We got the dreaded and totally unexpected news that my 48-year-old dad had stage IV lung cancer after he underwent a routine physical exam. He’d been having some pain in his knee, but we (and all of the doctors he saw) attributed it to some sort of strain that he got from driving from Texas to Washington, DC and back again in a relatively short period of time. Otherwise, he had no symptoms of any disease, much less lung cancer.
Several days ago, I got a text message telling me that a former colleague and friend had passed away unexpectedly. I had seen her recently and she was her usual happy self. We made plans to get together for lunch soon. I guess none of us realized that her days here on earth were coming to a close. …More
When I was diagnosed with lung cancer, I didn’t know anyone else who was still alive and fighting the disease. I started searching around and ultimately landed on a group where I feel totally at home – it is called WhatNext.
I am going to post two links below that will help you know if you think WhatNext will be a good fit for you. I go to a lot of different lung-cancer related forums, but I spend most of my time on WhatNext. It feels like home to me.
On WhatNext, there are caregivers and loved ones, survivors, and people from the medical field for all kinds of cancer from skin cancer to liver, lung, or lymphoma cancers. Take a look at the information below and please join, if it sounds like a place you’d like to be a part of!
This link tells you a lot of the benefits of the group in an advertising way: https://www.whatnext.com/ilp/lungcancer/?campaign=AMLC
SandiA is a Stage 4 Melanoma survivor who is active on the site. She tells you why she loves WhatNext so much!
Let me know if you joined the group because you saw this post! I look forward to seeing you! I think you’ll love it there as much as I do!
I am sitting here staring at a blank sheet of paper, wondering what I have to say to you that will be worth your time reading it. I am no scientist. With the advent of chemo brain, I don’t even really enjoy reading and researching like I once did. So I have no great wisdom to impart.
What I do have to pass along is hope. Such a little word but one that has the ability to change your life. Hope crowds out anxiety and pushes away fear. It fills you with peace and can motivate you. ….More
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!
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.
I just saw that a new series is being developed called “Experts by Experience.” I just love that title. It is especially meaningful to me today because of a recent experience at… READ MORE
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?”
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!
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!!!
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?”
Who knew? LOL! It seems like there is something to celebrate every single month of the year! There’s absolutely nothing wrong with that!
Sad Facts About Lung Cancer
When I was first diagnosed with cancer back in October 2012, no one expected me to live very long. Stage IV lung cancer is pretty deadly. The following facts are from the American Cancer Society’s Web site about lung cancer in 2015:
- About 221,200 new cases of lung cancer (115,610 in men and 105,590 in women)
- An estimated 158,040 deaths from lung cancer (86,380 in men and 71,660 among women)
Lung cancer accounts for about 27% of all cancer deaths and is by far the leading cause of cancer death among both men and women. Each year, more people die of lung cancer than of colon, breast, and prostate cancers combined.
The later the stage of the cancer, the more likely it is that you will not survive even a year. Only 4% of those diagnosed with late stage (aka distant or metastisized) cancer are expected to live five years after diagnosis. The following information is copied from the American Lung Association:
- The lung cancer five-year survival rate (17.8%) is lower than many other leading cancer sites, such as the colon (65.4%), breast (90.5%) and prostate (99.6%).
- The five-year survival rate for lung cancer is 54.0 percent for cases detected when the disease is still localized (within the lungs). However, only 15 percent of lung cancer cases are diagnosed at an early stage. For distant tumors (spread to other organs) the five-year survival rate is only 4.0 percent.
- Over half of people with lung cancer die within one year of being diagnosed.
If you let yourself think about it much, it will scare the living daylights out of you! According to Lung Cancer Alliance, 432 individuals die of lung cancer every single day.
Funding …. Or Lack Thereof
Before I step off of my soapbox, I need to address the sad lack of funding for lung cancer. It makes my blood boil. It should make everyone’s blood boil. Since lung cancer is the third most common (behind breast and prostate) and the most deadly cancer there is, it is bound to impact your life either directly (you get diagnosed yourself with it) or indirectly (someone you love gets diagnosed with it).
When someone hears a person has lung cancer, the first question is not, “Will they survive?” Nope, the question everyone asks is, “Oh, do they smoke?” Because we all know that (1) lung cancer only happens to smokers and (2) all smokers deserve to die of lung cancer because they brought it upon themselves. Right?
