinitor (not for the 6.7mo that the study stated) but for the 2-3yrs I was seeing in women in my online support groups.
I was lifting heavy again. I was planning on getting on stage for a fitness competition, something I only dreamed of for 10+yrs. I always admired Jamie Eason, a fellow cancer survivor, and how she turned to health and fitness to channel herself. I have been doing exactly that from the moment I got this beast in 2010. Now I was ready to kick it up a notch. After surgery, I told myself, I am going to train harder, push myself to the limits & compete.
In Summary this is how November 2014 - March 2015
Work was going great.
I was making side cash selling the big clothes, I knew I would never need to wear again. I knew in my heart of hearts I was ok.
I also decided to try a Direct Marketing Gig... I was going to tackle this medical debt myself. No help, just me. I felt good. I was going to do it.
I had fun with friends, I laughed. Most days I forgot I was sick. I felt good.
My pain, it was gone. I did not care where it went. It was gone. FINALLY
I could breathe clear (which honestly was something I was able to do for a year at that point).
I started to make plans to live & not live by every 8 weeks. Why would I need to, I felt great.
March 18
So March 18 came, I have my ovaries and tubes removed. I was told - everything looked great from my Liver to Spleen to Intestines... well my whole abdomen. You get the drift. I was told 2 weeks of rest & to see the doctor to review the pathology (which was standard procedure in 2 weeks).
Those weeks came & went. I relaxed. I read 3 books. I worked on my Direct Marketing Gig, made a crap load of money on my ass. I was making plans to travel & also setting up my first appointment to do the fitness competition. I was EXCITED!
March 30
Then came the day I saw my surgeon. Shit hit the fan. My world melted. Although there were 0 visible signs of cancer in surgery, on a microscope they found Breast Cancer cells in my tubes & ovaries. The doctor was unsure the receptor status (JSUMC never tested it) or if these were from a dead tumor or new tumor forming. I was advised to speak with my oncologist.
World.
Melted.
WTF.... how could this happen.
I bargained with myself. Crap I have stage four cancer, cells are everywhere. I held onto that. It gave me peace of mind.
April 2
I met with my Oncologist two days later, whom said the same thing. "If we open every organ up in a person with cancer, microscopic cells can be found, so lets just do your routine labs and scans & I will see you in two weeks." I was told I would be called if anything serious would happen to be on the scans and to wait until April 9 (when he was back from vacay) to get anything done, so he could call me.
April 9th
Scans happened - CT of chest, abdomen & pelvis... routine crap, get these every 6mo.
Labs Happened - one prick... BOOOM!
I walked out, felt great & was ready to go to Philadelphia for the weekend. Did I mentioned I hit a PR that day on the leg press (300lbs)...yep me, girl with cancer.
..... tick, tock, .... tick, tock... went to a conference on metastatic breast cancer & the changing landscape on how to treat women with my type of cancer...
April 13
No news, I went back to work
April 14, 15 & 16
Called doctor, no news, still working full time, glad my life is normal. Not worried.
April 16
Doctor called me - Those markers are up a 100 points, your CT scan is bad & you need a spine MRI.
WTF!?!? Ok so at this point, I decided I was able to log into my patient portal & read the scans myself.
1. Fluid was in my lung, no measurement. Is it the same ? It was never 100% clear in 2yrs.
2. My T3 was fractured & T4 had a tumor... No size. T5 cleared up
3. The node in my chest wall, which was close to 3cm was gone
4. The CT scan was the worst one I ever read, it was unclear & just mentioned well #1 & #2
That weekend we went away. It was a planned escape. We assumed none of this BS would happen.
In grand Caitlin sense, I EMAILED EVERY DOCTOR I KNEW AT EVERY BIG HOSPITAL AT THE TRISTATE AREA. I needed an eye on these scans & new reports & someone to look at that surgical pathology. My doctor is going based on the local hospitals (Jersey Shore Hospital in Neptune & Riverview Medical Center in Red bank which completely dropped the ball for a good few weeks). I am lucky their Nurse Navigators called to help me get my pathology & scans sent to all 6 doctors I am seeing.
I am still on the fence if my doctor's office is dropping the ball.
April 17
1. I got an appointment at Cornell NY Presbyterian in 3days of that email - with Linda Vahdat
2. Cooper Medical - affiliated with CINJ & MD Anderson got me in within a week of that email - with Dr. Robert Somer
3. UPenn got me in within 7days - Dr Jennifer Matro (who worked with Dr. Christofanni, leading researcher in breast cancer)
4. Sloan got me in in 3 weeks (thats not uncommon & granted unless it was a miracle, I was unsure if I could be treated there) - with Dr. Shanu Modi (she has at least 1 or 2 trials for me, but wants my scans to confirm, one might be an imunotherapy if the pleural fluid is enough)
April 20
I went back for 1 day of work, hoping only these consults would interfere, made plans, left for that Spine MRI & was hopeful it was a blip on this shitty journey.
April 21
I saw my oncologist, Dr. Maurice Cairoli. I adore this guy. He has the most amazing bed side manner, but after seeing him for 5years for every 8 weeks he has become family. He has treated me for 5yrs. He tells me my cancer is "on the run & through the whole spine." My family asked 1x, 2x. & 3x. Then he looked at the MRI and said yes. He never saw the CT but agreed to look at it ASAP. Actually within 24hrs. My doctor explained - you need to get set up with radiation of the spine ASAP.
Oh I was also told that my next option is chemo & that if I chose to do anything else i.e clinical trial or a medication that would enable me to keep my normal life as long as possible - "no sane doctor would suggest that with your best intentions in mind."
