Undulation

Undulation

Years ago, I remember reading a book and came across the word undulation. Normally, too lazy to look up the word, I would make the meaning fit what I found most desirable. Nothing worked for undulation, so I was forced to use a dictionary. Undulation: the action of moving up and down. I have always liked to use the word because it makes me sound smarter that I am. Well, that is what the last few months have been, lots of undulation!

In my last update on August 1st, we had received good news after a PET scan that Bridget’s tumors were stable. The decision was made by Bridget, Craig, and their doctors to continue the same regimen of chemotherapy. So once again Gigi started a regimen of a two-day chemotherapy round every three weeks. So now we can get into the undulation.

Early in August, Bridget was feeling fine and literally overnight she felt terribly ill and had issues breathing. So off to the emergency room and we find out that she has pneumonia! Since she is immunocompromised her immune system does not always see that she is sick and literally she had no symptoms leading up to the pneumonia. Since we have history with the seriousness of a simple cold, we got on right away. A three day stay in the hospital and Bridget was on her way to recovery.

After another four rounds of chemotherapy and another PET Scan, we are happy to report that the tumors remain stable. Great news, prayers answered once again. So, as you can see, life for Bridget has not been a straight line, but rather an ongoing life of undulation!

Trip Away and COVID

Bridget has been feeling pretty good lately thanks to her twice weekly physical therapy and chiropractor appointments. She is moving so much better and easier which gives her a lot more freedom and independence. Bridget and Craig decided to celebrate their anniversary with a trip up to northern Michigan. They had a great time, and it was so nice for them to get away without the kids for a long weekend. When she returned, she found out that she had COVID. She felt like a cold was coming on and learned of her positive COVID from her weekly test required for her paracentesis. She called immediately to get an appointment at University of Chicago for the monoclonal antibodies. Her case was very mild, and she is already back to normal, thank goodness.

New Chemo Direction- Alpha PRRT Clinical Trial in Houston

Bridget had an appointment with her oncologist in September to discuss her recent PET scan and to make a plan for future treatments. There are few options available to her that she hasn’t already tried. Her oncologist’s recommendation is to continue on the chemotherapy regime every three weeks for the foreseeable future. While simultaneously, applying for a clinical trial for Alpha PRRT. After twelve rounds of FOLFOX (the chemotherapy drugs she’s been receiving) the risk goes up for developing permanent side effects such as neuropathy. Bridget is always researching and looking for other options to extend her life and also give her a better quality of life. She decided to move forward with a treatment called Insulin Potentiation Therapy (IPT) that uses the same chemotherapy drugs but at a lower dose. IPT has been around since the 1930’s. She will receive treatment at a medical clinic in Burr Ridge, IL that has been doing IPT since the mid 1990’s. NETs is a rare cancer and they have experience with other NET patients and IPT. Bridget will receive twelve doses over the course of nine weeks. The delivery takes around 90 minutes. In most cases, there are little to no side effects. This is important to her so she can have more quality time with Craig and the kids. If you would like to learn more about IPT, I have included a description at the end of this post.

Bridget has also applied for the Alpha PRRT clinical trial by Excel Diagnostics out of Houston, TX. She has submitted all her paperwork and records and is awaiting a decision. She was told yesterday by the coordinator that they will begin enrolling patients at the beginning of January. Clinical trials can be very slow moving so it’s important for her to have a plan during the wait and also if she isn’t selected.

Funding

The IPT treatment Bridget is starting next week is out-of-network with her Aetna plan and only partially covered after the out-of-network deductible is met. This will leave Craig and Bridget with weekly medical bills for the next nine weeks and possibly longer if the treatments are working well. I will be sharing soon how you can help contribute to Bridget’s healing journey if you desire. Stay tuned!

A God Sent

We want to acknowledge the incredible, unselfish efforts of our cousin, Mary Beth Cleary. She told us numerous times that she wanted to help Craig and Bridget in any way she could. She has been amazing and saved them many times with child care. Picking up and dropping off the kids at school, bringing them to sports, the zoo, parks, restaurants. Kieran and Alana adore her. She has been a God Sent with her devotion to the kids and her generous offering of her time. Thank you Mary Beth, we love you!

Insulin Potentiation Therapy

IPT is an alternative cancer therapy that uses insulin to potentiate the effects of chemotherapy and other medications. This therapy was developed in Mexico by Dr. Donato Perez Garcia in the 1930s and has been used together with other unconventional therapies. Advocates of IPT believe that cancer cells consume more sugar than healthy cells and are therefore more sensitive to insulin and insulin-like growth factor (IGF). Insulin is also believed to increase the permeability of cell membranes, increasing the intracellular concentration and cytotoxic effect of anticancer drugs. According to the theory underlying this therapy, if cancer cells can be activated by exogenous insulin, a reduced dose (up to one-tenth the normal dose) of a chemotherapy drug can provide the same cytotoxic effects with less severe adverse reactions. Many of the medications used in IPT, such as insulin and other chemotherapy drugs, are FDA-approved but IPT clinics administer them “off-label.”