Category Archives: advocate

One More Fun, Fun Opportunity Came My Way

Imagine my surprise when I got a call on Friday from the American Lung Association asking if I would be available to interview with NBC Nightly News about my journey with lung cancer and immunotherapy. Oh my goodness!!! They apologized because it was short notice … and I was thinking, “Who cares??? Thank you, thank you, thank you for the opportunity!!!”

I spoke with the person who was going to be putting the story together on Friday. There was a caveat. The spot might or might not make it. And, we wouldn’t know until Sunday night or Monday morning. And, the interview needed to take place on Monday morning!

Lucky for me, the appointment for my first-ever monthly immunotherapy infusion was set for 3 PM on Monday, the latest it has ever been scheduled. That gave me enough time to do the interview and still make it to my appointment.

I’m not a housekeeper. I wish I was, but I’m just not. I get really tired when I think about pushing around the vacuum cleaner or finding spots for all of the stuff we seem to collect. (Keep in mind, that fatigue lifts immediately if someone offers the opportunity to do something I think is fun…) So, when the call came early Monday morning that the show would go on, I had to scurry, scurry to get at least one room of the house clean enough to be on NBC Nightly News!!

While I was getting ready for the interview, I received an email from another person at NBC News. She wanted to know if I could do a phone interview with her for a piece she was writing for their Web site. Wow! Well, yes!!! I will definitely find the time for that!! It is an advocate’s dream to reach as large an audience as possible with our stories!

setting up the cameras for filming

I had barely hung up the phone when the person arrived to tape my interview for the news. My part was taped at my house, but I was interviewed by people in Washington, DC. That was interesting to do because I couldn’t see their faces so I wasn’t sure if I was answering the questions like they expected or if I had said enough or too much … I was honestly surprised at the clips they chose to use in the story because those were some where I thought I might not be responding as they would have expected.

It takes a long time to get a minute’s worth of video for something!! The guy who did the filming … I’m not sure what his title would be … arrived at 10 AM. He was still uploading footage to NBC at 1:30 PM. I had to tell him we had to leave because we hadn’t had anything to eat yet and I had to be at UTSW for an infusion by 3. It takes an hour to get there, so we were pushed for time!

I so wanted to be home in time to see the NBC Nightly News, but it was not to be. Things moved like molasses at the infusion center. It took longer for my bloodwork to be processed and then it took awhile for my Opdivo to get ready. I was still sitting in the infusion chair when the 5:30 Nightly News came on.

I’ve never done it before and might not have done it if I wasn’t the last person in the infusion center, but I asked if they would change the channel to the news so I could watch. I don’t think they believed me when I said I was going to be on it.

It started out showing me with my dogs. How appropriate!!! My dogs are a big, big part of my life. I thought it was awesome that they included them in the news piece!

One other thing before I have to run and get ready for a fun day photographing bluebonnets with a friend who in Texas from Florida – it has been so much fun hearing from people from all across the US who saw the news report and wrote to me. I have sure enjoyed getting in touch!!

So, without further adieu, here is the news article that Maggie Fox wrote. Embedded in it is a link to the news story.

https://www.nbcnews.com/health/health-news/immunotherapy-transforms-lung-cancer-biggest-cancer-killer-n866356

 

 

 

 

Making a Difference

I had the most disconcerting dreams last night or early this morning. I dreamed first that I was on some sort of gas-powered bicycle (it looked like a regular racing bike in my dream). I stopped at a gas station to buy a dollar or two of gas, which was all it took, and decided, right then and there, that I was going to begin to bicycle across America to bring attention to the sad facts about lung cancer:

  • #433aDay die from it – that’s 155,000+ per year
  • While it kills more people each year than breast+prostate+pancreas+colon cancers combined, it gets less attention, certainly less than breast and/or prostate
  • Women need to stop fearing breast cancer like they do and start looking beneath that fatty tissue to their lungs. Lung cancer kills nearly twice as many women each year as breast cancer. (Breast cancer screening is vitally important. I don’t mean to imply otherwise.)
  • The amount of federal funding relegated to finding a cure or at least new treatments to prolong the lives of those with lung cancer is far, far less than that received by other cancer based on funding per life lost.
  • Anyone … ANYONE … with lungs is susceptible to being diagnosed with lung cancer. It is not a smoker’s disease. It is a breather’s disease.

