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Melanoma in my Brain Now

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Melanoma in my Brain Now

Posted By
sing123
6/13/2020 1:53pm
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Replies: 16

Hello dearest Hero Mentors. Had a delightful brief reprieve but the cancer is back and in my brain. I’ve 3 lesions discovered recently on an MRI and am
going boldly into whatever I need to do. Starting with stereotatic radiation.

Can anyone please provide advice on this type of radiation? Is one preferable to the other, such as is cyber knife better than the generation of Stereotatic preceding?

Should I follow up with immuno again? Was on Opdivo am my oncologist told me the Opdivo has worked as it has not returned to the rest of my body, however the brain is very difficult to penetrate with immunotherapy.

Will I live? I have so many questions. I have so many hopes.

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!!!

Bubbles - (6/13/2020 - 3:46pm)

So sorry that you are facing all this Cindy.

First. There is hope! I had SRS (stereotactic radiation) to the brain in August 2010 - gained entry into an Opdivo trial in Dec 2010 - and with my last dose from that trial in June of 2013 - I am indeed still here and remain NED for melanoma with no further treatment. So, yes! There is hope!

I think Ed once posted a break down of cyber knife vs SRS, and perhaps, if I am right - he will again. To my mind there is no significant difference in what they do, how they are tolerated and their results.

Despite the fact that there was a time lapse between my radiation and immunotherapy (We were searching madly for systemic treatment - there just wasn't any!), we have learned that radiation and immunotherapy TOGETHER - work much better than either alone in the brain and in the body. Here are only a zillion reports:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radi...

In regard to immunotherapy working in the brain - the whole blood brain barrier, penetrance into the brain thing - is a hold over from real mechanical factors that prohibit old school chemo from passing easily through the blood brain barrier. This is NOT an issue in regard to immunotherapy. Immunotherapy causes the cells you have in your body to work against the tumor. Those cells can reach brain tumors. So, first and foremost - there is that. In fact, studies show that immunotherapy works as well in the brain as it does in the body. That being said, we also know that - in the brain and in the body - the ipi/nivo COMBO has greater response rates than either anti-PD-1 product (opdivo or keytruda) used alone. Here are even more reports (though some will be repeats from those linked above, but not all): https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=immu...

We also know that folks who progress while on or once off anti-PD1 can gain a response when the treatment is repeated. We also know they do even better when treated with the ipi/nivo combo. Here is a report that addresses that (and as I understand it, where you are) directly: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/05/how-to...

So, it's a lot. Melanoma treatment has come a long way and you have real reasons for hope. Still, melanoma sucks great big green hairy stinky wizard balls! It is certainly not for sissies! But, I know you can do this. I am sure others will respond. Ask more questions as you have the need. Take care. I wish you my best. celeste

Bubbles - (6/13/2020 - 4:00pm)

Also, if it is your onc who is telling you that immunotherapy doesn't work in the brain, you may well need a different oncologist. Make sure you are seeing a melanoma specialist. At the very least, an oncologist who is seeing lots of melanoma patients and very familiar with immunotherapy as well as targeted therapy. Your previous lesions should have been tested to see if they were BRAF positive. If they weren't, tissue samples should still remain and they can be. If you are BRAF positive, targeted therapy is an additional treatment option. Here is a primer on all current melanoma treatments: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melan...

A melanoma specialist may make all the difference for you. c

sing123 - (6/15/2020 - 4:16pm)

Celeste, as always, thank you so much. I read your links with great interest and I feel very fortunate to have just received an appointment with the melanoma specialist who I met with before at Mayo in Jacksonville. Very best to you and hope you are doing great.

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!!!

JudiAU - (6/13/2020 - 3:51pm)

I’m sorry. My best advice is to not get too caught up in Brian radiation fears. There is a lot of doom and gloom out there that is scary.

sing123 - (6/15/2020 - 4:17pm)

Thank you so much.

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!!!

ed williams - (6/13/2020 - 5:28pm)

Hi Cindy, just to add to what Celeste has given you, here are two links from last summer talking about new findings of best way to handle brain mets in melanoma. https://www.youtube.com/watch?v=gDu3x9xhH-U https://www.medscape.com/viewarticle/917724

ed williams - (6/13/2020 - 5:35pm)

At the 25:30 min mark of following video Dr. Michael Davies of MD Anderson gets into another new area of research in treating brain mets that they are looking into at MD Anderson called Oxphos. https://www.youtube.com/watch?v=wwup6wOizdo&list=PLOnM_erAQqIBK-ASSZujKr...

ed williams - (6/14/2020 - 12:04pm)

One last video from Dr. long of Australia on ABC trial results with immunotherapy where nivo vs nivo+ipi is compared. https://www.ascopost.com/videos/esmo-2019-congress/georgina-long-on-mela...

sing123 - (6/15/2020 - 4:19pm)

Ed, your prompt and helpful responses always amaze me. I am
so appreciative and watched these clips with great interest. I have an appointment with a melanoma specialist to hopefully get some
of this cutting edge advice. 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!!!

poppymac - (6/14/2020 - 12:05pm)

hi, I started on pembro in sep 18 but it was stopped because of progression on 30 nov 18
brain met on right frontal lobe showed up in ct scan
SRS surgery which lasted about 20 minutes on 27 dec 2018 and no treatment since

fergal

sing123 - (6/15/2020 - 4:20pm)

Thanks and very best to your continued health!

