› Forums › General Melanoma Community › Parotid Melanoma adjuvant advice
- This topic has 26 replies, 8 voices, and was last updated 6 years, 4 months ago by
Marcyazh.
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- December 22, 2018 at 8:47 pm
Hello,
My husband recently had a parotidectomy and neck dissection. He was found to have a 4.5 cm melanoma, well encapsulated, within parotid engulfing an intra-parotid lymph node with no additional lymph nodes found to have any metatisis. So far, he has had a detailed skin exam and retina exam with no primary found and is to have an MRI of the neck and head to look for a primary mucous membrane and I suppose the brain. He is diagnosed 3C. His margins were clear but only 1 cm because of location
He starts Optivo for 2 years on 1/3/2019. His oncologist who is close colleagues with his ENT surgeon is not recommending wide area radiation because of the lymph node involvement and morbidity … his surgeon believes this could be a primary in the parotid and is recommending radiation.
From what we have been told, the radiation involves many temporary side effect but of more concern is that it would “cement” in the nerve damage that could improve with no surgery. He has a moderate downturn of the mouth, jaw problems, numbness (some of which will be permanent anyhow) and his main complaint is that he can’t get the food out of the side of his mouth without using his finger. He is 2.5 weeks post surgery.
We haven’t gotten genetic typing back yet.
Does anyone have any advice or insight as to the decision on whether to have radiation or not? The oncologist does not think it improves overall survival rates, while the ENT tells us not to look at numbers and the radiation may clean up anything leftover if it is a “very rare” primary.
ultimately the decision has to be what he can “own” and not regret; will he regret the side effects if he gets a durable response or will he regret not having radiation if he has a reoccuranxe. He is 61myears old.
thanks,
Marcy
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- December 22, 2018 at 9:19 pm
Hi Marcy,
Those are some tough choices. All I can tell you is that with your surgeon and oncologist not in agreement, I would get a second opinion from another oncologist at another center. I don’t know where you live or what is available in your area, but I think you’d both feel better getting another perspective.
Good luck, whatever you decide.
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- December 24, 2018 at 1:25 am
Thank you. We may head to Mayo for another opinion … but it’s over an hour from our house and much more in traffic. I don’t know that we would choose them ultimately if he remains in 3C or NED and I guess he is surgically NED at this time. Marcy
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- December 23, 2018 at 1:22 am
Is the surgeon a surgical oncologist? If yes, is he/she a melanoma specialist?
Is your medical oncologist a melanoma specialist?
I would get another opinion from a melanoma specialist in this case. A consult with a radiation oncologist might also be in order.
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- December 24, 2018 at 1:23 am
My surgeon was not a melanoma specialist as the FNB showed a mixed carcinoma/sarcoma but he did not think that was correct. And guess what? Melanoma is better than *that*!
There are no places of melanoma oncology specialty from what I can find in the city (Phoenix) and we also have Mayo but it’s really far from the house. The therapies are pretty set now, and set on what insurance will cover and we will still have options for trials. We chose “Ironhood Cancer Center” which has treatment places within a small driving distance from Greg’s work and our home; also it is considered the top radiation oncology places in the city. At that time it was a far gone conclusion that radiation is in his future, and we are leaning again that way now. We see the Radiation Oncologist next week.
For 3C, Opdivo is the standard of care recommended as a single agent. I am seeing trials of Opdivo with aspirin, ipi/Opdivo with aspirin but the ipi/Opdivo two therapy protocol is for stage 1V right now, which I am glad of because ipi can be extremely nasty.
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- December 23, 2018 at 1:31 am
My primary was in my ear canal and spread to my parotid. After a WLE and SNLB that located 2 nodes in parotid I had a complete neck disection also.that included another positive node. After discussing radiation with my team of docs I decided to go that route. My docs at MDA were not in agreement either. The reasons I chose radiation were 1- Avoid a local recurrence-My face and neck couldn't take another surgery 2-At the time doc thought radiation might have some benefit when mixed with immunotherapy. 3-Location of primary and parotid makes large margins nearly impossible.
Side effects have been minimal and my only concern so far is taking care of my teeth. Function of nerves and drooping of mouth were corrected before I started radiation-About 45 days
Susanne
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- December 23, 2018 at 8:11 pm
Hi, can I ask how they found your primary in the ear canal?
