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Please advise: What should we ask for?

Please advise: What should we ask for?

Posted By
Affected
8/13/2019 9:33pm
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Replies: 7

Hi, My husband had a WLE, parotidectomy and CLND 2 weeks ago. He's recovering well (we think). Sorry for not posting sooner, but had trouble getting pathology reports. Finally got them today via a freedom of information act, but doctor's appointment to discuss future treatment is tomorrow; therefore in a bit of a panic cuz don't understand reports well enough to know what to focus on or what to ask for. We live in Europe and it's past 2 in the morning so don't have too much time to research before seeing the doctor in a few hours.

According to report, my husband's melanoma was nodular type, Clarke level of V, Breslow thickness of 17mm, ulceration present, no regression identified, lymphovascular invasion not identified, perineural invasion not identified, mitotic rate of 19 per 10 HPF, micro satellite lesions not identified, closest margin of 14mm (invasive), deep margin of 2.5mm (invasive), 2 involved lymph nodes out of 43 retrieved (one of which is involved due to direct extension), Level II-IV lymph nodes from separate right neck dissection are negative for metastatic melanoma, pathological stage: pT4b N1

One of the nurses mentioned radiotherapy, but should we be asking for immunotherapy or targeted therapy instead? We haven't been able to locate in any of the reports whether my husband's melanoma has the BRAF, NRAS, or KIT gene mutations. Should this not be furnished to us? If anyone has had a similar melanoma experience to that of my husband's or has any tips as to what to do as a next step, we would greatly appreciate any such advice.

Thank you so very much.

Affected wife

I'm guessing radiation therapy is the next step, atleast it was for me after a similar surgery. My radiation oncologist and surgeon indicated that in the head neck region it can be difficult to get sufficient margins and radiation would reduce the chance of local reoccurence. They likely should test the tumor for the BRAF mutation before determining the next step on the immunotherpay or BRAF/MEK therapy.

Steven

Hi Steven,
Thank you for sharing your experience. We finally met with both the radiotherapy oncologist and the medical oncologist this last Tuesday. Received a very detailed explanation as to the possible side effects of radiotherapy and immunotherapy with death being one of the possible side effects. Due to the aggressive specs of my husband's resected tumor, the recommended plan is for 2 gy 5 days a week for 6 weeks, and Nivo for a year. We were told he is BRAF negative and therefore I think the targeted therapy won't be an option. Was your radiotherapy dosage similar to that which my husband is going to have? And if so, what were the side effects? Thanks once again for your support.

I'm guessing radiation therapy is the next step, atleast it was for me after a similar surgery. My radiation oncologist and surgeon indicated that in the head neck region it can be difficult to get sufficient margins and radiation would reduce the chance of local reoccurence. They likely should test the tumor for the BRAF mutation before determining the next step on the immunotherpay or BRAF/MEK therapy.

Steven

I am sorry you have these results and you and your husband are dealing with all of this. As you probably already know, ulceration is not a good prognostic indicator and positive nodes (if there is no other spread) puts your husband as a Stage III melanoma patient. If there is no other spread, and his most recent surgery rendered him NED (having 'no evidence of disease'), he is eligible for FDA approved adjuvant therapy.

I believe I shared this primer with you back in July. It explains the basics of current melanoma treatments, including immunotherapy, radiation and targeted therapy: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melan...

Both targeted therapy and immunotherapy have been used with positive results as adjuvant therapy. However, the patient's tumor must be BRAF positive for targeted therapy to work so knowing your husband's BRAF status is required. If that has not been evaluated, I would certainly ask that it be done. Here are tons of articles on adjuvant therapy: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adju...

Radiation alone is not particularly effective for melanoma. However, when it is COMBINED with immunotherapy the results are better than with either treatment alone. Here are tons of reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radi...

I hope this helps. Celeste

Hi Celeste,
Thank you very much for all the information you sent me above. It helped so much when we finally met with the oncologists for the first time this last Tuesday (6 weeks after the operation).. It's been so difficult waiting for the appointments knowing that with each week that passes any remaining melanoma cells that could have been left over from the tumor resection could be multiplying and spreading. We met both the radiotherapy oncologist and the medical oncologist who have recommended adjuvant therapy due to the aggressive specs of my husband's resected tumor. The plan is for 6 weeks of radiotherapy; 2 gy each session; 5 days a week and Nivo(Opdivo) for a year. I just hope this will work to avoid a recurrence which the doctors have said has a high probability. Celeste, thank you for all your help and all your postings. I read the one where you mention how tired you are. I just want you to know that I pray that you will realize how much you help those like me, who but for your support and guidance, would be completely lost. My sincerest thanks and prayers that you may live into your 90's at least.

Hi affected,
Sorry for the delay in replying, we have been off board for several weeks. My husband had a 22 mm nodular melanoma on his upper back (his had no overlying skin component, so they couldn't tell if this was original location or from an unknown other mole on his body). His pathology report looked similar to your husbands including higher mitotic rate, however he did not have ulceration due to the unique way his melanoma was presenting nor did his Sentinel Lymph nodes show any melanoma, but melanoma is very tricky, can travel in two ways, through the blood and through the lymph systems. Unfortunately, the immunotherapy wasn't approved then for adjuvant therapy when he was diagnosed and had surgery (2014), but I would have pushed him to do it if they did for sure. He has the NRAS mutation.

They should definitely be testing your husband's tumor for mutation to see if he would benefit from any targeted therapy.

As Celeste has noted, the data is showing combined is better than either radiation or immunotherapy alone . Because your husband's original melanoma is considered high risk (depth, ulceration, mitotic rate) for recurrence, I would want the immunotherapy as adjuvant therapy even if they find nothing else.

Jackie <3

Hi Jackie,
Thank you very much for your advice. The oncologists have recommended both radiation and immunotherapy, so your final comment of what you would want for your husband really puts my mind at ease at this very difficult time when I feel I have sunk into a state of numbness. Also, although the doctors tested for the BRAF mutation which turned out to be negative, they never mentioned anything about a NRAS mutation. I will definitely ask about it when we next meet the doctors. Again, thank you very much for sharing and being so specific, and I hope your husband is doing well. Sincerely, Affected