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 – changes in the air


It has been just over a month since my last update on Rick … so let’s get right to it. In April, Rick had lots of scans and the report was awesome. Everything is stable … cancer areas are still very small! It appears the immunotherapy which was stopped months before is still working. Can I get an amen?

Unfortunately, Rick’s lipase was back up … darn lipase. This little blip on the radar screen was probably due to the chemo pill and the immunotherapy battling in his system. So Dr. Campbell prescribed a month of steroids to tame the dragon! We also learned that Rick would now be on “Active Surveillance” for the foreseeable future. That means no chemo pill. Let’s just carefully watch the dude!

Our schedule at MDA would also change to blood work and doctor visit every three weeks with lots of scans every two months. We could live with that. It would kinda be like a vacation from what we have been doing! I’m not gonna lie … a month of steroids was not the vacation part. Just ask anyone that has been on steroids. Sleeping is difficult along with a few other unpleasant side effects.

Then in May, on our 45th wedding anniversary, we visited Dr. Campbell for Rick’s three-week follow-up. Lipase was down drastically and oh so close to normal. It was also Dr. Campbell’s birthday as noted by the party hat he wore. Wish I had got a picture!

After our visit to MDA, Rick and I celebrated with a nice lunch near downtown. We had lots of celebrate. We almost didn’t make it to 45 years.

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 – coming off the clinical trial

Yesterday, Rick did his usual early morning bloodletting in anticipation of perhaps another immunotherapy infusion of nivolumnab. It was not to be. Rick’s lipase was 3,082 (normal is between 23 and 300) and during the past two weeks he has felt it. So … Rick is officially off the clinical trial. The nivolumnab is not being kind to his pancreas and essentially the important organ has made it perfectly clear Rick’s body has had enough … for now.

From a cancer perspective, the drug has done amazing things and we are over the moon about his progress. In February of 2016, thoughts were creeping into our minds a funeral was on the horizon. We were so close to the edge of the cliff. Today, Rick and I are making travel plans for adventures, grandson Baby Ben’s baptism, grandson Jacob’s third birthday, our son Ricky’s graduation with a Master’s (party time!) and so much more. Did I mention Rick and I will celebrate 45 years of marriage in May? I know … 2017 is going to be a great year.

Another round of steroids was prescribed … and amazingly … today Rick is feeling better.

So what happened in 2016? We did some really hard work at MD Anderson Cancer Hospital in 2016. Along with tons of prayers, love and support, some incredible healing happened. Some time this year I want to write about all the people that helped us with our special needs daughter, Mimi. An important part of the story I have left out.

I calculate Rick had at least 40 tests (most of them bloodwork, scans, etc.), 34 physician visits, one huge surgery with a 5-day stay to remove his left kidney, three initial immunotherapy drug infusions of nivolumnab and bevacizumab, 11 immunotherapy infusions of nivolumnab after surgery, and three missed infusions due to high lipase levels. What can I say … Rick is a “rock star.” Took him ten months to kick nearly all those tumors down the road and into a ditch.

2017 is going to be a little different. We go back to see Dr. Campbell, Rick’s oncologist, next week to discuss the plan and make sure his pancreas has recovered. It appears Rick will be put on an oral medication that cuts off the blood supply to the remaining tumors. Scans will still occur every three months … and not so many visits to MDA. Can I hear an “amen?”

A cancer journey with immunotherapy – infusion #10 and #11


In mid-November, Rick had his 10th maintenance infusion of Nivolumab at MD Anderson. Of course, the day is a bit more involved than just heading up to the 8th floor. During our appointment with our awesome oncologist, Dr. Campbell, we talked about Rick’s bloodwork. All looked good … except his pancreas, or lipase, level inched just over the line to 326. Something to watch … but we got the “Mother May I” to head to infusion floor.

Since we have already spent a fair amount of time over the past few months on the 8th floor, we have got to know a nurse that really knows her way around putting in an IV. She seems to be able to get that sucker placed with a minimum of “ouches” and little to no bruising. So of course, now we request the amazing Elizabeth! I think we were headed out the door for home by 2 or 2:30 p.m. A most excellent day!

