Sunday, October 8, 2017

Grateful

Breast Cancer Awareness month leaves many people in the breast cancer community feeling sad and angry. They want more research dollars dedicated to the understanding of and drug development for stage IV disease. They want this group of people to not be alienated during all the early-stage hoopla that makes up the month of October. I want that too. Their anger is justified. People are dying.

While there is a place for anger about research and where the money goes during this month--or any other month--there is also a place for happiness. I see it on social media almost daily. People with late-stage disease are running marathons, traveling, spending time with family and friends, returning to work and living longer with a better quality of life than they--or me--ever thought possible all because of research.  I am one of the approximately 15 to 20% with advanced stage disease that will live five years--my first treatment at this stage was 4 years and 5 months ago. I feel like we must not forget to acknowledge that research is helping people every day. I am extremely grateful to every researcher, advocate, educator, clinical trial participant, doctor, nurse and anyone who donates or is involved in fundraising of any kind--every single dollar counts. If not for those people, I would not be able to do this.




My situation can change at any time, and I don't always feel as good as I did on this day, but I am grateful for every single day. 

Friday, October 6, 2017

I Think I Need an Editor

I need to apologize to anyone who reads my blog. So here it is: I am sorry.

I am sorry because for some reason I thought when I began this blog in August of 2013 that in time my writing mistakes would lessen. That my struggle to write something free of little words sitting there adding no meaning to a sentence; free of words sitting in an order that seem randomly placed like they were shuffled somehow after leaving my brain causing the reader to ask, What? I don't get it, would stop. It hasn't.

How wrong I was that it would get easier. The mistakes in my last post are proof of that. How do mistakes stare at me but I not at them?

Maybe I should try the writing tricks my daughters suggested long ago: change the font; read each sentence starting at the end.

I am embarrassed that it happens. It is simply maddening and even humiliating because I try so hard to eliminate these easily fixed writing flaws leaving me cringing once I find them.

I won't take offense if you mention to me that you see something that needs my attention in any future posts. Matter-o-fact, I would appreciate it.



Sunday, October 1, 2017

A Hashtag for Research

A new hashtag keeps meeting my eyes while I stumble around social media trying to keep up with the news in our world. The hashtag of which I am referring to is: #kissthis4mbc. I have been struggling with it. Struggling to figure out if this is a good idea or another feel-good marketing tactic. I wonder: will this actually help the metastatic breast cancer community?

On Facebook, Twitter and Instagram, the #kissthis4mbc social media campaign was launched to raise money for metastatic breast cancer research. Find information about it here and here .

That’s good, right? 

It began on September 15th, and is sponsored by one of the largest pharmaceutical companies in the world, Novartis. This Switzerland based company conducts cancer research, sells and manufactures many drugs including a few breast cancer drugs: Femera (letrozole) and Affinitor (everolimus) that helps estrogen positive patients in controlling their disease as well as Zometa (zoledronic acid) for strengthening bones when disease settles there.

The fundraising plan is simple. Novartis will give $10.00 for each selfie posted on social media with the hashtag, #kissthis4mbc @Novartis; you don’t have to have cancer to participate. The goal is to reach a minimum of $200,000. All monies raised will be given to two organizations that only fund metastatic research, METAvivor and the Metastatic Breast Cancer Network (MBCN).

Sounds nice, right? Yes! Yes, it does.

Except . . . when I first saw “kissthis4mbc” on my Twitter feed, my initial reaction was: this doesn’t speak to me. The telling of metastatic breast cancer to “kiss this” I thought was targeting the young selfie-picture taking people with puckered lips motivated by girl power. That is not me. I am 52 and more of a “#dontignorestageIV” kind of person. I thought of it as another silly chain type activity avoiding the seriousness of this condition by over-shadowing it with “bad assery”. In the world of stage IV, bad asses kicking butt and taking names signifies a “gonna beat this” attitude which crosses the line into the false realm that someone can stop cancer just by being a bad ass. When said with such certainty I get annoyed because the one thing people need to know about stage IV is that it kills. No amount of “bad assery” will ever be enough to stop stage IV breast cancer.

At this point in my thinking, I had decided not to participate. Especially since I felt this selfie-taking in the name of “kiss this” had returned us yet again to the trivialization of this disease making it seem easy to overcome. Puckering up for funds brings all the cuteness back into a very un-cute disease. Why can’t anger fuel the fire to donate? Why can’t sadness be the driver behind people wanting to save others? It can, but the reality is no one wants to see an emaciated body ravaged by cancer because it is horrifying. Seeing young, middle aged and older women with smiling faces are definitely nicer to look at. 

