Nick's cancer blog

So I had been suffering symptoms for some months that I didn’t think were directly related to the cancer.

First, for months I had been getting increasingly bad headaches. A big part of that seemed to be related to vision problems that started showing up. Simply put, I have double vision. This started in the spring as something I only noticed every now and then, and it is constant now. I got new glasses and they take care of it at distances, but up close like a computer screen or reading it still persists. It makes reading very difficult, and as I type this, I have one eye closed so I can see only one image. At the end of the workday, the eye strain really creates pain behind my eyes.

There’s also severe jaw pain that has gotten progressively worse. I can’t eat sandwiches or burgers right now because I can’t open my jaw far enough. I’ve been seeing a TMJ specialist for this and was told that the cause for this is usually stress which brings on clinching. He made me a mouthguard that I wear on my lower teeth to prevent this, but there has been no improvement.

Well, it turns out all of these problems are direct results of my cancer. I saw a neurologist about the headaches and she ordered an MRI.

They found new bone lesions (tumors) that have been growing in my skull. These are from lung cancer cells that have spread beyond the lungs. It looks like there is also some cancer around one of the nerves of my eye and in the lining around my brain, but not in the brain itself.

The lesions are causing the jaw muscles to spasm, and they believe the vision issues are caused by the growth around the optic nerve.

So, starting next week, I will be getting whole brain radiation treatments every weekday for 2 weeks. The goal is to shrink or destroy these lesions, and hopefully, get relief. The possible side effects are fatigue, nausea and I might lose all my hair.

We also found disease in my femurs after I told them about pain I was having there, so they’ll treat my legs as well.

It’s bad news but we are also looking forward to starting and finishing the treatments so that I can feel better. Hopefully the side effects won’t be too bad and I won’t miss too much work.

Thanks everybody for all the support and prayers.

Real quick update and its good news.

We went back to the Taussig Cancer Center at the Cleveland Clinic and I had my first scan since starting on Tagrisso today. There is definite improvement from June. The CT scan shows the cancer is shrinking again. My cancer is not a single tumor “blob” but a bunch of small nodules all throughout my lungs. They are definitely fainter looking in the images now.

Also, in June there was a little shadow spot on my liver. It was very faint and not necessarily cancer or something to be worried about, according to my oncologist. We can hardly even find it now. It may be nothing to worry about at all.

We are relieved, of course. We’ll do another CT scan in October and hopefully see even more regression of the cancer then.

Thanks to all for your prayers.

One year ago today, our world changed forever. It was the day I was told that I have advanced cancer.

I didn’t even believe it. I knew it was a fact. But I didn’t really believe it. My wife cried for probably a week straight before I even shed my first tear. It took days to even sink in that it was real. I was only 44. It just couldn’t be.

First, I owe you an update from my previous post.

My test for the T790M mutation in my cancer cells came back positive. This is the result we were hoping for. It means I can stay on a targeted therapy, thus still avoiding chemotherapy. (Good resource on the different kinds of treatments for lung cancer here).

My new medication is still a daily pill and is called Tagrisso. Hopefully it will kill the cancer back to near-remission like the Tarceva did last year. I have been taking it for 6 weeks now. On Thursday of next week, I will get my first CT scan since changing treatments and we will find out.

Until then, we just don’t know how well it is working yet.

Also from my last post, I did have the pleural effusion drained off of my left lung. There was almost a quart of fluid removed. I took a picture of the bottle full of brown liquid but I’ll spare you that. Along with being back on Prednisone, it really helped my breathing feel better starting the next day.

Being on my second line of treatment already was a bit of a wakeup call for us. The 5-year survival rate for stage 4 lung cancer is in the single digits. Therefore, I am making further changes in my lifestyle to be able to beat those odds, including a massive overhaul of my diet.

Refined sugar is completely out. No candy, cake, pie, etc. So is all soda. I’ve switched to drinking either all filtered water or iced tea sweetened with stevia. I’m also eating mostly a vegan diet now, though my research and reading continues on this. I may add poultry back in sparingly, if it is organic.

