Friday, October 20, 2017

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!!!


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?"

Wednesday, September 27, 2017

A New Doctor, A New Treatment

When Wayward Tumor, a lung cancer tumor located in my right supraclavicular node, began to grow after nearly five years of stability, decisions had to be made about a new treatment plan. I had to go off of the clinical trial I had enjoyed and that had kept all tumors stable for four years.

It was traumatic to go off of the trial. I only knew being in a trial. And, trust me, when you are in a trial, you are treated like a star! At least at my facility, all appointments are made for you. You have a researcher that takes an active part in your treatment, along with your doctor and nurses.

I didn't even know to whom I turned for an appointment! I was very, very spoiled. And, I liked it!

I was only two treatments away from marking #100 when I had to quit the trial. I can't tell you how much I was looking forward to celebrating my centennial treatment! That had been a milestone I had anticipated for many, many months. I was getting especially excited with the day coming in only two weeks!

But, the growing tumor meant that the immunotherapy was no longer working like it had been. One tumor, Wayward Tumor, had reconfigured itself and was outsmarting my immune system again. As much as I wanted to reach that 100th treatment, it made no sense to continue a treatment that wasn't controlling an active tumor.

I have to tell you. I was heartbroken. Not so much because I had a tumor smarter than my immune system, but because I had dreamed about and already begun to celebrate that milestone 100th treatment. Strangely, I never thought past that particular treatment. I wasn't looking forward to the 125th , the 110th, or really, even the 101st treatment. But, I was definitely greatly anticipating the 100th infusion of nivolumab, aka Opdivo.

As I described in "A Bump in the Road," we considered several options for the new treatment. My oncologist first recommended a Phase 1 trial for a new immunotherapy. I was prepared for that, but the trial filled before I could meet all requirements. Next, he recommended I go on chemotherapy for a short while. He thought that giving my body a break from immunotherapy while we waited for another trial to become available would be a good plan.

Chemotherapy wasn't an option I wanted to take. I had been there, done that ... and I didn't want to do it again. I had become spoiled to feeling great and enjoying my life while on Opdivo. No matter how many ways I considered it, I just couldn't convince myself to go back to the point where I was throwing up, rolling on my bed in pain, too fatigued to walk 10 feet. So, against my doctor's better judgment, I refused that plan of action.

Next, the doctor recommended that we just continue on with Opdivo. Ah!!! Maybe I would make treatment #100 after all!!!

But, no. I could not justify asking my insurance company to pay for a treatment that was allowing one tumor to grow. The fact that the growing tumor was in a lymph node and near my head convinced me even further that it was time to try something else. Cancer in lymph nodes can easily travel anywhere else in the body ... and it was close to my brain. No, continuing on for a few months while we waited for another trial to open up just didn't seem like a viable plan to me.

Advocating for Yourself

Now, I realize that I do not have a medical degree and I am not as smart as my oncologist is. I cannot determine the right treatment plan for anyone else. But, I am studied enough and know myself well enough to be able to help plan my own treatment. If I make a mistake, I am willing to own the consequences. But, I have to do what feels like the best course of action for me, regardless of what the professionals might recommend.

I attend a lot of conferences or patient summits or seminars ... whatever name they go by ... where we have experts come and speak with us. I am by no means the most learned patient around, but I do try to keep up with what's going on in the field of lung cancer so that I am knowledgeable enough to be part of my own care team.

Here's the thing. I have no ulterior motives except wanting to stay alive while maintaining the best possible quality of life. I don't mind participating in clinical trials at all. In fact, I enjoy them. But, I don't consider clinical trial participation the end all. I have no real motivation to be in a trial at this point except to (1) help advance science, but more selfishly, (2) to keep myself alive under the best possible circumstances.

Doctors, no matter how objective they try to be, may still be influenced a bit by their own interests. Some doctors may go the easy route - the tried and true route. Other doctors may wish to be so cutting edge that they fail to realize that on occasion traditional treatments are the best choice.

And, while doctors are quite learned, they are human. They may make mistakes. They may be overworked. They may have other factors influencing their decisions. They may feel more comfortable with certain treatments than others.

Patients owe it to themselves to be aware of what is happening in the world of cancer treatment. It could be their own life at stake sometime. Go to conferences, participate in online forums, monitor cancer-related websites. You don't have to be an expert, but you need to have a working knowledge of possible treatment options.

