Still Here!

Still here, still on the trial. I have been spending my summer either at doctors, on the sandy beaches, at the gym getting my strength back, or on my couch because of fatigue or nausea.

Lets talk Lucitanib. The trial has been tolerable. My bone pain is gone, which is an excellent sign. Considering I have not blogged since I started the drug, I am going to just give a quick breakdown as to what has happened during each cycle on this trial. FYI I am only on this drug for treatment of my cancer as I can no longer do oral holistic treatments, which in my opinion were only helping ward off side-effects of the other drugs I have been on.

May - Cycle 1 : [dosed daily with trial drug & monthly IV of Zometa for bone strength]

• my blood pressure rose to 129/95, which is normal for the average Joe and high for the average Caitlin, but does not warrant a medication. 
• My heart rhythm and strength remain good. 
• TSH started to rise, but was not high to warrant medication. TSH is 5.4 (normal is under 5)
• I was still in pain in my thoracic region and also upper lumbar, but I just finished the radiation and just started the drug
• Markers: CEA - 140 (normal is under 5); CA 15.3 120 (normal is under 34)

June - Cycle 2: [dosed daily with trial drug & monthly IV of Zometa for bone strength]

• my blood pressure stabilized at the Caitlin HIGH, average JOE normal
• Heart was strong & had great rhythm.... now I know the benefit of exercise, because my heart has been able to stay pretty kick butt through tough treatments. 
• TSH was elevated again, but not to warrant medication. still around 5.4
• Pain was much less in spine region & I was cleared to not just do yoga but lift light weights again as long as I was not in pain. 
• I started to get nausea from the drug. Nausea felt like the flu, lucky for me there are a ton of ways to take care of that - water, ginger, juice, ginger ale, Compazine, rest, snacks, and fresh air. 1st set of scans were done 
• SCANS: Stable, noted exactly where those damn rogue nodes have been for two years... two small nodes on my chest wall were still about 0.5cm in size & I had the pleural effusion. Bones stable. 

• Markers: Were mixed, its hard to see what this drug does to markers & given how my markers respond to treatment in the past - they go all wonky, get alll high and them plummet... but that always takes 4-5mo.  CEA - 150; CA 15.3 112

July - Cycle 3 [dosed daily with trial drug]

• my blood pressure unchanged, but I started getting adapted to my new normal. Less feeling like my heart was pounding & was able to do cardio again, so that helps a bit 
• TSH is rising... we are waiting until it gets into the "hey you have hypothyroidism, time for a referral to an endocrinologist"... TSH was 6. needed to be over 10 to get on any medication or what not.
• No pain, which was AWESOME. Cleared for moderate lifting WOOT and running (meh)
• Nausea remained, started to get tired, but that was all likely due to the thyroid. I was told to monitor for other symptoms. 
• Markers - Mixed, but this time the one that was high dropped and the one that was low rose. You know I can never be normal here. CEA 62; CA 15.3 182
• Fluid around my Left Lung was finally drained off after 2yrs. Hoped it would remain gone. The fluid did not appear cancerous this time and that was a good thing. Was told its a response to either the thyroid or scarring on my pleura for having the cancer in that region for two years. 

August - Cycle 4  [dosed daily with trial drug & monthly IV of Zometa for bone strength]

• SCANS: Stable overall. The nodes in my chest wall had become invisible on scans, so under 0.1mm. The Pleural effusion is back (awesome!), but less as my lung is more visible with less "cloudiness". They saw a 6mm nodule on my lung, which its unclear if that was there before or new, but its newly visible. My bones are stable.
• Markers: My tumor markers have been up down up. The one that rose last month, rose again. The one that dropped last month rose like a few points, but nothing significant as per medical team. CEA 72, CA 15.3 is 211. They believe that the CA 15.3 keeps fluctuating because of the effusion and the hypothyroidism, which they believe are now connected and not related to cancer as there is no lymph node involvement in my pleura sac (lung sac).
• TSH is now 11, so I get a referral for an endocrinologist. In that time, I have become aware that I am cold all the time and then blessed for the hot flashes I get or the hot weather we have been having. Also my hair is coming out like a shedding cat. COOL!
• Pleural Effusion will get to be drained AGAIN. YAY! 