That’s it for now. Hopefully I’ll have a positive update after next week’s scan.

It’s now early June. My April scans looked clean and things were OK. However, shortly after that, I started feeling symptoms coming back.

Not as serious as when I had to be hospitalized, but they were definitely creeping back. Shortness of breath, pain when inhaling deeply. I figured that the inflammation was coming back and thought maybe I should be back on prednisone again. My doctors had slowly weaned me off of it.

On May 31st I had my regular appointment and bloodwork with my oncologist’s nurse practitioner. A couple days beforehand, I told my pulmonologist about it and told her that since I would be at the cancer center soon, I could get an X-ray if she wanted to check things out. She agreed it was a good idea.

So, I had the x-ray in the morning and proceeded to the appointment with my NP. We had a routine appointment. She listened to my chest and noted a small difference in how it sounded. She consulted with my pulmonologist, who saw the x-ray and then ordered a CT scan.

This was worrisome, because I wasn’t due for another CT until July. So I had my scan a couple days later. Earlier this week, my oncologist returned from a seminar and saw my scan and called me.

The Tarceva is losing effectiveness. The cancer is creeping back in my lungs. There is also a tiny spot on my liver now which may be further spread.

So, we will have to proceed to a second line of treatment. Next week I will have a special blood test looking for the T790M mutation.

Chances are, I will test positive for T790M, and that is our preferred outcome. If so, I will switch to a different medication called Tagrisso, which is also a pill. The side effects are usually less severe than Tarceva. (And the side effects have been really bad lately).

If the T790M test is negative, we will probably add the chemotherapy drug Avastin to my regimen and stay on Tarceva. Clinical studies have shown that in EGFR+ patients like me, Avastin can significantly extend the length of time that Tarceva works. I would get IV infusions of Avastin every three weeks.

We are obviously very disappointed that Tarceva didn’t work longer. I’ll update folks when we have the results. It will be a couple of weeks.

In the meantime, I also have developed a pleural effusion, which is fluid that builds up in the lining around the lungs. It is contributing to my breathing symptoms. So I will have it drained via thoracentesis in a couple of days and it should make me feel a lot better.

 

 

 

 

Today I left work a little after noon and headed to the Cleveland Clinic for my quarterly CT scan and visit with my oncologist.

My wife and I were a little anxious about this one. I felt like my breathing wasn’t as good as it felt a couple of months ago. It had been 3 months since my last chest scan and we were worried about the doctor coming in and telling us that the cancer had started progressing again.

I arrived at the Taussig Cancer Center and started the series of procedures that is now a routine for me. I pulled up and let a valet take my car. First I go to get my blood drawn in the lab area. They put in an IV to draw it because I’ll need it later for contrast during my CT scan. This way, I only have to get poked once.

Blood now drawn, I headed to the basement where Radiology is. After checking in at the desk and a short wait, they call me for my turn. Lay down on the table, arms back, slide backwards into the big donut. Contrast going in, hold your breath for a while. Done in 3 or 4 minutes.

I checked my phone and my wife had just texted that she had arrived. On scan days, she meets me at the clinic so we both can be there to talk with the doctor. She comes from work also but from the opposite direction so we can’t drive in together. I meet her in the lobby and we go to check in and wait to be called for my appointment.

We are called back and a nurse takes my vitals and asks all the standard questions. Then we wait for Dr. Stevenson while he is looking over my CT scan and test results.

He came in after about 20 minutes. He almost immediately told us that he had good news about my scan. I appreciate that he doesn’t beat around the bush. We were obviously very relieved to hear the news. In fact, he said things look even better than the last scan in October.

When he brought it up on the computer, he said that almost all of the cancer is gone. The only thing left were some little whispy traces on the scan that might even just be scar tissue he said. There used to be a big blob in the upper part of my left lung. Dr. Stevenson believes it was the main tumor where the cancer started. Its not there anymore. Its gone.

He said my bloodwork looks good, too. He remarked on how much better I was doing since we first met back in September. We had lots more questions and he answered all of them.