When I decided that I wasn't willing to subject myself nor my family to a return to chemo, I started doing some research on my own. I tapped into friends who could help me understand what was beyond my pay grade of understanding. And, I banked on information I had gained at a recent LUNGevity regional HOPE Summit when trying to decide just what I wanted to do next.

Considering the Options

I knew I didn't want to go on a chemo regimen, but where did that leave me? What options were there?

From the LUNGevity conference, I knew that research is showing that combining radiation with immunotherapy is proving to be very effective. When I was first diagnosed, I was told radiation and surgery were not options available to me due to the number and placement of the tumors. But, immunotherapy had controlled the tumors in my lungs. Only the one Wayward Tumor was causing issues. And, it was in my neck. It seemed to me that radiation could be a very viable option.

I know that some people have had significant side effects from radiation, but I have always had a positive attitude about radiation. I am sure that stems from the fact that when my dad had it way back in the 1970s, he tolerated it quite well.

I also began to research other clinical trial options. While I love my medical facility and every single doctor I have seen within that system, my life was at stake. I don't love them more than I love life. So, I went to and started looking at options.

There weren't a lot of open trials in Texas for which I seemed to qualify, but there was one that was really interesting to me. It combined a type of radiation therapy, gene therapy, and immunotherapy. It sounded perfect for me. Its only real drawback was that it was being conducted in Houston, 200 miles away.

Nevertheless, I sent a quick introduction email to the researcher to see if my case might be interesting to them.  For the first time since learning that I didn't get into the clinical trial that was recommended right after I was removed from the trial for nivolumab, I began to feel some hope. And, I felt like I was finally making some progress on finding a way to treat this cancer.

There were lots of other trials available, as well. Unfortunately, I didn't know if I qualified for any of them because they were for specific tumor mutations. I had repeatedly requested that my new biopsy tissue be tested for mutations, but I had never heard back that it was being done. Having tumors tested is very, very important. If you happen to have certain mutations, specific drugs are available that work best on those types of tumors. You might never have to submit to chemotherapy. In general, targeted therapies are much more easily tolerated because they are designed to attack tumors, but not all living cells. Learn more about tumor testing here: Lung Cancer Tumor Testing (ALA).

Nevertheless, I wrote them down. I could ask my doctor or nurse practitioner about them at my upcoming visit. We were meeting to determine the next course of action.


After much discussion with my nurse practitioner (my doctor was out of town) about the various options, I learned several things:

  1. My tumors had been tested and I had none of the common mutations. So much for many of the trials that I thought might be options... I wasn't eligible for them.
  2. Radiation could be an option. It hadn't been previously considered by my medical oncologist or his staff, but it was something that could be explored further if I desired.
  3. There were not currently many options available to me at my facility. Some were coming, but they weren't there yet.
Well, I don't know about you, but when I KNOW I have a cancer growing in me, I want treatment sooner rather than later! I imagined that tumor was exploding in size. I don't know if it was truly growing by leaps and bounds or if my mind was playing tricks on me, but I began to be able to feel it - both with my fingers on my neck and internally when I swallowed. My husband could see where it was on my neck. All of these were new developments since we learned it was growing again.

Right or wrong, in my mind or real, I felt the need to get something done and to get it done quickly. Waiting for any length of time felt almost like suicide. I decided I wanted to have radiation. I specifically wanted SBRT, or Stereotactic Body Radiation Therapy. I wanted this treatment because it was done over a very short period of time (at the time, I thought it was done only once). Some radiation treatments go on for weeks and weeks and weeks. The patient has to go for a treatment every week day. 

My hospital is about 45 minutes from home. I didn't want to make that daily drive any more frequently than absolutely necessary. I had quite the plan in my mind!!!

My awesome nurse practitioner agreed to send a referral to the radiation oncology clinic. She realized I would never rest until we at least explored whether or not I was a candidate for radiation. (I had never considered that I might not be qualified for the treatment I had decided upon!)

That same day, I got a call to set up an appointment with a radiation oncologist. And, I was able to get in to see him the very next day!