 So in summary, I was hoping that August would kinda put an end to the multiple issues or extra appointments beyond my monthly labs and/or scans. Now I have an endocrinologist in the mix and another visit to the intervention radiologist (pleural effusion drainer) on the calendar.

Have I mentioned that these appointments are all smashed between my palliative care doctor every 6month to evaluate my pain, my original oncologist in NJ to maintain follow-up, my radiation oncologist for follow-up, my OBGYN Oncologist for yearly followup, my dermatologist because every cancer drug has given me acne or some weird skin rash.... This is like the full time job I wish I never got.

Anyways, hope I make it to these appointments. Pray that my next labs show both markers dropping... Labs are due on Sept 3 & scans again on Oct 1.

So here is a detailed update, because I do not want to have to explain it anymore. More updates once I figure out my thyroid.

The Longest Two Weeks of My Life

When I left you guys off, I was 2 days into Radiation Therapy. At that point, I only saw Cornell for a consult.... I had no idea what I was doing after Radiation. All I knew was that I had a lot of thinking, a lot of doctors, and this fun daily radiation therapy.

What kept me sane?

That is such a good question. Honestly two weeks ago, I was on CRAZY steroids & pissed that my cancer would not just SHUT UP AND DIE. So I was on these nice steroids going manic, angry, restless and sad. I was driving 1.5hrs to Fox Chase both ways for daily Radiation Therapy & easily could have driven myself to Trenton Psychiatric at any point of that trip. One day I said.. OK CAITLIN THIS WHOLE BEING ANGRY NEEDS TO STOP. I refused to give into my mental misery. I kept stating - "you are killing cancer, zap zap zap." During the drive I told myself  - "with each zap you are killing cancer, zap zap die cancer." That helped, each day I felt better, and with each zap I was happy.  Within 7 days I noticed I was genuinely happy, because I was getting radiated & killing cancer & I knew (for the first time in 7 mo) that hope was creeping back in. The mania, the anger, the sadness, the lack of hope... it melted away.

I made it through 10 sessions. 10 is such a small number compared to the 28 I had in 2011, but the side effects are less visible this time. The side effects are what you only HEAR cancer patients experience - fatigue, weight loss, fatigue, appetite changes, oh yea and fatigue.

10 radiation sessions to your vertebrae are no joke. Granted your skin holds up... but there are some cool side-effects that you do not expect. These side-effects grow during the 10 sessions and last for another 14days. What did I learn? Radiation is quick. I also learned to take it easy, stay hydrated and do not i repeat do not try to walk long distances alone. I learned that the hard way... which I am paying for today on my couch.

Although I am done with radiation, I am more tired today than I was on the last session. Radiation builds in your system, so the side effects well they are here to stay for a bit. I am taking things easy for a while.

So I am going to quickly go through how UPenn & Cooper Medical went considering that was like 2 weeks ago (so relevant now).

April 28 - UPenn Consult : they had no clinical trials for me. Fine. They agreed that my next standard Tx should be Xeloda and not Abraxane as I had no organ involvement. They said to keep them in mind if I ever needed another consult in the future.
April 29 - Cooper/MD Anderson Consult: Ultimately they said the same exact thing at Cornell & they also thought I should go on the same clinical trial. Also was confirmed that my metastatic disease is confined to my thoracic spine and a node in my chest wall.