Additionally . . .

It wasn’t only the hashtag that was causing me to have problems with this campaign. I wanted to know why Novartis would want to donate $10 for every selfie posted with that hashtag on Facebook, Twitter and Instagram. Their fundraising goal of $200,000 is not anywhere close to the money needed for real advancement in metastatic disease. The real get out of the petri-dish and onto the final stages of a clinical trial proving efficacy can cost millions, even billions. I couldn’t rationalize in my mind why Novartis did not want to keep the money in-house for their own research. After all, from what I can find on their website, they are involved in many areas of cancer research including late stage breast cancers.

This hashtag campaign was looking like a feel good marketing plan done to spur a positive vibe for Novartis. Plus, the actor, producer, and now breast cancer activist Eva Longoria, the spokesperson for this campaign—who I had never heard of--would gain some good publicity for herself as well. 

Self-promotion isn’t a bad thing. Most people and corporations must do it to stay popular. But done for the sole purpose of "look at us, we are great" bothers me. Novartis is most certainly promoting themselves in a positive way, but they are also planning to give the money raised to METAvivor and the Metastatic Breast Cancer Network . These organizations are committed to metastatic research, so a contribution to them is always a good thing. But, I wondered if this is the best way for Novartis to spend its money. Metastatic research is enormously expensive. METAvivor and the Metastatic Breast Cancer Network are small organizations. They cannot give as much money to researchers the way that Novartis can give to their research teams. I questioned whether dividing up the $200,000 between these two entities really would make an impact in the stage 4 breast cancer world.  

All these questions swirling in my head brought me back to the year 2014 when I was in full-on research mode and wondering why advocates for stage IV disease were disgruntled by the Susan G. Komen organization. I learned the United States government’s National Institutes of Health and the Department of Defense’s cancer program gave enormous sums of money to researchers and laboratories in the millions of dollars. As I studied Komen’s website and the US government's involvement in cancer research the take away I gained from that investment of my time was Komen's main focus was on awareness, prevention and early stage detection while the US government handled the big extremely expensive stuff. I concluded that organizations like Komen and others provide help to small researchers and laboratories who are not able to secure those large dollar grants from the government. As these smaller laboratories do small-scale research, kept alive by these non-profits, they may eventually be able to compete and receive those enormous grants available through the government resulting in their research producing important knowledge that benefits the entire breast cancer community. Because of that despite my angst concerning breast cancer fundraising demanding that a fun-time-for-all must be had, and after the battle bots in my brain had returned to their corners, I began to change my thinking. I decided I could support the hashtag selfie-posting campaign.

I still dislike the hashtag. I do, however, want METAvivor and the Metastatic Breast Cancer Network to be able to grant a few more researchers money for their small projects. And, maybe one day the words “kiss this” said while a particular drug(s) chases the cancer in a patient’s body will destroy their cancer with the “bad assery” power of those two four-letter words and end this disease. 

Here is my selfie so funds from Novartis will go to METAvivor and the MBCN. Will you help too?

My tweet @LisaAdamsThomp4.


Monday, September 25, 2017

Count Me In!


I first learned of the Metastatic Breast Cancer Project in October of 2015. Last month I decided to complete their questionnaire to determine if I was eligible for their current study. Turns out, since my cancer has responded to a particular therapy for an extended period--at least I think this is why--I was accepted. The study is not intended to help me live longer, but to help those that follow me.

A year after its 2014 inception, the Metastatic Breast Cancer Project began collecting metastatic breast cancer patients’ DNA from across the United States of America. The project’s goal is to find understanding of the cellular complexities of metastatic breast cancer and to compile all the information gathered into one data base for all cancer researchers and the National Institutes of Health personnel to use in the understanding and in the advancement of treating this complex disease.

The Broad Institute of MIT and Harvard are funding and housing the research. Dana-Farber Cancer Institute and several advocacy groups are collaborating with this project. (Advocacy groups: MBC Alliance, MBCNetwork, Avon Association, LBBC Living Beyond BC, Young Survival Coalition, Inflammatory BC research Foundation, Share 40, the Male BC Coalition, Theresa’s Research Foundation, Triple Negative BC Foundation, IBC, A4BC, Metavivor, Metup, Tigerlilly foundation, Susan Komen, BCRF, Dr. Susan Love Research Foundation, BCSM, Hope Scarves)
 

The leader of this project are Nikhil Wagle, MD and the director is Corrie Painter, PhD.

