Brain Mets Sisters
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How are you feeling Agness? I was wondering what your next treatment might be and how you were doing in general, glad to see you posting.
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I had a ct scan this week and they found nothing systemically. Nada.
There are two lesions in the liver that they call hemangiomas but before there was only one in 2016. Maybe the car t works on less bulky disease. Does that make sense?
As long as non-standard treatment (Avastin, Topotecan, Herceptin)works/is available to me then you are stuck With me
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Yay for the good scan results and treatment doing its work 😀
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Congratulations on good ct Agness
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wanted to give you ladies updates..looks like mom might have Leptomeningeal disease anybody heard of this? We are waiting to c what doctor recommends.
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Yes, it is serious but hopefully still treatable. We don’t know the specifics about your mom’s cancer type but I was recently tested for suspected lepto mets myself and know that in some cases a special port can be placed in the head to deliver targeted therapy and/or chemo. According to the neuro oncologist I met with, a few people at the cancer center have been on this for 7 years now. There are many variables and everyone is different, please let us know what the docs say.
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Jmo06, my mom was diagnosed with LM as well along with new growth and had wbr for the second time. She was then put on Xeloda and just finished her first round. Won't know anything until upcoming scans in May. Feel free to message me with any questions.
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how many here have had radiation to the same area of the brain
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Me, had WBR 2016 then local treatment to my surgical bed earlier this month after local recurrence. The tiny lesions were in the same place as my original met. No SE thus far.
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I've followed the brain mets board since being diagnosed in December. I'm about to start WBR tomorrow after doing gamma knife in January.
Any advice anyone can offer? I'm terrified I'll lose my memory, that I'll be nauseous and vomiting for two weeks, that I'll have headaches, that the cancer will come back. Anything you can offer for some reassurance or advice would be so appreciated.
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Azs, I had 10 wbr Tx, and I did just fine. I have 20+ brain mets. I took Namenda/Memantine for 6 mos. It's an Alzheimer's Rx that the ro prescribed. My memory is fine...short and long term.
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I can second what Lita said. I had WBR almost two years ago. My memory is fine, better even since it was affected by my brain swelling. Once I was treated, I was much better off. I also did NOT take the Alzheimer's drug BUT would recommend it if you have a lot of anxiety. Anything I have heard and read from various people here, there are few SE and can reduce some anxiety that you may have by doing this. As far as nausea, the brain is being given radiation that will temporarily increase inflammation. You may experience nausea etc BUT they will be temporary. Rest when you need to, take the steroids as prescribed and don't rush to wean off them. Though they have their own SE, it is better to follow the timeframe. Don't be afraid to ask for an increased dose if you do experience extreme dizziness or nausea. WBR is very doable and not as scary as portrayed. Half the time we are more scared of the unknown. Fatigue will take a long time to subside but will go away with rest and exercise. Your own attitude will play a part as well. If you suffer a lot of anxiety, it can make treatment recovery take much longer (I know from experience). If that becomes an issue, meet it head on by talking to a social worker, friends, family etc to alleviate the pressure. Consider meditation, there are really relaxing things you can listen to on youtube that are great. Good luck with your treatment. Even watching a good movie or TV show can help.
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Thank you Lita and Mara! First one went fine this morning. Keeping fingers crossed.
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Optimal Timing of Whole-Brain Radiation Therapy Following Craniotomy for Cerebral Malignancies.
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Agness, interesting study. My own WBR took place approx 4 weeks post surgery so that fits the timeline.
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LFF, So glad to hear that you finally got your gamma knife approved! Do you mind sharing with us who your insurer is so we can be sure to avoid it?
Lita, I didn't have a ramp-up schedule for my Namenda. I've been on 28 mgs once a day for 4 years. The study was only for 6 months but my RO said that you can experience memory loss up to 3 years after WBR so I kept taking it. No side effects so I'm just going to stay on it as long as my insurance pays for it. I do have some minor memory issues so thought it might help.
Hugs, Susan
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Susan-
It was a Kaiser/ group health. it had to do more with the outdated literature than my insurance company. I have over 17 lesions and that is well outside of the normal in the standard literature for gamma knife. The literature just Meds to catch up.
I am actually not unhappy with my insurance. They’ve paid fir everything else and are so much better than my prior insurance.
The head of neurosurgery from Kaiser called me and took time out of his personal time to see me. He then put in a referral for the procedure to also help me get it approved.
It all goes to say that I don’t fault my insurance, I just fault that medicine advances faster than their standards.
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anxious waiting at Drs office..Dr called yesterday and said might b time for palliative therapy..Will examine mom today to see if strong enough to withstand any more treatment 😢
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Hugs for you and your Mom jmo06.
