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Doing SRS for Brain Mets and After Which Way to Turn

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Doing SRS for Brain Mets and After Which Way to Turn

Posted By
sing123
6/27/2020 2:18pm
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Replies: 4

Greetings, dear ones. I will be done with the SRS next Wednesday. My local oncologist does not consider the Opdivo that I took for a year to have been a fail since the cancer has not come back in my lymph nodes or for third time on my scalp or at all elsewhere.

My Melanoma Specialist, however, did call it a fall. I am eligible for the BRAF combo and this what he recommends.

But so many other seem to be getting the recommendation that they go on a combo Immuno treatment, and as you have said Celeste it can have a really nice synergistic boost with recent radiation.

I am really at a crossroads. I know that the combo immunotherapy’s can carry a great number of side effects, and I listened with great interest to a podcast by Dr. Jeffrey Weber when he said that they are working on reducing the toxic side effects of them in a therapy given at the start of treatment with what he called an antibody.

This however is not yet available. And as several others have indicated here recently, I also have young children. And not much time to ponder.

Have you any advise? Thanks all.

Cindy

Diagnosed April 2018; Stage IIIc; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; continuing on Opdivo, finished Opdivo in March 2019

I'm Still Here!!!

Cindy, congratulations on doing so well. I’m sure the SRS will take care of any problems in the brain.
My story: January 2012 - melanoma in brain, both lungs, liver, kidney, gall bladder, left adrenal gland and spinal cord. Had Gamma Knife for brain and started Yervoy / Opdivo trial.
July 2012 - two tumors in brain discovered. Another round of Gamma Knife.
August 2012 - declared NED.
February 2014 - completed trial.
July 2020 - still NED ( excuse me for taking the liberty of four days)

Even though you know what my response will be, I’ll put it down, go for the Opdivo / Yervoy combo. I really believe four doses and then you’ll be good to go. Sure you might get diabetes or gland failure but after three years NED, you can put the melanoma behind you. I did lose my pituitary, adrenal and thyroid glands, no big problem, two pills per day. Cindy, you are in the home stretch, you got this disease pretty well taken care of.

John J Kissane

Oh my goodness, thank you for your very encouraging message and for sharing your story. I am absolutely leaning into the combo treatment and I will be talking to my oncologist about this next week. Really appreciate it.

Very best to you.

Cindy

Diagnosed April 2018; Stage IIIc; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; continuing on Opdivo, finished Opdivo in March 2019

I'm Still Here!!!

Hey Cindy. It can never be said enough, "Melanoma sucks great big stinky green hairy wizard balls!!!" And our choices for care, though ever so much improved over the past 10 years, aren't much more fun! It is all so personal and still so up-in-the-air as to what is best. However, I think if I were in your position, which as I understand it is NED except for those dastardly brain mets, I would opt for the ipi/nivo combo as follow-up to the radiation. All the time knowing you can start targeted therapy if need be. I wish you my very best. Give the kiddos a squeeze from me. les

Les, as always, am so grateful for you and your input. I’m going to pursue exactly this. I have come across some clinical trials that looked at ways to alternatively dose the combo immunotherapy to reduce the grade 3 and 4 side effects.

Thanks so much for getting back to me.

Very best,

Cindy

Cindy

Diagnosed April 2018; Stage IIIc; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; continuing on Opdivo, finished Opdivo in March 2019

I'm Still Here!!!