If you are a metastatic breast cancer patient, you can go to the project’s website where you will be asked to fill out a questionnaire, MBC Project. From there—if you are eligible for the current study—you will be asked to give permission for the research team to collect your medical records and tumor samples—the DNA from those samples will be sequenced. Next a saliva kit will be sent to your home. You mail it back to them and the research team will capture the normal cells from this sample and conduct DNA sequencing on those cells. The researchers involved are hoping to discover specific DNA changes (mutations—alterations, deletions) and germline information (inherited) that are involved in metastases in hopes of leading to a better understanding of the disease variations so better treatments can be developed allowing for better control of this disease bringing longer lives to those affected.

Here is what you will find in your kit. The hardest part for me was producing the saliva which goes into a small tube and once closed mixes with a solution.
It took some effort but in 30 minutes my tube was shaken and packed into its box ready to be mailed.



The first set of patients to be studied are those presenting with de novo (stage IV at initial diagnosis) and extraordinary responders (those who have responded to a treatment for a longer than expected period of time—2 years + on one drug). Future studies will include young metastatic patients and those patients who do not respond to treatments (drug-resistant). 

If you have metastatic breast cancer and complete the first 16 questions about your cancer and the treatments you have received, you will get updates about the research as new information is found. And, if you are not eligible for the current studies, as the research expands you may be included in future studies.

Update:  My insurance denial has been overturned. Tomorrow I will receive my 57th infusion of TDM-1!

Wednesday, September 13, 2017

DENIED





When I was diagnosed with metastatic disease in 2013, my most significant worry was about progression of disease and the end of my life. Today, and over the last several years, I am living with stable disease. That stability has given me time to worry about those issues while also worrying about others as well. One of those “others” is my health insurance coverage.

The topic of healthcare and health insurance for Americans is a topic I wish I could avoid. It is a daunting subject of study full of political rock throwing and posturing done to persuade people that a certain plan will be best for a country with 324 million people. Getting as many people as possible to pay for an insurance plan allows for larger sums of money to be placed into a figurative pot that then can be used for those hopefully fewer members of that pot who are in need--that part is easy enough to understand. But the details of how it should be implemented, who the money should be distributed to, what dollar figure for premiums is actually affordable for the largest number of people, how to fund those that cannot contribute, and what health conditions and medicines insurance companies should cover makes for a complicated mess that is not easily agreed upon. 

The way I see it, conversations concerning healthcare and health insurance must not neglect how government agencies and private insurance companies will manage paying for every desire that people have in terms of the prevention and the treatment of illnesses. The main obstacle for everyone getting what they want from any system is money; it is finite. I wish there was an unlimited amount of it, but there is not. Because of that fact the inevitable yes's and the no's in the care of an individual's health are unavoidable. No matter how hard we wish it were so and no matter how much each of us may want to help the sick and want the government and insurance companies to pay for every person's illnesses endlessly simply isn't possible. Decisions to treat or not to treat happen every day. So, in determining where best to spend the available funds means that someone somewhere will be left with nothing but hope. Hope doesn’t have any purchasing power. That someone could be me. 

This post, though, isn't about the big picture of health insurance and healthcare in America. It is about my experience in it so far.

My health insurance is purchased through my husband’s employer. Every year his company negotiates a new contract with Blue Cross Blue Shield of North Carolina. So far, the changes have been minimal. The deductible has remained high causing financial woes for my family, but the benefits package has remained the same allowing me to receive the necessary drugs, surgeries, scans, genetic testing, and radiation needed to keep me alive. For that I am extremely grateful. With every change, I worry that a denial of coverage for some aspect or all of my treatment will come my way. On Friday, my worry became reality.

I received a large white envelope, and in that envelope I found words. Words that others have faced, but I had not until that day. There, throughout the first two pages, I read “. . . notice of an adverse benefit determination . . . declined to provide benefits . . . ”  I found that someone in the medical review department of my insurance company decided my current treatment drug “does not meet the definition of Medical Necessity found in the member’s benefit booklet.” Wow, so many words when one was all that was needed. The ugly one. The big, black, bold lettered one saying—

 DENIED!


And, I must let it be known, the denial is for a treatment that I have already had. That makes sense, right?

I knew what was coming as I read, but with all those extra words, for one hot second I thought maybe this wasn’t a denial notice. Yet, it was.  

Page two read with more words of denial: “. . . coverage of ado-tratuzumab emtansine (Kadcyla) is denied.” Further down, I read, “ado-tratuzumab emtansine is considered investigational when coverage criteria are not met.  . . . found insufficient peer-reviewed medical literature to show a beneficial effect on health outcomes compared to established alternatives. The member’s policy does not cover investigational services.”