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!!!

lkb - (6/18/2020 - 1:15pm)

I had a brain met and one radiation treatment in December 2018 and started Pembro one month later (had been on Nivo and progressed). Clean brain scans since then (five of them). My docs agree that immunotherapy + radiation is more effective for brain mets the either of those two alone. Hope your Mayo appointment is helpful and clear. Sending you all the best.

October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met January 2019 Pisces trial IL-12 + Pembro. .

 

sing123 - (6/20/2020 - 5:40pm)

Thank you so much for your response. Continued health 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!!!

DoubleTT - (6/22/2020 - 5:51pm)

Hello Cindy
My name is Tracey I live in Toronto Ontario Canada. My name on here is DoubleTT. Was diagnosed in December 2015. Surgery January 2016. Lesion was on back left shoulder. Nasty deep 4+ ulcerated thing. Turns out my gene type is NRAS. uggh. Did a trial as there was really nothing for me as I was considered 3C as I had a bunch of in transit satellites in my pathology. No lymph nodes... but it was already on its way. We did trial and watched me like a hawk. It returned in January 2018 to my T12 vertebrae. Got it zapped 2x with SRS . They call is Stereostatic Radio Surgery (SRS) when its to the body. Started Nivo in April for one year.

Four months later, Feb 2019 my melanoma returned for a second recurrence to my brain... no where else. One small lesion to my posterior temporal lobe. My care is with Princess Margaret Cancer Centre in Toronto (best Cancer Centre in Canada and for research - top 5 in the world). Docs told me they use Gamma Knife for under 3 lesions depending on size and their proximity to each other. (Not SRS which is for the body.) More than that they consider whole brain radiation. They prefer Gamma Knife as it helps with the risk of necrosis. My brain was already swelling a fair bit so who knows what will happen. March 20th I had the Gamma Knife surgery. May 14 started Combo immunotherapy with Nivo and Yervoy. The docs here forecasted this I guess because they held back back the combo immunotherapy until now. Wednesday will be my 3rd of 4 infusions. When I finish the combo therapy on July 16th with fingers crossed the 4th infusion , I am being put back on Nivo again for one to 2 years. So Celeste is correct. They like to zap the brain and give the combo of immunotherapy. In addition to the fact that I have already been pumped with Nivo for one year and the recurrence was in my brain x1 lesion we are hoping this will silence the beast for as long as the drugs be my friend. The research that Ed and Celeste have given is exactly the protocol my docs are doing for me.
It all sucks but we are at an advantage with the research findings that are teaching these docs the best protocols to keep us going. In the meantime I keep get the test searching for specific proteins etc so I m in the system for the new trials coming up or happening. Was tested for TIL therapy unfortunately I don't have the right proteins they are looking for. But there are other brews coming!
If I have rambled too much its because my brain is scattered from zapping and the drugs...lol honest!!! PS You can do this but like Ed , Celeste and the other smart folks on here.always insist.. you must be with a leading oncologist team in Melanoma...
All my very best and routing for you !
.. PS I am having an MRI on Friday night to see how my T12 and now my recent brain zapping are coming along. Then August 20th the whole body etc CT as a new baseline before I start NIVO.

<p>Double TT- Toronto Canada</p>

Bubbles - (6/22/2020 - 8:02pm)

Goodness, Tracey. Sorry for all you have been through and will keep my fingers and toes crossed for good reports from your MRI this Friday. But, just so we don't confuse folks - SRS can certainly be used on the brain - it was used on mine! HA! Here is the beginning of a couple of reports (from zillions I have reported on) that make that clear:

Concurrent versus non-concurrent immune checkpoint inhibition with stereotactic radiosurgery for metastatic brain disease: a systematic review and meta-analysis. Lu, Goyal, Rovin, et al. J Neurooncol. 2018 Nov 3.

Immune checkpoint inhibition (ICI) is an emerging immunotherapy for metastatic brain disease (MBD). Current management options include stereotactic radiosurgery (SRS), which has been shown to confer prognostic benefit in combination with ICI. However, the effect, if any, of ICI timing on this benefit is currently unclear. The aim of this study was to evaluate the effect of concurrent ICI with SRS on survival outcomes in MBD compared to non-concurrent ICI administered before or after SRS.

Concurrent Immune Checkpoint Inhibitors and Stereotactic Radiosurgery for Brain Metastases in Non-Small Cell Lung Cancer, Melanoma, and Renal Cell Carcinoma. Chen, Douglass, Kleinberg, et al. Int J Radiat Oncol Biol Phys. 2018 Mar 15.

To characterize the effect of concurrent stereotactic radiosurgery-stereotactic radiation therapy (SRS-SRT) and immune checkpoint inhibitors on patient outcomes and safety in patients with brain metastases (BMs).

It can certainly be used locally on the body as well. Wishing you my best. Celeste

sing123 - (6/27/2020 - 1:59pm)

Tracey, thank you so much for your very thorough reply especially given that you must be feeling very under the weather as am I. I am going to start a new thread but wanted to respond to you here. I will be thinking of your continued health and strength and please stay in touch here. Am
glad to hear that you are getting such excellent care. We will thrive!!! My 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!!!