doragsda

My wife had dizzyness with her melanoma brain mets, but they have to be impinging on specific parts of the brain to cause this, and would almost certainly be visible on a MRI. My wife was actually diagnosed with vertigo, but after it progressing for several weeks and getting to the point where she could not walk, I took her to the ER where they finally did a MRI and saw two brain mets.

I think an important clue for you is the dizziness resolved temporarily after they blew out your ears. That certainly sounds vestibular.

In July of 2017 my wife was diagnosed with two melanoma brain mets. One was removed via surgery then she had gamma knife on the other as well as on the area around where the tumor was removed. She then started Opdivo + Yervoy, did four doses of the combo then two years of Opdivo alone. She is now NED (no evidence of disease). Her side effects were very minimal – dry mouth, some rash, minor stomach issues.

She sees Dr. Hamid at Angeles Clinic. Be sure you have an oncologist who specializes in melanoma.

I don’t have melanoma, so I can’t give you first hand experience. However, my wife went from stage 2c to stage 4 with brain mets, and she is now NED after two years of immunotherapy.

I can say, without reservation, that if I were diagnosed stage 3, I would do immunotherapy. It is a game changer in terms of melanoma treatment for many people. Melanoma can be very aggressive, and I would want to give myself every chance.

Best of luck to you.

There are a number of medical issues that can cause this, but I do have to tell you that my wife passed out as the symptom that had me take her to the emergency room where her brain mets were discovered.

I can give you one data point regarding question 2:

My wife’s primary on her calf was very thick, over 4mm. Her sentinel lymph nodes were clear and a PET scan was clear. However, 6 months later, two mets showed up in her brain. It’s over 3 years now since her primary and those two brain mets and still the only mets she has had. She’s had brain surgery, gamma knife, and immunotherapy and is doing very well now.

The PET scan shows metabolic activity, and the brain has a LOT of metabolic activity, so lights up everywhere with a PET scan and is of little use in detecting metastases to the brain. The MRI is the study of choice for evaluating the brain.

In July, 2017 my wife was diagnosed with two brain mets. One was 25mm in the cerebellum. One was 10mm in the left frontal lobe. The cerebellum tumor was effacing, meaning it was blocking the flow of CSF in the brain, so was critically dangerous and was removed two days after it was discovered. The frontal lobe tumor was in an area difficult to operate on, so it was left in place. 9 days after the craniotomy, she had gamma knife to both locations – one to zap the frontal lobe tumor and she also had gamma knife to the edges of the surgical cavity where the cerebellum tumor was removed, to hit any cells left behind. Three weeks later she started ipi/nivo combo treatment. She is now NED and finished immunotherapy in September and is just on routine follow up scans now. She did have a bout of radiation necrosis to the cerebellum, about 3 months after the gamma knife, but they treated it with Avastin and it resolved.

Hi Adam, my wife had two brain mets in July 2017. They did gamma knife and followed it up with 4 doses of ipi/nivo then two years of nivo, which she just finished in September. She is now NED and doing very well. The current thinking with many melanoma oncologists is to skip the radiation and jut go straight to the immunotherapy, and they seem to be having a lot of good results that way with brain mets.

Make sure you are seeing a melanoma specialist and not just a more general medical oncologist. Best of luck to you.

Dave

As Ed described, the CT is the normal standard of care for evaluation of the chest and abdomen. The other consideration is that a PET scan uses a radioactive tracer agent, and so exposes you to significantly more radiation than a CT (which is essentially a series of X-rays that are reconstructed by a computer into a 3D image).

Your pics didn’t come through as the links referenced files on your local computer, rather than on an internet server.

I would definitely get it checked, as the oozing characteristic may be ulceration. I have had squamous cell carcinomas which were slightly ulcerated, but my wife’s melanoma was ulcerated and ulceration is a significant risk enhancement for melanoma, so get it biopsied so you can know for sure.

It seems that the standard of care (perhaps driven by insurance restrictions) is they don’t routinely do a brain MRI unless CNS symptoms are present. My wife was stage 2c in December of 2016. They did a PET scan but no MRI. PET was clear. 6 months later she had two brain mets. I’ve always thought the larger brain met might have been detectable if a MRI had been done in December of 2016, but several doctors told me that MRI is not normally done in the absence of symptoms indicating brain involvement.

My wife just finished two years of immunotherapy (Yervoy + Opdivo) with was very effective and her labs usually showed low WBC and low eosinophils. Only time they really elevated was when she had a cold.

Even a Clark level 4 is still completely contained within the skin itself, which is encouraging. Your Breslow thickness of 0.7mm is very positive for a good outcome. Thicker, ulcerated primaries are the ones that generally spread, and your primary is neither of those, so that’s all good news.

Are you seeing an oncologist who is a melanoma specialist?

I intended to add that, with your history of stage 4 melanoma, waiting and watching does not seem to be an appropriate response to me.