I have yet to go to Sloan yet. The trial they offered me, was not something any of these doctors felt would benefit me, which I also believe was not something I felt I would do either. It was for anti-hormonal therapy & honestly my cancer laughs in the face of anti-hormonals these days. I am going to Sloan on 5/15 just so they can get a whole new genomic profile on my cancer to see if it will qualify for more drugs to target my DNA and more precise use of chemotherapies down the line. Thank you Sloan for using science to save me.  (granted my Doctor or Weil Cornell could do this, Sloan has some special lab that does this better)

 The Next Step

• I met with my Oncologist on the 29. We decided as a team that I need to do the clinical trial at Cornell. Its a once in a lifetime chance & my doctor also agreed that after his readings of the scans & not taking the techs word... its really "like a percolator, so lets save the big guns for the future, which will always change in the world of cancer."
• My oncologist and I will still see each other every 30-60days for my Zometa infusions to keep my bones strong and cancer out of the rest of my skeleton. He does want me to keep all my care at Cornell & keep him in the wings. SIMPLIFY NOT COMPLICATE
• As of 5/7/15, I signed myself over to the Lucitanib Clinical trial at Weil Cornell with Dr. Linda Vahdat 

Oh and my brain MRI came out clear. No cobwebs no crazy. Thank god.

SIDE NOTE - If you do have metastatic disease or have a new cancer diagnosis, get a Brain MRI. Cancer goes to the brain, no other scans (PET SCANS DO NOT SHOW BRAINS PEOPLE) will show early brain disease. Brain MRIs should be standard with diagnosis of early stage breast cancer, metastatic disease, and also at any point where a doctor suspects progression of your cancer. I have learned that symptoms are not always everything, which a lot of women I met in the cancer club have told me. Its best to have the evidence and not assume before its too late. SCAN THAT BRAIN

Next on my radar is a CT Scan and Bone Scan to see how radiation worked & also to get a baseline for when I start the trial.

I get to be in NYC 1-2x week over the next two months, which makes me a professional patient. This is on top of seeing my Radiation Oncologist, Regular Oncologist, Lymphedema Therapist and you know (so I do not end up in Trenton Psych) my own therapist. Most days are filled with at least one doctor appointment. My work has blessed me with the ability to get paid & take care of all of these medical appointments.

We stay on the drug for "cycles" one cycle is 8 weeks, which is 2 sets of labs & 1 set of CT Scans. Hopefully no progression & I am stable. Then my time in NYC is monthly and I have scans every 8 weeks... back to normal life.

I officially start swallowing my new medication on 5/14/15. Wish me luck. 

6 months & Too Much Drama Later

I haven't posted since November. Do not worry, I am still here. Things were going great, so I forgot to blog. I forgot to share the importance of sharing the GOOD things.

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.

 This is what I was told: 
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

Reflecting

October is this month for me that used to always be filled with great things - leave changing, no humidity, cooler weather, Halloween, and fall clothes. It is still a great month, but I have come to associate it with Cancer. October is Pinktober. October is also the month that I was first diagnosed with breast cancer 4yrs ago.

This past October has not been easy and the month of November has been no piece of cake. The transition on medication and the new mets areas have resulted in days of pain. Pain that feels like something is broken in my body including the Back pain, rib pain, and still the arthritic joint pain. I was unable to workout, was forced to sit on the couch, and even had to call out of work twice due to unbearable back pain. I can go on and on about the negative about how my first line of treatment for metastatic disease failed me, about how it's one less drug to keep me alive, how my friends are struggling on chemo and targeted treatment and there is no cure. I think those thoughts at least once a day. This is my reality.

This 4yr journey has created many annoying obstacles. One of them is being forced to be strong and no longer get to be a normal 20-soemthing or 30-something. I have changed. I have days where I wish being weak was an option or that I could take a vacation from my own life. I have no choice, I like living and that's not strong it is sane. I am honestly tired of hearing I am strong. if you say this to me, you would not want to hear strong...i don't want to deal with this. But if I didn't face this disease the only other option is death. I am not facing some trauma of losing someone or divorce or abuse, that is true strength. Having stage four cancer means you have to suck it up, do what is needed or you will die. If I do not scan, treat and repeat I will be dead. Each day I swallow a crappy medication and worry that the disease inside of me is growing resistant against another medication and that my time here is limited. Hope is all I have and honestly with each rise in tumor marker and each failed treatment and each published report that the stats are against me, my hope shrinks and I get more and more depressed. I have only had six months of "good news" since being stage four....which is a short period of time where I was beating the odds and markers were dropping.

