Saturday, December 26, 2015

It Has Been A Whirlwind

I have had trouble writing & updating my blog. The months of August - November were rough emotionally and physically for our household.

First I have updated my Treatment Page with all my procedures & most important all my treatment and herbal supplementation I have been using (started supplements again 10/2015). 

In August, a close breast cancer friend passed away, she was only 34. She was my first friend or cancer buddy to die from this disease. That same day my Uncle Hank passed away, he was only 54 and was struggling with lung disease. Both of these people were vibrant and would draw people in because their auras were so bright. Yet both of them were gone so young. These two blows hurt. Both left behind amazing families and spouses that I love so very much.

The one that hurt the most was when my Aunt Kerry passed away. I can't really even write about this yet. She was a best friend of mine, a second mom, my godmother, my aunt, my friend, and my first cancer sister. She died after battling metastatic Ovarian Cancer for 6yrs. My Uncle now lost his best friend & there has not been a day that has gone by when I worry about my Uncle.

In the midst of all of these losses, I learned that I had developed Hypothyroidism from the clinical trial for Lucitanib. The lack of thyroid hormone made me crazy, bloated, and emotionally unstable. My hair was also shedding and creating nests in our home. The stress on my body from the trial drug and the losses were starting to show in my physical appearance.

I also learned that my Pleural Metastasis, which I have had since my cancer recurred in the metastatic setting in 7/2013, was more extensive and was unable to be seen well on any scans. My Pleura was a hard shell, capitulating my lung, and causing the chronic pleural effusions. I was sent to a Oncological Thoracic Surgeon to consult to have my lung fixed.

I underwent VATS surgery on 9/30/15. They were unable to inflate my lung in surgery, learning my lung and chest cavity were coated with cancer. A PleurX Catheter was placed in my left lung cavity & I had a tube in my left rib cage. I was devastated. I also learned that the trial was not removing the cancer, but keeping me stable with a compromised lung.

We did biopsies of that tissue and sent it to Prescion Medicine to learn the mutations in my cancer & to see if I am eligible for anymore biologic or targeted therapies and trials. We also reviewed my Foundation One report that was done in 2013 on my breast tumor. We learned that I would be eligible for Ibrance (CDK Inhibitor) or trials with other CDK Inhibitors. We also learned I had a BRIP1 mutation, which is BRCA1 variant, therefore I am eligible for trials with a PARP Inhibitor, which is a very promising drug in the trial phases. It was a lot to take in. We also learned that I needed to get on Chemotherapy... talk about a giant glob of information. My doctor was leaning towards either a PARP Trial or oral Chemotherapy.

When I got all that information about my cancer, I was having to get a visiting nurse come 3x week to drain off my lung. Since the trial did nothing to improve my well-being and cancer, I was taken off the trial & put on oral Chemotherapy called Xeloda. I currently take Xeloda 1,500mg 3x daily. So far Xeloda has cleared out my lung cavity and the pleural effusion is gone. I have been blessed with cracked and peeling hands, cystic acne, fatigue, achy muscles, digestive changes and nausea, because of Xeloda.

Eventually I got used to the PleurX & was able to visibly see that this Xeloda drug was working with the less fluid draining. Thanks to Xeloda, I had the Lung Drain from 9/30/15-12/4/15. It could have been longer, but my treatment was working. My tumor markers plummeted, which has never happened. They are currently 67.5, when they have always wavered between 160-250. Despite side effects of fatigue, nausea, muscle aches, and Hand Foot Syndrome, its worth it if its killing my cancer.

Things did get better & I feel like they are still improving.

We got engaged.
We went to Disney. I rocked the trip with my PleurX Drain.
My cancer is retreating for now. The tube is gone.
I updated my blog & my TREATMENT PAGE.
I was able to take my herbal supplements again.
I am returning back to work after the longest 8months of my life.
We are planning a wedding.
The holidays were excellent, but I missed my friends who passed and my family who passed this summer.

I could get to No Evidence of Disease. I hope I do. I could recur. This is what life is going to be like for me. I probably will update this less. I want to spend time living and not always writing about cancer. I want to update this just to help someone who needs to know some information about cancer & that they are not alone. I have found an online support group of women under 40 diagnosed with Metastatic Breast Cancer & I now moderate a group. This past week our group lost four girls, two of whom I was very close to and I felt another emotional blow. Losses before the holidays are not pleasant. Neither of these women were older than 35.

 It is time for a cure. I am tired of just taking drugs with horrible side effects to prolong my life & not save it. I just hope I get to see the day when cancer is easily treated and we have stage 4 survivors who have lived 20+yrs as the norm.

Luckily, I have been blessed with an amazing in-person familial and friend support network (Kyle has been my biggest support). My goal is to grow old with Kyle and watch us get wrinkles and have fur babies and watch our frozen embryos become babies. Its all I ask.