I had melanoma in 4 lymph nodes in my neck (cervical nodes, I think that is zone 4) and one in my parotid. My primary has never been found. They say it most likely was on my scalp under hair and defeated by my immune system after it had spread. However, I’ve always wondered about ear canal and sinuses but I figured that anything there would show up on a PET scan or CT. Thanks!
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- December 23, 2018 at 8:25 pm
Greg is having an MRI of the head neck to look for those kind of things is what I understand. I know an MRI of my hand during a break even showed this very small ganglion cyst … plus wouldn’t the PET find it and least in the ear? Dizziness and pain would be a sign. Greg is and probably will remain “unknown Primary” also, from what I have read, the primary can be the parotid or a lymph node although rare because melanocytes have proven to be found in either one, just throwing out what I have researched … Marcy
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- December 24, 2018 at 2:23 am
I was treated for an ear infection with drainage for about 7 months by local ENT docs before discovered. I lost hearing in the ear from the blockage of the tumor. It required a significant surgery just to obtain a biopsy. The pics from the scope at MDA looked like an infected mole on the skin in my auditory canal. The tumor showed up on CT scans but the local ENT docs had never heard of cancer originating there.
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- December 23, 2018 at 9:49 pm
Suzanne, it sounds like your case is close to Greg’s also, with the same decisions. I am glad your facial nerves healed before radiation. It’s been 2.5 weeks and there is some improvement with Greg.
did you have radiation at the same time as Opdivo? The oncologist wants to start a couple rounds of Opdivo first before radiation, but that would put it at around 10 weeks after surgery. Sigh.
how did you tolerate both during that period? I know the radiation is somewhat worse. I also worry about greg’s dental because the Oral Surgeon said previously that he didn’t want to remove greg’s Bottom wisdom teeth because the roots wrap around the nerves. With decay down there, that might prove a problem though perhaps he could have a crown only removal which I understand is an option in that case.
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- December 24, 2018 at 2:51 am
I had radiation first with a 1 month delay before starting Nivolumab.
Radiation for me had few side effects other than peeling skin and minor temporary hair loss in a 5cm spot. A stent was created that protected my tongue but my left jaw was unprotected. I see a dentist every quarter and all dental work is done at MDA to avoid problems.
Nivolumab for me has been difficult. Major AE's occurred including colitis, diabetis, myocarditis, and rheumatoid arthritis among other minor problems. I have been on high dose steroids, Infliximab, or Actemra since March 2018. I have been NED since my surgeries in July 2017 and would take Nivo again if I had a recurrence. Well worth the side effects for me.
Susanne
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- December 24, 2018 at 5:02 am
Oh my! I am sorry your Nivo effects were so bad … they have Greg scheduled for two years. Most people are saying they are only fluish and achy!
yeah, I will have to get a consensus as the oncologist wants to do a couple round of nivo first then radiation ..
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- December 24, 2018 at 3:08 pm
Grade 3 or 4 adverse events that require stopping treatment occurs in less than a 10% of patients. I was just letting you know that even if you get major side effects from Nivo it's still worth it compared to the high rate of recurrence for stage 3C patients.
Susanne
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- December 23, 2018 at 1:04 pm
Hi Marcy, I had my parotid and a neck lymph node dissection. My oncologist recommended radiation to possibly reduce recurrence in the area. The radiation only decreased my chances of recurrence by 33% according to the radiation oncologist but everyone at the time including me believed it was worth it.
The facial sagging from the parotidectomy will go away with time. I remember I couldn’t blink or smile on the right side of my face for a little while. Most significant lasting impact is opening my jaw completely. I’m sure radiation didn’t help with that issue.
In my case I finished radiation on July 5th and on July 27th CT scans detected nodules in my right lung. I had a very nasty nodular melanoma, it moved pretty quickly and I had 4 additional lymph nodes with mel.. So did radiation help? I started Keytruda on August 10th and was NED on 10/11/17 after 3 treatments. So there is hope.
Take time and enjoy the holidays.
Bill
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- December 23, 2018 at 9:41 pm
Thanks, Bill .. your story seems closest to Greg’s although we haven’t found his primary. I am assuming it was a regressed head cutaneous primary … I told him that it took you 5 or 6 months for nerve generation after radiation and that is helping him with the decision. I think we misunderstood the surgeon in thinking that radiation stops the recovery … we thought it permanently stopped it but it sounds like it may just stop it for the duration of the radiation. I am sure the radiation oncologist will clarify … thanks so much for the input and I looked back at some of your other posts even before I posted this
🙂 Marcy
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- December 24, 2018 at 5:05 am
Thanks, I would … let’s touch base right after Christmas. Is there a private message capability? Then we can exchange contact info … I don’t know if I can see your email address.
have a relaxing Christmas or other holiday that you celebrate!
marcy
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- December 24, 2018 at 5:48 am
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- December 24, 2018 at 1:58 am
Biol, I have read that for head/neck radiation that there are dentists that can 3D print a stent to cover the dental work and prevent some of the damage. Did you have this done or do you know about this?
