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August 15, 2013 at 1:26 am #21521aquamakParticipant
I haven’t posted for a while but I wanted to give an update. It has been a long, stressful year since my original diagnosis in September 2012. If you recall, a mole began to grow and change on my left neck. After an inexperienced physician assistant at my local dermatologist told me it was a benign angioma and shaved it off, the pathology came back as invasive malignant melanoma (Breslow depth 1.5 mm at least, Clark level I, mitotic rate of 5 with no other “bad” characteristics). I immediately went to Memorial Sloan Kettering Cancer Center and saw Dr. Steven Wang and on 10/18/2012, I had a WLE and SNB performed by Dr. Jay Boyle at Sloan. Margins of WLE came back clear, final Breslow was 1.6 mm and a single Sentinel node removed, negative for melanoma. Entire body PET scan and head CT clear also. I was back to work a week after my surgery with no complications. The second punch came on 10/29/2012 when Superstorm Sandy devastated the Jersey Shore and I began working the restoration efforts 7 days a week, 12-16 hours days at my employer, a local utility company.
During a much-deserved trip with my family right after Christmas, I noticed a lump right under my left ear above the scar from the WLE. I saw the oncologic surgeon at Sloan on 1/6/2013 and he advised me that it was most likely nothing as I had told him I had a small infection at an ingrown hair in my scar. Nevertheless, he had an ultrasound done right then and it came back as a slightly enlarged lymph node but nothing alarming. He also performed a FNA, which came back benign. I went on, assured it was nothing. In April 2013, during a follow-up visit with the surgical oncologist, I told him the lump had not gone away and seemed to get larger. He became more concerned and sent me for a full-body PET scan, which unfortunately came back showing 2 areas around the lump as suspicious for malignancy. He then performed a very intense, painful FNA of the lump and scheduled me for a neck dissection and removal of my left parotid gland. The day before the surgery in May 2013, the nurse called and told me the FNA biopsy came back benign. I was still scheduled for surgery the next day however, they were first going to perform an excisional biopsy of the lump, do a frozen section and if nothing was found that was it for the time being. If they found anything, they would perform the original surgery. Unfortunately, I woke up after surgery with a drain and a scar from the top of my ear to the mid-line of my neck. 68 lymph nodes and surrounding tissue as well as my left parotid gland were removed.
The pathology came back 1 of 68 lymph nodes positive for melanoma plus 2 nodules of melanoma possibly infiltrating a nerve. The perineural invasion later proved to be false after further testing but the nodules were considered in-transit metastasis. This put me from a fairly “safe” stage 1B to a “serious” stage 3C in just 2 months considering when I first noticed the lump. The doctors were somewhat baffled about the “elusiveness” of the recurrence and that the melanoma showed up as “spindle” cells considering my original site was primarily epitheloid cells. In addition, the pathology of the surrounding tissue showed the possibility that I may also have chronic lymphocytic leukemia (CLL).
So after additional visits to a leukemia specialist at Sloan, the CLL was ruled out but a pre-cancerous condition was considered however additional testing failed to prove that so a big sigh of relief on that front.
I was referred to Dr. Sandra D’Angelo at Sloan’s Melanoma unit for consideration into a clinical trail. Two trials were offered, one for a Phase 2 trial of Dabrafenib as adjuvant treatment for Stage 3C melanoma patients with resected (removed) melanoma and the other for a Phase 1 trial of a dendritic cell vaccine against melanoma. Unfortunately, I proved to be BRAF negative so the Dabrafenib trial was out. I was very down about this but Dr. D’Angelo reassured me that Yervoy and the new PD-1 trials are better and more effective if I should have recurrence in the future and these are not BRAF dependent.
I was accepted into the dendritic cell vaccine trial and will have my stem cells collected on 9/11/2013 with my first of 5 vaccines to be given on 9/25/2013. I chose to do the trail because frankly I feel like a sitting duck and live in fear of this disease every day. I know that I will most likely have a recurrence but I want to give my self every chance to fight as I have a wife and 2 young children and I need to beat the beast. I use the term “Mela-No-More” and live and hope by the words of Dr. Wolchuk from Sloan as he presented at the recent ASCO conference: “We have thrown the books out the window on melanoma and melanoma is no longer a death sentence. It will become a chronic, manageable disease.” I prayer every day for this and all afflicted by any cancer.
So, I wait for my 6-month PET scan in late-September and hope the trial provides some benefit to me. My recent blood work all came back good with normal LDH levels and my full-body skin exam done today by Dr. Wang at Sloan was also good.
Please let me know if you have any suggestions for me going forward.August 15, 2013 at 11:22 am #62154Catherine PooleKeymaster
I’m saddened to read your story, sometimes melanoma can be unpredictable and require a long journey. But I am heartened by your wonderful fortitude at getting through all of the ups and downs. I think you are in good hands at Sloan and hope all continues to go smoothly now. Keep us informed of the trial results too for others. Take good care of yourself too!
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