I spent the last 7 weeks miserable on the inside struggling to smile on the outside. I had mouth sores, cystic acne, and acne on my scalp. My joint pain has increased & I have been unable to crawl out of bed or off the couch most days. This is not like me. I honestly hate it but I kept hoping "that this might be the drug for me, I might be a lucky one." I have spent days and hours looking for the women in the secret society where Afinitor and Aromasin brought them to no evidence of disease for years, but I have found no secret society. I found other women in the same boat as me hoping that their new medication is the one that will bring them solace, so they wouldn't have to worry about failing more therapies or being a slave to chemo every week.

My markers are stable, but we want them dropping. I have 8 more weeks to pray and hope that they stay stable or drop. If the markers incease, I go on chemo or a clinical study. There are no other fda approved targeted therapies or antihormonals for me. That's scary. Chemo does not save my life at that point, but only extend it. I don't want that life yet or ever.

Everything Will be OK

Even if sometimes I do not believe it. Everything will be OK.

Femara has stopped working. Cancer has not invaded my organs but a lymph node on my lungs next to my heart, my 11th rib & my t4 on my spine are no longer stable. They are showing small growth of cancer. My Ca 27.29 tumor markers also jumped 100 points in 6 weeks.

The positive is that Femara (the weakest form of treatment for a Stage 4 ER+ breast cancer lady) cleaned up some nodes and the pleural effusion surrounding my left lung. Bad news is it stopped working and the cancer cells are now boiling and bubbling in the lymph node and the spot on my spine & rib cage. This means I am done with Femara. I can never go back on it, unless another therapy is approved to pair with Femara in the future (kind of giving it super hero powers to make it work better).

Now, I move onto a new drug combination : Afinitor and Aromasin (another antihormonal). Afinitor is a targeted therapy/chemo that is taken orally, daily. It is an mTor Inhibitor which when paired with Aromosin, makes the antihormonal more effective. With this combo we hope that my cancer is fooled and allows the super charged AA combo kill what is left of my cancer and get those tumor markers down to normal. New medications means new potential side effects. I might be complaining of the following: delayed wound healing, more susceptibility to colds/flus, mouth sores, stomach issues, impaired appetite, weight loss, breathing issues, and bone pain. Please do not come around me if you are sick. I mean this. I love all my friends & family, but the last thing I want is to be in the hospital or out of work due to an infection or a cold.

This is my third line of antihormonal treatments, which could mean if this does not work, I go on standard chemo. That is if there are no studies or new drugs approved by the FDA. As of now, there is no available medication approved by the FDA. All of these drugs are in clinical studies or are in the process of approval from the FDA, which takes up to 10 months. Here is a link to some drugs coming out in the next year or two : Studies that can save me, so DONATE TO METAVIVOR!!!

In the meantime, I am going to inquire about getting a biopsy of the cancer on my spine to get the exact pathology of the new, mutated cancer. I want to see if I am eligible for other treatments. As 1yr ago, we only had enough fluid from the effusion to test for hormone receptors. I want to see if i am a candidate for HER2 treatments also. I was a borderline candidate 4yrs ago, so now studies show that those medications may work for me too.

Now this is not going to be easy, but I can do this. I swallowed my first dose today. I will keep moving on. I am going to get my butt back in the gym. Life moves on. No sense of being alive if you do not live the life worth living.

