A cancer story – it is Survivor’s Week at MDA


This week is “Survivor’s Week” at MD Anderson. When MDA social media asked if they could hang a banner of Rick on their skybridge, I immediately said, “yes.” There are lots of smiling faces hanging from banners there this week. Yesterday, I had to see Rick’s banner in person to see if it was real. He is located about halfway down the skybridge. Little did social media know the significance of the request and our connection with the skybridge.

Katie, our number one daughter who works at the Houston Zoo, met me for lunch to celebrate at the Rotary House restaurant. I wanted to introduce her to a spot her dad and I have hung out at for a good meal during our many MDA visits.

Many of our family members have been so helpful and supportive through this journey. But Katie has been my rock, actually more like a boulder, for so much of the journey from initial appointments, to surgery day, spending the night with her dad in the hospital, and walking last year’s MDA Boot Walk. Unfortunately, cancer affects not just the patient but family members, friends and co-workers. Rick has been blessed with support from too many to count.

It was over two years ago Rick was diagnosed with Stage IV Kidney Cancer at MDA. There have been plenty of opportunities for us to travel across their skybridge, which connects their main building with the buildings across the street. We spend most of our time at the May’s Clinic but frequent the Main Building for testing and other doctor visits. I can’t recall the exact number of steps over the skybridge, but it is quite a hike.

In the beginning of his cancer journey, I pushed Rick in one of MDA’s many available wheelchairs across the skybridge. After he was accepted into an immunotherapy clinical trial, Rick started receiving immunotherapy infusions. I think it was after the third infusion about six weeks later, we rode the oversized golf cart from one side to the other. Rick walked the rest of the way holding onto my arm to testing appointments. Did you know MDA provides golf cart rides back and forth over the skybridge all day long to those that can’t walk it?

Fast forward a tad. It wasn’t long until we were actually walking it together … slowly at first. Then last year, about this very time, we noticed the banners on the skybridge.

“You know … someday your picture is going to be hanging up there don’t you?” I said.

I like to think Rick, and all the others hanging out on the skybridge this week, are there to put a face on cancer and that cures are indeed possible.

A cancer journey – scan result days make me nervous


So last week Rick had his three-month scans which included MRI and CT scans and the usual bloodletting. Scan day is emotionally draining and exhausting. Reminders everywhere of how far we have come … and we don’t want to go backwards.

Yep … and it never fails. Despite the anxiety, we chuckle every time we spend the day at MD Anderson. There are new things to learn. This time the lab where Rick has bloodwork in the Mays Building went all techie. We used to fill out a slip of paper with pertinent patient information before dropping it in a little plastic basket and wait to be called up to the desk. The paper slips have been replaced with electronics. Progress? Yesterday, when we arrived at check-in to see Dr. Campbell, all the iPads, except one, were out-of-order. Rick’s clinic went all techie a while ago. Not complaining mind you! I can relate! Heck … after replacing my sim card and getting a new iPhone, I am still dropping calls.

So to put life for us in perspective … since his diagnosis of Stage IV Kidney Cancer just over two years ago … Rick and I have welcomed two grandbabies. Ben, 18-months-old now, was born down the street in the medical center on one of Rick’s long immunotherapy infusion days. And little Zelie was born two weeks ago to our son and lovely daughter-in-law, Kate. Even Jacob has been deeply involved in Rick’s journey. Now four, Jacob came to wish his Pop-Pop good luck two years ago on the day Rick’s tumor/left kidney was removed. Jacob also walked the MD Anderson’s Boot Walk with us this past November while Baby Ben slept in his stroller. You don’t have to tell me we are blessed.

So just how did it go yesterday with lab results? Our visit with Dr. Campbell, our oncologist, and his lovely PA, Simi, was all we had prayed for. MRI … stable. CT … stable. Rick is just over a year from getting kicked off the clinical trial and receiving no cancer treatment. He still itches all the time, mostly from the inside, which tells us the immunotherapy is still working.