I got on the Internet and began to research the doctor as soon as I was given his name. And, I was elated by what I found. In his biography, he wrote, 

I try to be direct and honest with my patients while at the same time balancing their need for hope. When patients ask me about lifespan, I honestly tell them that any patient can be the exception to the rule and every situation is different. I want them to have just as much hope for themselves as I have for them.  (emphasis is mine)

Wow!!! This doctor was perfect for me. Upon meeting him, I quoted back his statement to him. And told him he had met his match for Hope in me. We were going to be a great team. I just felt it from the very beginning. I was also impressed that he realized and accepted that every single patient is unique. There is no need to start quoting statistics about lifespan. No doctor is God. And stats are meaningless on a personal level.

It is vital that you know and trust your doctor. If you do not feel comfortable with him or her, find another. If you don't trust them, find another. If they won't allow you to be part of the team making plans for your survival, find another. And, if they aren't willing to work within your timetable, find another. (Some doctors let things go for way too long. Cancer doesn't wait around. My friend Bud is a prime example. While his doctor waited around, his cancer was taking over his body. By the time something was finally done, it was too late. This is not the time to be patient. This is not the time not to make waves, if needed. You should feel a sense of urgency as should your medical team. I say again, cancer doesn't wait around. Neither should you.)


I left our initial meeting with our radiation oncologist nearly floating on air. I loved him as much as I expected I would. From the beginning, I felt like I was talking to a friend. My husband was as comfortable with him as I was.

However, when I wrote to my medical oncologist to tell him how the meeting had gone, I came back down to earth. Radiation wasn't the preferred treatment plan, in his opinion. Unfortunately, my doctor was out of town and I couldn't actually discuss reasons with him.

I hated to do something that my medical oncologist didn't approve of, but I was comfortable with going forward with radiation. Why would I want to walk around with a growing Wayward Tumor for one moment longer than I had to? Why wouldn't I want to get radiation and obliterate that nasty thing? My attitude then and now was, "Let's take care of this bothersome blip in the road and get back to living."

I worried and fretted about going against what my medical oncologist recommended, but I never wavered from my belief that radiation was the right option. I continued on that road. I hoped then and continue to hope that I haven't harmed my relationship with my medical oncologist. I love him. I trust him. But... I felt a deep conviction that radiation was the right path for me to take.

The Plan

I left my initial consult with far more information than I had when I arrived. First, I learned that SBRT was not going to be an option for me. I was way over-simplifying the whole radiation thing!

First of all, SBRT isn't done over one treatment, but over several. And, it consists of very high doses of radiation to get the job done quickly. My tumor was located in a spot where high doses of radiation could cause more damage than I was expecting.

Based on its location, the doctor had to be sure that he didn't damage my esophagus or nearby nerves that controlled movement in my right arm and hand. Oh. I had no idea! In my mind, it was a simple task to direct the radiation rays at the tumor. Zap it. Be done. Laughing now at my simplistic thinking! It all seemed so easy the way I envisioned it.

In short, I wasn't a candidate for the SBRT that I had decided I would get. But, I was a candidate for radiation. The doctor thought we could do 15 treatments. I would need to drive back and forth to the facility for three weeks. (It is funny the things that I dread the most. I was unconcerned about the treatments themselves. I dreaded having to make that boring drive over and over again. Priorities, right?)

The doctor thought it best that I wear a mask during treatment. I grimaced at the idea. He said he would think about whether we could do without the mask, but he felt like that was the best route. The mask keeps you immobile so that the radiation beams hit their target. There's far less chance of damage to good tissue or organs.

We decided that I would return to the radiation center the following week. I would go through a process called Simulation which would prepare me for treatments. A firm decision, however, was not made on whether I would begin radiation right away or wait for awhile, in hopes of getting into another viable clinical trial.

In the Meantime

While all of these discussions are going on, I can feel the tumor in my neck. I don't know if it was truly growing by leaps and bounds or if I was imagining it, but I could feel it. And, I was envisioning it becoming larger and larger and larger while we were waiting on a treatment plan. I'm not much of a worrier, but I do believe in taking action! The weeks that were passing with no treatments and no real plan were beginning to frustrate me. A lot.

To add to my frustration, my medical oncologist was not available because he was out of town. I couldn't discuss my thoughts, feelings, beliefs, or inclinations with him. All I knew was that I felt like radiation was the best plan and I knew that he thought waiting for an upcoming clinical trial was the route to go.

This was the first time in four years that I had different notions than my doctor did. It was an uncomfortable place to be. I love and respect my medical oncologist. And, as I have stated before, I am well aware that I am not a doctor. But I had a deep conviction that radiation was the way to go.