Guest Post: "Wake Up" - Kyle

The Today Show is having a special on October 1st to highlight Breast Cancer Awareness Month. They initially were going to focus on Joan London's recent Dx with Breast Cancer & then after a fellow stage 4 breast cancer sister emailed them asking to increase awareness about Stage 4 and Metastasis, the show offerred to have her on as well. The Today Show asked for my fellow sister's picture and then denied her appearance on the show when they found out she had hair and was not "bold and bald." Many women I know have been emailing The Today Show outraged about their stereotype of this disease, most likely to glamourize cancer. My boyfriend, Kyle, was angry & he wrote something about his views on the situation. I decided I wanted to post it on my blog.

Here is his guest post. Please share and let people know that The Today Show is in denial.

I'm a bit pissed off.  I'm not the most well-spoken human being, and I rarely post or even rant, but here we go…

This morning I found out that the Today Show is doing a piece on young women with breast cancer.  They reached out the community and asked for people to be on the show to talk about their realities. When contacted by a young woman with stage 4 cancer about her interest in coming on the show to advocate, they denied her because she was not bald.  I believe the response was "I'm sorry but we're looking for bald and bold."
 
Not every person who is sick "looks" sick.  I'm not trying to take anything away from the many women out there dealing with cancer and have lost their hair, but rather point out that the media is controlling how the general public look at issues that have become incredibly important in society.  My girlfriend and many friends that we've made along the way have stage 4 cancer and look well.  I bet you no one would ever even suspect that they're dealing with this horrible disease.

It is irresponsible to ignore the other sides of cancer.  We're providing people with only a small percentage of the truth when it comes to how cancer affects different people.  YES going through certain treatments may leave you bald.  NO that does not define what cancer is for those who have been diagnosed.  And re-diagnosed.  And re-diagnosed.  And RE-DIAGNOSED.

Actually allow the women who want to share with their community the reality of their situation to come on your show and advocate.  To make others aware of what can happen and to show the world that their views of cancer are skewed. Beacause of the lack of "awareness" and focus on Stage Four Cancer Women with stage 4 breast cancer see the least amount of funds devoted to research. 3% of funding goes to stage four and 30% of women diagnosed with breast cancer will eventually get stage four breast cancer (whether that is 1yr or 20yrs after the initial diagnosis).
 
If there's going to be an end to this thing ( Better treatments, etc), then more people need to know that having cancer is not always something that can be seen on the surface.  It's something that throughout the rest of your life will be something you wrestle with inside of you.  You never know if it will come back.  You always feel like the seconds are ticking away until it does.  You try to live your life clean, and healthy to keep it at bay.  You are constantly living in fear.  It might not show, but it's inside.

Granted, I'm speaking from the view of a caretaker.  I've been with my girlfriend since before she was diagnosed. I love her more than anything.  I want a future with her where cancer is not in the equation, but that is never going to be the case.  And that's just scratching the surface of how I feel.  But how I feel doesn't matter.  I can't imagine nor hold a candle to the many others out there who have to live their lives with this disease haunting them.

Another thing to consider…if you think about it, there's most likely someone in your life who either has cancer, or will have cancer in the near future.  There's an equally good chance that you will think "that person's too young."  It's an epidemic.  If you don't realize that then you're living under a rock.

I really hope that I've spoken in a way that does not cause the cancer community to be upset with me.  This message should not take anything away from any of you.  I just wanted to say my piece about the importance of making people aware of the realities of all stages of cancer, especially in young people.  It is most certainly not my intention to upset anyone.  You are all stronger than I will ever be.  Whether or not you are bald, you are all some of the boldest people in this world and it would be a privilege to know any of you.  Keep fighting the good fight and keep living your lives.

August was a Blur

When I last posted, I discussed how I was nervous that my tumor markers would creep up. On August 15, I learned my tumor markers jumped 100 points. My mind automatically was flooded with the worst thoughts - fear that the cancer had taken hold in my organs, it was actually forming a solid tumor, or that my medication was not working. I was seriously hoping to make this August BETTER than last August - good blood-work, no scans, less doctors visits. It did not work out that way, I did have a great August & spent plenty of time at the beach. On the other hand, my August began to be filled with doctors appointments and scans & fear. The Cancer PTSD reared its ugly head and my mind was in a fog and my body was on autopilot.