Sunday, September 20, 2015

Famous for a Day

My story is going to be posted on the Voices of Metastatic Breast Cancer Blog. This blog is written by a fellow metastatic lifer, Lesley Glenn. She asked to have me share my story.  My story will be followed by Metavivor, Cure Magazine, Metastatic Breast Cancer Network, Cure Diva, and Living Beyond Breast Cancer.

My story will be live tomorrow on this site: http://voicesofmbc.com/. Please share it. I don't want to share it for fame, but to put more faces to this disease.

Check it out & if you tweet or post on facebook can you please hastag my story with the following hash tags:
#metsmonday, #voicesofMBC, #stageIVneedsmore
 

Saturday, September 19, 2015

Hypothyroid = Sluggish Depressed Irritable Blob

I finally got my hypothyroid in check (or I am assuming) and have been put on Synthroid. I have more energy, my hair is not molting all day every day, and I am not as irritable and depressed. So the Thyroid was Fixed. I also was eating everything in site, which is good. I put back on the weight I lost in April due to stress & not eating enough. So R.L. Stine, who clearly is the best kid author for kids with sick minds like myself, wrote a book to homage hypothyroidism.



Now onto the Lung. My pleural effusion has been so chronic & since I had a enlarged lymph node in my chest wall that apparently is the drain to the pleura region, my effusion never got better. Awesome. Since the effusion was blocked by some cancer and had cancer, a rind formed on my pleura around my Left Lung. This rind is a combination of things, dead cancer, possible remains of cancer cells, and scar tissue. Most doctors are calling this scar tissue. That means I will need surgery to remove the "Rind" to free my lung to finally drain the effusion.

Up until 2014, most doctors did not remove the effusions, because most cancer patients (from lung to ovarian to breast to lymphoma peoples) do not get effusions as the ONLY and FIRST site of metastasis. Well lucky me, I am the 2.4% of people who did! Now they know that the effusion can be fixed if this person (me) has a chance at long term survivorship. Awesome, glad I now have another surgery on the table, when the effusion could have been drained in 2013 and that node radiated in 2013.

In the world of cancer, we can never have "hindsight." There is new stuff everyday and doctors are constantly going over new terrain each day when it comes to metastatic cancer and even more uncharted terrain in cancer in young adults. So now we go into the new terrain they know will help.

So this effusion and I have like become one. He is my codependent cancer caused buddy who now won't leave without force. So here is what is gonna be done... and soon. Since I have no symptoms of an effusion, I am visualizing this as an enhancement surgery as seen here:



1. I have no problems breathing. So clearly my effusion is silent and wants to stay there for some reason.
2. I need surgery to remove the rind.
3. Surgery is a typical surgery they have used on Lung Cancer patients & have been using more often on breast cancer, ovarian and lymphoma patients with mets.
4. Its Thorascopic, which means 2-3 small incisions in my left rib spaces with a camera to remove the rind.
5. Remove rind, hope lung re-expands, blow in some Talc to glue my lung pleura to the chest wall.
6. If rind is removed and lung doesn't expand, I get a small gravity catheter put in to drain the effusion until the lung naturally expands on its own. The tube stays anywhere between 2-6 weeks. My surgeon said once it was in for 5mo. I hope I am not with tube for 5mo, but considering how lucky I have been with retaining lymphatic fluid from major surgeries I am not ruling that out.
7. Oh and I have to WALK 30-40min times a day, but I cant drive for 2 weeks, so where the heck will I walk... oh my 0.25mile lap in my condo association 2000x. 

I could go on and on what this entails, but honestly do you even want to know? Probably not & I won't post the link about it, because unless you really want to see gross images of lungs getting peeled open then nope, not posting.

Am I OK? Yes, I am stable. My ca 15.3 (breast cancer cells in blood) dropped from 260 to 111.6. My cea (inflammation marker) (which my trial wants and every doctor despises because it is highly affected by LUNG and THYROID issues) tripled. Scans are Oct 1. I have a feeling they will be stable or maybe better if my lung is fixed by then. Otherwise the only evidence in them are bone spots, which on scans you cannot tell are active unless they grow, but if they are the same they can be dead or stable.

So goals are:
1. Clinical Trial keep killing cancer - done
2. Get Thyroid in Check - done
3. Fix Lung so I can further have no breathing issues
4. Keep eating healthy - yea i am doing that i guess

I have drawn a conclusion that I will be a new Avenger. I am going with Captain Marvel, because she has yet to be cast, so that is what I will become. Oh and I won't be blonde, so Marvel start making her brunette. No I do not want to be Wonder Woman, I want to be cast to be hanging out with Thor and Captain America. Come on Lung lets go... I have goals.


Monday, August 17, 2015

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.

Friday, May 8, 2015

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. 

Sunday, April 26, 2015

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