Bad and Good News

So I have been riding this good news that this oral chemotherapy, Xeloda, has been working about 10months.


Radiation worked really well and pretty much killed the rest of the cancer in my bones and also a rogue 2cm node in my chest wall. It also gave me 4more months on Xeloda, which I may not have gotten if I didn't opt for radiation.


Radiation left me with awesome side effects, mostly because my dumb butt kept taking my chemotherapy. I was apparently supposed to stop it. So I have had acid reflux and digestive issues, which are so awesome.... yep. It was well worth getting pain away and also zapping more small cancer lesions.


Life went on, markers dropped. Like I said good, but last month the markers began to creep up by 10pts and again this month by 10pts. Granted they are in the 60s and normal is 37. Last year my markers were in the upper 300s, had a 1/2 functioning left lung, and also had cancer pretty much in small spots everywhere.

Now I guess here is the kinda bad news, Xeloda is allowing cancer to grow, small, but its growing. I have two small spots on my left lung that grew from 2mm to 4mm and 5mm. That coupled with my markers rising, my doctor & myself felt it would be best to move onto a new drug.


It is not ideal, I really wanted no drama for once, but I guess I will not get that now or at least not yet. I am finishing out this chemo cycle tomorrow and start my two new drugs on Friday - Faslodex and Ibrance.


Ibrance and Faslodex are therapies that specifically target my dumb tumor. I have a genetic mutation called CCND1, which works with Ibrance. Faslodex is a shot (two large ones) that reduces the estrogen that is produced in my body. Here is some boring, but maybe helpful information on both drugs:

Faslodex (chemical name: fulvestrant) is approved by the U.S. Food and Drug Administration to treat postmenopausal women diagnosed with advanced (metastatic) hormone-receptor-positive breast cancer that has stopped responding to other hormonal therapy medicines, such as tamoxifen. Its two large shots in the butt. I go every two weeks and then monthly.


Faslodex is the only ERD available to treat breast cancer.: ERDs block the effects of estrogen in breast tissue by attaching to the estrogen receptors in breast cells, by reducing the number of estrogen receptors, and by changing the shape of the estrogen receptors so they don't work as well. It comes with all the side effects women get in menopause x10. I am used to this by now, so its no shock.

Ibrance - IBRANCE is an oral inhibitor of CDKs 4 and 6,1 which are key regulators of the cell cycle that trigger cellular progression.3,4 IBRANCE is indicated for the treatment of HR+, HER2- advanced or metastatic breast cancer in combination with letrozole as initial endocrine based therapy in postmenopausal women, or fulvestrant in women with disease progression following endocrine therapy.1 Its given in 125mg pills and if you get LOW WBC, they drop the dose to make sure your counts are OK.


Like every drug, you hear good and you hear bad. My doctor specializes in genetics and feels that people with my mutation get a good run on it. Especially since my cancer is now only in my lung region. Like I always ask, just keep me in your thoughts.


I also have been having a go fund me to help me pay for debt for my medical care. It has been six years of this and I am tired of playing the what credit card should I use so I can pay for my medical bills, treatments, and vitamins. I usually don't ask for help and try to do things on my own, but I figured I would give it a shot. It has been doing really well & I thank you all for that.


https://www.gofundme.com/2cxdds6s

More Radiation

So not looking forward to getting bone radiation close to 11mo after I finished my last round.

My doctor decided to send me to radiation to zap the cancer in my bones. The stuff has been there a year or so & is not going away like we would like. So I get to get zapped with radioactive waves in multiple spots for many days.

I
AM
NOT
LOOKING
FORWARD
TO
THIS
AT
ALL

I have been avoiding to much of anything since I learned and have been doing bare minimum. Yes, I work out 3x/week, but I usually for 6x. Yes, I showed up for work, but now I am out on medical leave again. This is the last place I expected to be after hearing that things were OK 3mo ago. Things are stable, but we are doing this to prevent potential progression and give me more time on Xeloda. That means that my time on xeloda is gonna probably not be as long as I hoped. Radiation may give me 3 or 6 mo on my current chemo, but it is no guarantee. this sucks.

