› Forums › General Melanoma Community › HELP! Advice Needed!
- This topic has 7 replies, 4 voices, and was last updated 4 years, 7 months ago by
Bubbles.
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- August 24, 2019 at 12:55 pm
Hello All. Please bare with me as I seek some advice and comfort. My grandmother had a 0.2 mm melanoma removed from her forehead in 11/2015. It was “mostly in-situ” and no scan was done on diagnosis. Every 3 months she went to derm for a body check and saw the surgeon 1x per year – he did a chest xray – stating that when melanoma comes back – it goes to the lungs -_-. Top rated surgeon, no less. I do not think he was aware of the literature stating that melanoma on the forehead typically returns to the brain – and on the scalp is typically a worse prognosis (from what I can find).The past few months – I have been noticing some mild cognitive changes and I requested she go see neurology. After some resistance, on MRI she was found to have 8 lesions on her brain. They were hemmorragic and she was sent to the hospital. She was discharged and I brought her to Memorial Sloan and they ordered PET scans. She has 8 lesions in the brain – one in lung and one possible on the adrenal. She feels “fine” – and doesnt see the cognitive changes that I see. Through her eyes, she is mostly asymptomatic.
She had a lung biopsy of the lesion on the upper right lobe and it was found to be positive for melanoma.
She is being following with neuro-oncology and oncology. She begins ipi/nivo on Monday. She is 82 – but prior to this was driving, working – an active 82.
Please tell me something positive! I just cannot believe we are here from 1 lesion that was in-situ? Sigh. I am terrified.
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- August 24, 2019 at 1:55 pm
Here is a recent Onclive video (June 2019) of best practices in treating brain mets. Each case is unique and issues like size of tumor and location when it comes to the brain are considered by oncology team when making treatment decisions. I had 3 small brain mets treated by cyberknife in 2013 and nivo treatments via clinical trial after qualifying post brain radiation. There is hope that the combination of ipi+nivo can produce long term success or control of brain mets and she is at a good hospital which can make a big difference!!! Good luck!!! Ed https://www.youtube.com/watch?v=gDu3x9xhH-U-
- August 24, 2019 at 2:12 pm
Thank you! I am glad to hear you are doing well … trying to be positive.Her lersions are mostly small – some very small (mm) and the largest being 1.6 cm in her temporal lobe and the second largest in her occiptal region 1.5cm – the others are smaller.
Neurology seems to want to hold off on radiation as she is “mostly asymptomatic” = but from what I can find – radiation + immunotherapy works best. Then again, she is 82 – so maybe they are trying the immunotherapy first?
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- August 24, 2019 at 2:59 pm
So here is my view of radiation+ checkpoint inhibitors working best vs either one alone, it is being studied in phase 2 trial but the final results aren’t in yet (see link below). There is a lot of retrospective data (looking back at melanoma patients) that shows this relationship. Celeste has posted tons of time on her blog about this relationship and has lots of article on the topic but as far as I know I have not seen stereotatic (srs) radiation done with ipi+ nivo in a phase 3 clinical trial setting where they control the variables with separate arms of treatment. There is lots of data based on patients that have had SRS follow by checkpoint inhibitors like ipi+nivo of nivo or pembro alone or targeted therapy followed by SRS radiation or the opposite order of SRS then targeted therapy data in retrospective studies. I am sure Celeste or others will correct my comments if I am wrong on this point. The hope with checkpoint inhibitor combination treatment like ipi+nivo is durable lasting responses, and maybe SRS might be needed on any tumor that doesn’t respond. If you look up checkmate 204 trial you will find more information about this relatively new approach to treating brain mets. Here is a link that talks about the trial. https://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.9507 https://ascopubs.org/doi/abs/10.1200/JCO.2019.37.15_suppl.TPS9600 -
- August 24, 2019 at 2:59 pm
This link goes with asco post article. https://clinicaltrials.gov/ct2/show/NCT03340129 -
- August 24, 2019 at 3:01 pm
Sorry, link goes with ABC-X trial.
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- August 27, 2019 at 1:52 am
Hi Nasullivan, have they established that it is the same melanoma that was removed in situ? Statistically she is more likely to have developed a new melanoma that metastasized, than have the removed in situ melanoma to grow.But regardless, there are options, although her being 82, some caution of side effects is warranted. You dont want the treatments to hurt her more and faster than the cancer. Has she been tested for BRAF mutation? If shes positive, that gives her new treatment options. Regarding immuno and radiation to the brain, her being asymptomatic, why not try immuno first and see. Why subject her to additional procedures if immuno may take care of it on it’s own? If not then you can always do so it at a later time. In fact she may have fewer or smaller lesions to remove because immuno would have shrunk them. She might be in a good health but at 82, it’s better to not overload the body if you can help it. All the best!
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- August 27, 2019 at 3:20 pm
Actually, there is growing data that the elderly tolerate immunotherapy and attain a response to it as well as anybody! Here is a report containing multiple other reports within: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/08/elderly-in-need-of-immunotherapy-can.htmlHope you find that reassuring. Like the others mentioned, giving immunotherapy alone a chance seems worthwhile. You can always add SRS or gamma knife radiation if no improvement is seen on a follow-up MRI. I wish you and your grandmother my best. Celeste
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