My thought process went something like this:

I have a tumor. It feels like it is growing by leaps and bounds. There are several routes that I can go:
  • Radiation. Let's obliterate that tumor. Get rid of it. Be cancer-free. (The tumors in my lungs are either scars or completely stable ... cancer-free might be a bit of a stretch, but at least there would be no growing cancer.) 

  •  Go back to Opdivo and wait on a clinical trial to open up in a few months. Opdivo was no longer controlling Wayward Tumor. The tumor that I feel like is growing by leaps and bounds every single day. Why would I want to continue on a treatment that is not controlling the tumor? I want rid of the tumor. Now! A clinical trial is just that - a trial. While my oncologist feels that I am a good candidate, we don't know (1) if I will even get into the trial and (2) whether I will respond to the trial drugs.

As I said, I wasn't able to discuss these thoughts with my medical oncologist. In my mind, there was only one route to go: the route that potentially obliterated the tumor; got rid of the offender NOW!

With trepidation, but only because I feared making my medical oncologist mad at me, I made my decision. I wanted to go with radiation. I was and am willing to live with the consequences if I have made the wrong decision.

Saturday, September 23, 2017

A Bump in the Road

On July 12, 2017, I had another routine CT scan. I have them every three months. Nearly every one of them comes back with the good news that I am unremarkable; that all tumors are stable. Until I was diagnosed with lung cancer, I never once thought I would rejoice over being called unremarkable! My, how your perceptions change!

Anyway, I don't worry when I have scans. For one thing, I think worry is wasted effort. It doesn't and won't change anything, but it will rob me of the joy I have today. For another, I have had scan after endless scan that declared me unremarkable. Why would I worry?

Well, this scan was a little different. The radiologist reported, "Interval increase in size of a right supraclavicular node from 1.9 to 2.9 cm on axial image nine of series 2. The thyroid gland is unremarkable." In typical fashion, this didn't worry me in the least, despite the fact that the scan taken in March had also shown some growth of the same tumor.

Usually, I would see the doctor before I get the scan results, but this time was different. It just so happened that I had the results a week or so before my next doctor visit.

I mentioned the growth in passing to my husband, but again, we weren't particularly concerned. There had been a couple of times in the past where the lymph node swelled but then went back to its original size with the next scan. Since I am anything but an alarmist, I just assumed the Opdivo would do its thing or that I had a little infection enlarging the node or anything except that my cancer was growing again.

You're Off the Trial

I was looking forward to my next doctor visit. I was getting infusion #99 of Opdivo (nivolumab). I had been counting down for treatment #100. I don't know if anyone else has ever gotten 100 treatments of immunotherapy, but I suspect there are not many, if any. I had my sights on a centennial party in just two more weeks!!!

When my medical oncologist told me that he was pulling me off of the trial and that there would be no Opdivo infusion that day, I was dumbfounded. I couldn't be concerned about the reason behind being pulled off for my dismay at not making that milestone 100th treatment that I'd had my eyes on for months.

My medical care team all were concerned about me and the fact that my cancer was growing again. All I could think about was that I would not celebrate 100 Opdivo infusions. Tears came to my eyes. But, again, it wasn't because I had new challenges with my cancer, but because I wasn't going to make that milestone. (The mind is a funny thing sometimes, right?)

My doctor assured me that he was going to take care of me and that we would find another treatment. I guess one reason I never worry is that I trust that he will do just that. I'll let him be the one to worry about my treatment plan.

He had already come up with an alternative plan. He recommended that I enter into another trial, this time a Phase One. I spoke with a new researcher and prepared to have a required biopsy to ensure that I had enough PDL-1 proteins in my tumors to qualify for the trial.

Still, I wasn't worried. I wasn't concerned about the biopsy, entering a Phase 1 trial, or about the growing tumor. It was a bump in the road, but we go over lots of bumps and still reach our destinations safe and sound, right?

Soon after I had the biopsy, I received a call from my doctor. For the first time, the reality of what I was facing hit me. "My" spot in the trial had been filled before I could take it. There were no more spots available. My doctor recommended instead that I begin chemotherapy again while we waited for another trial to open up in a few months.