Then last week, on December 1st, we went to MDA for Rick’s 11th infusion. Again, bloodwork looked great … except lipase had nearly doubled to 710 … not as high as after his kidney surgery. But not good. But the dude is feeling just fine. Yep … we got sent home anyway. The old “do no harm” was invoked and we certainly gotta respect that. We don’t have to like it though. I think we sat in the waiting room for ten or so minutes digesting what just happened. I didn’t cry. But we were both quiet. Then hubby placed a call to our oldest. Katie had Baby Ben a couple of weeks before and lives not far. So instead of an infusion … we opted for holding our new second grandson tight for just a few hours before heading north! It was also a most excellent day!

A cancer journey with immunotherapy – Infusion #8 and magical infusion #9


Since maintenance immunotherapy infusions are pretty routine stuff, I’ll be writing about them two at a time. Both infusion number 8 and 9, two weeks apart, started at 6:30 am with bloodletting. Only now since we are so far into the clinical trial, they only take about five vials instead of 15. Then we hang out for a couple of hours and wait for test results before meeting with clinical research peeps and oncologist. After bloodwork is blessed, we head up to 8th floor to wait for infusion. Usually back at home by 2 or 2:30. We can do this!

Infusion #9 was a pretty darn special forty-eight hours. Our daughter, Katie, went into labor with her second babe the day before the infusion. When I got the news, it took most of the morning to get my ducks in a neat little row. I quickly packed a bag, got a quick kennel reservation for Lulu, and a spot for Mimi at her respite house before heading into Houston for a few days. There was a high alert placed for our son-in-law’s parents, Nana Jana and Pee-Paw to assist with little Jacob. They drove in from the Dallas area. Yes … it would take four grandparents to take care of one little toddler! Jacob is a busy boy. Rick and I picked him up from daycare and then out to dinner. As Houston is not our usual arena, we relied on Yelp for dinner spots and almost wound up taking little Jacob to a sports bar. A quick call to our daughter in labor and we settled into a more appropriate dinner spot.

The following morning, also infusion #9 day, grandson Baby Ben arrived … 8 pounds, 7 ounces! Rick started his day at MD Anderson. After dropping off Jacob at daycare, I hurried to get my paws on our newly born Baby Ben. Such a handsome little guy! I am in serious love! Later in the day, I arrived at MDA to supervise Rick’s infusion. Afterward, we headed around the corner to see Baby Ben. I have an adorable photo of Pop-Pop wearing his hospital bracelet from MDA holding Baby Ben all tightly wrapped up with his hospital bracelet. All in all, an interesting infusion #9 we will never forget! Prayers and MDA made this magical moment possible!

A cancer journey with immunotherapy – infusion #7 sweet spot and a return trip!


Last week we had a major milestone with “the schedule” at MD Anderson. We discovered our sweet spot after lots of 12-hour “infusion” days. Basic schedule now is bloodletting at 6:30 in the am, meet with clinical trial nurse and oncologist at 8:30, and then a lovely infusion before and during lunch! No more grumpy bug faces on our part. I think we got this! Maintenance infusion #7 was a like a gentle fall breeze and we got home about 2 pm.

The most interesting part of the day was meeting with one of Dr. Campbell’s fellows! I learned our awesome oncologist, Dr. Campbell, gets a new one each month. I wish I wrote down his name. The young man was chatty … I love that … and has a PHD in immunology. He told us Rick had kidney cancer long before the severe symptoms appeared that lead us on the quest to figure out what was wrong. He called those scary symptoms the “tipping point.” I learned once you get to that point it is imperative to quickly get a correct diagnosis and start treatment. We also learned that Rick’s clinical trial for clear cell kidney cancer now has all their sixty patients. Rick was number 36. No more slots are available. So far Rick is still the rock star performing the best in this particular immunotherapy trial. Sixteen and one-half months to go!