In my dream, while at the gas station, I started trying to figure out how my ride was going to work. Where would I sleep? How would I advertise the facts I wantedpeople to know? What would happen when my tires blew out? How would I carry spares and how would I fix the bike? When would I eat? Just how would this ride across America work? Where would I get my cancer treatments? I surely could not complete this jaunt in one month, between my treatments.

Bluebonnets

You have to realize how idiotic this dream is. I haven’t been on a real bicycle in 30 years or more. I am 64 years old, with stage 4 lung cancer. I have been working out a bit most every week since the first of the year, but certainly, nowhere near enough to ride a bicycle across America, not even some rigged up gas-powered bicycle.

So, in my dream, I decided I wouldn’t ride the bicycle after all. Nope. I have two good legs. I would walk. I had a big, floppy felt hat. I was good to go. But, again, the questions arose: where would I sleep? How far could I walk each day? What would happen when my shoes wore out? Am I strong enough to carry a backpack for a mile, much less thousands of miles? (The answer to that is no!)

Okay … walking and bicycling, even in my dream, really didn’t make any sense at all. But, I was still left pondering how I, as one person, can make a difference, can bring attention to this terrible disease that isn’t, but should be, an outrage and embarrassment in America?

Still, I thought, how neat it would be to take a foot-trip across this Nation, camera and notepad in tow. Every day, I would take pictures and write blogs about what I saw, how I felt. And, people passing me on the highways and byways of this great land would come to know my story … and far more importantly, the story of every lung cancer patient, past, present, and future. Finally, perhaps news channels would begin to follow my journey and suddenly maybe the public would start to be educated about this killer that’s unfairly tagged the smoker’s disease.

Maybe serious conversations would finally start to take place. Maybe.

To borrow the title of one of my favorite songs:

hope

Hope

 

I can only imagine.

 

Are We Wasting Time Appealing to Congress?

I write to Congress fairly often in hopes of convincing them to throw more support toward lung cancer research. But, I wonder if my time wouldn’t be better spent writing to the National Institutes of Health (NIH) and/or the Centers for Disease Control and Prevention (CDC)?

Here’s why I ask. I received a response to one of my letters from my senator, John Cornyn, that actually included some potentially valuable information. He wrote,

As you know, entities such as the National Institutes of Health and the Centers for Disease Control and Prevention are charged with allocating federal research dollars toward research and initiatives that will advance prevention and successfully treat diseases and health conditions. I believe Congress plays an important role in overseeing the distribution of these monies and must ensure they are wisely spent.¹(emphasis mine)

Should we not then be concentrating some of our efforts to advocating the CDC and the NIH to allocate more of the research dollars they receive to lung cancer? I mean, I know we need to talk to Congress about budgeting the dollars for NIH or CDC, but once there, I am not sure their researchers feel a real need to fund lung cancer.

I base my theory, in part, on a statement made by the NIH to Cure Magazine in August 2017. I was angry and incredulous when I read:

According to the National Institutes of Health, lung cancer received about $250 million in recent years in research funding annually, and it claimed 25 percent of all cancer deaths. That means that about $1,700 is spent for every person who dies each year from lung cancer. That spending rate is much higher for other forms of cancer.

Leukemia receives about $240 million a year and accounts for about 4 percent of cancer deaths. That means almost $10,000 is spent for every person who dies of leukemia. For breast cancer, that number is about $13,000.

The NIH states that funding is provided to research based on its scientific merits, not the type of cancer it targets. (emphasis mine)²

Lung cancer kills more people than the next three biggest cancer killers combined: prostate, breast, and colon. The NIH surely sees breast cancer as a worthy cause to fund. Are the researchers seeking funds that target breast cancer that much better grant writers or trial designers than those seeking money for lung cancer research? I sincerely doubt it.