Forks in the Road

For the first time since learning that the tumor was active again, I cried. The chemo that was being recommended to me was Docetaxel. This was the same drug that my first oncologist said he would recommend if I chose not to go into a clinical trial. When telling me about it, he said that it wasn't as effective as the first line treatment and that it had more side effects.

I hadn't tolerated my first line treatment all that well (which is to say that I felt just horrid the first week of treatment with throwing up and terrible fatigue). The idea of going to something worse was definitely not enticing. It took me no time at all to decide to go into a clinical trial instead.

Now, four years later, the same drug is once more being recommended as the preferred line of treatment. No!!!

For four years, I hadn't had a new normal that you hear people talk about so much as I had just kept on living life to the fullest. I never felt like I had a new normal that was worse than my old normal! And, I was in no hurry to return to life on chemo.

I asked myself, again and again, "Will I lose my hair? Will I be as sick as I was before? Will I get neuropathy? Will it even work? Am I willing to go through this again?"

The more I thought about and fretted over the idea of returning to chemo, the more convinced I became that I needed to find an alternative plan. I simply wasn't willing to go back to life as it was when my cancer was first discovered.

Before my next doctor visit, I put my fingers to work ... I looked at and began looking for another trial for which I might qualify, even if it meant I would have to change doctors and medical facilities. This is an indication of how much I disliked the idea of returning to chemotherapy. I LOVE my doctor AND the facility. To change would be like tearing off my right arm.

I found several opportunities that sounded viable, including one in Houston that combined radiation with gene therapy and immunotherapy. I was interested enough in this study that I wrote to the researcher about the likelihood of my qualifying to participate. It would be a problem to get to it since I live in Dallas, but sometimes we just do what we have to do.

I sent my bio to the Houston researcher on the weekend before my next doctor appointment that was on Monday. When I went to the appointment, I had a list of things to discuss. My doctor was out of town, so my appointment was with my nurse practitioner (NP). I love and trust her as much as my doctor. What's more, I feel like she is not only my care provider but also my friend. I believe I can trust her to tell me if I am going down a path that makes no sense at all.

First on the agenda was the fact that I had decided against chemo. That option was just not going to fly with me. Quality of life is far more important to me than quantity. I wasn't willing to suffer through the side effects of Docetaxel in hopes of slowing down my tumor.

So, with that off of the table, where should we go?

First, my NP assured me that genetic testing of my tumors had previously been done. I didn't have any mutations that would call for targeted therapies.

Well then, I asked, why couldn't we just radiate the tumor? I understood that I wasn't a candidate for radiation nearly five years earlier because of the location of the tumors. But, now, I had only one tumor, now called Wayward Tumor, that was causing problems. It wasn't even in my lungs. It was easily accessible for radiation, in my mind, up near my collarbone.

With limited knowledge, but lots of bravado, I decided that I wanted SBRT radiation to the spot. Let's just annihilate the silly, troublesome tumor and be done with it. Stereotactic Body Radiation Therapy (SBRT) requires only a few, high-dose radiation treatments to the tumor. Sounds like a great plan, right? Sure beats traditional radiation, I thought. Traditional radiation treatment requires lots and lots of trips back and forth to the hospital. I live 45 minutes or so away from my treatment facility. I didn't want to make lots of trips.

After an hour or more of discussion, it was clear to my NP that I would not rest easy with any treatment decisions unless I had discussed radiation options with a radiation oncologist. She agreed to make a referral.

And so, a new learning experience was about to begin! Wayward Tumor was about to meet its match. But, not exactly the way I planned it.

(As a side note, my email to the Houston hospital bounced back to me. The researcher's inbox was full. After my discussion with my NP, I decided not to make contact with them at least until after I had met with the radiation oncologist here in Dallas.)

To be continued!!! I have lots more to tell and even some pictures to share in future posts.

Wednesday, September 20, 2017

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.

Wednesday, June 14, 2017

Still here!!

Despite best laid plans, it has been a long time since I wrote a post. It isn't because i have been too ill that I haven't been here. I have been too busy living life! Praise God for miracles ... and thanks to modern day medicine.

I will be getting Opdivo infusion #97 on Monday. Wow!!! It won't be too long before we get to throw a centennial celebration! I wish i was better at planning parties, because that 100th infusion of immunotherapy will certainly be worthy of celebration!

