Nivolumab

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

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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!

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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

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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!

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

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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 – struggling with the schedule

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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?

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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.

A cancer journey – recovery from surgery

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Heparin
Rick is now in recovery mode 15 days after having his left kidney and cancerous tumor removed. We just finished his longest walk ever … probably one-quarter of a mile … around the block! Things are looking up!

In the beginning, most of his recovery days were a challenge. Had to help him get into a sitting position from the bed … he slept most of the day … eating not so much … requests for pain meds. None of those things are happening now.

Of course I’ve had lots of help. Rick’s awesome sister, Bonnie, has been staying with us for nearly two weeks. We are great at tag-teaming between caring for Rick and Mimi, our daughter in a wheelchair. We can’t even talk about Bonnie leaving on Saturday. Getting the Kleenex ready!

I’m getting pretty good at giving Rick the heparin (prevents blood clots) injections three times a day. Think I only performed one really sorry-excuse- for-a-needle-stick once … maybe twice. Today is “day 11” of 28 days. The bowl of heparin doesn’t appear to be shrinking.

This week Dr. Karam, the kidney surgeon, called to let us know about the pathology report of the removed tumor. It was stunning news. The margins were good and ALL the cancer cells in the tumor were dead.

I didn’t know what great news this was until I spoke with Dr. Campbell, the oncologist, the next day. He told me he had never had a patient have the primary tumor completely killed by immunotherapy drugs. He had one patient come close. I remember Rick telling Dr. Campbell when we first started this journey he was going to be Dr. Campbell’s “star pupil.” Obviously, Rick does not disappoint.

The end of this month we travel back to MDA for post-op appointments and start back up with infusions! We have more tumors to destroy!