If you wish to make your voice heard by the NIH, contact information for the Director  is:

Francis S. Collins, MD, PhD
BG 1 RM 118A
1 Center Dr
Bethesda, MD 20814
francis.collins@nih.gov
301-496-2433

You can contact the CDC at:

Anne Schuchat, MD, Acting Director
Centers for Disease Control and Prevention
1600 Clifton Road
Atlanta, GA 30329-4027

The National Cancer Institute’s contact information is:

  1. 1-800-4-CANCER (telephone answered weekdays from 9 AM until 9 PM ET)
  2. LiveHelp Online Chat, LiveHelp (M-F, 9AM – 9PM ET)
  3. Email

Mr. Cornyn further advised me that he does not sit on the Senate Appropriations Committee so has little jurisdiction over how the annual appropriations bill will be allocated.

So, I guess my next question is to you. Does your senator sit on the Appropriations Committee? Please click on the link and send your Senator a letter if he or she is on the committee.

 

 


¹Letter from John Cornyn to Donna Fernandez (donna@hopeandsurvive.com), dated 02/09/2018

²T Keenan. “The American Lung Association Seeks to End Stigma.”  Cure Magazine. August 11, 2017. https://www.curetoday.com/articles/the-american-lung-association-seeks-to-end-stigma. Accessed 3/4/2018

 

We Can I Can

Today is World Cancer Day. I meant to get my picture taken holding up a “We Can I Can” sign to share on LungCancer.net … but I didn’t get it done. Maybe I will get it done before today is out and will post it here…

According to the American Cancer Society, a total of 1,688,780 of us were diagnosed with cancer in 2017. Of those, 135,430 were diagnosed with colon/rectal cancer (this is largely preventable – get those colonoscopies!!!!!), 222,500 will be diagnosed with lung/bronchus cancer, 252,710 females will be diagnosed with breast cancer (it is rare, but men can also be diagnosed with breast cancer), and 161,360 men will be diagnosed with prostate cancer. (https://www.cancer.org/…/estimated-new-cases-for-the-four-m…)

“So? What does this mean to me?,” you ask.

Well, here’s the deal … We Can and I Can … or more like I Can and We Can make a difference … because I can contribute, but my contributions are small. Our family doesn’t have much money these days. I have more time than money but even time is somewhat limited. So, I can do a small part in volunteering and in contributing money … but all alone, my contribution won’t make much difference at all.

BUT, what WE CAN do together …

Sit and imagine it. Just for a minute. 30 seconds. If every single one of us reached into our pockets and pulled out a five dollar bill or $10, it truly wouldn’t hurt most of us much. Many of us would never realize it was missing from our pocket.

But, if we all took that small amount of money and contributed it to a cancer organization today, the impact would be earth-shattering.  Naturally, I hope that the contribution would go to a lung cancer organization, but everyone has their favorite cancer charity … and impacting cancer is the theme of today.

How many of you played agility today? What did a single run cost? How long did that run last? Have enough money to play a game but not enough to donate? All I can say is that I hope you never get those dreaded words from your doctor, “You have cancer.” or hear them from someone you love, “I have cancer.”

How many of you stopped by Starbucks for a coffee today? How much was that coffee? How many lattes would you have to give up to find $10 to donate?

My finances suck these days, but I can tell you that I can find $10 to donate and I won’t even actually miss it much. Maybe I will have to cook one more meal at home or eat a sandwich or something, but I can come up with $10. I suspect that 99% of my friends can, too.