I asked Dr. Campbell how patients who are on Rick’s clinical trial are doing because I want to know. My editor, the lovely Cynthia, has trained me well. I had my steno pad all ready for details and statistics. Dr. Campbell indicated 55% of those on Rick’s immunotherapy clinical trial drug ARM of Bevacizumab and Nivolumab are having positive results. In the coming months, the trial will end and it will be number crunching time. I will be there with pen in hand to probe for any updates. It is my hope these two drugs will be the answer for all Clear Cell Kidney Cancer patients … not just for the 55% with positive results. That is probably just 50 people.

And now for the really great news … we don’t go back for FOUR months!!!! Can I get an amen?

A cancer journey – scan results, reflections and more


It seems a LONG time since we talked about cancer and three whole months since the last scans. Geez, it was nice to have a break. Just so you know … cancer is always the elephant in the room. Sometimes it is the size of a mouse and sometimes a lot larger. When Rick’s ankles started swelling … a lot … conveniently right after our last visit with his oncologist, inside I panicked. We blamed it on a change in medication. Changed it … still large ankles. When we finally ditched the medication … after about six weeks … the ankles returned to normal. Found out he could live just fine without it. The elephant turned back into a mouse.

Then in November, I thought it would be a great idea to walk in the 2017 MD Anderson’s Boot Walk. Rick woulda never made it in 2016. I loved how cancer survivors at the Boot Walk were given a “survivor” bandana. Rick wore it like an arm band. It was surreal walking with so many survivors, caregivers, friends and family that were touched harshly by the evil hand of cancer. I also noticed many walking in memory of those they lost. What a lovely tribute and a great way to raise money to fight cancer.

Final numbers on the 2017 Boot Walk fundraiser … they reached a million dollars. Rick and I walked along with our awesome daughter, Katie, and grandsons, Jacob and Ben. The sign pinned on Jacob’s back read, “I am walking for my Pop-Pop.” And Ben, he slept the entire walk.

So this week Rick had his three-month scans and blood work. Our visit with Dr. Campbell is always an adventure. We chatted about so many things besides blood work and scans. Rick is doing great. Everything is still stable and we head back in May!

Then Dr. Campbell got out his magic marker and started writing across the tissue paper on the exam table. Geez, the last time he did this was to explain how immunotherapy works from a chemistry perspective. I looked at Rick to see if I should be worried.

“I am telling all my patients three things,” Dr. Campbell started.

In a peanut shell, he was frustrated with the state of Medicare. Lots of his cancer patients are on Medicare and having problems with receiving care. Apparently, Medicare has all these rules/laws that date from the 1980’s and it is his … and his colleagues … opinion that changes need to be made. Lots of articles in magazines, newspapers and other social media outlets are not having much of an impact in Washington. It was his thought perhaps there needs to also be a patient-driven mission to help make some important changes to Medicare.

His three points were, as follows:

1. Medicare has to be able to negotiate drug prices. Let’s face it. Cancer drugs are expensive. He also said the United States pays for 80-85% of the world’s drug costs. Other countries negotiate their drug prices and that is why they are so cheap compared to the United States. Something I never knew. Sounded reasonable to me.

2. Medicare patients should have the same access to care as commercial insurance with their co-pay programs. So I am guessing this is not happening. Why not?

3. Cancer patients should have the ability to participate in clinical trials. These important trials are saving so many lives. I’m living with one success story.

I wondered if Rick would have been approved for the immunotherapy trial that saved his life had he not been insured by commercial insurance. Looks like I need to become more educated about how this works. Thoughts anyone?

A cancer journey – new scan results!


Last week Rick had his three-month scan extravaganza. It seems like years (it has only been 20 months) since I wheeled a very sick husband through MDA’s automatic doors. It is probably why before backing out of the driveway, I asked Rick if he still remembered his patient number. The seven-digit number is asked multiple times by MDA personnel before testing. Yep, like our social security numbers, these digits are forever embeded in both our brains.

Rick just completed six months of observation without any medication. Previously, he had a couple of different types chemo pills which were a disaster. And before that months of immunotherapy. Testing and results this time around were going to be a very big deal.