On August 18, my doctor said the words that every cancer patient does not want to hear "progression." Rising tumor markers can or cannot be progression of the cancer. The only way to rule that out is to have CT Scans of the Chest & Abdomen and a Bone Scan (and for some with Brain Metastasis or Cognitive Symptoms a Brain MRI). After my tri-monthly Zometa infusion, I was sent off to have the scans. I got to spend the next day to be poked and shipped around the Hospital Radiology Department crossing my fingers & toes for good scans. Then I waited. I went to work, I dealt with all my clients problems & in the back of my head I wondered what those scans said. I continued to project the worse... how could I not? I forced myself to ground myself and remind myself that I felt great and should be OK. I had to distract myself with my kitten, my friends, the gym, and work. It was all I could do until I saw my doctor on the 25th.

Here comes the 25th and I find out that my CT Scans were stable and had no changes since my most recent scans in May. No cancer was in ANY of my organs and a tiny bit of fluid continues to remain the in the pleural lining of my left lung. My bone scans were better than 1yr ago. Actually all the scans were better than 1yr ago, yet the markers were the same as they were before I started my current treatment. In this case a doctor is at a crossroads, so as a patient we stand there at the crossroad & there are two options for treatment at this point.
     1. Change to the next line of anti-hormonal/targeted therapy even though the scans were stable and base everything off the Tumor Markers.
              OR
     2. Stay on the current medication, wait  6 weeks, and restest the blood to see if the Tumor Markers drop, stay the same or rise.

My doctor chose to stay on the current medication (Femara Daily, Zometa IV every 3mo, and Lupron IM Shot every 3mo). Now I wait 6 weeks. Does this mean things are good. Not really it means I am in the grey area. It can mean any of these things starting from the best to the worst.

   1. The Markers rose due to some other inflammation going on in my body & it was a fluke, so the Femara was working and the markers drop when I eliminate whatever I was eating or doing causing me issues (which considering I am gluten-free and eat organic and do not eat sugar, it really does not leave much). Kyle and I think I was eating soy sauce infused Beef Jerky, so maybe that was it.

   2. Femara is working and this was the last growth spurt or flare from the tumor dying off and expelling its dead cells into my blood.

  3. Femara is not working, my markers continue to rise & in 6 weeks we have to change my medication. This means I will no longer be able to take Femara or Arimidex alone and I move onto real medication i.e. oral chemo.

We are not out of the woods. On Sept 30, I go to the lab for blood draw & on Oct 8, I find out what we are doing. I might feel great. I might look great. Inside I am worried. I plan on spending this month distracting myself with the gym, my kitten, my friends, and a good book. If the cancer is progressing, there is not much I can do but hope that my next medication gives me more than 1yr of effectiveness. If the cancer is not progressing, then I get to be tested and poked and prodded every 6 weeks until my markers start to drop again.

If people are wondering Femara has been no trip to the park. I am tired. I lost 10lbs in 1mo back in August 2013. I swell like a pregnant lady. I can't sleep without taking Melatonin. My joints feel like the Tin Man on most days. It hurts to type, to write with pen, and to use my fingers for any long period of time thanks to Arthritis at 30.

If I have to change medication, the symptoms I hear get worse. The worst of it is the chemotherapy called Affinitor, which is paired with Aromasin. Aromasin is another anti hormonal that has the same lovely side-effects that Femara has. Affinitor has typical chemotherapy side-effects - mouth sores, fatigue, impaired healing recovery, affects the liver & kidneys etc. The list goes on and on. It also came in a nifty bag like this one:

I really do not want to swallow something in a Hazard Bag. I really hope that this marker increase was a fluke. Flukes are rare in the world of stage four cancer. Maybe I can be rare, maybe I will be fine. I feel fine. Pray for me.