A small contribution by all of us = a huge difference

A few dollars donated by each of us = millions (billions) for cancer research

So, let’s play “We Can, I Can”

  • I can donate $10. We can save thousands of lives by supporting cancer research.
  • I can write a blog. We can share the message. Let people know that they need early screening, colonoscopies, mammograms … Find that cancer early and it is almost always curable.
  • I can beg for $10. We can all ask everyone we know to contribute a small amount of money and our research organizations will be scrambling to find places to use it all!!! What a picture!!!
  • I can share a link: http://yourcancergameplan.com. We can click on it, pick a cancer charity to receive $5 (out of someone else’s pocket), and share it with our friends on Facebook and Twitter (through March 1, 2018). (Get your cancer game plan at the same time. The life you save may be your own.)
  • I can make a small difference. Together WE CAN change the face of cancer. How about that??!!

What’s holding you back? Please, write that check. Or, heck, put it on your credit card. $10. Not going to break the vast majority of us. Most of us won’t even know we’re missing it. (And, if you’re SO strapped for money, think about one little thing you can do without for one little week in order to help get researchers the money they need to help keep those of us with cancer and those yet to get cancer alive!!!)

Thanks in advance for your generosity.

(Keep in mind that just because you didn’t see this ON World Cancer Day, your $10 (or however much you can donate) will still make a BIG difference any time you send it.)

(Some of my favorite charities are American Lung Association, Bonnie J Addario Lung Cancer Foundation, Lung Cancer Research Foundation (formerly Free to Breathe), LUNGevity, Cancer Research Institute, Cancer Support Communities … There are more. These are the ones I can think of off the top of my head. Please always use CharityNavigator prior to donating. Make sure that the dollars you give are actually going toward program costs!! Too many well-known charities seem to be in business for themselves more than for the cause they are supposed to benefit.)

If I Don’t Do It, Who Will?

Just this morning, I heard about a 29-year old man who has been diagnosed with lung cancer who wants to raise awareness about the disease by having his state offer specialized “beat lung cancer” license tags. Stephen Huff is among a growing number of young adults who are being diagnosed with late-stage lung cancer. They never smoked. They were active. They were healthy. They’re young. And, yet, they are fighting the most deadly cancer there is.

It used to be that when you thought of lung cancer, your mind’s eye saw a wrinkled old man with a half-burned, long-ash cigarette hanging out of his mouth or an elderly woman holding a burning cigarette in her tobacco-stained fingers. You hear hacking and coughing and have a generally negative attitude about the whole person/disease/addiction.

The picture of what lung cancer looks and sounds like needs to change and it needs to change NOW. In today’s world, your mind would be just as accurate if it saw a virile, 20-something with a racing bib on. Or, a 40-year-old mom cheering on her son’s soccer team. Or, your next door neighbor who never smoked and was never around cigarette smoke. Or you.

Smoking is still the number one cause of lung cancer, but every year, more and more nonsmokers are being diagnosed with lung cancer. Especially for nonsmokers, the disease is usually not diagnosed until it is stage III or IV since no one, not the patient, not the doctor, suspects lung cancer as the cause of symptoms until every other possible option has been exhausted at least once.

And, as an aside, even IF the person diagnosed with cancer is or was addicted to tobacco, do they really deserve to die? In today’s world of acceptance (gays, transgenders, races, nationalities, religions, the list goes on and on), we do not, DO NOT, accept smokers. Whether conscious or not, we as a society are perfectly willing for those evil smokers to fight and die from lung cancer because somehow they deserve what they got. Individuals, companies, and government agencies all withhold their money from lung cancer research because, however wrong, they believe it is a cause that does not deserve support.

Stepping back off of that soapbox, I’ll climb onto another …

Mr. Huff, the young man recently diagnosed with stage IV nonsmall cell lung cancer, is asking his state legislators to offer lung cancer awareness license plates. The plates will cost taxpayers an additional $55. Half of those funds would be sent to his chosen charity to help pay for more research. At this point, he doesn’t think raising money will help save his own life, but he is adamant that more funding for research will save lives in the future.

I agree that it is crucial to get more funding in the hands of researchers. When I look at the tremendous progress that has been made already, despite every possible financial obstacle being thrown in the way, my mind can’t comprehend what scientists could accomplish with adequate funding. According to LUNGevity, only six percent of federal dollars devoted to cancer research goes to lung cancer research. How does this add up? The most deadly cancer gets the least amount of funding? Boy! Some stigmas die hard, do they not?

