Category Archives: clinical trial

Everyone Needs Support Sometimes

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!

https://www.whatnext.com/ilp/lungcancer/?campaign=AMLC

Save Your Life With a Clinical Trial…I Did

Have you ever considered participating in a clinical trial? If you haven’t, you are in the majority. In fact, according to Patient Advocate Foundation,“ less than 5 percent of adults diagnosed with cancer each year will get treated through enrollment in a clinical trial.”

I find this stat extremely sad for two reasons. The first is that without participants clinical trials cannot be conducted. If treatments cannot be tested in trials, they will never be approved by the FDA, so they will not be available to cancer patients. A study by Fred Hutchinson Cancer Research Center and the University of Washington found that nearly 20 percent of publicly funded clinical trials fail due to lack of participation.

…more…

originally published 10/6/2016

The Hope that is Research

I have to begin this blog on a sad note. There have been personal and national tragedies that occurred since I agreed to write a blog about hope and optimism. I lost three friends to cancer in a week’s time … and last night, my city lost five police officers who were gunned down in cold blood while doing their job of overseeing a peaceful protest march. Sometimes, events make it hard to see joy and optimism, but it’s still there. We just have to look a little harder.

donna-roseEven though I will miss my friends badly, they each outlived their prognosis for stage IV lung cancer by years. The reason they beat the statistics and had years added to their lives after being diagnosed is because of the huge advances being made every single day in new treatment options.

…more…

originally published July 14, 2016

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?”

 

 

 

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 clinicaltrial.gov 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.

 

Research Drugs

Wow! Time flies, doesn’t it? I had resolved to be more faithful to my blog … you never know if there might be a person out there who might be helped by getting to know someone else who is facing the same battle they are. But, months have passed and I haven’t written a word.

Today is treatment day again. I praise God on treatment days that this test drug does not make me sick. At all. Such a nice switch from the initial treatments I was given. I have been told the drug company that makes this test drug will soon be asking the FDA for approval. I hope they get it so that lots of cancer patients can be treated with it. I’m not sure if it is just for lung cancer or not, but it is wonderful :).

Which brings me to a subject that is somewhat confusing to me. I saw something recently that said that only 5% of cancer patients go into a research study. Why?

The traditional treatments I received had held the tumors at bay as long as I was getting them. But, as soon as we stopped them, the tumors began to grow again. And, because the treatments I had been getting were so harsh, we couldn’t continue that particular regimen.

So, I didn’t have a lot of options. I could have undergone a different chemo treatment that didn’t work very well and that would have made me even sicker than what I’d been getting did or I could try a research drug. I didn’t spend ANY time trying to decide which route was the right one for me. And, I have never, ever, not for one second, been sorry I decided to go with the research drug.

I’ve been getting the research drug since July. My blood work is still phenomenal. I haven’t lost a pound (though I wish I could lose about 40!!!). We eat before we start our long day at the hospital and we eat again when the day is done – no nausea!! Not right after the treatment and not later either. I am a bit more fatigued the day after a treatment than I am otherwise, but it isn’t significant. I have participated in agility trials on a Saturday after receiving treatments on the previous Thursday. That wouldn’t be happening if I was getting the old “tried and true” chemo drugs. I’d be spending most of my time being sick, I’m afraid.
My last CT scan could not detect the tumors in my lymph nodes in my neck. The tumors in my lungs are just sitting there – not growing, not spreading. 

I think it was one year ago today that I had my very first chemo treatment. None of us had much hope that I would still be here today, blogging away and still getting treatments. But, here I am and I feel great!!! Just last weekend, I took my Barney-dog to Waco for an agility trial. He and I ran in three events on Friday evening, six on Saturday, and another two on Sunday before we headed back home. We didn’t just run, we were competitive!!! Mr. Barney earned himself two elite titles and seven or eight qualifying scores – first or second place each time. Who would have thought?

God isn’t finished with me on this old earth … and even though I know that Heaven is a far better place than here … I’m really glad that He’s left me here for awhile! 🙂 I just hope that I’m adequately fulfilling whatever purpose He has for leaving me here.

Time to go!