Let’s look at some facts. These are for 2015; they are not old and outdated.
In 2015, the Centers for Disease Control and Prevention (CDC) estimates that 157,499 men and women will die of lung and bronchus cancer. (I realize this number differs slightly from what the American Cancer Society estimates. I do not know why the numbers are different, but they are both estimates.) During the same time, 52,028 people are expected to die from colorectal cancer, 41,557 women from breast cancer, 38,797 from pancreas cancer, and 27,245 men from prostate cancer.
Despite common belief, lung cancer affects never-smokers, too. And, in 2015, 28,192 of them are expected to die from the disease.
The fact is that only 20.9% of those diagnosed with lung cancer are active smokers. Nearly 18% (17.9%) have never put a cigarette to their lips. And, 60% are former smokers. Some of those former smokers have not smoked for 40 or more years. (These stats come from the CDC report, “Cigarette Smoking Among Adults – United States, 2006″.) So much for the fact that only smokers get lung cancer.
The federal government devotes billions of dollars to health issues. Funding for cancer is estimated to be $5,414,000,000 in 2015. Of that, $255 million will be dedicated to lung cancer. That amounts to a measly $1,153 allocated for each person expected to be diagnosed with lung cancer. Per death (158,040) from lung cancer, $1,619 is allocated.
By contrast, a total of $685 million is expected to be designated for breast cancer projects. According to the American Cancer Society, a whopping 231,841 individuals (mostly women, but men also get breast cancer) will be diagnosed with invasive breast cancer during 2015. An additional 60,290 will be diagnosed with carcinoma in situ (the very earliest stage of breast cancer). Of all of those diagnosed, a total of 40,290 are expected to succumb to their breast cancer. The federal government is spending $17,002 in 2015 for every death that will occur from breast cancer.
Prostate cancer is the second most prevalent cancer in the United States. In 2015, the American Cancer Society expects that 220,800 men will be diagnosed with prostate cancer. It is expected that 27,540 men will perish from their prostate cancer. The federal government is expected to spend $255 million on prostate cancer (the exact same amount as being spent on lung cancer) in 2015. For every death from prostate cancer in 2015, Uncle Sam is spending $9,259.
Let’s look at this again:
Breast Cancer 40,290 deaths $17,002 allocated
Prostate Cancer 27,540 deaths $ 9,259 allocated
Lung Cancer 158,040 deaths $ 1,619 allocated
Does anyone else wonder why the disparity?
But, I digress. This post is about Immunotherapy.
Immunotherapy – A Life Giver
If one must be diagnosed with cancer, this is not a bad time. Scientists and researchers are on the brink of making astonishing discoveries. More strides are being made now than in previous decades. Exciting strides!
Immunotherapy is a treatment that allows a person’s own body to attack cancer cells. According to the Cancer Research Institute, immunotherapy “represents the most promising new cancer treatment approach since the development of the first chemotherapies in the late 1940s.”
Yes!! I agree!! Having been put through the horrors of chemotherapy, I can attest that immunotherapy is exciting. For anyone wishing to learn more about immunotherapy, a good place to start is the Cancer Research Institute.
When I was first diagnosed with lung cancer, I started a chemotherapy protocol of Carboplatin, Avastin, and Alimta. Avastin is not technically chemotherapy. It is a drug designed to starve tumors of blood supply (anti-angiogenic therapy). Alimta and Carboplatin are both chemotherapies that attack tumors, but also affect healthy cells. They are basically poisons. The hope is that they do more damage to cancer cells than healthy cells.
I can’t begin to describe what it is like to go through chemotherapy. I would get my infusions on a Thursday. By Saturday, I was in bed, except for when I had to be up throwing up. For two or three days, I would be so sick, I could just barely move. No anti-nausea medicine worked. On top of the extreme nausea, a fatigue that cannot be described set in. It was difficult to walk from the couch to the restroom or to the refrigerator without resting.
You gradually begin to feel better. By the end of the second week after the infusion, I could make myself, through sheer will power, go to agility practice. This is a testament to just how much I love agility! By the third week, I was feeling pretty good, considering.