So on Friday there was a bone scan, bloodwork (I lovingly call “bloodletting”), CT and a mega-MRI scans. I highly recommend having scans on Friday. Everything went so smoothly, in about 6 a.m. and out by 4 p.m. That was probably the shortest scan day in our history. We were both pinching ourselves. We even had time to catch a quick bite to eat at the Rotary House’s restaurant between the CT and MRI scan.

And today we received Rick’s stunning scan results from our favorite oncologist, Dr. Campbell. All the scans are the same as three months ago … stable. His lipase was even normal. Thank you Jesus and MD Anderson. We talked a lot about the trial he had been on. The reflection was good for our soul. This immunotherapy stuff has only been around seriously since 2012. I think it all started with treating Melonoma patients. Rick started on his Immunotherapy Trial for Clear Cell Kidney Cancer in early 2016. Since then, his trial has expanded from 60 patients to 105. That is because patients were doing so well. Rick’s combination of two drugs have a 58% positive response rate. The one drug has a 42% positive response rate. Dr. Campbell indicated they will have all their slots full on the trial by the end of the year for the 105 patients. These positive results bode well for future Clear Cell Kidney Cancer patients.

Dr. Campbell told us that they are expanding the types of cancers that receive immunotherapy ALL THE TIME. There are also new drugs being developed ALL THE TIME. He also said they have learned that some of the old drugs may not hold cancer at bay forever. Some of the drugs are doing very well. The good news is that patients, like Rick, who respond well to immunotherapy have a great chance that if cancer does return there will be lots more new treatment options to chose from.

We go back for scans in three months. If that visit is stable … four month scans.

A cancer journey – Inlyta does not like Rick … and MDA’s Kidney Cancer Conference!


An update on Rick is in order. I know … it has been two months since you’ve heard a peep out of me. I’ve learned that some things just need time to evolve. In some respects, I miss the kidney cancer immunotherapy trial. It was predictable. We went in every two weeks for bloodwork, visit with oncology and nine times out of 10 … upstairs to the 8th floor for an infusion. Then every three months MRI and CT scans. Last year was hard work but there was a rhythm to it … it felt kinda like a slow waltz that sped up as Rick got better. Just imagine Rick and I in the middle of the dance floor with all these MDA people … everyone with their dance shoes on … swirling around us and smiling.

Back to reality! So Rick started taking Inlyta on Valentine’s day. The drug was approved in 2012. The purpose is to block blood vessel growth which feed cancer tumors. He started with 5 mg twice a day. The drug has lots of side effects and the poor guy had most of the ones listed on the MDA Patient Education handout. Rick lasted 24 days before having to come off the drug. Then a two-week medication break … which was heavenly … I got my husband back. He then started on 3 mg of Inlyta twice a day. The first week wasn’t bad. I kinda thought this was going to be our long-term cancer drug. Then the bottom fell out. On day 11, in early April, Rick was off the lower dosage Inlyta.

Dr. Campbell ordered scans last week on Holy Thursday. Yep … we have been living our Lent again this year! We see him this Friday for results and a path forward. If the scans look as good as last time, there is talk of a medication “holiday” which I think could be way longer than two weeks. This is what I pray for Rick … hourly.

The last time we saw Dr. Campbell he explained that Rick was kinda unusual in the way his treatment unfolded after being diagnosed last year. Normally, a patient comes to MDA in much better shape … not in a wheelchair. They often start with something like Inlyta, called a frontline drug, and then maybe¬†graduate to surgery, an immunotherapy clinical trial, or other treatment. Rick was so bad over a year ago there wasn’t time for a frontline drug. He went straight to the clinical trial … with stunning results. Dr. Campbell believes, and so do we, the immunotherapy drugs are still working. One indication is lots and lots of itching. Go figure!

Did I mention I attended MDA’s Kidney Conference this past Saturday? I was so impressed with the MDA staff presenting! It is the 10th year MDA has put it on for patients, caregivers and the medical community. They always videotape it. When I get the link, I promise to share! My friend, Hildy, a kidney cancer survivor, told me about the conference and we went together. She has been going for a bunch of years. I love Hildy. She is brave, open and a lover of life! Hildy is one of the first people I leaned on at the beginning of our cancer journey.

