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Headache back after SRS for brain mets

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Headache back after SRS for brain mets

Posted By
sing123
7/30/2020 11:26pm
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Replies: 8

Hi all. I am still consulting with docs about going on BRAF combo meds or combo immunotherapy. I finished my radiation SRS treatment to my brain mets July 2 and July 5 stopped taking dexamethasone. I had been titering (Sp?) down from the steroid for 2 weeks due to side effects. I still had a very mild headache for about three weeks after I stopped radiation, then no headache. Today, July 30, I have a headache and was seeing auras and couldn’t read full sentences. The headache is on the same side of the brain as before. I have an appointment with my doctor early next week, and he is confident that the SRS was successful, although I have not had a follow up MRI yet as I am not scheduled for one until early September. He says I don’t need it and put me back on the dexamethasone to help with what he says is causing it, continued swelling. I am quite confused by the reappearance of symptoms. Does anyone have any thoughts or experience they can share? Thanks very much.

Cindy

Diagnosed 4/18 Stage IIIc; WLE on head, started Opdivo 5/18; new spots 10/ 2018; 2nd surgery; Last Opdivo 3/19. 3 brain mets recur 6/20; now Stage IV; SRS + starting Ipi/Nivo 8/17 2020.

I'm Still Here!!!

It sounds like your dr is attributing you symptoms to swelling rather than tumor growth? Yes, it is possible. The dex control the swelling. You are off dex and maybe the swelling is controlled. Radiation can cause swelling.

If the symptoms (lost visions is terrifying) continue it might be time to restart a steroid and or push harder to have an early MRI to confirm tumor size or swelling.

Thank you so much for your response! Yes I am pushing for an earlier MRI though they have moved up my schedule again from six months to three months and it is already scheduled for the beginning of September! And I am back on the steroid, though at a very low dose. I have had a slight headache today but no more auras. Best to you.

Cindy

Diagnosed 4/18 Stage IIIc; WLE on head, started Opdivo 5/18; new spots 10/ 2018; 2nd surgery; Last Opdivo 3/19. 3 brain mets recur 6/20; now Stage IV; SRS + starting Ipi/Nivo 8/17 2020.

I'm Still Here!!!

May I ask how often you have had a CT scan and where the other mets are located?

Hi there. My last MRI and Pet scan were about 8 weeks ago. I will get my new ones at the beginning of September. The three brain mets were all in the same area (left occipital and parietal I think is what it is called, toward the back of my brain). Best to you.

Cindy

Diagnosed 4/18 Stage IIIc; WLE on head, started Opdivo 5/18; new spots 10/ 2018; 2nd surgery; Last Opdivo 3/19. 3 brain mets recur 6/20; now Stage IV; SRS + starting Ipi/Nivo 8/17 2020.

I'm Still Here!!!

Hi Cindy, I had SRS back in 2013 to three small mets, I was lucky to not have any side effects from the radiation so I can't speak to what you are dealing with any personal experience. I can help with some material for making the next decision of what treatment would work best. Two trials have been leading the way in melanoma brain research, one called checkmate 204 and a second from Australia called ABC trial and now a second ABC-X trial that is combining ipi+nivo plus SRS radiation vs just ipi+nivo. Here are some links that discuss the findings from these trials. https://www.youtube.com/watch?v=gDu3x9xhH-U https://ascopubs.org/doi/abs/10.1200/JCO.2019.37.15_suppl.TPS9600 https://www.nejm.org/doi/pdf/10.1056/NEJMoa1805453

Sorry about second link, I was trying to copy dr. Tawbi video which was one before targeted therapy link that copied. https://www.cancernetwork.com/authors/hussein-abdul-hassan-tawbi-md-phd

Thanks Ed! I can always count on your responses with hearty links attached, which I greatly appreciate. I will read and watch these. I am having a hard time deciding my next treatment. But I have a televideo conference with Dr. Jeffrey Weber on Monday and I am very happy about this. I have been poring over all of his onclive and other podcasts. Very best to you!

Cindy

Diagnosed 4/18 Stage IIIc; WLE on head, started Opdivo 5/18; new spots 10/ 2018; 2nd surgery; Last Opdivo 3/19. 3 brain mets recur 6/20; now Stage IV; SRS + starting Ipi/Nivo 8/17 2020.

I'm Still Here!!!