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thinking of you and your mom jm06
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Thinking of you and you mom Jm60
Attempting to go off dex again, could use some prayers that it works this time I am getting really sick of being on it
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thinking of you keep Mom.
I am j48 hours post gamma knife procedure. They zapped s total of 27 lesions (17 I knew about, 10 more they found via special mri the night before).
Made fir a long day but I’m doing well. Head is still sore where the s reed went in but otherwise ok.
Keep fighting everyone. Thinking about all of you
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I'm posting here again for my sister. She completed WBR treatment in December. Her first post-WBR scan showed that many of the tumors had disappeared and the rest had gotten smaller. She had another scan yesterday (60 days after the last one) and it showed that 4 had gotten bigger, the rest appeared unchanged. Her doctor is meeting with a neurologist and radiologist on Wednesday to discuss possible treatment. She, and I, are stunned (though I realize this result isn't necessarily surprising, we hoped for better news). Has anyone had targeted therapies to just growing tumors? Is that even a thing? Wednesday seems far away and we're hoping to hear that there are some hopeful options out there. Her PET scans are still totally clean. Thank you!
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I had WBR for a brain met in 2016. It held things at bay for a long time. An MRI in Jun 2017 showed new tumours in original location of first met. I have since completed treatment of radiation to my original tumour site and will check on orogress. Localized rads can be done post WBR. My RO says that radiation in the brain can still be working to slow tumour growth. Your sister could also ask about intrathecal Herceptin delivered through an ommaya reservoir in the head. It goes straight to the brain. Best of kuck to you both.
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I have had areas of my brain retreated with rads but I opted when I had regrowth to use HBOT to increase the oxidative damage rads to cancer cells - and it worked.
It’s non-standard tx but it worked
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mara51506, I've never heard of intrathecal Herceptin, but we'll definitely look into it. Thanks for the tip. On the phone the doc mentioned possibly taking her off of Herceptin (she is no longer on Perjeta) and replacing it with Kadcyla, which he described as supercharged Herceptin.
Agness, I had to Google HBOT as I was unfamiliar with the acronym. About 6 weeks or so ago my sister started doing weekly hyperbaric treatments. I'm not sure what effects it has had on the tumors, but I can say that her energy levels and her overall well being seem to have improved quite a bit. Do you mind my asking what your treatment plan with HBOT was? I recently read about a clinical trial that involved taking some type of medicine that increased the oxygen or something in the brain/tumors -- the hypothesis was that better oxygenated tumors responded better to radiation (or at least that's how I understood it) . So I'm intrigued.
I think her doctor may be considering stereostatic radio surgery?
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just read my mri report from Tuesday before treatment. I probably shouldn’t have. I am so greatful that they were able to do gamma knife. I had 29 spots listed on the report. Crazy!
Now I am praying it worked sndvtge Xeloda Tykerb combonistion keeps any new spots from coming up.
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Yay for Gamma 😀
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Hi my Brain Mets Sisters -
A couple of weeks ago I asked for an MRI of the brain due to some very subtle neurological symptoms that had recently developed on the right side of my face. MRI came back with a 2cm lesion on the left side of brain ... nothing related to the recent symptoms.
"There is an irregular smoothly enhancing dural based lesion in the left middle cranial fossa abutting the upper clivus/cavernous sinus. This measures approximately 1.9 x 1.8 x 1.5 cm, with some surrounding edema in thetemporal lobe."
The impression was probable meningioma, possible dural metastasis of the breast cancer.
I've had a generalized weakness developing on the left side of my body for a long time which speaks to a slowly developing meningioma, but who knows.
Went to Mayo for two weeks of diagnostics ... spine MRI shows no evidence of mets in the spinal fluid and the spinal tap showed nothing abnormal in the spinal fluid either. However, because of the shape and location of the lesion, it's still possibly cancer. Less likely but possible.
Malignant or benign, there is still a 2cm lesion pushing up against my upper clivus/cavernous sinus and I am inclined to get it taken care of. The treatment would be some form of SBRT; Gamma Knife, Cyber Knife and something else I can't recall.
Processing it all the moment. My first question for you guys is whether cyber knife treatment to the brain necessarily involves a mask to hold the head still. Had my sternum treated in January. Did not like the mask at all. Gamma sounds worse in that regard ?!?!?
Interested in your experience and perspective ...
>Z<
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Z,
I am sorry that you may be joining us. I just finished 4 sessions of cyber knife at the end of March- 1 session for 3 small tumors and 3 sessions for the large tumor (> 3 cm). Yes, it does involve a mask. Overall, the mask was fairly tolerable (no issue at all for me) except for the last session (mask was much tighter vs. previous sessions) as I had "moon face" due to steroids. I haven't experienced any side effects except for some hair loss in couple of the spots - I have long hair, therefore no one could tell except myself.
Hope the lesion is benign and radiation can take care of it.
L
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