In a peanut shell … here is what I learned about kidney cancer. Note that some of what I learned applies to all cancers! I learned knowledge is power. If you are a caregiver … become knowledgeable. I hold each kernel of knowledge to my chest and hug it deeply.

Did you know in the United States, 63,000 are diagnosed with kidney cancer each year? I learned kidney cancer does not respond to radiation or chemo and 75% of kidney cancer is clear cell. That is what Rick has. I learned lots of kidney cancer patients ask for PET scans. Don’t. They are not a reliable test for kidney cancer. I learned each patient is very individual as far as treatment. I learned that 10 years ago most people with stage 3 or 4 kidney cancer lived one year and there was little to offer patients with kidney cancer. Now there are 12 to 13 new treatments and more promising clinical trials are popping up. I learned about frontline drugs, immunotherapy clinical trials, and mTor inhibitors which slow down cancer cell growth. I sound like a cancer nerd don’t I? I learned in the next 10 years there will be more personalized treatments available. Right now about 25% of patients are responding to immunotherapy clinical trials and they don’t know why yet. My rock star husband is a success story! MDA wants to know how to help the 75% that are not. Also, the 25% of kidney cancers that are not clear cell need to get their far share of understanding and treatments. I learned that the results of several clinical trials will be published soon. There are many more clinical trials and emerging therapies on the horizon. I learned there are no predictive markers for kidney cancer. I learned that 2013 was a breakthrough year for kidney cancer immunotherapy. Did you know that immunotherapy can kill cancer cells? It is adaptable. It kills specifically cancer cells and it has memory. I think one of the most important things I learned … and this can be applied to all cancers … is DO NOT GET TIRED OF FOLLOW-UP! If your doctor says you need scans every three months, six months, or once a year, get them! Be vigilant!

A cancer journey – our new normal is ahead of us!

I like the sound of that!
So it is been over a month since my last post. Time for a little update. Last post Rick came off the clinical trial. The immunotherapy drugs worked great on his cancer cells … but went a little nuts on his pancreas. Thankfully, Rick went from very high levels of lipase (pancreas levels) to almost normal in just a few weeks. The wonders of steroids. Ya gotta love ’em. Of course, Rick also got some kind of a wicked cold that included a horrible cough. It hung around for weeks and is now almost history!

So our next step? Dr. Campbell pulled a cancer pill out of his oncologist tool box. Inlyta … take it twice a day. It does much the same thing as one of the immunotherapy infusion drugs. It cuts off the blood supply to cancer cells. One of the most unusual side effects of the drug … there are others … is that Rick’s hair is going to turn white. Well, he isn’t far off so that one is totally not a problem.

“Pretty soon I’ll look just like Col. Sanders,” Rick laughed.

If the Inlyta does its job, it looks like our visits to MDA will slow down. Praise Jesus on that one! So once we get rocking and rolling … major scan day tomorrow to set a benchmark on where he is … we will be visiting Dr. Campbell every six weeks and scans every three months.

Don’t tell anyone … but we could be getting our life back!

A cancer journey – six months of treatment down … 18 more to go!

Infusion time!
It has been years since I sat down and watched an episode of The Simpson’s. Looking back, I can certainly relate to the kids on the show. We have our own Lisa, Bart and Maggie characters in our family. So does anyone remember The Simpson’s “Itchy and Scratchy Show?” They are a mouse and cat cartoon, within the Simpson’s show. The cat and mouse are actually really mean to each other. I recall always letting out a disapproving “yuck” and covering little eyeballs in the room whenever the duo came on the screen.

Well, we have our own “Itchy and Scratchy Show” at the Frantz house. Not to worry … no violence involved. It seems one of Rick’s side effects from the Immunotherapy is lots of itching. Not only that but now he has little red spots popping up. Reminds me of perpetual chicken pox. So if that is all he has to deal with during cancer treatment, we are counting our blessings big-time.

It is why Rick had a dermatology appointment last week at MD Anderson to help with the issue before things get out of hand and the dude is covered in little red spots. They even did a biopsy to make sure it really wasn’t a big deal. Two prescriptions later, one a gigantic vat of itch cream I swear I could dip him in, and we were out of there. It was the shortest day on record at MDA for us.