Also, I read about the radiation damage to the jaw and that it is caused by “fibrosis” caused by the radiation. I have seen a site that offers a “jaw stretcher” device that is used to exercise the jaw I think during and after radiation to keep it from developing or break down the fibrosis. Have you heard of this?
marcy
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- December 24, 2018 at 3:58 am
Hi Marcy, unfortunate timing for me so I didn’t have dental covers. My teeth seemed to survive the radiation well so far but I don’t have a lot of dental work. I did develop sores on the inside of my mouth and tongue that may have been reduced if I did have dental covers. Also gad sores in my throat. Side effects from the radiation started occurring at day 10 of 20. Oral Dexamethasone rinse helped a lot. This is not a cakewalk by any means.
spoke to my dentist about jaw exercises but he wasn’t familiar. My jaw has improved a little, no pain just doesn’t open fully. Again you or your husband can contact me.
Bill
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- January 10, 2019 at 4:53 am
Hi Bill, sorry I haven’t posted or contacted you though I really appreciate your advice and hope I still can later if more questions arise. We are going ahead with Opdivo and radiation starting tomorrow. All the insurance follow up, co pay cards and such are lined up! I do wonder why some people respond with Opdivo and others with Keytruda …. so much to try to wrap my head around. I hope your holidays were good and again, you offer us hope and I really appreciate it!
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- December 23, 2018 at 1:24 pm
Sorry you and your husband are dealing with all this, Marcy. First and foremost, make sure he is seeing a melanoma specialist. I know all of this sounds a bit like a foreign language. I put together this primer of melanoma treatment that may help (with a glossary of ancronyms at the end):
Additionally, while location and physical structures can affect how and if radiation is used, we KNOW that radiation – when combined with systemic therapy (like Opdivo) – provides better responses for melanoma patients than either therapy alone. Here are zillions of reports:
And finally, we know adjuvant therapies work!!! More reports:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant+immunotherapy
While I know all this has been rather horrible and difficult – have hope!! After having cutaneous lesions removed along with a positive node in 2003 (none of the current melanoma treatments were available at that time) then brain mets zapped with radiation and a lung met removed surgically in 2010, I was treated with adjuvant Opdivo from 2010 to 2013. With no further treatment, I remain melanoma free today.
You can do this. Ask more questions as you have the need. I wish you and your husband my best. Celeste
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- December 23, 2018 at 8:18 pm
Thank you so much for your advice … I am in Phoenix and although we have some great cancer centers, even mayo none of the Oncologists appear to be melanoma “specialists”. One of my best friends and life long friend passed away from a brain bleed due to a melanoma met too close to the brain stem during radiation at Mayo so at least I have been researching with her .. she had a lesion removed 15 year prior to metastasis in her lung.
We are currently at ironwood cancer center which is top in the city in radiation therapy and see the radiation oncologist next week, and may get a second opinion at Mayo.
thank you for your quick responses and I am sure I will be asking more questions .. Bill and Sue, you give me hope and iaddition to hope from bubbles, you have a wonderful blog.
have a happy holiday … we will take a break until next week … my husband is feeling really good and I sent him outside to work on some easy yard work … he has to keep busy
Marcy
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- January 8, 2019 at 11:44 pm
Hi there my father just had the exact same surgery within the parotid 2.5cm tumor with no lymph node involvment had surgery 3 weeks ago no problems with jaw or mouth just shoulder pain and cant lift it very high eithout discomfort will be going to do radiation followed by immunothreapy..but confused as he was stage 3c with no lymph node involvment -
- January 10, 2019 at 4:49 am
How is he doing? This is the first time looking at the post for awhile … swamped and overwhelmed. My husband is starting radiation and Opdivo tomorrow. We have also gone to specialty dentists and are having flouride trays made up. Greg’s tumor was quite a bit larger but he is the same stage. Healing thoughts and intentions for everyone thanks for commenting.
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