So, obviously, I still stay on Tarceva. It is working very well. It has killed almost all of the cancer in my lungs. Obviously, we are very happy about the news and feel a weight lifted off of our shoulders.

My wife headed to get her car and I headed back downstairs to check in for my other treatment. I get an injection of a drug called Xgeva every 6 weeks. Its a bone strengthener for cancer patients who have had the cancer spread to their bones. As the main treatment acts to kill the cancer cells, Xgeva helps the bones heal. Its a simple shot in the arm.

Off to scheduling to line up my next appointments. I will be back in late February for the routine bloodwork, a visit with Dr. Stevenson’s nurse-practitioner and another Xgeva shot. On April 17th, we’ll do it all over again. I look forward to getting the same good results then.

August 15th, 2016

It was Monday morning, time to go back to work.

Except, I still couldn’t breathe. It actually had gotten worse. Now I was having serious chest pain just from getting out of bed to go to the bathroom.

I needed to go to the hospital. These visits to the pulmonologist every few days and a couple of prescriptions weren’t cutting it. I felt that I needed to be admitted. I told my wife she would have to call in to work and tell them she was taking me to the ER.

So off we went. This time we headed to a larger hospital (Mercy Regional) further away in Lorain. This was partially because they had a larger and more fully equipped and staffed ER, and also because we expected to be admitted, and this was the hospital they would end up transferring me to anyway.

We got there and informed them of my recent cancer diagnosis. Of course, they did the EKG thing again because I had chest pain. We also did a new chest x-ray, and after an hour or two we were finally informed that I (still) had severe pneumonia and they decided to admit me.

So, no wonder I couldn’t breathe. I had lung cancer spread throughout both lungs AND severe pneumonia on top of that.

They placed an IV in my arm and they gave me a couple of IV antibiotics 2-3 times a day. I wore my nasal cannula around the clock. It was hooked up to the hospital oxygen supply on the wall. They took blood once a day, and for some reason, it had to be at like 5 AM every day. That’s not a pleasant wake up, let me tell you. Oh, but the best part about being in the hospital off your feet is the shot to prevent blood clots everyday. In the stomach.

Doctors and nurses came and went. However, I didn’t feel like I was getting better. And I had developed a strange condition. When it was time for me to pee, I got a massive pain in my chest. It didn’t make sense, the doctors didn’t understand it, but it was some of the worst pain I’ve ever felt.

I already could barely make it to the bathroom. Just that trip of ten feet and back left me gasping for air. Because of this, I sat on the edge of my bed and used a plastic urinal bottle instead. The nurses actually encouraged this anyway so they could track my urination. Despite the pain, I did make it to the bathroom for BMs. I wasn’t about to start using a bedpan!

I will say that they would provide me with whatever I needed for pain. When the chest pain got really bad, they would give me Dilaudid in my IV. Now that’s some serious pain relief. When Vicodin wasn’t cutting it for long term pain relief, they bumped me up to Oxycontin. All powerful stuff. I can see how some people can get addicted to that type of stuff.

We got some news on my cancer a few days into my stay. My oncologist Dr. Escuro stopped by and told me that I had tested positive for an EGFR mutation. Only 10-15% of adenocarcinoma cases in the U.S. have this mutation, and I am one of them.

As he had mentioned before, this meant no chemotherapy. He presented this as good news, but I wasn’t so sure. I had been preparing myself mentally for chemotherapy. I was ready to lose my hair. I was ready for the sickness, because I wanted to bombard this cancer with some serious drugs and kill it, no matter how bad it made me feel.

And now I was going to just take a pill?

He assured me that this pill was now the standard first line treatment for EGFR-positive adenocarcinoma.

So we did some internet research on it. The drug is called Tarceva. After doing a lot of reading, (I had a lot of time sitting in a hospital bed all day), I felt better seeing the results that people were getting with this drug. A couple of days later on August 22nd, my wife was able to pick up the first prescription of it and I took the first pill. This was the first day of my cancer treatment.