Let’s put the disparity in funding into hard, cold facts:

During his interview, Mr. Huff was asked why he was trying to get the state to issue license tags supporting lung cancer research. His response is one I hope we all will consider,

“If I don’t do it, who will?”

 

 

FIVE YEARS!!!! Yes!!!! FIVE YEARS!!!!

You guys!!! This girl just passed her FIVE YEAR cancerversary!!!

When I was diagnosed back in 2012, my first oncologist thought I might live four months. And, yet I recently celebrated FIVE years of life after diagnosis!!!

Donna, December 20, 2017

The year 2017 was an eventful one for me. After four years of immunotherapy treatments with every CT scan showing tumor stability, a tumor in my supraclavicle lymph node (on my neck, near my collarbone) outsmarted the drug and began to grow.

I had to quit my clinical trial after treatment #98. I was so looking forward to getting my centennial treatment. I wonder how many people in the world have received 100 infusions of nivolumab (aka, Opdivo)? I wanted to be among the first.

There were decisions to be made after we got that fateful CT scan back. Initially, I was going to just move into another clinical trial. But, by the time I completed all of the requirements (ie., a biopsy to see how much PDL-1 was present), someone else got the spot I was hoping to fill.

My oncologist suggested that I go on chemotherapy for a time while we waited on something better to come along. I had done chemotherapy. I wasn’t anxious to do it again. To say the least.

I pondered on the idea for several days. I cried … and I rarely cry. I started getting depressed … and I am rarely depressed. I thought, I prayed, I researched other options, including potential clinical trials available in Dallas or Houston or anywhere within driving range.

And, one day I decided radiation might be a viable option. The tumors in my lungs were still stable. Only the one tumor in my neck was growing. It seemed to me that it would be an easy thing to radiate that bugger. (I wasn’t a candidate for radiation when I was first diagnosed because of the location of my tumors in my lungs.)

I spoke to my nurse practitioner about the idea. She said if I really thought that was the route I wanted to go, she would make a referral to a radiation oncologist.

My radiation mask and a wonderful
“lung cancer”
cross my cousin sent me.

My husband and I had an immediate connection with the radiation oncologist. We liked him a lot. And, we completely trusted that he would get the job done on that errant tumor, that I had nicknamed Wayward Tumor.

I had fifteen treatments. I will be blogging about those treatments if I will ever sit down and finish them. The treatments were easy enough. I was a little surprised by the severe fatigue that came around after the treatments were complete. It has taken several months to begin to regain my energy and even so, I tire and stay tired very easily.

Nevertheless, when I had my first CT scans since the discovery of the growing tumor, we got great news! Not only was the tumor in the supraclavicle lymph node gone … yes, for the first time in five years, that baby was no more!!!! … the one tumor in my lungs that the radiologist doesn’t call a scar shrank by half. That tumor had been completely stable for over 4 years, not shrinking or growing, just being.

I have been okay with those results … I’ve often said I was completely willing to carry the tumors around with me as I live my life as long as they just sit there nicely and don’t interfere. So, I wasn’t prepared to hear that it had shrunk significantly. Wow!!! You gotta love a CT scan like that one!!!

We didn’t do anything special to celebrate my five-year cancerversary. In a lot of ways, it was just another day. But, in my mind, crossing that magical line in the sand – it seems many stats are done for one year and five-year survival rates – was special. Very special.

I am well aware that people can and do get to fight the beast again after crossing the five-year mark. The fact is, I am still in active treatment. I have been in active treatment for the entire five years that I have known I had lung cancer. But, it is still celebration-worthy to cross a milestone that has been looming in front of me all of this time.

Next milestone in sight? 10 years, of course!!!!