This week Rick finished up maintenance infusion number five! Dr. Campbell confirmed that with six months of treatment under Rick’s belt, side effects from the immunotherapy would almost certainly be limited to the itching and was actually pretty common. Rick’s immune system is like another cartoon from my own childhood … Mighty Mouse … to the rescue!

When I mentioned to Dr. Campbell, our awesome oncologist, that maybe he could take out that one stitch from the biopsy last week since we were there, he said, “I don’t have a kit.”

“While I don’t have one either,” I said back.

The dermatologist did indicate to me it was really easy. Sure … that is what they all say … was my first thought. Dr. Campbell then drew a large picture of how to take the stitch out. Like the 84 injections after kidney removal surgery, it looks like I’m committed.

The birthday that almost wasn’t was also celebrated this week. I’m still pinching him to make sure he is real. Rick was the birthday boy with cake baked by adorable pregnant daughter, Katie, with lots of help from grandson Jacob. The little guy cracks a mean egg.

No MDA visits for two weeks. On the radar … CT and MRI scans and maintenance infusion #6. We aren’t even close to done yet. Thanks for continuing to keep us in your prayers!

A cancer journey – getting the word out!

Infusion time!The past couple of weeks I’ve been working with MD Anderson’s communication’s person writing about Rick’s cancer journey. The story has appeared live today and I wanted to provide a link so people who are not my friends on Facebook can also read it. It has the potential to reach over 285,000 people with their blog, Facebook page and Twitter account.

Rick and I want people to be pro-active about cancer. We want people to know about clinical trials and immunotherapy and our experience at MD Anderson Hospital! Cancer is such a scary word. The past couple of months several people have told me about one of their loved ones’ new cancer diagnosis. It brought me right back to that dark place in my heart when, in February, we were approaching the edge of the cliff of possibly having to plan a funeral. But there is so much good work being done especially at MD Anderson Hospital and so much hope.

Follow the link below to view the blog post. We still have work to do … but this is our cancer success story in a nut shell!

https://www.mdanderson.org/publications/cancerwise/2016/08/Nivolumab-Bevacizumab-clinical-trial.html

A cancer journey – struggling with the schedule

Infusion time!

Two weeks ago, Rick had his first of many “maintenance” immunotherapy infusions of Nivolumab for the clinical trial he is on for his clear cell kidney cancer. The hope is the drug will re-train his “T” cells to recognize and destroy any remaining cancer cells.

Fast-forward to yesterday and we were hopeful to get the go-ahead for “maintenance” infusion number 2. We gotta do this every two weeks for about 20 more months … not to mention scans every few months. It is going to be a very long haul … but I believe the worst is behind us. I’m still trying to wrap my head around the fact that Rick had a kidney/tumor removed two months ago. Seems a little surreal. Rick has been back at work for the last few weeks and was finally cleared to climb on all that fun metal stuff at the plant.

It is why Rick and I have been huddling with the calendar trying to figure out how to integrate these MDA visits into our lives with work and family. The whole infusion thing reminds me of baking cookies. The infusion recipe has a specific order and involves several ingredients starting with blood work. Actually, Rick and I lovingly call it an old-fashioned bloodletting because they take over a dozen vials of blood. That is done the day before, or at the very least two hours prior to meeting with the clinical trial research peeps. She asks bunches of questions to see how Rick is doing and records the answers on a computer. I don’t think she found a spot to record my answer, “Rick has his sense of humor back!”

Next ingredient … we stir in a meeting with the PA, the lovely Simi, and sometimes Dr. Campbell, the oncologist. If all the blood work looks fine, we head to another floor to bake at 350 degrees or until done. Actually, that is where we go for the actual infusion. Like waiting for bread to rise, that part involves waiting around for a couple of hours for whatever goes on behind the scene and finally the infusion. Why am I telling you all this? Because these infusions days can easily burn a whole workday.