* Needless to say I asked for a Brain MRI, I cover ALL bases. (In short it took 5 days for his office to make this happen, we had to go in person to ask for the authorization)
* My doctor wants me on Abraxane, which is a chemo reserved for severe organ involvement with Metastatic Breast Patients or people who have first line chemo (diagnosed stage 4 out the gate).
* My doctor wanted me off of all oral medication, which rendered my cancer hungry and ready to move. (he told me this on the 16, I actually stopped it on the 19... something did not sit right with me, but then I was like, maybe I need a break... who knows but I was only off of it 2days).
* We bumped up my bone strengthening chemo, Zometa, to monthly (I asked for this 2yrs ago)
I spent hours crying, a whole day. I was coming to terms that I was going to die & needed chemo. Shit, my doctor knows me and cancer. He is right.
SO FAR THIS IS ALL I HAVE BEEN TOLD
I was told:
1. Fluid is slightly in the lung.
2. The T3 & T4 need to be treated
(NO SHIT THAT WAS ON THE SCAN)
3. Chemo is the only logical option
April 22 - Part 1
I go see my radiation oncologist, Dr Deborah Butzbach, at fox chase. I saw her in 2011 & she is honestly one of the smartest women I have ever met. No stings, she cuts right through the BS. She looks at my MRI and says - "no the cancer is just in the t4, but we have to strengthen the t3 & a spot is on the t6. This is from an image that gathered my C7-L1. So here I learn, nope two spots, not whole spine. HOPE???
Radiation planning requires a CT to be done. CT also confirms the same & shows just fluid in my lung. No organ issues from my Radiation Oncologists eyes.
We leave & I feel comfortable knowing I am getting 10 sessions of radiation, which is 100% guaranteed to kill cancer in the bones. WOOT! good number!
This is the type of Radiation Dr. Butzbach is performing at Fox Chase Medical in Mount Holly:
- Intensity Modulated Radiation Therapy, or IMRT,
is the most advanced form of external beam radiation therapy. IMRT
allows physicians to precisely target and deliver higher doses of
radiation tailored for each patient and greatly reducing side effects.
What makes this possible is IMRT's sophisticated treatment planning
system. The planning system allows doctors to shape, or conform, several
small radiation beams to the tumor while reducing radiation to healthy
tissue. At Fox Chase, we combine MRI and CT scans and ultrasound to
ensure the most precise delivery of radiation. IMRT is used to treat
patients with prostate, breast, lung, cervical, endometrial and head and
neck cancers.
Fox Chase Cancer Center was the first in the region to use IMRT and our physicians have the most and longest experience with IMRT.
1. Radiation will resolve the spine issue.
2. No visible organ involvement
3. No heavy lifting for 30days
4. No exercise until I finish radiation on May 6.
April 22 - Part 2
Cornell Consult with Dr Linda Vahdat. I am going to summarize this in the best way I can.
1. She said the report of the CT was horrible & that she needs to have a look at all my scans. Done. Gave her the disks. Even based on the written report - "We are still looking at the same fluid in the lung, no nodes this time & the spine.
2. Treat the spine with radiation
3. Stay on Aromasin, because we have no idea if the surgery could have caused a spike in my markers or the inflammation from the fractured t3. I was given a new script for Aromasin & was grateful that this Social Worker, with minimal understanding of medical crap, knew to stay on it.
DRUG OPTIONS:
4. If I don't do a trial, I have three options :
1. Xeloda (oral chemo, no hair loss and usually well tolerated).
2. Faslodex + Arimidex (another antihormonal combo),
3. Faslodex plus Ibrance (a new drug that targets one of my DNA chains that is broken)
5. She thinks (given the data she has) that Abraxane is not the best choice
6. If I did a clinical trial, with a drug called Lucitanib, it has a 87% success rate for women with the DNA mutations found in my tumor from 2010. It may be the next big discovery in breast cancer & I will have early access.
April 27 - 30
Now here is the week of 2 more consults & ultimately the decision I will be making to prolong, risk and hopefully save my life.
PLEASE NOTE
Any medication when you are dealing with cancer is like throwing darts with blindfolds on. Chemo is actually the best way to throw darts blind... it works best on blood cancers, but on these organ cancers & cancers caused by genetics, we have been learning that over the last 7yrs they work only to a point.
Actually all of these medications work to a point. As you can see - I got 11.7mo out of Femara, 2yrs from Tamoxifen & 6mo from Afinitor/Aromasin....
As of now this girl is juicing, trying to meditate, trying to give herself a peace of mind, and trying ANYTHING to save herself.
I have 8 radiation sessions left. I am still on my Aromasin (check the links above to see what it is).
I may be changing doctors. I think I might need to. I need a doctor in NYC near Kyle's work just in case something happens, he will be the first person to be there.
This sucks, but more updates will come.
In the meantime if you see a curly haired gal, walking around with a green juice, walking slowly, sad she cannot use her roids to get gains in the gym... give her a hug, she needs one.
Also if you see me doing weird hippy things - Reiki, Yoga, Essential Oils... etc. I am trying everything. Do not judge me. You would do the same.
Please educate yourself.
I mentioned a ton of medications. I would love for you to look into them and see how they work & do not work. That is why money needs to be donated to Breast Cancer Research for Metastatic Patients. We are the 30% who die every year. Research is funded by Susan G Komen for this subset - 2% only. I refuse to accept anything with a pink ribbon. I will donate it, toss it return it. It means nothing. Its empty to me. Spend that 5-10 dollars on a donation that will save me or the other 108 gals who die daily from this disease.
So another post will be made in 4days. This is alot of information to sink in, but I am blogging, because I am tried of repeating it.
Much love <3
