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Aug 4, 2019 Latest post:
Oct 19, 2020
Oh my goodness, let me tell you a story about Mary's courageous fight against this dreaded cancer. This story has brought many tears and heartbreak, but has given many of us boundless strength to find courage, hope and faith.
In August 2016 Mary was first diagnosed with cervical cancer, stage 1B. She went through chemo and radiation treatments. Mary was bound and determined to be healthy. She was so positive and vibrant through 80 some doctor's visits. Thank the Lord, she was diagnosed as disease free a few months later.
In September 2017 Mary developed some significant swelling in her left leg, which after several doctor visits was finally diagnosed as lymphedema. Lymphedema is common with cancer patients who have had lymph nodes either surgically removed or radiated causing the lymphatic system to become very unbalanced.
After several attempted remedies such as wrapping, massage and air compression sleeves we consulted a vascular surgeon.
In March 2018 Mary had three surgeries to implant stents in her veins on her left leg, the procedure is called a venogram. The three venograms failed and the vascular surgeon referred us to a lymphedema specialist at the Mayo Clinic in Rochester, MN. In September 2018 we met with the lymphedema specialist at Mayo. He performed a CAT scan.
After the radiologist reviewed the CAT scan he came back in and told us that he could not treat the lymphedema because the cancer had returned with a vengeance. He told us to go home and be with our family. We were crushed.
We came back home and in October 2018 met with our oncologist that we used in 2016 but did not feel comfortable with this same doctor.
In October 2018 we had consultation at the Mayo Clinic Jacksonville, MD Anderson Cancer Center, Jacksonville, Florida Cancer Center, Tampa and the Moffitt Cancer Center, Tampa. We selected Moffitt Cancer Center. All of the doctors indicated that the standard of care for this type of treatment was chemotherapy with Paclitaxel, Carboplatin, and Avastin. The standard of care also included radiation, which Mary could only have limited radiation because she was radiated in 2016.
The cancer had metastasized to Mary’s lymph node system, her lungs and was also in some of her bones particularly her hip bone. The doctors made it clear that this was the terminal stage of the disease and the treatment protocols now consisted of life-prolonging techniques.
Starting in October 2018 Mary started her first chemo infusion which was approximately 6-7 hours in duration, one infusion every 21 days. She also went through two weeks of radiation and in between those appointments, met with a pain management specialist, radiation oncologist and orthopedic oncologist for test after test after test.
In February and March 2019 Mary started physical therapy due to some muscle atrophy and tightness in both legs.
In April 2019 Mary had to have cataract surgery on both eyes as a byproduct and common side effect of chemotherapy.
In May and June 2019, she had physical therapy to stretch the IT bands and bursitis.
In June 2019 Mary received the results the results of the PET scan, the PET scan is the most reliable diagnostic tool for cancer. This PET scan was compared to the PET scan from October 2018. Although some progress had been made there is still significant tumors that exist even after the chemo and radiation she received over the last six months.
In June 2019 we met with our cervical oncologist who is chairman of the department. He stated that our next best option was a clinical trial, but Mary had to be tested for the clinical trial to see if she was eligible. The testing included multiple blood draws, pulmonary function test, echocardiogram, PET scan, CAT scan EKG cardiology lab and multiple 24-hour urine samples. All this testing is quite rigorous to get qualified for the clinical trial.
In July 2019 Mary decided to push forward with a clinical trial called Tumor Infiltrating Lymphocytes (TILs). A tumor specimen would be excised from Mary’s lung and taken to the lab and generate pure cultures of tumor infiltrating cells. These T cells are tested for tumor reactivity and the cells with positive reactivity to the cancer are selected and expanded to be infused back into Mary.
There have only been 28 trials of this kind in the world. Three patients had a full recovery with no sign of the disease. However, the risks are significant, from nausea to fatal reactions. Mary did not equivocate, she selected the TIL trial. She is a tough lady and with a strong faith. She told me that this is all in God’s hands.
On July 3, 2019 Mary was admitted to Moffitt for a tumor resection, removing one of the tumors from her chest. The tumor was removed and taken back to the lab to be bio-engineered. Mary was in the hospital for 5 days.
That is the history……………………today, August 4, 2019 and moving forward.
Mary will be admitted to Moffitt Cancer Center tomorrow August 5. She will have a line placement (3 port IV) put into her chest and then receive chemotherapy from August 6 through August 12.
The week of August 12-16 is very critical.
On August 13 she will have the TIL infusion (cells bio-engineered from the removed lung tumor).
Then on August 14-16 she will receive a drug called IL 2 that helps the infused cells attack the cancer.
Starting on August 17 is all recovery and she’ll remain in the hospital until at least August 25.
I will try to provide continuous updates on her journey.
Mary has been on a roller coaster of emotions, but she finds her strength and love from her family, her children and grandchildren, all of her friends and her God.
I think this is the easiest way I can keep everyone informed in real time what’s going on with her each day. Thank you for your patience and understanding. Thank you for all the love and respect, thank you for all the support we have received from so many friends, cards and dinners and well wishes and phone calls and text messages. It certainly has helped us get through this three-year ordeal and will continue to do so. So many of you have been warm and kind……………………….. it certainly takes a village.