So Rick and I tried an experiment this week with the schedule. Rick drove to MDA from work late in the day on Wednesday for his blood work. On Thursday, Rick and I met with the clinical trial “team” in the early afternoon and was approved for his infusion. We figured it would be way easier to make up a few hours at work then a whole day. Good news … his lipase numbers had dropped again. Rick was now so close to the absolute top of the normal range. Actually, there was a few minutes when it looked like we might be sent home again. Imagine throwing out a perfectly good batch of unbaked cookie batter. It felt like that!

I left MDA at 3:30 pm to head back to meet Mimi and her bus. Rick finally pulled up into the driveway after 7 pm. I could tell by the look on his face this wasn’t going to work and he had a “Plan B” in mind. I have a call into Dr. Campbell’s awesome scheduler, Lauren. Hopefully, she can work some magic for when we head back down to MDA in two weeks for “maintenance” infusion number 3.

A cancer journey – did they let us back on the freeway?

Infusion time!
When last we left off, Rick experienced, what we hoped was a little detour in his cancer journey. It was the first, and I am certain, it won’t be the last. I know that now. It is a very humbling experience to hear you may not be able to continue on your clinical trial … all because of a blood test result. A test on Rick’s pancreas two weeks ago reported his lipase level at 1602, with the standard range between 23 and 300. Not good. It is why we were sent home two weeks ago instead of receiving his very first “maintenance” infusion and put on “evaluation” status in the clinical trial.

We were to await an appointment with a GI doctor to rule out pancreatitis. That last-minute appointment finally happened yesterday. We met with Dr. T. That is what they call her as her name is not to be easily pronounced! After a long and thoughtful consultation, looking over labs and scans, it was determined that Rick did not have pancreatitis. Dr. T also asked me how Rick was doing. I told her this guy is back at work, working out with light weights, eating everything in the house that is not tied down and has his sense of humor back. Yup … it was her opinion the lipase elevation is likely due to the infusion drugs. But would they return to normal?

Today we left the house at 7 am for blood work at 8 bells. Two hours later we met with the clinical trial nurse and Dr. Campbell’s PA. If the blood work showed a decrease on the lipase test, Rick would have an immunotherapy infusion. Unfortunately, the lab didn’t perform the lipase test. A simple snafu for sure which increased the tension. Back down to the lab we went! We got Tazz to draw blood. He has a Looney Tune’s Tasmanian Devil on his scrubs. Another two-hour wait. We cruised to lunch at a restaurant in the Rotary House. The sit-down restaurant has a nice lunch buffet which was worth the stroll from the Mays Building.

At 12:45 my cell phone rang. Dr. Campbell told me the lipase declined 1200 points and Rick could run over to the Main Building for his infusion. Just like that! A simple phone call and we were allowed back on the freeway. But not too fast! More waiting and it was finally around 3:30 when the immunotherapy drug started dripping. During “maintenance” there is only one drug involved. Cuts the actual infusion time down to about an hour instead of three. Immunotherapy should continue every other week for the next 20 months … if there are no detours.

So I call 3:30 pm the witching hour when I am at MD Anderson. I gotta be out of the parking lot to head back home before Mimi’s day center bus rolls in front of our house. Thank you Lord for the HOV! So I leave Rick to finish his infusion and our awesome son-in-law, Chad, does a MD Anderson drive-by after work depositing hubby home safe and sound.

What I learned this week … life can turn on a dime many times … blood work is important and I don’t understand it all very much … except for lipase. I also learned that unexpected good things happen at our house every few days … like Michele texting me she has extra and brings a delicious dinner and her cute dog for Mimi to pet. And cards appear in our mailbox every few days. This week from the newspaper I write for, The Tribune. One card for Rick, and one for me, signed by everyone in the office with lovely little notes. Made our day when we weren’t having a very good one! And then there was a long phone call last week with Aleta … we call each other “sista” … she is actually my lovely daughter-in-law’s mother and lives far away in Michigan. It was one of those tough days and she made everything better.

And my favorite little text relay early in the day with my little sister, Gretchen! “Big day at MDA today! Maybe infusion … maybe kicked out of trial!” I texted.

“I vote for infusion,” Gretchen texts.