I am writing this on my tablet. Unfortunately,  i don't think i have access to many of my photos. The reality is that i haven't really taken lots of pictures lately. Occasionally,  i pull out my phone to capture a memory, but i haven't taken my good camera out in search of subjects of interest in quite some time. I need to rectify that one of these days!

Today, we celebrate the anniversary of Divo and Espy, the twin kitties, coming to live with us. They have been the perfect additions to our family. Cotton tries to terrorize them on occasion, but mostly, they ignore her. Divo is named for the drug that is keeping me alive. Espy is short for Esperanza,  Spanish for Hope. I usually have trouble thinking of names for my 4-legged family members, but these two were easy!

Speaking of 4-legged family members, Cotton, an 8-year-old American Eskimo Dog, and Barney, my 7-year-old Sheltie (Shetland Sheep Dog), continue to add joy to my life. The three of us play dog agility together. I credit them with helping keep me alive. They have ensured that i get a lot of exercise and that i have much to focus on besides the fact that I have cancer. They are not just my teammates, by any means, but it has been incredible playing a sport with them.

As for my health, i have suffered a couple of set backs in recent months. At my last scan, i developed a severe allergy to the iodine contrast they give me. I thought i was having some kind of strange and misplaced panic attack as I could not catch my breath. I was really embarrassed that i would be having such a reaction after having many, many scans since my cancer was diagnosed. So, i didn't tell anyone how I was feeling.

Fortunately,  when i went to the cancer clinic to have my port deaccessed, it was immediately evident that i was having problems. The chemo nurse quickly diagnosed it as an allergic reaction and got benedryl and lots of liquids into me right away.

It was touch and go for an hour or so (i didn't realize until later how deadly an allergic reaction can be), but i was much better after several hours. I won't be getting the iodine contrast in the future unless absolutely necessary. Now that we know i have severe reactions to it these days, i will be pre- and post-medicated before i am ever given the solution again. Whew!! That was pretty scary. Thankfully, it was scarier after i was all better and was reading about it than it was when i was actually going through. I had complete faith that the care team had everything under control, and they did!

More recently, my blood test results showed i might have developed moderate kidney disease. I was really scared by those results because i would have to quit Opdivo if one of my organs started failing. I really thought I might have come to the end of the race after beating the odds for the last 4-plus years.

My oncologist told me i needed to increase my electrolytes before my next appointment. We needed to see if my kidneys could be rehydrated and begin functioning properly again. (I never realized they were not functioning as they should. There was no pain, blood, lack of urine production ... the only indicators were screwed up levels of creatinine, LD, and eGFR, as shown by my blood tests.)

Several of my friends and my son bounced into action. They know i am a procrastinator. To combat that, they brought me foods that would help raise electrolytes, all kinds of drinks to try, and provided unbelievable support (sometimes in the form of mother-henning me to ensure I was drinking enough to get those kidneys hydrated). I can't begin to say how grateful I am to have friends and family who really do care and go to great lengths to try to make sure i stay among the living.

My care team, my friends and family, and I were holding our breath as we waited on the blood test results at my next visit (i go every 2 weeks). I was a little nervous since we had had a 3-day Memorial Day agility trial where i had played hard, worked hard, and done plenty of sweating. Had I drunk enough water and Gatorade to keep my kidneys happy?

My oncologist, nurse practitioner, researcher, and I had a small celebration when the results were in. When you go to the doctor every two weeks for four years, the staff become friends. We were all elated to see that my creatinine level was just above what is considered normal. Close enough ... and going DOWN, not continuing up!! Whew!!!

Fortunately for me, my friends won't let me rest on those good results and return to life as it was before. I am still being brought different sports drinks to try and i am strongly encouraged to keep drinking them. I am one lucky girl to have such awesome and caring friends.

So, despite a couple of scares, my life is full. It mostly revolves around activities with my dogs and my agility friends, but i have recently been fortunate enough to be interviewed for several articles that will be coming out soon about lung cancer and immunotherapy. In August, i get to return to Chicago for a summit on immunotherapy. I am looking forward to that! I had a fabulous time when i was there last time. This time, i will have an opportunity to visit with a friend who lives there before i go to the Summit. I am looking forward to both very much.

So, here's to living life!!!  Cancer is part of it, but certainly not all of it.