Lung cancer is a bitch, y’all. It just is. But, it isn’t stronger than we are. If we keep a smile on our face, a song in our heart, and let hope consume us … we beat it. Every moment we do not dwell on cancer, we beat it. I am resolved to be happy and content every day that is before me. In that way, no matter what happens, I have beaten the beast.

Merry Christmas, Y’all.

 

Number 100!!!!

When I went to a consult about joining a clinical trial at UTSW back in 2013, I never, ever dreamed I would still be here, writing this blog!! Remember, I was only supposed to live 4 months. I had already outlived that prognosis by several months in July 2013.

When I first started the clinical trial in August 2013, the drug I received had only numbers for a name. I had no idea what kind of drug I was receiving. Immunotherapy was not a word I had ever heard.

As time went on, I participated in a number of surveys conducted by pharmaceutical companies. The companies were seeking feedback from cancer patients about upcoming advertisements. I began to connect the dots … and realized that the test drug I was receiving was the newest and latest therapy – immunotherapy.

Not everyone has the same results as I do. In fact, my medical oncologist has said that the biggest side effect of immunotherapy is disappointment. Because it is touted these days as the “cure-all,” patients whose cancer doesn’t respond positively suffer great disappointment. Sometimes, they also live with side effects they hadn’t bargained for, such as pneumonitis or impaired liver or kidney functions. No drug is completely safe and immunotherapy is no exception.

But, for me … and for many like me … immunotherapy is a true miracle drug. The drug I get is Opdivo, aka nivolumab. Another was introduced at about the same time, Keytruda (pembrolizumab). Both of these drugs received FDA approval for use against non-small-cell lung cancer like I have at about the same time. Both had already been approved for treatment of metastatic melanoma prior to being approved for lung cancer. Other immunotherapies have now been approved by the FDA for treatment of various cancers, including lung cancer. There are other drugs currently in trial. This field of research is exploding!!

That’s good news for those of us with cancer. Five years ago, immunotherapy wasn’t considered a viable option for treating cancer. Today, it is offering great hope to researchers, physicians, and most importantly, patients and their families and loved ones.

But, this is not really an advertisement for immunotherapy. I do encourage you to speak to your oncologist about the possibility of being treated with this miracle drug, though. It might not be the right treatment for you, but it just may be!

Plugging Along

Opdivo is infused every other week. That’s a lot of doctor-going, especially for a person like me who avoided doctors like the plague prior to being diagnosed with lung cancer.  Every visit required extensive blood tests. At first, I had to have CT scans every 6 weeks. As the years went by and my tumors remained stable, we were able to extend the amount of time between scans to three months. I had so many CT scans that I learned to drink barium without gagging. That’s too many scans!!

At first, no one knew what in the world I was talking about when I said I was getting immunotherapy. These days, I imagine most lung cancer patients, and possibly patients with other cancers, are familiar with the term, if not with how it works.

Opdivo gave me back my life. I was very sick when I underwent traditional chemotherapy. With Opdivo, I suffer a bit of fatigue on the day of the infusion and some minor tiredness on the day after the infusion, but that’s about all. (My thyroid no longer works properly, a common side effect, so I have to take levothyroxine every day … That means I constantly fight a weight problem, but that’s comparatively minor (and I do have to remind myself of that quite often!).)

When I reached treatment #75 or so, I began to look forward to a big centennial celebration!!! How many other patients are out there who can say they have gotten 75, much less 100, immunotherapy infusions? I wondered about that then. I still do wonder. How many of us are there who have basically been with the drug since inception?

When I finally reached treatment #90, it was a forgone conclusion that I soon would be joining the centennial club. And, I looked forward to it with relish. I’m not really quite sure why it seemed so important to me to get to that 100th treatment, but it was a goal I really wanted to reach.

A Bump in the Road

Imagine my shock and distress when I went to see my oncologist prior to receiving my 99th treatment and learned that I was being pulled out of the trial and I would not be getting any more Opdivo! After over four years, a tumor in a lymph node in my neck finally outsmarted the nivolumab. The drug was no longer controlling it. My doctor could not and would not continue the treatment.

