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 – scan results revealed


Time for my monthly update on how Rick is fighting stage IV kidney cancer. For so many months, we both have felt like we’ve been in the middle of a boxing ring fighting the good fight. Like Rocky Balboa, Rick has been right smack in the middle of the prize fight for his life with a huge guy throwing gut punches. I’m the one, between rounds, throwing water on him, squirting water in his mouth, and asking him to spit. I like to think I am way cuter than Burgess Meredith, who played his trainer!

This past Friday, Rick had a variety of scans. It was part of our “every two month” check-the-dude-inside-and-out during his “active surveillance” status. We have come to the point of just watching the remnants of little spots of cancer. This has created anxiety for me. Rick … he has moved on down the road of cancer. I don’t know how he does that.

So I decided we both needed a little break … maybe me more than him … so instead of heading home on Friday, Mimi stayed at the respite house, and Lulu reluctantly was boarded. I booked a room at the Hotel ZaZa down the street from the medical center. First time for us and what a cool place. They have a free shuttle that will drop off and pick up within five miles of the hotel, including the medical center. When I booked the room, I mentioned something about spending the day at MDA for testing and was offered a “medical rate.” It was very generous! Upon check-in, we were also upgraded to a suite. We had a lovely dinner that night and breakfast the next morning in their Monarch Restaurant. I recommend the Blackberry Margarita on the rocks, no salt. This was totally what we needed. One night of relaxation … in a cool atmosphere! I could write a whole post on this place.

Fast forward to yesterday. Rick had his last scan … a brain scan. It was a test they couldn’t do on Friday. Rick continues to wonder why he has to have a brain scan. He will be the first to admit, “there isn’t anything up there,” although I know differently. At lunchtime, we met with Dr. Campbell, Rick’s oncologist, that has been calling the shots since we started early last year.

In a peanut shell, he told us no cancer in the brain. CT and MRI scans show all cancer is stable. Essentially, what spots are left are either dead or the same size. The drugs from the immunotherapy clinical trial Rick was kicked off in January is probably still working and may continue for a very long time. One of the symptoms of the infusion drug continuing to work is itching, from the inside, and that is still happening.

Then Dr. Campbell dropped the big news. We will now be having scans every three MONTHS and seeing him every 3 MONTHS. Although Rick is still considered in treatment, we feel like we won the fifth round of a 10 round championship fight. God is good … all the time!

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 – 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 – 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?”