Saturday, April 16, 2016

Just a Line on Paper

I participate on several different cancer-related forums. I don't go seeking support for myself, but I do try to add hope, comfort and/or information to others who go the sites, especially for those who are newly diagnosed with cancer. I well remember how mind-boggling it was to get the news that I had cancer. If I can make it even a little easier on others facing that news, then I want to do so.

I find that, even though I don't know most of the people personally who participate on the boards, I care for many of them deeply. When one gets bad test results or is having a difficult time with treatments, it hurts me. If we learn that a regular contributor has passed away, I shed tears. And, on the flip side, when someone posts that they are now NED (no evidence of disease) or got into a coveted clinical trial or had scans showing stable tumors, my heart sings. It brightens my day.

Chances are good that I will never meet the vast majority of people who participate on the forums. We live all over the world. Many of us are as different as night and day. Our one commonality is that we (or a loved one) have cancer.

Someone wrote today that she was nothing more than "a line of type" to me. Indeed, we have little in common and she is definitely not one of my favorite forum participants. I find her a know-it-all and a very rude individual who says (types) hurtful comments to people nearly every single day. I think she's trying to be funny most of the time. But, that's not how it comes across to many of us.

I've often thought that she has very thick skin because people often disagree with her. Or, worse yet, they just ignore her.  That's what I usually try to do.

But, this blog entry is not about her ... it is about the comment she made about just being "a line of type." I disagree vehemently with that statement.

We may or may not know one another's names, but we actually know a lot about those of us who participate regularly. We know which forum members share similar values and which ones don't. We know who is in remission and who is in the fight of their lives. We know many inner thoughts that would likely not be shared if we were face to face. It feels safe to share what we really think and feel when we can't see one another and we are known by a screen name only.

I might not know you physically, but I know you emotionally and psychologically. And, in my opinion, that is who you are. Not what you look like on the outside, but who you are on the inside, when you think nobody knows you.

I have a very, very good friend. We have been friends since 1999. We have gone through her getting a divorce, our kids getting married, having babies, and in some cases, getting divorced. We've gone through my cancer diagnosis and treatment. I know things about her and her family that her very best friend doesn't know. Because I am safe. We have never met. We have never spoken on the phone. And yet, if I really needed her, I feel that I could go to her and she would be there for me. I know I would be for her. In fact, we HAVE been there for one another. We've shared joys, tears, sorrows, and laughter. We've shared life with one another.

So, there is great fallacy when one thinks they are but "a line of type." You're kidding yourself if you think the people on the other end of your posts don't know who you are. If that were true, online support groups and even Facebook and other social media would not work.

In my opinion, this is important to remember. Adults bully the same as children do. And, it is wrong, regardless of who does it. There is a live person reading comments made on forums or other social media. Some of them are in very vulnerable places, especially if they were recently diagnosed with cancer or how just learned that their cancer has returned or that it is no longer treatable.

Read and reread before posting something. Think about what you wrote. Will it help the person to whom it was written? Will they have to wonder what you meant by  what you said?

None of us is just "a line of type." Don't treat one another as if that was the case.

Wednesday, April 13, 2016

It is Bluebonnet Time in Texas

Spring is always a hopeful time. The grass turns green, flowers begin blooming,  and the trees bud. Bees begin spreading pollen. And, yuck, around here, the mosquitoes show up, too. We have some monsters out there this year.

I don't always look forward to spring. The reason isn't because I don't love the season itself, because I do. But I hate what it foreshadows. Summer. Summer in Dallas, TX can be brutal. I dread it every year, from the time it leaves until it comes again! We have had a lot of unseasonably "warm" weather already this year. I hope and pray it is not preparing us for months of 100+ degree days.

But, one thing I do always anticipate about spring is bluebonnet time! Bluebonnets around here are mostly the Lupinus texensis, though there are many species of the genus Lupinus and many of them may be found growing in Texas during March and April.

Bluebonnets are the State flower of Texas. We Texans take them very seriously!!! There are myths that are perpetuated annually that it is against the law to even pick one of the lovely blue flowers.

It is a Texas tradition to take the kids (two- and four-legged) out to the fields where the lovely blue flowers grow wild for pictures. You will usually find me out there when the first flower pops up and many more times until they disappear for another year.

April 2013

I came across some pictures that my husband took of my two dogs and me out in the bluebonnets back in March 2013. I had recently been diagnosed with stage IV lung cancer and my prognosis was very bad. When we went to the bluebonnet patch, neither of us had much hope that I would be alive to see another bluebonnet season.

