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!

St. Martha Quilters create quilt for Fall Festival live auction!

Martha’s Quilters have been busy for months getting ready for this year’s St. Martha Catholic Church Festival & Market which will be held on Saturday, October 8. As always, our booth will have for sale some really unique handcrafted items such as Christmas gifts, lots of fun college items, baby wearables, table runners, adorable doll quilts, beautiful lap-size quilts and lots of items I haven’t even seen yet. Basically, something for everyone! Just be sure and stop by our booth! You won’t be disappointed!

Our prayer quilt ministry group has again made a one-of-a-kind quilt for the live auction. Each of our members participated in making this quilt another masterpiece! Last year our Nativity quilt sold for $2,200.

This year’s quilt is an adaption of a paper-pieced pattern called “First Snow” by Tina Curran. Lynn, one of our lovely and talented Martha’s Quilters, acquired the pattern a couple of years ago and promptly began collecting fabric for the project. A couple of months ago, I remember seeing Lynn hunkered down at her sewing machine with little pieces of colorful Christmas fabric flying all over the place. I thought she was making the whole quilt by herself. It wasn’t long before Judy, who sat next to Lynn most Wednesdays, was making blocks for the project. Lynn even taught Judy to paper-piece. Judy also designed the church block, which is not a part of Tina Curran’s design, but definitely just what our Festival quilt needed! I think Clara made some blocks as well. Several of our talented ladies … Noreen … Clara … and Sally come to mind … machine-quilted the project. I was privileged to sew the binding on … and Marie sewed the binding by hand to the back. Embellishments are next week. This quilt is stunning!

The three-month project took our members hundreds of hours to complete and will be hanging in the narthex at St. Martha’s Catholic Church the weekend before the festival. Feel free to take a peek! Opening bid for this live auction one-of-a-kind Christmas quilt is $500.

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 – knocking the dominos down one at a time

Infusion time!
Each early morning visit to MD Anderson reminds me of setting up a bunch of dominos on their short edges in interesting configurations. The hope is after touching the first one, the dominos will all fall, one right after the other, so we can hurry and get back on the HOV toward home before the sun sets. We still haven’t gotten used to the fact … it is probably not ever going to happen. It is why we take two cars for infusion day. That way I can be sure to get home in time for Mimi’s bus.

Maintenance infusion number three happened on August 11, and started with the usual bloodletting. Step two is wait to chat with clinical trial nurse to go over symptoms and blood work. We have always been told the wait is two hours to get back test results. So of course we left the 7th floor and headed down to Cool Beans for coffee and hot chocolate. We found a quiet corner table and Rick set up his phone with our favorite playlist for some chill time.

We headed back to the 7th floor only to find out they were looking for us an hour before to get started chatting early with the clinical trial lady. So much for speeding things up on our part. We won’t do that again. Good news … Rick’s lipase number continues to improve. He is back at the top of the normal range. We chatted with the PA, the lovely Simi, and Dr. Campbell paid us a visit. Turns out he read my blog. It seems I remind him of his mother, who is also a quilter and, I think, teaches English Literature. Who knew? Step three … we headed to the eighth floor where the infusion would happen. We check-in and then go to lunch before heading back up to wait some more. This part of the day is always where Rick and I turn into grumpy bugs because of all the waiting … sometimes three or four hours just to get sent back into the room for the infusion. It is painful. I know lots happens behind the scene until the infusion finally goes drip, drip, drip for an hour. Then wait another hour afterward, for side effects, and finally head for home … in time for dinner.

Note to self … always go to infusion therapy to get IV started. We forgot this time. Some of the ladies in charge of the actual infusions don’t do that part very well. It is painful to watch. I can imagine how Rick felt.

Fast forward to yesterday and maintenance infusion number four! It was pretty much rinse, wash and a repeat of the last one. Only this time MD Anderson had installed IPads on the wall near the check-in desks. The concept sounded like it might work, but I think they need to tweak that one a little. After IPad check-in, you sit down and wait to be called on your cellphone to head toward the check-in desk to get your mandatory MDA “wristband.” The IPad also forgot to inform the MDA peeps that only do “vital signs” that Rick was in the building.

Bottom line … this time we didn’t leave the 7th floor for Cool Beans. Well … actually I left and came back with coffee and hot chocolate. Rick’s lipase is still dropping. It is obvious now the high level had something to do with his kidney removal surgery. Rick had his IV put in by Infusion Therapy peeps. He didn’t get a good one. She stabbed him twice before Rick requested someone else. Then finally the infusion after a long four-hour wait. Rick made it home again in time for dinner.

To mark our continued progress, we are now collecting the wrist bands we cut off at the end of infusion day to visualize how far we have come until the trial finishes in March of 2018. I wish we had started this at the beginning. We would probably have 40 wrist bands by now with all the testing and other doctor visits.

In September, we have two more maintenance infusions, MRI and CT scans. It will be interesting to see if things continue to shrink.

So the dominos … they continue to fall. Maybe not always in the orderly way we want them to. Lord, I think we need to add patience to our list. We continue to feel so blessed and thankful for Rick’s return to good health.

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.