Investigational? Kadcyla? What are they talking about? I have been on this drug for 3 years and 3 months.

I soon sent a message to the nurse navigator who works with me at the hospital where I receive treatment. She responded by letting me know she was contacting the people who will help me tackle this problem and get it appealed. Surprisingly, I felt calm that day believing the denial would be reversed. But, today, the heaviness I am feeling inside my chest caused by this denial further reinforces my ongoing fear that at any time when it comes to my treatment, someone will always be making decisions about it. Decisions about whether money should be spent on me or someone else.

How hard it is for me to accept that my existence is controlled by a disease and by the decisions of everyone connected to me. I mourn those lost days of which I believed I was in control of my living and my dying--oh, how naive. 

Until this issue is resolved, my treatment #57 of Kadcyla (TDM-1) has been put on hold. 

Breathe . . . I just need to . . .

Breathe.


Monday, August 21, 2017

Health Update with Genetic Testing Results

My genetic testing reveals no inherited mutations, deletions or alterations to BRCA 1, BRCA 2, or the PALB2 genes—yea!

However, I do have a misspelling of another gene possibly playing a role in colon cancer. At this time it is considered a variant with unknown significance. As time moves along and more people are tested, this variant may reveal a trend moving toward or away from its importance in causing colon cancer. For now, there is no need for me or my children to worry about it. (I already get CT scans as screening.) For my two sisters, it was recommended they have genetic testing or at least have a colonoscopy. (The prep for that is most unpleasant.) 

This Sunday, I will have treatment #56 of TDM-1 (Kadcyla). In May of this year, it was my three year anniversary of my relationship with this drug. I am always grateful to be able to have treatment and even more grateful that this treatment has continued to work for me, but I must confess I am feeling tired these days. And, although it can be quite funny sometimes, I have trouble finding the right words when I talk or worse say the wrong word and not realize it. I will blame it all on my treatments for now—though I have no evidence to support its effect on my brain. Other than that, life is pretty darn great.

Note:
"Lynch syndrome is an inherited condition that increases your risk of colon cancer and other cancers. Lynch syndrome has historically been known as hereditary nonpolyposis colorectal cancer (HNPCC)." see here .

Thursday, July 20, 2017

Genetics--BRCA 1 and 2 plus PALB2

Please consider: If you or your child has not been diagnosed with cancer and feel you are at risk for any cancers because of family history, DO purchase life insurance before pursuing care for a potential diagnosis and before any genetic testing that could lead to a positive result if it would be helpful to your family. Positive results may inhibit your ability to get life insurance.

I met with a genetic counselor on 7-17-17. Our conversation was informative causing me to have one of those “what if” moments. When I was in college in the 80’s, I entertained the idea of pursuing genetic counseling as a career, but in the end did not. To this day, I continue to find genetics fascinating. This post is my attempt to simplify a very complicated genetic condition found in some breast cancers. If you have any questions about the BRCA 1 and 2 genes, please speak to a geneticist for clarification.



All cancers are genetic, but not all cancers are inherited from a person’s parents. Hereditary cancers make up around 10% of all breast cancers. The other 90%, as far as scientists know presently, are random mutations or possibly caused by certain environmental exposures.

In each of us, our cells hold the code that make us who we are. This code is called our DNA. In it are 46 chromosomes—23 from our mother, 23 from our father. Within each chromosome are different numbers of genes. Chromosome #1, for example, is large and has approximately 2,000 genes. Each gene holds instructions to create proteins that tell cells what to do.

In breast cancer, two inheritable genes were discovered in the 1990’s—BRCA 1 & 2; BRCA stands for BReast CAncer. More recently, geneticists found another gene called PALB2—Partner And Localizer Breast cancer 2. It partners with the BRCA2 genes. A person who has a mutation on any of these genes—inherited or not—has a higher risk of having breast cancer.

BRCA 1 and 2 are tumor suppressor genes and their particular proteins handle the DNA repair which work to stop cells from becoming cancerous. These two important genes when working properly monitor DNA mutations throughout the various phases of a cell’s life.

The PALB2 gene affects how the BRCA2 gene works. Sometimes, the BRCA2 gene will have NO deletions or alterations, but there is an alteration or deletion of the PALB2. This can shut down the BRCA2 gene’s efforts in preventing a cancerous cell from developing. Once that cell becomes cancerous the damaged PALB2 gene allows for the continued replication of the mutation because it is no longer working with the BRCA2 gene. That is why drugs for this problem are called inhibitors; in this case PARP inhibitors. Those drugs stop the PALB2’s influence on the undamaged BRCA2 gene so it can once again do its job of stopping cancer. 

