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In J.B.’s Words: A Face of Mucosal Melanoma
J.B. Ward is one of the 1% of melanoma patients with mucosal melanoma. She and the MRF have partnered to raise money for an educational video of mucosal melanoma patients to educate others about this extremely agressive cancer. Click here to learn more about and contribute to her efforts to help stop this especially deadly melanoma.
I was 31 when I was diagnosed. My husband and I had just moved to Tennessee for his job and I was busy taking care of an active toddler, contemplating returning to work as a clinical health psychologist and had recently become pregnant with our second child. A few months before I became pregnant I had noticed a vaginal lump that was beginning to protrude. I called my former OBGYN and the nurse told me that it sounded like bladder prolapse and recommended Kegel exercises. Despite my best efforts, the protrusion got worse and I sought a local gynecologist but was unable to be seen as a new patient for a couple of months. Once I saw the OBGYN, she said it was not prolapse and referred me to a urologist. After seeing the urologist a surgery was planned to remove what was thought to be a cyst. As part of pre surgical preparations, my OBGYN performed a biopsy to rule out anything concerning. It turned out to be something very concerning.
I was diagnosed with primary vaginal mucosal melanoma in January 2016 after being referred to a medical oncologist and undergoing imaging. There was no evidence of spread and a surgery was scheduled, while I was pregnant, to remove the vaginal mass. I did not have a sentinel lymph node biopsy but the pathology from the removal indicated that I had an aggressive type of melanoma and despite no other evidence of metastasis I was give a 5% chance of surviving 5 years.
The Treatments and Side Effects
I was counseled that the current treatment options available for mucosal melanoma might increase my survival but would not allow me to continue my pregnancy. There was a chance the disease would be fatal during the course of my pregnancy or spread to the baby. We consulted with two melanoma specialists and a maternal fetal specialist and ultimately made the very difficult decision to terminate the pregnancy and begin treatment right away. I decided to be treated at MD Anderson Cancer Center (MDACC) in Texas given their experience with this rare form of melanoma.
I underwent three rounds of adjuvant biochemotherapy at MDACC and lost a lot of weight and all of my hair. My toddler stayed with my family during the week long inpatient stays and also stayed with me during the week after my return while I recovered. The treatment was difficult and I required one blood transfusion and a delayed third round. My CT scans immediately following treatment in May 2016 showed am enlarged lymph node and I pushed for an immediate biopsy which revealed that the melanoma had already spread. By the time we were able to get consults in place to potentially remove the node for an experimental treatment using TIL, the mass had doubled in size and was encasing a major artery, and therefore inoperable, and at least two more tumors were evident.
At this point I found myself needing additional support and got connected with a Facebook page for mucosal melanoma patients and caregivers and learned about the Melanoma Research Foundation (MRF). I also began my own blog to update my friends and family about my health and share my experiences with others. These connections continue to be very important to me.
I began a combined immunotherapy (nivolumab and ipilimumab) right away. I tolerated the first two doses very well but had increased pelvic pain so we did an interim CT scan in July 2016 that reveled a partial response to therapy with the main tumor significantly shrinking and the other tumors no longer noted. This was fantastic and unexpected news but the joy was short-lived as I began to have significant auto-immune side effects after the third round of the combination therapy including thyroid problems, vitiligo, hepatitis, and severe nausea and was pulled off and put on an 8-week high dose steroid taper to prevent further damage to my liver. During the steroid taper the mass grew again and I began single agent nivolumab in November 2016. At first, my liver enzymes climbed again and there was concern I would no longer be able to use immunotherapy.
With the growing concern for my liver as a potential barrier to immunotherapy and an interim scan that showed further growth of the tumor I sought a second opinion at Mayo clinic and the recommendations from this visit were gratefully accepted and incorporated into my treatment plan at MDACC. The tumor was no longer encasing an artery so we decided to move ahead with a multi-team surgery to remove the remaining mass for TIL. In order to complete a surgery in this area there were five specialists involved including urology, oncology surgeons specializing in melanoma and gynecology, a vascular surgeon and radiation oncology for intraoperative radiation (IORT). This was the first time at MDACC that IORT had been used with excision of a melanoma mass and I was commended by the melanoma surgeon for bringing an outside recommendation from Mayo and pushing for this option for my surgery at MDACC.
The surgery was completed in January 2017, almost exactly one year after my initial diagnosis. The surgeons removed the mass completely and noted that it appeared to be almost entirely necrotic! IORT was used along my pelvic wall where the mass was removed, leaving me at a higher risk for pelvic fracture for the rest of my life. There were some active areas in the tumor that will be used for TIL, should I need that treatment in the future.
Looking Toward the Future
Right now I am taking a break from treatment and will return to MDACC at the end of February for more scans and treatment planning.
I have no family history of cancer so being diagnosed with vaginal mucosal melanoma has been a very unexpected and eye-opening experience. It has inspired me to partner with the MRF to increase awareness of mucosal melanoma.
Together, we have launched a mucosal melanoma fundraising campaign and the proceeds will be put toward an educational video of mucosal melanoma patients that can be used to educate and spread awareness of this aggressive disease. I may not have been misdiagnosed and unable to get appointments for so long if this disease weren’t so unknown. No one should have to feel alone after receiving a melanoma diagnosis and this video will shine a light on all of the different faces of mucosal melanoma.
– Written by J.B. Ward