One nice thing is that quite a few friends and family came to visit me. My parents came of course. So did my brother and sister and their families. My family all lives a couple hours away so that’s no easy trip for them. My nephews brought me homemade cards, which was nice. I still have them.

My boss and the VP of my department at work came by as well. Maybe they thought I was faking it until then! (haha) A friend I hadn’t seen in years came by. I really appreciated seeing him. He lives on the other side of Cleveland, so it was a long drive for him, too. Another friend is a fellow Star Wars fan and brought me a big stormtrooper figure as a gift. One friend shares my interest in politics and brought me some Hillary Clinton toilet paper (sorry if you’re a Hillary fan!). My wife’s coworkers put together a huge basket full of gifts. We had visitors from our church as well. Lots of prayers were being said for me. We are very blessed to have such support.

Towards the end of my stay, I got a wakeup call of just how sick I had become. This had all gotten worse gradually over weeks. I was standing while the nurses changed my sheets or something, and I fell. I just lost my balance and fell down.

I felt myself going down, so I bent my knees, put my arms down and kind of did a sitting motion and rolled on to my back. So I didn’t get hurt at all. But the nurses freaked out. (As they should, I suppose).

“Did you just fall?!”

“Yeah. I’m OK. I’m fine.”

“No you’re not, don’t try to get up by yourself.”

Oh jeez. Now I was just embarrassed. But yeah, apparently when a patient falls, its a BIG deal in the hospital. They rushed me to Radiology for x-rays all over and everything. I felt embarrassed and stupid. How could I have fallen? But the next time I stood up, I could feel my legs buckling again and my balance going again.

Now I wasn’t allowed to get out of bed without calling for the nurse. And they activated an alarm on my bed that would go off if I got out. Wonderful.

The idea of being in the hospital was to treat the pneumonia so I could start breathing better. Long term, as the cancer was treated, my breathing would improve even further. But for now, after a week in the hospital, I wasn’t feeling any improvement at all. We were getting a bit discouraged.

Its now shortly after getting my lung cancer diagnosis, and my breathing is still not improved. Anything more strenuous than walking made me breathe heavy. My pulmonologist prescribed oxygen therapy.

So we headed over to the medical supply company and they sent us home with a portable oxygen concentrator, and said they would be delivering another one to our house that could fill portable tanks. An oxygen concentrator takes in regular air and removes almost all of the nitrogen out of it. The result is near pure oxygen that it put out from a flexible tube. You wear a cannula and breath in the extra oxygen.

We also had a decision to make. My diagnosis was on Thursday, August 4th. On Saturday, we were supposed to leave on vacation. Most summers, we spend a week in Holden Beach, North Carolina with my parents and siblings.

We knew this year, though, it would not be a good idea. As hard as it was for me to breathe, it was even worse outdoors in the hot summer weather. I would be stuck in the rental house most of the day and not real close to a hospital.

So it became a “staycation”. My wife and I had scheduled the week off of work, of course, so we stayed home. It gave me a chance to get some rest and come to grips with our new reality.

The call

Thursday morning, we had a followup appointment with Dr. Escuro. My wife and I had only been awake for a few minutes when my phone rang. It was Dr. Khabbaza. We were actually expecting him to call, we just didn’t know when. He was calling with the results of my bronchoscopy.

I put the phone on speaker. He got right to the point.

It wasn’t sarcoidosis.

“You have lung cancer. It’s adenocarcinoma.”

Total shock, of course. My wife gasped. Then started crying. Lung cancer was never discussed as a possibility.

“Is it treatable?”

“Yes. Your oncologist will look at all of the test results and go over what treatment is best right now.”

Normally, he wouldn’t have given such a diagnosis over the phone, but he knew we were on the way to the oncologist already. We asked a few more questions and he told us how sorry he was about the news. Dr. Khabbaza is one of the nicest doctors I’ve ever met. If his office weren’t such a long drive, I’d still be seeing him as my regular pulmonologist. I recommend him to anyone.