Cotton was exploring while Barney was doing what Mom asked!

These two dogs have brought me such great joy - then and now!

Let's get a "perfect" picture!

This is a picture of pure happiness!

I am sad to say that the field where these bluebonnets were no longer turns blue in March and April. I am not sure why. I do know that it is getting harder and harder to find nice spots to take pictures. Maybe the property owners don't want the liability. These fields of blue draw hundreds of people every year.

Ladybird Johnson, as part of the Highway Beautification Act, encouraged the planting of bluebonnets and other native plants along Texas highways after she left the White House. As you drive from Dallas to Austin or Houston, you'll see many bluebonnets alongside the highway. But, these places are not safe enough for me to take my dogs for pictures. They are too likely to break their stays and take a run in the open fields. And, they have no sense that cars are dangerous... (Ha! Cars are just a way to take them from one fun activity to the next!!)

April 2016

The first place we went was to a school stadium parking lot. The bluebonnets seemed to have popped up there before they became prolific elsewhere. So, I managed to get early bluebonnet pictures, but nothing I was proud of. I thought I waited to go until the sun was in a spot where it wouldn't cause shadows and squinty eyes, but I was wrong! Way wrong.

The patches were relatively small, too. But, the good news is that they were behind a fence. I was really glad, because Cotton almost always takes off in a mad dash the opposite direction as where I am. And, Barney always follows her. Both of them run at full speed.

Barney can't keep his eyes open - sun is too bright.

Sun in your eyes, Cotton?!

See what I mean about them taking off and running? They ran to the far end of the fence.
I held my breath, praying that there wasn't a hole where they could get out.

This patch wasn't desirable, except for the fact that it had a fence and a few blue flowers. I wasn't sure I was going to capture "the bluebonnet picture of the season" here, though.

I was fortunate that a friend shared where she goes to take her bluebonnet pictures. I think it is another Texas tradition to keep mum about the really beautiful patches you find. That keeps them really nice because rude people don't trample all of the flowers down.

You wouldn't believe how much disregard people have for these beautiful flower patches. They bring blankets that they lay down right in the middle of a patch. Or they bring wagons or they encourage their children to run with abandon through the fields. It is true that it makes a lovely picture for them. But, it destroys large patches of flowers for all of those who come behind them for pictures. It also kills the flowers so they are not able to go to seed. Next year, the patch will be smaller because fewer flowers left behind their seeds for next year.

But, this story is about finding beautiful spots where I can take pictures of my dogs with the bluebonnets.

Cotton, Barney and I headed out to the park where we were told the bluebonnets were out. The park is somewhat out of the way and apparently not well known. Both of these attributes are good!

On our first trip, I managed once more to go when the sun was in the dogs' eyes. Not only that, because we have been homebodies for the last few weeks, they were very excited to be out and about. Posing for picture after picture is not their idea of a good time! Barney was very cooperative, but Cotton was on a tear. She just wanted to go, go, go and have fun.

I admit I was pretty frustrated with the whole trip except that I now knew a nice place to go to take the dogs for pictures. And, I vowed I would get up early and take them out before the sun was going to be a problem.

So, we headed out the next day, this time around 7:30 AM. Turns out we didn't need to leave so early as it was cloudy all day, but it got me out of bed and on the road so it's all good!

Never one to stay on the beaten path, my dogs and I found some nearly undisturbed patches of blue for pictures!! We had a great day. Cotton was cooperative and so was Barney. We were away from where other people might walk by (my dogs tend to be reactive toward other dogs and want to run and greet other people).

running and running and running ... they love it!

This dog nearly always has a big smile on her face. Happiest dog ever!

Both dogs must have gotten a little bored with our picture taking. Both did some yawning!

Besides bluebonnets, we saw other pretty flowers. I am fairly non-discriminatory when it comes to enjoying wildflowers (and even not-wildflowers (cultivated flowers, I guess they're called)!

I recently saw someone else's video of a visit to the Arboretum. It included stills and video and I really liked it a lot. I remembered to take a couple of videos while we were taking pictures on Saturday morning so that I could play with putting together my own "integrated" video. It is not fabulous, I know, but here's my first attempt (wish the wind had been blowing the bluebonnets ... but it was a surprisingly still day) ...