› Forums › General Melanoma Community › Brain Mets after 3rd round IPI/Opnivo – clear MRI before this.
- This topic has 6 replies, 4 voices, and was last updated 7 years, 2 months ago by
cancersnewnormal.
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- March 27, 2018 at 8:33 pm
Hey all –
Just wanted to do an update and ask for advice. My mom did her 3rd round of the combo infusion March 12th. She was battling low sodium so it took a couple weeks to get that treatment. After she started having migraines. We had an MRI yesterday that showed she had some brain tumors that we haven't had before. They seemed to pop up pretty quick, her MRI at the end of December was completely clear. Is this a response to the combo treatment or is this just a progression of the cancer? They are switching up medications but I haven't actually spoke with the Dr. yet.
Any positive stories or advice? She went back on the steriods and it seemed to lessen the pain today. We thought maybe the migraines were just a side effect of all the medication combos and the prednisone was helping those but now she is scared and losing hope.
Thank you,
Aubrey
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- March 27, 2018 at 10:37 pm
Man, Aubrey! I am so sorry. I know that was not the news you wanted. Clearly, hearing what your mom's doc has to say will be very important. However, we've learned that brain mets can be successfully treated (ain't no walk in the park…but still). When SRS or gamma knife (very directed radiation) is combined with immunotherapy, that can be a very good thing indeed! Here are a zillion reports on that if you are interested:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy
So your mom already has immunotherapy in place. Her docs may continue that and add the radiation. Or…perhaps they will recommend BRAF/MEK inhibitors with radiation. That could be a good combo as well if she is BRAF positive. There are also many trial in process that combine immunotherapy with other inhibitors.
This is a huge disappointment and hurdle to be sure. But, there is hope!!!! I had brain and lung mets in 2010. Had surgery to the lung, SRS to the brain and immunotherapy and I am still here.
Your mom is very lucky to have you in her corner. Hang in there. Ask more questions as you need. Yours, celeste
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- March 28, 2018 at 3:29 am
Thank yoy Celeste!
She has 3 very small lesions that were visable. They are so small they aren't sure if they will do anything at this point. The pituitary gland was enlarged and they suspect that is from the infusion. They gave her a new strong steriod to releave the inflamation, which we found worked with just the prednisone so she should be feeling pretty good tomorrow. Thankful we caught this now instead of later I guess. Made for a stressful day but she is in better spirits than me it seems.
She took the Taf/Mek combo but stopped 10 months in as it stopped shrinking the tumors. She keeps saying how she just wants to go back on that but from what I read that isn't really an option anymore.
The Dr. is consulting with a different oncologist to see what what they want to do. Either way just going to enjoy the rest of the week/Easter.
Again,
Aubrey
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- March 28, 2018 at 1:09 pm
Hi Aubrey – this is not the time to lose hope! Brain mets can be treated with SRS/Gamma Knife pretty easily. My husband was initially diagnosed 6 years ago with brain mets and has had 5 gamma knife treatments and 3 craniotomies – the most recent was last week. He's rebounded from each procedure remarkably well. I expect he will be scheduled for a post surgical gamma knife plus immunotherapy in the next few weeks. Your mom's headaches may be due to the pituitary issue rather than the brain mets. Take care and best wishes.
Ann
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- March 28, 2018 at 8:38 pm
Thank you, Ann. Now that she is on steroids her headaches are not near as bad as they were so I definitely think it was the pituitary and inflamation. She is in a much better mood then me though! I really appreciate your feed back. She has all other scans in the middle of the April so just crossing fingers that those look great and the brain mets are the only things we have to worry about. 🙂
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- March 29, 2018 at 6:33 pm
Hey Ann, they decided they will do radiation therapy on the brain mets. That is all we know, not if it is specific or what not. Is there anything we should ask at the appointment? Her melanoma oncologist said they were so small but that the neurologist wanted to go ahead and do radiation so that is the only thing that concerned me.
Thank you again,
Aubrey
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- April 2, 2018 at 1:30 pm
Melanoma lesions in the brain respond well to targeted radiation treatment, particularly if they are small. It is a non-invasive procedure. The radiation in combo with the immunotherapy infusions has been shown to have a nice 1-2 punch that could have additional benefits to destroying metastasis. Gamma knife and SRS are both basically the same idea, but the procedures are slightly different in their delivery. Gamma is done all in one day. A head frame is applied, and they will zap any lesions they see on a more detailed MRI, which is done with the frame in place. SRS is done using a custom molded mask to hold the patient's head in place for the targeting process, and is usually done over a few days, hitting each target a bit at a time. The first question I'd have for the radiation oncologist would be WHICH process they use at the facility your mom is treated at. Either one will be equally effective, it will just be a difference in time span and visits to the facility to have the lesions taken care of.
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