Nov 10, 2020 Latest post:
Feb 16, 2021
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Kevin's journey started in March of 2019 when he felt bloated and lots of indigestion. After many visits and changes in reflux medicine, nothing seemed to work, and the bloating was getting worse. On July 14, 2019, he said "P, (that is what he calls me), I can hardly breath. So off to Strong West ER we went. After several scans, they told us that Kevin has excess fluid in his abdomen, called ascites (Abdominal swelling caused by accumulation of fluid). Told us Kevin need to see his doc to get this fluid drained. On July 18, 2019, he had a procedure called Paracentesis (Paracentesis is a form of body fluid sampling procedure, generally referring to peritoneocentesis in which the peritoneal cavity is punctured by a needle to sample peritoneal fluid. The procedure is used to remove fluid from the peritoneal cavity, particularly if this cannot be achieved with medication.) they drained 1 gallon of fluid, about 8lbs worth. Kevin said, when I got off the table, I about lost my pants... I can't imagine how much better he felt. He was hungry too. When you feel so bloated, you don't eat much, cause you feel full all the time. I didn't realize that your stomach, liver, kidneys, etc. are incased in your abdominal cavity. This is where the fluid fills. That is when our live flipped upside down, inside out, unbelievable, they found cancer cells in the fluid they drained. Again, on August 15, they drained another half gallon of fluid.
On August 16, 2020, Kevin had a PET (Positron Emission Tomography) Scan. Cancer cells show up as bright spots on PET or PET scans because they have a higher metabolic rate than do normal cells.
August 26, 2020, we had the "Results" appointment with Dr. Fung from Wilmot Cancer Center. We had AWESOME family support at the appointment with Brian Higgins, Rich & Lisa Higgins and Katie Higgins with us when we were given the bad news. Kevin has Stage 4 Type 1 Papillary Renal Cell Carcinoma. This is the rarer of the two types of Renal Cell Carcinoma, only about 10% of Kidney cancer is Type 1. Kevin was given two options. Apply to participate in Clinical Study or do nothing. Dr. Fung said that if Kevin did nothing, he would have 6 months to a year. That wasn't an option. We signed up for the Clinical Study and Kevin's first Treatment day was September 30, 2019.
His treatment consisted of Phase II Study of Ipilimumab Cabozantinib, and Nivolumab in Rare Genitourinary Cancercs (ICONIC). He went every 3 weeks and received 2 infusions of Ipilimumab (ipi) and Nivolumab (nivo) and took a daily pill of Cabozantinib (we call it cabo). After 4 treatments, he went to 1 time a month and they dropped the Nivolumab. Until October 2020, this treatment was working to keep all tumors at bay. Even the fluid build up stopped.
Kevin started feeling bloated again and had a sore spot and lump under his arm. On September 18, 2020 he had about a quart of fluid drained off. On September 30, 2020, we went to see PA at Wilmot Cancer Center and she ordered an ultrasound the following week, October 9, 2020. He went for the ultrasound and they found that the lump was in his right breast. So they did a mammogram and scheduled him for a biopsy on October 13, 2020. On Thursday, October 14, 2020, we learned that it was cancer, the cancer consistent with metastatic Papillary Renal Cell Carcinoma. Dr. Fung called and told Kevin that the treatment was no longer working and that the cancer was spreading.
Again, the fluid was building up, and on October 22, 2020, he went and had about half of a gallon of fluid drained.
He had his 3 month Scan on October 26, 2020. On November 2, 2020, Kevin was schedule for treatment, I went with him this time. We were to learn of the results of his 3 month scan and what are next steps were. We met with Dr. Fung and he gave Kevin 3 options. Dr. Fung's notes: "Today, I reviewed his most recent CT chest, abdomen and pelvis, which showed stable bilateral pulmonary nodules, a stable right breast soft tissue consistent with renal cell carcinoma and stable omental and peritoneal metastatic implants. I also reviewed the pathology result of his recent right breast mass biopsy, which showed metastatic renal cell carcinoma. Based on these clinical data, Kevin C Higgins has progressive metastatic disease due to clinical worsening of his malignant ascites, which required paracentesis of 2100 cc of fluid on 10/22/20, and the new right breast mass since 8/2020. I recommend him to discontinue current study treatment due to disease progression. For management of progressive metastatic papillary renal cell carcinoma, I discussed with him three treatment options. The first option is treatment initiation of bevacizumab and erlotinib based on a recent phase II study of bevacizumab 10 mg/kg every 2 weeks and erlotinib 150 mg PO daily in patients with advanced papillary renal cell carcinoma (N=83; 42 in the hereditary leiomyomatosis cohort, and 41 in the sporadic papillary renal cell cancer cohort). ORR was 51% (95% CI 40-61) in all patients, ORR was 37% in the sporadic papillary RCC cohort; median PFS was 14.2 months (95% CI 11.4-18.6) in all patients; 8.7 months for the sporadic papillary RCC cohort (Srinivasan R et al. JCO abstract. 2020). We reviewed side effects of treatment including but not limited to rash, diarrhea, proteinuria, hypertension and GI bleeding. The second option is sunitinib 50 mg daily four weeks on, two weeks off. The third option is palliative care without further oncologic treatment. At this time, Kevin C Higgins would like to consider all the aforementioned treatment options. Written information regarding erlotinib, bevacizumab, and sunitinib was provided to Kevin C Higgins and his wife to review at home. He will call our office in the next few days to let us know how he would like to proceed."
11/6/2020 - Kevin has decided to go with Option 2. Before he can start this, he has to have an Echo cardiogram and an EKG, which are both scheduled for Friday, November 13, 2020.
11/9/2020 - Kevin is feeling bloated again and is scheduled Wednesday, November 11, 2020 for another Paracentesis.