Toward the end of the time that I received my chemo infusions, I was starting to get very depressed. It seemed so futile to finally feel better just to knowingly make myself sick again with yet another infusion. I am afraid that if the infusions had lasted much longer, I would have either quit them or would have had to take anti-depressants.
And, the fact is, I was healthier than most who were getting chemotherapy. My blood tests remained perfect throughout my treatments. Most people, at the least, have their white blood cell counts tank. No one really knows why mine didn’t. My blood pressure also stayed in the normal range.
Since you are being infused with poison when you are getting chemotherapy, you can only get it for so long before the benefits are outweighed by the drawbacks. Chemo itself can (and does) kill cancer patients. As noted by the World Journal of Clinical Oncology:
Over the past few decades, platinum based chemotherapy is the standard of care for advanced stages of NSCLC. These systemic therapies have significant toxicities and confer unacceptable morbidity.
My tumors responded well to the chemo treatments. They shrank by half or so. But, as soon as the chemo stopped, the tumors took off. They were back to their initial size in a matter of weeks.
My oncologist told me that I basically had two options. I could either (1) undergo a different kind of chemo, one that historically made people sicker and was less successful than the first treatment I received, or (2) I could get into a clinical trial and at least help researchers understand some of the new and coming treatments for lung cancer patients in the future.
I didn’t think for a second about the choice. I opted for participation in a clinical trial. I had no desire to be sicker than before! And, if I was going to die, I might as well be a guinea pig for those coming behind me. I really didn’t think much about the clinical trial affecting ME positively.
Nevertheless, the best thing that has happened to me during this cancer journey was the decision to participate in a clinical trial. Few choose this route. I’m astonished by that. I would more than likely be dead if I had chosen to just continue with the traditional treatments.
I started immunotherapy treatments in July 2013. Information about the trial I am participating in can be found at https://clinicaltrials.gov/ct2/show/NCT01673867?term=BMS-936558+Docetaxel&rank=2 and http://news.bms.com/press-release/opdivo-nivolumab-first-pd-1-inhibitor-demonstrate-superior-overall-survival-versus-sta. Unlike chemo treatments, immunotherapy does not poison you, so the treatments never end (unless they quit working). Because immunotherapy isn’t poisonous, you don’t suffer the horrid side effects of chemotherapy. Or, I haven’t. Some people don’t have quite the same positive reaction that I have, but many do.
I have been getting immunotherapy for nearly two years now. I get treatments every two weeks. I have CT scans every 6 weeks (so often, that I can now drink barium without gagging).
Like when I was getting chemotherapy, my blood tests have remained perfect throughout the treatments. Blood pressure and oxygen levels have stayed in the normal range. The only side effect from the immunotherapy that I have suffered is that my thyroid has quit working properly. No big deal. I just take Levothyroxin every morning to keep the thyroid functioning as it should.
The CT scans have shown that the tumors have not grown nor spread at all since I began immunotherapy. One radiologist who reads the scans calls the tumors “scars.” My oncologist does not necessarily agree that they are simply scars. Since we don’t know for sure, we continue the treatments. At the least, it is an insurance policy against the lung cancer.
Because of immunotherapy, I have totally reclaimed my life. I am back to running agility regularly. I keep testing my stamina levels and I keep passing those tests!! WhooHoo!!
As you have seen from my previous blog posts, I started a garden for the first time ever. I go to the movies and out to eat with friends. My calendar rarely has a day without something scheduled to do.
No one knows how long the immunotherapy will continue to work. But, from what researchers know now, patients do not build up a resistance to it like they do to targeted therapies. In addition, it appears that the immune system continues to work against tumors for an extended time even after treatments end.
Immunotherapies are being tested on all kinds of cancer. The Cancer Research Institute (CRI) shows how it is working on their site at http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers. The following quote is from the CRI:
From the preventive vaccine for cervical cancer to the first therapy ever proven to extend the lives of patients with metastatic melanoma, immunology has already led to major treatment breakthroughs for a number of cancers. Every cancer type is unique, though, and immunology and immunotherapy are impacting each cancer in different ways.
In the future, those diagnosed with cancer may never have to go through the horrors of chemotherapy. Perhaps even surgery and radiation can be avoided through the use of immunotherapy. And, the death rates from cancer may decline sharply.
P. S. If you have cancer and you are interested in immunotherapy, you can find out what trials are available by visiting the Clinical Trial Finder.