Brain Mets Sisters
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looking for brain surgery recovery input here. Neuroendoscopic or keyhole procedures? Minimally invasive frontal lobe surgery?
It's on the table for me as I have a 2+ cm necrotic tumor with blood product inside it...
And since I have no real answers yet if we're doing it, lookin for other sisters advice, words of wisdom, recovery experiences
Hope everyone is feeling well and hopeful 🙏🏾
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hubs of Amanda-
I was on the Xeloda Tykerb combination right after they found my brain mets. I also had liver mets. That was in dec 2012. I have been on Xeloda ever since. I was taken off Tykerb in July 2015 when a solitary liver tumor was found. You can PM if want.
I found the combination very doable. I have 4 kids that I take care of. My biggest problem was GI upset mostly terrible diarrhea. Imodium helped.
My brain has remained clear.
Hope this helps
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Pagej try Brainmetsbc.org they might help some info for you. Sorry don't know about such surgery. Hope this helps.
Husbandofamanda Tykerb is known to be beneficial, where else does Amanda have mets? To be honest docs pick and choose, I am still trying to figure out also for my DD. She was on it but it did not help her much, for some of course it's great. She was on Xeloda too, more because of liver mets. But, in her case, she never gets a break, so...just keep praying.
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No personal experience but found this piece about. Sounds like it could be a good thing and looks to be an easier recovery. Below is the link.
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I met with my RO today to discuss my treatment plan for my brain mets he went over MRI results with me. I have numerous mets (very small) scattered thru my brain. He advises WBR with 20 treatments over 4 weeks. This could be done within 2 weeks but wanted to lower the dose. I questioned the cyber knife but he stated with numerous small mets and to make sure he got everything he felt WBR would be the better choice. I meet with my MO this Wednesday to discuss with him and schedule my CT Scans. I had no symptoms other than Left sided weakness and loss of balance. I have been diagnosed with Vertigo so this part was not unusual for me. My TM's went from 8.0 to 15.0 still well below normal. Would love to learn from the ladies ( or gents) who have been thru WBR what to expect. Hugs to all of us
Wanda
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Pagej,
I have only had experience with a traditional craniotomy to the temporal lobe. My met was attached to a vein. I will say, for having your skull cut open and all that that entails, my recovery/downtime really wasn't bad. I actually found it an easier recovery than my mastectomy. I'm hoping there are some less invasive options for you. You are in my thoughts!
Carrie.
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thanks Carrie and Mara!
I keep hearing the recovery is easier than double mastectomy which makes me feel much more relaxed. We're tough aren't we?
I will actually be relieved if they go in and remove it. Im having a scan from a new PET-MRI hybrid machine at UCSF, only one scanning currently in US. As a part of a study so it's free, this coming Tuesday. This new tech will help resolve radiation treatment affect vs tumor.
After the results are interpreted I will find out if they want to operate or let it continue to die it's ugly death...
Carrie- where was your incision located for temporal lobe
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That sounds like a great plan of action! My incision is about two fingertips width above the top of my ear, it's pretty close to my temple/hairline. It's probably 4-5 inches long. Thankfully I wear my hair short anyhow and my neurosurgeon only shaved what he needed to to do the incision. The shaved part grew in pretty fast, too. Now that my hair has grown in, you can't see it at all. My neuro onc always remarks that he forgets I had craniotomy because I don't look like I did...not sure what that means, but I'll take it.
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Wanda, I am sorry you are having to deal with those mets. I will share my experience and make some suggestions.
I had WBR almost a year ago. I was on steroids during WBR and a couple days after. I experienced nausea, profound fatigue for approximately 3 months. The radiation will work in your brain for months after. You will think you will never be less tired but after 3 months you should notice a quicker turnaround. You may experience tinnitus at different times. It will go away by itself. You will lose your hair. My WBR was over a two week period and it fell out the next week. I decided to shave my head so I did not have to wait for it.
Things you can do to speed recovery that helped me were daily walks, and eat as much protein as possible. Rest as needed BUT try to do as much sleeping at night as possible. The exercise need not be too vigorous and even walking around the house is helpful. This will help the appetite. Food aids recovery.
As time goes on you should expect your cognitive ability to be similar. When I first finished, I had some trouble with short term memory issues. Gradually, as fatigue was lifting and eating improved, this came back to me.
WBR is a scary prospect BUT it is doable and will make you feel better after word. It is just not a quick fix.
I am glad I did not refuse since I was not given more localized options. I feel better than I have in 2 years. Good luck.
One last thought. If you are googling support groups, stay away from brain cancer accounts. I stick to this site and another http://www.brainmetsbc.org
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Mara, so glad for your post. Would you mind if I sent you a PM
Wanda
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Sure you can Wanda.