What????!!! I cried. I rarely ever cry. But, I cried.

Most normal individuals would have cried because their cancer was once more on the move. Not goal-oriented me. Oh no! I cried because I was just two treatments away from reaching Infusion #100. My heart was set on it. It had been a foregone conclusion that I was going to be celebrating #100.  I was nearly frantic in trying to figure out how I could still get those two additional treatments (I never looked past Treatment #100. Treatment #101 held no awe for me … just that #100 was important.)

I’ve already blogged previously about this bump in the road. In short, after much consideration, I decided to have the growing tumor irradicated. I am slowly blogging about the process, if you’re interested in reading about the experience.

Sooooo … How did I Reach #100???

So, if I was pulled from the trial, a tumor was growing, and I went through a different course of treatment, you may be wondering how I managed to reach Infusion #100. Well, it is really simple!

My medical and radiation oncologists both agreed that I should resume Opdivo treatments after completing radiation. The drug has controlled the tumors in my lungs for about 4-1/2 years. The logic of the oncologists is that it would be foolish to abandon a protocol that I have responded to so well. The tumor that outsmarted the drug, the tumor I called Wayward Tumor, has presumably been killed with radiation so we only have to worry about the tumors in my lungs at this time.

I resumed Opdivo treatments at the end of September after a break of several months. My blood test results remain perfect. I continue to feel great after a treatment. We’re back in the saddle again!!!

Shine

Imagine my surprise when I arrived at the doctor to resume my Opdivo treatments and my oncologist, his nurse, and my nurse practitioner came in bearing a 100th Infusion gift. If I haven’t said it before (I have), I will say it now: I have the most awesome medical team ever!!!

Shine is perfect! The lady who designs the sculptures says this about Shine:
“Shine could be a congratulatory piece for a milestone reached, or a healing piece to show support and belief in someone. I wanted the form to be visually uplifting… a little reminder of personal goals, met. I embellished the surface with gold to suggest inner light and energy.”

Enough said! There’s absolutely nothing more I can add except, “Isn’t she beautiful?”

 

 

 

Advocate for Yourself!!

As anyone who knows me knows, I am a big proponent of clinical trials. But, recent events make this post one that I feel needs to be written.

Bud (in the white shirt) – just a month or so before he passed
away. Friends and family met for lunch.

On August 30, 2017, my friend Bud Bivens passed away from stage 4 non-small cell lung cancer. He leaves behind a bevy of great friends and loving family members. He will be sorely missed.

Bud’s cancer was not diagnosed until late June of 2017. Only a week or so before, he had celebrated his 68th birthday. Bud was active. He loved to bowl and to do other activities that kept him moving.

He felt good and seemed strong, but he had developed a persistent cough. He tried to get in to see his primary care physician  (PCP), but she was too busy to make time to see him. Her office suggested that he go to Urgent Care if his cough persisted. It did.

At Urgent Care, an x-ray was immediately ordered and Bud was told to get to ER right away. It was evident that he had late stage lung cancer and needed more help than could be provided by Urgent Care.

Bud was admitted to the hospital. A series of scans and tests were run. Because he was on blood thinnners, the biopsy was delayed for a week. Once the biopsy was done, Bud requested that they test the tissue for genetic mutations.

Treatment could depend on what was found through the mutation testing. If he had a high PDL-1 count, immunotherapy might be a good option. If he had EGFR, ALK, KRAS or other mutations, targeted therapy drugs could be more effective and less harsh than traditional chemotherapy.

Unfortunately, mutation testing takes a couple of weeks. However, while medical professionals waited on the results, Bud was sent to radiation to have several small tumors eradicated from his brain, using a gamma knife.

Clinical Trial … or Not …

I had had such phenomenal results from the clinical trial I had joined 4 years ago that we all were excited and hopeful that Bud could also get into a trial. I did and still do believe that patients get the latest and greatest that research has to offer when participating in a trial.

I also believe that the level of care and attention a patient gets when in a trial is magnified. I loved being in the trial I was in and would readily join another.

