› Forums › General Melanoma Community › Scared my mom’s parietal lobe met is bleeding again.
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cancersnewnormal.
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- May 13, 2017 at 2:12 am
My mom is stage iv, brain mets (1.8 cm left parietal lobe, 8mm left posterior putamen, and 3 or 4 mm frontal lobe lesion that appeared recently next to the 3cm left frontal lobe lesion she had resected a few weeks ago.
Gamma Knife is on Wednesday the 17th, PET scan on the 22nd, first keytruda is on the 24th.
We're waiting on BRAF testing though melanoma specialist plans to keep those drugs in his pocket for later if needed, if she's positive for the mutation.
We don't know where the primary is. She had a PET scan in january after the parietal lesion bled and caused her right sided weakness and unsteady gait. She was taking max daily dose aspirin for unrelated neck issue when the bleed occurred. She hasn't taken aspirin since.
Today we met with her neurosurgeon for post op consult. He seemed to think she's checking out okay. She mentioned that she was again having the right sided weakness (mostly slightly unsteady gait, mild bumping into things, needing concentration for fine motor skills) but not to the extent it was before.
I asked him if it could be that same met bleeding again and he said it's possible.
I'm scared. Could she have some kind of massive hemorrhage and die? I was too scared to ask any more questions I didn't want her to hear the answers to. I know that's not good.
Last time, to my understanding, the bleeding didn't extend beyond the lesion. I'm hoping this is just a blip. Radiation oncologist and melanoma specialist are super optimistic about gamma knife and keytruda considering that she only has evidence of disease in her brain.
I'm terrified one of these is going to blow and kill her before they can be killed themselves.
I'm terrified this next PET scan is going to show systemic spread.
I'm terrified gamma knife and immunotherapy won't work.
As a final note, the only two spots that lit up on her first PET scan were a hilar lymph node outside of lung that was biopsied and negative for cancer (it barely even lit up) and a spot in her terminal ileum in her intestines….
Then I find this….
https://www.hindawi.com/journals/crigm/2013/958041/
Reassurances, honesty, anything is appreciated,.. I'm back in panic mode 🙁
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- May 13, 2017 at 7:20 am
Hey,
Sounds very similar to my wife. Multiple brain mets, one or more bleeding – treated over the past year with a couple rounds of Gamma Knife, Taf/Mek (she was BRAF postive) for 8+ months, and now Keytruda. No progess as of last MRI…
I don't know what the statistical chance of massive bleed is – but my impression is that it's more of a gradual process, especially if the tumors are closely monitored and she's getting treatment.
One thing I would recommend is getting on an anti-seizure medication ASAP, if she's not. My wife was on meds, then stopped, then had a seizure while driving with our kids. Obviously she went back on.
Just keep in mind that you – and your mom – can live with this, possibly indefinitely. It's hard to see that in the beginning. But I've been there for a year and a week now, and it looks a lot different from here.
Good luck!
Steven
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- May 13, 2017 at 1:11 pm
Oh, thank you so so much. And yes, she has never had a seizure but they’re keeping her on Keppra 500mg 2x daily that they put her on after craniotomy since she’s just about to have gamma knife. She doesn’t have side effects from it so definitely better safe than sorry! Our doctors have given us that hope, which surprised me. The hospital we first went to gave us doom and gloom (we’re now at the top hospital in our state).I just fear these little blips. But I am happy to report she just messaged me to tell me its much better and almost not even noticable today. Little blip indeed 🙂
Thank you so much.
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- May 13, 2017 at 12:23 pm
Hi Seireland 0611, just a comment on the article. It was written in 2013 which in the Melanoma world is a long time ago. The two Pd-1 drugs Nivo and Pembro were not approved yet, Ipi/Nivo combination was not approved yet. Combination of immunotherapy drugs were just starting to be talked about as the way to go in the future. Braf inhibitor were given as a monotherapy and not yet combined with Mek inhibitors as standard of care. My point was the landscape for patients were not as positive in 2013 as it is today. We now have T-vec, lag-3, Gitr, 0X-40, Pd-L1 drugs and so many others in trials. There is so much more hope today compared with 2013. The stats on brain mets for me in 2013 was 4 to 5 months, I am coming up on 43 months post cyberknife treatments. Try not to let the fear win!!! Best Wishes!!!Ed
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- May 13, 2017 at 1:15 pm
I LOVE hearing this!!! I’m so happy for you! and that does indeed help reaffirm my hopes.The only thing I got out of the article was brain mets + terminal ileum — the only spot that lit up on her PET that hasnt been investigated. I’m going to ask them for a colonoscopy once gamma is done and she’s chill on keytruda. I’ve had a feeling about that spot. The treatment for brain mets is so inspiring, waiting for a new PET and BRAF results is nerve puke territory lol. I feel like best case they can treat the brain incredibly well, but I feel like Liam Neeson looking for this bastard primary site…. 🙂
Thank you again.
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- May 13, 2017 at 5:27 pm
Breathe. Try to take care of yourself. If you are worrying yourself to death you can't help your mom. Try to be positive and just remember to breathe. Wishing you and your mom all the best.
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- May 15, 2017 at 3:40 pm
You are still in that "crazy scary zone" of diagnosis. I know it doesn't help much right now… but it will ease up. There will be a few upswings and downswings along the way, but brain mets are survivable… though do require good monitering. Melanoma lesions in the brain don't tend to melt away from the outside in. They kind of break apart like a sponge that's been left in a bucket of bleach. It can cause some bleeding, but bleeds often stop on their own. Gamma knife can cause things to swell and look larger for a little while after treatment. Is she scheduled for a follow up with her radiation oncologist soon?
As for her primary…. you may never find it. It may have regressed and simply isn't around anymore. The fact that it is in her brain means she is stage IV, and the most recommended systemic treatment will be the same, regardless of any additional spots that might be found in her body.
To reassure you, as already mentioned in replies above, treatment options have changed dramatically since 2013. There are quite a number of folks on this forum who have undergone (or have a family member who has) brain surgery/surgeries and gamma knife. The experiences vary, so you are likely to hear from someone with similar concerns and experiences that you and your mom are facing. It's nice to have people you can bounce "panic" off of. 😉 Once she begins immunotherapy or inhibitors, you're very likely to have more questions. It sounds to me as if you're on top of things with learning about options and what questions to ask to help your mom with decisions. I'm sure she appreciates it more than she could ever express. 🙂 Hang in there…. I just rolled through the 4 year mark (since stage IV) last month.
You may be interested in an informative workshop coming up this Friday (May 19th). It's free to register and you either listen by phone, or stream it live over the web. Go to this website http://www.cancercare.org/connect_workshops/ …. scroll down the list to Friday, May 19th and you'll see: The Role of Immunotherapy in the Treatment of Melanoma — Part III of Living with Advanced Skin Cancer It's an hour long and you can send in questions at the end. : )
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