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Mara, the Namenda right? Recommend?
Just read The last Goodbye by David Servan Schreiber, worth a read.
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Namenda can be used to lessen cognitive effects from brain radiation
I would recommend it.
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Thank you ladies for keeping me off the ledge about the lumbar puncture today. Definitely doable and now just waiting for results.
Sending healing wishes to all
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We'll wait along with you Kathryn. Hang in there.
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Hello, I hope you all don't mind me barging in on your group with a question but I'm a little concerned.
I've noticed that my scalp feels numb (like my left breast/underarm area post surgery), just for the last couple days. Is this a common brain met symptom?
Other things, FYI. I started rads a week ago and have my head in a tight mask due to a pre-chemo positive supraclavicular node, I've also been using nioxin shampoo/conditioner to hopefully help my hair grown in a bit quicker. Maybe these are factors? I'll see what my MO has to say but wanted some opinions, if you don't mind.
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Illimae, I would definitely let you MO know. This is not to say you are having a symptom of a brain met, but it is NOT normal either. There are other things that can cause it that are more benign but best to rule out progression to the brain or a skull met. Pinched nerves can also be an issue, no way to know for sure. They can do a quick scan. I did not have numbness myself and symptoms widely vary since mets to different areas of the brain cause different symptoms. Good luck!
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Good results! No LM found in spinal fluid this time! Still hope for some treatment for the single met before LM happens. Any recommendations before I meet with my doc
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Good results! No LM found in spinal fluid this time! Still hope for some treatment for the single met before LM happens. Any recommendations before I meet with my doc?
Wishing you all a good week!!!
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If it is a single met, depending on the location you may qualify to have it removed surgically. You also may be able to see about getting the gamma knife which would only target the met and leave other brain tissue alone. This would be less grueling than WBR to recover from.
Just want to wish you luck, keep us posted.
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How big is the lesion? If less then 3cm and systemic disease is under control then Gamma Knife is the best option. My wife has had 19 lesions treated over the last 2 years and they have all virtually gone.
Good luck
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Hi everyone! Please, pretty please, send prayers, good thoughts, good vibes my way. Tomorrow I have MRI after doing SRS about a month ago. I'm terrified.
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Sending my thoughts your way for a good MRI!
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How did you all know you had brain mets?
Been seeing grey spots, and head has been aching a lot.
Should I request a CT?
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Gramen- Sending good mojo to you!!!
Lita- symptoms vary widely! They ordered an MRI when mine started. (Dizziness, pressure/ numbness on left side of scalp and face).
Mara and Freakzilla- thank you! It's very small, but my cancer is ILC and usually looks like spider webs instead of solid tumors. Still only one tiny lump shows in right breast after two years-until you do MRI with contrast. Then it looks like a silly string bonanza. Wondering if brain thing is similar. Do xeloda or abraxane through ommaya reservoir do better or is radiation the preferred method for ILC
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Iwrite...I've been very dizzy and light-headed, too-almost to the point of passing out, but that's a symptom of so many things...chemo side effects, low RBC count, low iron, low blood pressure, and I have at least three of those conditions. Seeing MO on Wed, so we will get to the bottom of it. The grey cloudy spots in vision are pretty concerning...can impair one's ability to drive, so this afternoon DH drove me to DMV to get app for my travel placard.
Also more nauseous than usual, but I don't have any additional numbness...YET. Can still walk fairly well when right hip cooperates. Fatigue is mezzo-mezzo. Who DOESN'T have fatigue when on chemo?
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garmen sending prayers and positive vibes your way 🙏🏻
Iwrite so happy with your news Mara is spot on with her advice
Lita I had left side weakness dizzy with nausea, no headaches felt relatively good I had been diagnosed in the past with vertigo so this was nothing new for me. I would speak with MO about CT. Could be a number of things.
I am presently going thru WBR and just finished my first week and have 3 more weeks to go. So far so good. My bone is presently pretty quiet and have not had my kadcyla since November 2016, no progression. TM's are 15.
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Lita, anytime we have issues with vision, especially when cancer is in question, I think a scan is in order. If you can get an MRI, that might be better. CT can find things as well though it may not show small lesions. Your issues could also be related to a migraine as well. Dark or grey spots are common to those but I would rule it out myself with at least a CT scan. Keep us posted.
My brain met symptoms were related to the brain swelling, extreme pressure, think nutcracker. No other real issues other than the pressure. Was always worse for me in the morning. Was not a constant thing though. I misread the pressure and thought I was just dizzy.
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Wanda, forgot to say, glad you are doing well so far.
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My cancer has mutated and progressed. Brain MRI scheduled, then we will work on a plan.
For now, switching from Xeloda to Taxol.
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