Quick Update - Staying on Xeloda

Just an update:

CT Scans showed improvement in lungs and no more cancer in my liver. primary tumor shrunk significantly. Overall regression & stability. My markers keep dancing around in the 40-50 range. My doctor is going by the scans for now.

We also changed my Bone Mets Drug from Zometa to Xgeva. I am staying on Xeloda.

Xgeva is a simple infection given via needle. No more transfusions. Since my bone mets have only been stable while on the Zometa monthly, we decided to try a newer Bone Drug. Studies show they have the same result, but at this point I feel I also need a medication that treats the bone tumors better. I may get radiation on the spots if they are there in June at my next scan (as long as my markers don't fly high)

Drug type: 

Xgeva is a monoclonal antibody that works as a RANK ligand (RANKL) inhibitor.  This medication is classified as a "bone-modifying agent". (For more detail see "How denosumab works" section below).

What Xgeva is used for:

• Prevention of skeletal-related events (need for radiation, fracture due to cancer in the bone, surgery to the bone, or compression of the spinal cord) in patients with bone metastases from solid tumors. 
• Treatment of giant cell tumor of the bone.

SCANXITY

What is Scanxiety?? Well in summary I feel like this guy below:

Its the anxiety you feel when you know you are due for a PET/CT Scan. You feel it weeks before, days before, the day of and the day after. Its all consuming at times.

So that being said, that is how I will be feeling in the next 15 days. I can put on a good show. At work I may seem normal. With friends and family I put on a good "I am fine mask." Underneath it all is a girl screaming her head off and a complete anxious mess at home. I can find ways to cope, but underlying it all is this humming anxiety.

Horrible, absolutely horrible. Of course, I already have had anxiety since 9yr old... so lets layer that scanxiety on top of my already chemically imbalances head. Gonna be awesome...

That being have my first full scan on March 14 since September 29. I have gotten monthly chest X-rays up until January when my doctor & I decided to give my body a break from the radiation since my markers dropped drastically.

By the time I get my first real scan on Xeloda, I would be in my 6th month of Xeloda. The 6th month has been the primal time where my last two treatments failed me. My cancer "PTSD" acts up when I think about it. I am immensely worried that I may have progression and will get less and less time on each new drug.

Yes, this is also very possible, but it is sheer assumption, projection, and catastrophization. Lets look at the facts here: 1. my Tubey in my lung is gone, the fluid is so minimal now 2. I can run without wheezing for the first time in a a year. 3. I have 0 bone pain, which is not the norm. 4. My markers kept dropping then stabilized. My markers rose 2 points two weeks ago, but that could be stable for me.

Of course with any increase in markers or any minor ache, I do wonder is progression simmering and boiling its head to create more tumors in my young body. I wish I could say - "I am always hopeful."
Reality is, my hope comes in waves. I do truly feel grateful to be here still when many of my friends have now passed on. I am also hopeful that I would see a cure one day. I hope the more people know my story, the more people think or pray about me, and all that good karma will come and heal me.

This is the reality of my mind. A mind that was already predisposed to having fear and worry, now it is a reality I have to accept that worry and fear of cancer progression and even the D-word (death) could happen.

This is why I encourage people to share, read this story, and if you donate money think about where that money goes to. Choose to save lives. Enough of us people with cancer blog and write on Facebook these days that Education about Cancer and Prevention are no longer viable funding needs. We need a cure. I am not ready to accept that I will not make it past 5yrs with metastatic disease. I hope to prove the odds wrong.

Xeloda is Working!

Today's Update is brought to you by 6 giant horse pills I take daily - Xeloda. Dear chemo pills, Thank you for working on my cancer. I am finally feeling hopeful as my tumor markers continue to drop with each 21day cycle.

I hope this drug lasts a long time. It can always change, but for now my bets are on Xeloda.

Side effects are tolerable, because I know it is working. My feet are peeling and my fingers are sensitive to the touch. My stomach is constantly rumbling and fatigue is bad. I have been grateful that coffee, b-12 and a healthy diet have helped me stay alert.

Lets keep hoping my markers drop. My ca 15.3 is 56 & my cea us 47. This is the lowest they have ever been. I need my ca 15.3 to be under 35 and cea under 5. If I get that low... I might be NED! Lets hope for some time with no evidence of disease.

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.

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