The day after the infusion we took a trip … back to Washington, DC … to hang for a few days with our son and lovely daughter-in-law. We were there last in March to fulfill a promise and witness Kate’s confirmation into the Catholic Church. That trip was also after Rick’s very first infusion after being approved for the clinical trial. We went back and forth on the teeter totter about whether we should go. Rick was in lots of pain and nauseous most of the time. It was Rick’s decision to go for it … and we made it happen. I remember pushing him through the airports in a wheelchair. Back then he didn’t walk much in D.C. He was mostly there in spirit.

What a difference seven months make. This time we stayed up late, walked our feet off, got up and personal with lots of Washington D.C.’s monuments, went on an awesome history tour (History Nerds) of the Gettysburg battlefield, played trivia with Ricky’s cadets in a bar, toured the Holocaust Memorial Museum, and so much more. I think I got my hubby and travel buddy back!

My favorite day was the Gettysburg battlefield tour in Pennsylvania. Ricky and the lovely Kate had purchased the tour for hubby’s birthday present in September. I had no idea Gettysburg was only a ninety minutes drive from Washington, D.C. Al Condit was our amazing tour guide on the History Nerds tour bus which lasted just over two hours. The comfortable bus held about a dozen people. Al knows his Gettysburg history and provided non-stop fascinating commentary and occasional videos on the famous three-day battle. We got out of the bus a couple of times … once on the Confederate side and once on the Union side at Little Round Top. While there are many ways to experience Gettysburg … I totally recommend the History Nerd tour. Just saying!

A cancer journey with immunotherapy – maintenance infusion #6 … turtles … scan results

Infusion drugs!
So the hubster had his CT and MRI scans this week, along with his every other week maintenance infusion. This week was maintenance infusion #6 of the immunotherapy drug Nivolumab. The scans are an added stress and just two more things we gotta do … but only every three months. They give us some great information on how Rick is responding to Nivolumab as we very slowly inch toward the finish line of treatment about 17 months from now.

When we both get to be grumpy bugs about “12-hour Thursdays,” I like to tell Rick his cancer journey reminds me of one of Aesop’s Fables, The Tortoise and the Hare.

“Dear … you are that slow and steady tortoise in a race for your life. And we all know who won in that story, don’t we?”

It was during our meeting with the lovely Simi, Dr. Campbell’s awesome PA, that we got the results of the MRI from the evening before. Rick wouldn’t have his CT scan until later in the day. Simi started with the liver tumor which went from 2.1 cm to 1.8 cm. Nice! Just don’t ask me how big a centimeter is! The tumors in both lungs were already reported to have disappeared in a previous scan, so no news there. The tumor on his chest was reported by the radiologist to have “decreased” but no specific measurement was given. I’ll take that and run with it!

I was hoping there would be some good news on the four cancer affected areas of bone. In all these months nothing much has been said about the bone areas. Simi indicated that in three bone areas the cancer was “killed.” Simi then looked us straight in the eyes, starting with Rick, and then grabbed Rick’s arm. With a smile that touched both her ears, Simi repeated that one important word “killed” again. News like that sinks in slowly … and in waves. Oh, and one other bone area, on the 9th rib, had decreased. I’ll reserve my happy dance for later at the house.

Simi also told us Dr. Campbell shares his patient cases with his fellows.

“He doesn’t use anyone’s name, but when Dr. Campbell is describing a patient, I always know when he is talking about you! Rick … you are becoming a celebrity with the fellows. They all want to meet you,” Simi told us.

Dr. Campbell dropped in grinning a few minutes later. He told us Rick’s dramatic results in this clinical trial has shown the “best results he has ever had in a patient.”

So yesterday … was a very good day.

And after all these months I am still learning. This week I learned that only 3% of cancer patients are participating in clinical trials. We need to do better. I learned that being a celebrity sometimes has nothing to do with receiving an award like an Oscar or an Emmy. Sometimes it is just awesome test results and excited fellows! I learned that someone new tells me every day they are praying for us. It is very humbling. I also learned I get lost every time we have an appointment in the main building at MDA. I also learned the gift shops at MDA sell Chex Mix snacks, Rick’s favorite snack. Oh … and I really like turtles!