Stage IV

We then saw Dr. Escuro again, as planned. He had also received the results and answered a lot of our questions. He also had the images from my scans the day before. The lesions on my spine were also cancer that had spread from my lungs. We asked what “stage” I was at. Since the original cancer had started in one organ and spread to another, I am stage 4.

We weren’t done with the tests either. My blood tests indicated a possibility for colon cancer. He said it was possible that it actually started in my colon and spread to my lungs. So he was scheduling a colonoscopy because that was the only way to be sure. (It was a few days later, and my colon is clean as a whistle, no cancer, no polyps.) He also was waiting for further tests on my lung biopsy.

The bronchoscopy indicated that I have adenocarcinoma, but he was awaiting more testing to see if mine had a genetic mutation. He said it was rarer in the United States, but that some lung cancers have what’s called an EGFR mutation. He said that if I turned out positive, than my first line treatment would be a pill. Since he didn’t expect that, he gave me information on the three chemotherapy drugs we would be using, starting within a couple of weeks.

This was all a lot to take in, of course. We had to call my family. I had to tell my employer. We got to my wife’s parents (they live next door) and they were crying. My wife cried for days. No one expects to get cancer at 44 years old.

August 4th, 2016 is a date neither of us will ever forget.

Bronchoscopy

Early Tuesday morning, August 2nd, my father-in-law drove me to the main campus of the Cleveland Clinic for my bronchoscopy. After checking in and waiting for a bit I was called back to the prep area. I changed into the requisite hospital gown and waited in a bed while a nurse stuck me with an IV.

Dr. Khabbaza came in and introduced me to Dr. Akindipe, who would be doing my procedure. When it was time, they took me into the bronchoscopy room. There were a lot of monitors and equipment, it looked pretty high tech. I learned later that the Clinic has one of the top bronchoscopy suites in the world.

 

During a bronchoscopy, a scope is inserted down your throat into your lung passages. They can go in through your nose or your mouth. In my case they went through my nose. I was knocked out, of course.

The doctor is able to look around your lungs to see what is going on. More importantly, the scope has tiny forceps that are able to take very small tissue samples for analysis.

I don’t remember any of the procedure. The last thing I remember was looking around the room at all the equipment and then one of the doctors told me he was going to sedate me.

The next thing I remember was waking up back in some post-op room. After a few minutes they let me go and we drove home.

More scans

The next morning I headed to Mercy Regional Medical Center for my scheduled scans. A CT scan is like an X-ray, except that it takes multiple images in a cross section, like multiple slices.

Most often, “contrast” is used during a CT scan to provide a clearer image.  Contrast can be either oral, IV or both. For these scans, I had both. For oral contrast, you have to drink a barium fluid. It’s thick like a shake and usually has a berry flavor. It’s not very good, but I drank it all.

The IV contrast is injected into your IV during the scan. It feels warm going in and especially makes you feel warm in your crotch. It makes you feel like you wet your pants, but the feeling goes away in a few seconds.

For the scan, you lay on a narrow table and then they slide the table into the center of a giant donut. For chest scans, you have to hold your breath while the scanner is taking images. That’s not easy when you are having breathing problems. Usually a scan takes just a couple of minutes, but this time, I was having multiple areas checked, so it took a little longer.

Next was a nuclear bone scan. For this test, you are injected with a radioactive tracer. Then you wait for an hour for the tracer to soak into your bones before the scan. Then you lie on a platform and a special camera takes pictures from head to toe. It can detect the tracer and how much of it has been absorbed by your bones. This is a slow test. It took about 45 minutes and you can’t move. I just relaxed. I might have taken a nap.

When I was done, my father-in-law joked that I probably glowed in the dark now. They said if I had to fly that I would set off alarms at the airport, so they gave me a card to give airport security. I wasn’t traveling anywhere but took the card because I found it amusing.

To the ER

On Sunday night, July 3rd, things were getting worse. I was breathing heavy without actually doing anything strenuous. I was just sitting. What’s worse, I was feeling pain in my chest. I told my wife it was bad enough to take me to the ER.