However, when waiting on a trial allows your fast-spreading cancer to continue sprialing out of control, a trial is not the best option. Your best option is to begin treatment NOW.

Bud’s treatment was delayed six weeks while all of the trial requirements were being met, such as being cleared by his cardiologist,  waiting on results from the mutation testing, and allowing his body to rid itself of blood thinners, etc.

Those of us who knew and loved Bud were devastated to watch him go from a virile man to one dependent on oxygen in just a matter of a few weeks. He could barely speak because his cough had gotten so bad. His movements were limited because his oxygen levels tanked with the slightest amount of exertion. It was clear to us that Bud was going downhill way too fast.

And, yet, the doctors drug their feet. Weeks passed with nothing being done. Weeks that saw Bud’s health decline more and more.

Finally, a trip to the emergency room resulted in Bud once again being admitted into the hospital. He had still been given nothing to combat his cancer. His doctor was still waiting around to try to get him into a clinical trial.

Some of us worried that this trip to the hospital was the last one Bud would take. His health was continuing to decline. Day by day, even those with him every day could see that he was failing. He was losing weight, couldn’t eat, and the cough was relentless.

A forthright doctor told Bud that if they couldn’t get his oxygen levels up to the high 80s, or preferably, into the 90s, they would have to intubate. Once intubated, the expectation was that it would fall to his family to decide whether and when to pull the plug on their dad’s life.

The idea of putting his family through that terrified Bud. He never showed much fear in the face of his disease, but making his family face such decisions was the one thing that I saw bring tears to his eyes.

Chemotherapy … Treatment at long last

While in ICU, the doctors decided Bud might have pneumonia hiding behind his tumors so they started heavy duty antibiotics. The antibiotics meant that Bud was no longer going to be eligible for the clinical trial so, at long last, chemotherapy was begun.

Bud rallied. Whether the chemo or antibiotics or both worked, we don’t know. But, Bud improved enough so that he was able to go back home. We were all elated. There was still hope.

Unfortunately,  he wasn’t home for long. His oxygen levels tanked. Even a level of 70 was a dream. Somehow, he managed to survive it dropping down into the 40s. When, despite valiant efforts, it couldn’t be brought up to a sustainable level,  Bud made his last trip to ER and, subsequently, to ICU.

He refused intubation. He was given morphine in increasing amounts. He passed away peacefully on August 30, 2017, surrounded by his loved ones. Bud will be greatly missed by many of us.

His brief battle against lung cancer makes me ready to push even harder to make people aware. First, if you have shortness of breath or a persistent cough, get it checked out. Sooner rather than later.

And, the point of this blog entry … we will never know if Bud’s life could have been extended or saved if doctors hadn’t drug their feet. It seems his oncologist was more interested in getting him into a clinical trial than into treating him. It seems he was viewed more as a potential subject than as a man whose cancer was quickly ravishing his body.

I hope through this blog entry readers can see that those who cared about Bud could see him declining day by day, even hour by hour. And yet, his doctor told him that she was shocked by how aggressive his cancer was. She had no idea that it was taking over his lungs so quickly.

Was she blinded to it because all she saw was a subject for her clinical trial? I hope not, but I am fearful that’s the case.

If you are a patient or a caregiver, please. Do not be patient. Do not rely on your doctor or medical team to know or do what is best. You and your family and friends may not be trained in medicine, but may see things in a more realistic way. If things don’t seem right or don’t seem to be moving fast enough or in the right direction, make waves. Make BIG waves. If one doesn’t listen, move to the next.

Again, none of us know if Bud’s life could have been extended if they would have started treatment within a week or two instead of after 6 weeks. But,  I will always believe more, much more, could have been done for him.

His experiences have reiterated to me that I care more about what happens to me than doctors do. I know how I feel and I  know if something doesn’t seem right. And, I won’t sit idly by while doctors wait for who knows what.

I hope you won’t either.

RIP, Bud. You are missed.