During my meeting with the genetic counselor, she drew a picture showing how the BRCA 1 and 2 genes work in breast cancer.

Here it is:

This is my understanding of what she explained to me concerning these genes:

We inherit two BRCA1 genes and two BRCA2 genes; one of each from our parents. (The picture shows 2 copies of either the BRCA 1 or 2, and this simple drawing demonstrates two situations that can occur. The small x’s represent alterations or deletions of these genes.)

When we inherit two perfect copies of the BRCA 1 and 2 genes—as the upper part of the drawing depicts—any future breast cancer would not be caused because of an inherited altered gene.

Though a person did not inherit a damaged gene, sometimes a mutation can occur in one of the paired genes in our 30s or 40s. As long as its partner gene is still working, no breast cancer will arise from this mutation. But if the partner to the pair becomes defective during a person’s lifetime, breast cancer can appear in a person around their 70’s or 80’s.

If we inherit one defective BRCA 1 or 2 gene—shown at the bottom of the picture—the other paired gene could become mutated in our youth, causing breast cancer to arise in a person’s 30’s or 40’s. The risk of breast cancer is increased but does not mean it will occur.

If we inherit two altered or defective genes in either the BRCA 1 or 2 pairings, there is an even greater chance that breast cancer will arise.

In 2005, I had testing for the BRCA 1 & 2. My result was negative. Today that testing is considered incomplete.

Monday of this week, the genetic counselor and I reviewed my, and my family’s, medical history to see if further testing would offer helpful health information for me and my children—I have three daughters and one son—sons are less likely to have the disease than daughters, but their risk is not 0%. For your information, here are the family relations and my history that made me a candidate.


In women, breast cancer has been linked to certain ovarian, melanomas, and pancreatic cancer with ovarian cancer being the most often diagnosed disease. For men, prostate cancer becomes a possibility.      

Since my mother had ovarian cancer at age 35, and I was diagnosed with breast cancer at age 41, our young ages turned on alarm bells to pursue further testing. My mother’s ovarian cancer could be related to her mother’s uterine cancer. However, my cancer is most likely not linked to my grandmother’s uterine cancer but could be linked to my mother’s ovarian cancer. So, there are two reasons to proceed with further testing on me especially now that testing can find that third defective gene.

Confused? I hope not. But, if you are keep in mind, genetics is complicated.

Inheritable genes can come down on the father’s side as well. In my case the diseases that people have had on that side of my family do not indicate any possible inherited gene related to my breast cancer. For me my mother’s side holds the only possible connection to an inherited condition.

Since every cell has the same DNA, testing for a genetic link to my cancer can be done by sequencing the genes in my blood cells. Before my infusion on Monday—infusion #54 of Kadcyla (TDM-1)—two vials of blood were filled to be sent to a lab for testing. 

In my case the geneticists will be looking at 19 genes that could have played a role in my breast cancer. The only one that could be targeted for treatment currently is the PALB2 where a PARP inhibitor could possibly be used in my treatment plan.

Because the likely hood of inheriting a defective BRCA gene is low, most results from this type of testing are negative. Positive results are small and results of unknown variants are small as well. An unknown variant result means no one knows if that information has any significance to a person’s diagnosis of cancer. It could be important in the future, especially to offspring, but for now it is filed away to be brought forth if it shows up again in another person’s DNA sequencing.

The geneticists that accompanied the counselor explained to me the company Invitae that will be handling my genetic test believes in making data accessible to all researchers. This allows all research facilities to work together to determine if any variants found might in the future be connected to breast cancer. The geneticist made a great case for why data sharing is important among scientists as opposed to companies keeping data in silos making any data inaccessible to other scientists as well as to patients. Hiding the information slows down progress and hurts current and future patients.

I will have the results in three to four weeks and will provide an update then.

I must say, this waiting is far easier than the waiting for the results of a scan.

Sources:   

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063418/
http://www.breastcancer.org/research-news/abnormal-palb2-gene-increases-risk
http://www.cancer.net/navigating-cancer-care/cancer-basics/genetics/genetics-cancer
http://www.medicaldaily.com/first-brca-targeted-drug-shows-early-promise-biomarin-jumping-phase-iii-trials-246438 
http://cisncancer.org/research/what_we_know/advances/oncogenes.html
https://en.wikipedia.org/wiki/BRCA1