The closest hospital is a small one in Oberlin, so we headed there. As soon as they heard the word “chest pain” they were concerned and hooked me up to an EKG machine. I knew I didn’t have a heart condition, and wasn’t surprised that everything there was normal. They took me for chest x-rays and we waited as the doctor looked them over.

It was not a good sign when instead of getting results from the x-ray, I was told the doctor now wanted a CAT scan and the nurse started putting an IV in my arm. I’d never had a CAT scan.

Finally, a couple of hours after first arriving, the doctor came and told us that I had pneumonia and that my lungs looked “pretty bad”. He gave me prescriptions for a couple of antibiotics, a referral to a pulmonologist and told me to follow up with him ASAP.

The days afterward didn’t get any better. I missed three days of work. On Thursday night the 7th, I was supposed to take my daughter to an Indians game but was still too sick. I had bought tickets to the Cleveland Orchestra for Friday night and we had to cancel that, too.

The following week I went back to work. Despite the rest and the antibiotics, I wasn’t feeling any better at all. But I couldn’t miss any more work. I also had developed a dry cough. This week, I saw the pulmonologist in Lorain who showed me my CAT scan from the ER.

The inside of your lungs is supposed to look black on an X-ray or a CT scan. Mine were full of white splotches. The doctor said this was very abnormal but he couldn’t tell exactly what was wrong. There were too many possibilities and more information was needed.

He told me that it would probably take a bronchoscopy to be sure what it was, but that he was leaning towards “hypersensitivity pneumonitis”. A bronchoscopy is a procedure where they stick a scope up your nose, down your throat and into your lungs. A doctor can look around and also use tiny forceps on the scope to take very small tissue samples. He gave me a number to call at the Cleveland Clinic and said it would probably have to be done at their main campus.

The Cleveland Clinic number was to their department for Interstitial Lung Disease. It was the first time I’d heard the term, but hypersensitivity pneumonitis is a form of ILD. It comes in many different forms, you can read more about it here. I was able to get an appointment with a specialist about a week out.

Some ugly numbers

On Saturday, July 23rd, I received some results in the mail. Every summer we have a voluntary health screening at work. They draw blood and do a pretty thorough battery of tests on it. Most of the focus is on your weight and cholesterol numbers, but the reports include a lot of other information as well.

Healics is the company that does our screening, and I knew something was wrong when they actually called me at work on Friday. That’s extremely unusual. They told me that a couple of my results were something that I should call my doctor about right away. Check out the numbers below. They are from the past 5 years, with 2016’s results on the left hand side.

 

 

 

I did call my primary care doctor, Dr. Hussain, on Monday, and she wanted to see me immediately. I got her up to date on everything and she pulled up my CT scan from the ER. She noticed something on the CT scan that no one else had. She saw lesions on a couple of my vertebrae.

I didn’t know it at the time, because she didn’t say it. But I know now what she suspected. The pulmonologist happened to call me while we were there, so I handed her the phone so she could talk with him as well. She excused herself and left the room to talk to him. Not good. When she returned, she made me an appointment for me with an oncologist about the bone lesions.

Myeloma?

On Wednesday morning, July 27th, we went to see Dr. Escuro, the oncologist. We were in denial at the time of what kind of a doctor an oncologist is.

They took blood and he ordered more tests, including a 24-hour urine test. I had to pee in a big jug over 24 hours and take it back to the lab at the hospital. He was concerned that I might have multiple myeloma, a cancer that occurs in bone marrow.

Other tests that he ordered were more CT scans, this time of the brain and abdomen, plus a nuclear bone scan.

On Friday, I saw the pulmonologist from the Cleveland Clinic, Dr. Khabbaza. I had to do some breathing tests while I was there. That wasn’t fun. You have to inhale as deeply as you can and then exhale as hard as you can, for as long as you can, all into a large tube. We had to start over a couple times because in my condition it was painful and made me cough. My breathing was still going downhill.

He looked at the CT scans of my lungs and said that, indeed, a bronchoscopy was necessary to know exactly what was wrong. However, he was leaning towards sarcoidosis, which is a different form of ILD. We went into the weekend with more questions than ever.