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2020 update – Just had my 7 year PET/CT scan on 5/4 and it showed a foci of FDG avid attenuation in the parotid surgery bed as well as 4 enlarged left neck FDG avid lymph nodes. The lymph nodes are not large (i think 1.5 CM the largest) and the SUV relatively low (2.1-3.9) compared to the 7.7 I had 6+ years ago when I had my 1st occurrence. My Melanoma specialist is visibly upset as I have been NED for 6 years and have had no recurrences. I had a left neck dissection and parotidectomy with 60+ lymph nodes removed and only 1 Lymph node involve with no extra capsular spread. I also participated in a dendritic cell vaccine trail but no other adjuvant therapy.
When we had our video-visit after my test I asked her if my infected left eye had any bearing on this and she said that having the infection was reassuring so instead of immediately going in for biopsies, etc. she decided to wait and re-scan in 3 weeks which will be on 6/1. In the meantime, I had a face-to-face (w/mask) exam by my eye MD and what was though to be bacterial pink eye turned out to be viral herpes simplex in my left eye which he said could definitely fire up the lymph nodes especially with reduced lymph nodes and altered lymphatic drainage due to the past surgery. So i sit and wait with extreme anxiety. I am hoping and praying for a positive outcome but I am very worried about it as I have a bad feeling.
PET/CT scans were good! One small lymph node in neck that will be evaluated again in 3 months that is most likely reactive due to the allergy and sinus issues I’ve been having. My doctor is not concerned but wants a “clean” report but she has agreed 5 years NED!
I participated in a Phase 1 dendritic cell vaccine at Memorial Sloan Kettering in NYC in 2013 as I am currently a Stage 3C doing “watch & wait” after a neck dissection w/removal of 68 lymph nodes (1 positive) and 2 small in-transits next to the lymph node. As far as how it was explained to me, the proteins are specific to melanoma and are usually suppressed so the body’s immune system does not recognize melanoma as “bad”. The proteins allow the dendritic cells to be programmed to recognize melanoma as an invader and attack and destroy it. The research doctors at Sloan were very excited and encouraging since the previous trial (which did not have the melanoma-specific proteins) showed encouraging results. This proteins make the dendritic cells specifically target melanoma and are targeted to each individual since they are grown from your own stem cells.
I am optimistic and will be approaching 1 year NED on 5/10/14. Even if I do get another recurrence, the trial has also shown a “vigorous” response to immuno-therapies (ipi, PD-1, etc) inpatients who had previous dendritic cell vaccines. Let’s all hope they are on to something here!
Great news – scans clear. 9 months NED! I know it’s a short time, but now i”m on the road to 1 year. Thank you all for your well wishes and the best of health to everyone. Well you are still all stuck with me here in the Stage 3 forum (and believe me I am glad to be here).
6-month PET scan and brain MRI clear-NED!
UPDATE-went from better to worse. I was just starting to calm down with the initial pathology and then I got the full picture when I went to the surgeon for follow-up this past Wednesday. Still 1 node positive with no extra-capsular extension however there were also 2 small nodules containing melanoma next to the lymph node that were suspicious for perineural (nerve) invasion. Further testing failed to show perineural invasion so that was ruled out but the nodules are still an issue. Interestingly, the lymph node and 2 nodules showed “spindle cell” melanoma. Spindle cells were not seen in the original melanoma excised in October 2012. The 2 nodules are being considered in-transit metastasis so technically I am now a Stage 3C. My surgeon said they typically do not re-stage for a recurrence. Since none of the nodes or nodules were over 2cm, radiation is not being recommended.
Now for the new curve ball. According to the pathologist’s report, there were abnormal lymphocytes seen in the skin, soft tissue and adipose (fat) tissue overlying the cancerous lymph nodes and nodules. The pathologist sent them for review to a hemo-pathologist who tested them further and stated that chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) cannot be ruled out and recommended correlation with my blood work and close observation. The same type of cells were also seen in another non-melanoma infected lymph node. The surgeon wasn’t overly concerned as the report also mentioned initially that this could represent “procedural artifact” (i.e. scar tissue or reactive tissue).
In the meantime, an appointment was set-up with Dr. De Angelo at the MSKCC melanoma/sarcoma medical oncology group to see if there was any treatment she recommended. I met with her on Friday and was very knowledgeable. She felt that the CLL/SLL may be a “red herring” but never the less, she has me seeing a hematologist/oncologist and I am awaiting an appointment. CLL/SLL can be an indolent disease but obviously it is not good to have along with melanoma. With regards to the melanoma, she told me that Interferon is typically prescribed but MSK does not use it and we all know the reasons. She offered me 2 options: watch & wait or clinical trials. I am eligible for 2 clinical trials. One is a Phase 2 trial of Adjuvant Dabrafenib in Patients with Surgically Resected Stage 3C Melanoma and the other is a Phase 1 trial vaccine of Immune Response to autologous Langerhans-type dendritic cells electroporated with mRNA encoding. Now the dilemma. Not sure how to decide. My melanoma is being tested for the BRAF mutation for the Dabrafenib trial (hopefully it is +) however, if I do have CLL/SLL, I cannot participate in either trial. So I’m not sure how much more I can take as it is just one bad thing after another. I’ve been knocked down many time but I am really struggling to get back up from this. Thank the Lord for anti-depressants and Xanax. Any help or input on the clinical trails would be appreciated.
Thanks Linny for your encouraging words. I had my left neck dissection and parotidectomy last Friday (5/10) and was subsequently discharged on Monday after the drain was removed from my neck as it was no longer draining. Felt good to go home! I must say being in a major cancer hospital like MSK is a humbling experience. Remember, there is always someone else with something worse than you. Even with this being said, all of the patients I met were very upbeat and in good spirits. I have had no real complications except some swelling and partial paralysis which is getting better each day. I spoke to my surgeon’s nurse today and she read me the pathology report-68 nodes removed, MM found in 1 node no extra-capsular spread, all other nodes, parotid gland and tissue clear. I was told this is good news. I see the doctor for follow-up on Wednesday and we will discuss radiation and possible clinical trial. I should be allowed to return to work this Thursday. I’m ready to fight this! Thank you all for your replies. Catherine: yes I am still being seen at Sloan. I see Dr. Boyle (Head & Neck Surgical Oncologist) and Dr. Stephan Wang (Dermatological Surgeon) at Sloan’s Basking Ridge NJ facility. I am having a neck dissection & parotidectomy on Friday at Sloan in NYC on Friday. Dr. Boyle is doing the surgery. I am very nervous and it is really taking a toll on my wife and children.
I used the wrong term in my original posting. Dr. Boyle said I might need radiation and that my case would be referred to the medical oncology group for melanoma at Sloan In NYC for possible treatment. I know chemo is not the proper term and immunotherapy is used. I’m not sure if I will qualify for anything.
I guess my question is what’s next? Is now more of “when” I will get another recurrence as opposed to “if” I will get another recurrence?