Jacob Menagh

First post: Dec 3, 2021
Welcome! We are not asking for any donations at this time. We are only using this site to keep our family and friends updated. Please check back periodically for news - and don’t forget to check out the gallery! I apologize for not updating sooner, it’s just that sometimes fighting cancer is a war, not a battle. Here is a recap:

Jacob was diagnosed with Stage IIa testicular cancer in August 2020 at the age of 20, after discovering a new lump in his testicle earlier that year. Due to COVID19, his care was delayed for several months so that the cancer grew unchecked for most of the year. After an initial misdiagnosis in July 2020, he was sent for an ultrasound where he received a preliminary diagnosis of cancer. His case was then fast-tracked for surgery by his urologist, and he underwent radical orchiectomy (removal of the entire testicle and spermatic cord). CT scans then revealed the cancer had spread into his abdominal lymph nodes. His tumor was found to be mixed-germ cell non-seminoma w/95% embryonal carcinoma, a particularly aggressive sort. (TC, like many other cancers, we learned, is really 6+ different cancers, each of them with a different treatment protocol).

I immediately joined a TC Facebook group and another for caregivers (Mama Bears 🐻💜🙏🏻) where I learned so much about TC from those who had been thru it, some who are still fighting, and some whose sons unfortunately didn’t make it. That is also where I learned about the country’s top testicular cancer expert, Dr. Lawrence Einhorn of Indiana University. “Dr. E” as he is affectionately referred to, as a young doctor in the 1970s, did the research to help develop the platinum-based therapy for TC (as well as lung cancer and others), bringing the TC survival rate from 10% to 95%. Dr. E achieved national recognition when he successfully treated champion cyclist Lance Armstrong in 1996 who was diagnosed with Stage III TC. We began to have hope.

I reached out to Dr. Einhorn first in October 2020, and requested a consultation on Jake’s case. He responded within 24 hours, even giving me his home number and telling me to call him on a Saturday afternoon because he just happened to be home. He agreed with the local oncologist that he had good risk disease and 4 rounds of EP chemo was the way to go, as long as his tumor markers remained low.

October 2020 - So, Jacob was fast-tracked for sperm-banking, and 3 days later, surgical implantation of a port-a-cath in his upper chest. Four days later, he began the first of 4 rounds of EP, (etoposide and Cisplatin), traveling over 200 miles each day (for one week a month to do so). Jacob lost all his long, beautiful blonde hair within weeks and suffered from constant nausea which took months after to abate. He also had a blood clot scare last Thanksgiving, (in his neck and because of the port), so they put him on Eliquis for about 6 mos.

A sweet friend did a GoFundMe for him and it raised over $4,400 to help with the cost of sperm banking, and travel, (which is not covered by insurance), and his deductible and out of pocket costs. We are so grateful to our family and friends.

December 2020 - Jake celebrated his 21st birthday with a cocktail 🍹 of chemo drugs 🥴 but the nursing staff at the NLCC were very sweet and brought him cake, balloons, and sang him HBD.

January 2021 - Jacob completed rounds 3 and 4, feeling exhausted and having to deal with leg pain (caused by Neulasta), headaches (caused by the Claritin to combat the leg pain) and constant nausea, which persisted despite taking Ondansetron and Promethazine around the clock. It took several months after completion of chemo for that to dissipate. Jacob finally got to ring the bell! 🔔

April 2021 - Jacob was declared to be in remission by his oncologist.

July 2021 - An enlarging abdominal lymph node (9mm) was noted on Jacob’s 6-mos. CT scan, however his physician never told us this. His tumor marker had also begun to rise slightly, but we were not told this either. Over summer, his oncologist left the state and moved to Oklahoma.

October 2021 - Jacob’s routine 3-month lab work showed that one of his tumor markers had continued to rise, probably indicating the return of disease. Another CT scan was ordered and it was discovered that the lymph node had continued to grow, now to 1.3 cm. A PET scan was ordered and showed hyper-metabolic activity in the retroperitoneum (lower abdominal cavity) near the aorta, but no other areas lit up. The liver, lungs, and brain were all clear (thank 🙏🏻 God).

After seeing a new oncologist, he was referred to UNM hospital in Albuquerque for further treatment. This is a 3-hour drive from where we live, and we waited about a month to get in to see their specialists. Travel is another expense that is not covered by insurance, however it is sometimes included as a tax write-off.

After learning that this recurrence was missed by his oncology team, I immediately emailed Dr. Einhorn again and requested his opinion about course of treatment. His advice is based on the NCCN.org (National Comprehensive Cancer Network) Guidelines, which he helped develop, and which all doctors consult. Dr. E stated that the correct course of treatment for early-stage recurrence (in this case, in the abdominal lymph nodes) was RPLND (retroperitoneal lymph node dissection) surgery. His opinion is like gold to us.

November 2021 - Thanksgiving week was not a happy occasion for us. Jacob saw a new urologist at UNM who shocked us when she stated that he would not be having surgery, but salvage or adjuvant chemotherapy. The oncologist was not there as she was on vacation that week. We were both stunned, angry, and confused as we left Albuquerque to return home. “Review by the tumor board” was supposed to be done BEFORE we ever stepped foot in this “Comprehensive Cancer Center,” a distinction earned by places of excellence. The oncologist was to review his case and call the following week. I emailed Dr. Einhorn again and told him what they had said and he doubled down on RPLND surgery. We also discovered that this oncologist had studied under Dr. Einhorn, and he said “she will agree with me.” He told me to share his emails with her and tell her to call him. We were able to do that thru the patient portal. (Continued in Updates.”)
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