› Forums › General Melanoma Community › Repeat Gamma knife
- This topic has 9 replies, 3 voices, and was last updated 5 years, 9 months ago by
doragsda.
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- July 17, 2018 at 3:02 pm
Hello
It has been a while since I have posted on my mom's case. She has been in a PD1/epocadastat trial for the last 2 years. Prior to starting the trail she had 3 small brain mets treated with Gamma successfully. Overall she had done well on the trial. The removed a lymph from her groin and it was show to be necrotic and the lesion in liver which canot be biopsied is assumed to be melanoma ..has changed in intensity. Overall she has seemed stable for the lasy year/.. pretty much doing Optivo for 2 years so descion was made for her to stop the PD1. She had to do her annual Brain MRI 2 months before planned completion date with the PD1 the scan showed something in cerebellum area.. scan was analyzed and it was beleived to be possible inflammtion related to gamma knife. They repeated the Brain MRI 2 months later and are now saying they think is a new lesion in area treated before. I am still trying to figure this part out.. as hard to read the Brain MRI reports.. and not sure what has been talked about when it went to neuro board.
Anyway my quesiton is… ok to do gamma knife 2 years post on similar area? Mom was going to stop the PD1.. but now wondering if this the best move… Also how concerned should we be about a met returning while on the PD1… everything else was looking so good…
Any input or thoughts appreciated. Gathering my thoughts on it all and getting ready to ask these questions to her team as well.
Prayers and healing to all on here!!
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- July 17, 2018 at 4:06 pm
Hi Jade – my husband has had multiple gamma knife treatments, including a few repeats in previously treated areas. He just resumed Keytruda after one of his previously treated tumors was surgically removed. He did have post surgical gamma knife to the perimeter of the surgical cavity to hopefully pick up any remaining cells. If your mom is having another gamma knife, I'd stay on the PD1 for a bit longer to take advantage of the synergies between the two treatments. Take care.
Ann
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- July 17, 2018 at 10:02 pm
If the enhancing area in the cerebellum is in the location that previously received gamma knife treatment, I would push them for more definitive tests to determine if it is truly recurrence of tumor or if it is radiation necrosis. My understanding is that they both look identical on MRI.
My wife had a tumor resected from her cerebellum, then received gamma knife on the resection cavity. Months later the radiologist reading her recent MRI noted possibility of recurrence in the cerebellum due to a nodular enhancement there. We went down to Angeles Clinic where they performed a PET/CT (a MRI with spectroscopy can also be performed, but there don't seem to be a lot of facilities with that capability) and the PET/CT confirmed that it was not a tumor but was necrosis, which they treated with 4 doses of Avastin, which took care of it.
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- July 17, 2018 at 11:56 pm
Thanks for the input. This is very much my concern. That it is necrosis..Sorry your wife has been dealing with this. Can I ask how long between those MRIs? I was under the impression that PET is not a good evaluator of the brain? The second MRI they recently did required a special sequencing..actualluy causes a lot of confusion as had to rush over to a different location that had capabilities. The original Gamma Knife was 2 years ago.. first few MRI's post gamma were fine.. the problem one was the recent 2 year one which initially they thought was necrosis or related to Gamma.. now with special sequencing they I guess dont think so…Can I ask where you were before Angeles clinic? Thaks again!
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- July 18, 2018 at 12:07 am
She's on a 3 month scan interval, so the nodular enhancement showed up in that interval. She's been doing normal MRI of brain and CT of body locally, and does her immunotherapy locally, but sees Dr. Hamid at Angeles as her melanoma specialist; he works closely with her local oncologist so we don't have to travel for every test or treatment.
You're correct that PET is not great for brain diagnosis, but apparently a PET/CT gives them the information they need to assess a specific spot in the brain as either metabolically active (thus tumor) or not (thus necrosis). Her radiation necrosis showed up about 6 months after gamma knife, but I have read many accounts of it showing up much later, so I would encourage you to try to get them to do more definitive testing. If it is necrosis and they hit it with the gamma knife again, it may just increase its severity due to irradiating tissue that already has radiation damage.
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- July 18, 2018 at 12:18 am
Thanks so much. I will try pushing for a PET scan prior to Gamma. That nakes sense about it in regards to necrosis. She has one scheduled for October and just did adbominal and chest CT. My mom is at UCSF and she travels some for this location. Sounds like your wife is doing pretty well. She is lucky to have you for support. I really appreciate the input!
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- July 18, 2018 at 12:31 am
Thank you and my thoughts are with you and your mom. My wife is doing very well and I tend to repeat her story to give people hope in their journey.
Her primary was on her left calf in November 2016 – very bad as it was over 4mm deep and ulcerated. She had WLE and SLNB at John Wayne in December 2016. Got the best news that SLNB was negative and PET scan was clear.
Forward 7 months to July 2017 and she's having dizziness and nausea. I took her to ER on a Saturday night and MRI shows two brain mets. Monday morning meet with neurosurgeon who explains met in cerebellum is very dangerous, puts her in hospital immediately and removes 26 mm cerebellum tumor on Tuesday morning. 10mm tumor is left occipital is in a bad spot for surgery, so we meet with radiation oncologist while she's in hospital and he recommends gamma knife.
9 days after brain surgery we get in car and travel 3 hours to Thousand Oaks to have gamma knife on 10mm tumor as well as resection cavity of cerebellum. 3 weeks later she starts Yervoy/opdivo immunotherapy and two weeks after that we go to Hawaii on vacation.
She's been on immunotherapy since Sept. 2017 and is now NED. 10mm tumor shrunk to 3mm of scar tissue and is dead. Other than the necrosis which they got under control quickly, her side effects have been minimal – her thyroid just died about a month ago and she has some mild GI issues, but she's doing great.
So keep advocating for your mom. I think it's one of the most important aspects of the whole treatment ordeal. Good luck!
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- July 18, 2018 at 12:41 am
What a journey! Sounds like she has had very good care along the way. My Mom's was similar to your wife in that she had a melanoma on her thigh.. negative SNB. Flash forward over a year later and only because she had a smart primary who saw swelling in right ankle and thoguht she may have a clot but saw HX of melanoma in leg so also ordred ultrsound of lymph in groin. Thats when they found it had spread.. she had no other symptoms..spent a lot of tiime advocating and finally got full body pet and was found in other areas. She decided to do a trial.. in order to qualify have to do brain MRI thats when they found the first set of mets. Overall we feel super fortunate.. she had done well on trial.. she was about to graduate so this is a little bump.. So glad your wife is doing well! Thanks for sharing story. We have found UCSF to be great. Any idea how long she will stay on Immunotherapy?
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- July 18, 2018 at 3:15 am
Dr. Hamid says either 2 years total or 1 year past NED, whichever is longer. Since she's now NED she should finish up in September of 2019 as long as everything stays as it has. He told us during a check up last week that patients who are doing as well as she is usually continue to do well, so that was very encouraging.
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