Brain Mets Sisters
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Yeah. Tough lot we have been handed but this group knows the most about dealing with treatments side effects.
Thinking of you Msureen
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Hoping you are having a restful weekend, Maureen.
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crazy question. Any long term brain mets survivors?
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I swear if I see a pink ribbon today I will scream out loud. We have a lady not far from my home that painted her whole house pink with flowers planted in ribbons et all. I'm dumbfounded
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dont know if almost 3 years counts but i am at 2 years 10 months.
maybe not long long term but longer tha they said i had. Cat hindering my typing ablitiies. I am still NED on brain scan so I count my blessings.
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that's wonderful. Dr Google scares me
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Stay far, far away from Dr. Google. I drove myself nuts when my brain met was diagnosed last February.
I had a clean brain scan on Wednesday and my doc is not recommending the next one until March. That will be the 1 year anniversary of my GammaKnife to the surgical bed.
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Maureen - I don't know what you consider long term, but I've had brain mets for 3.5 years now. My friend, Heather, passed away after nearly 10 years with brain mets, she underwent WBR twice.
Hope you're doing okay, hang in there.
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question for those who would know:
I am having increased tinnitus compared to before my brain tumor started causing issues. I had some mild ringing from chemo which mostly subsided. After my craniotomy it increased, then subsided, salicylic acid (aspirin) containing drugs caused and increase and then it subsided mostly again. I'm about 2.5 weeks from SRS to the cerebellum and my ear tinging is more pronounced. I also had a spinal fluid leak last week that I read can cause an increase intra-cranial pressure. I have only been taking Boswelli Serreta.
Any thoughts on increased ear ringing? Should I try some Dexa?
Thanks,
Ann
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my rad Onc told me there will be increased ringing in my ears that will go away over time. A common side effect. I'd check with office just to ease your mind
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Thanks Maureen
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Day 2 down. Tummy unsettled but Zofran took care of that. Crave candy and sweets. Everything tastes the same but I'm eating religiously no matter what. Need to keep strength. No SE to speak o
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Hi, my mom had 2 brain lesions, a cystic tumor peripheral on the parietal lobe around 2.9 cm and a very small 9mm cystic tumor medial to that..not clear on location...
She underwent neurosurgical drainage of the larger 2.9 cystic tumor, which reduced the size and followed the same day with SRS LINAC one session to both lesions. The neurosurgeon believed doing stereotatic drainage of the large cystic part of the tumor would make the radiation field smaller to zap the tumor!!! and as the radiation oncologist said "ablate" "kill" the tumor cells…
Now will have close MRI every 2-3 months….has anyone else gone through something similar? I see some people have more sessions…is it just one? how was your follow up?? thank you all for sharing!!...
My heart goes to all you ladies! my mom and my family have our ups and downs
its hasn't been easy for me…but reading your post and telling my mom about your stories helps us cope…I think she also appreciates knowing ladies fighting so long..and that she's not alone..Bless you all
Hope you are all recovering well!
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Sounds like your mom had something similar to the gamma knife where they deliver high dose radiation in a single dose. Whole brain is shorter doses over longer period of time. Best of luck to you and your mom
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Nanita, I had a craniotomy to remove the tumor but then only 1 dose of SRS or GammaKnife radiation to the tumor bed. I did brain MRIs every 3 months and my onc is now moving them out to 6 months. Best wishes to your mom.
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Thank you Goodie and Maureen. That is what the radiation oncologist/neurosurgeon implied my moms course would be. Surgery and one session and close follow up. She also has to see a neurologist/oncologist to closely follow as well.
Now we are waiting for her to start chemotherapy for lung mets and bone mets….
thank you all
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best of luck for a positve outcome
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Day 3. Doc check every Monday. All ok so far. I upped the pm steroid to 4 mg to keep se at bay and doc agreed. Used laxatives too much from constipation so I need to back off on that avoiding stool blood. Said if it doesn't clear need trip to ER. Going to take it easy and avoid that
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Thanks for the headsup on survival time with brain mets. I just developed brain mets & livr mets in Aug but metastatic with bone mets from the start in 6/09. Actually, didn't even want to ask about time frame as I'm not so optimistic about the future as I used to be. Will start low dose taxol in a week.
Terri
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good luck ibcmets. The shit we go through. Day 4 coming up. I'll write more late
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I was told Xeloda DOES cross the BBB.
"One of the more recent agents that has been a focus of attention for its effectiveness against brain metastases is capecitabine (Xeloda), an oral fluoropyrimidine which is converted first by the liver, then intracellularly by the cancer cells into 5-FU, or fluorouricil. It has been reported in Phase II trials to actually cause responses in 20 to 25 percent of patients who have measurable brain metastases. "
Quote taken from: http://www.brainmetsbc.org/en/content/drug-treatment-brain-metastases
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I took that drug but stopped working. Day 4 was hohum. The machine was down so had to wait a few minutes longer then in and out. No se so far. Just tightness in head and the steroid rush. Bowels back to normal.
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day 5. Had a slight dizzy spell. No passing out just woozy. Recovered quickly and mentioned to doc. He said that is common but will go away and suggest I eat more. Today I added an egg toast soup sandwich and full dinner. Doesn't taste like much but really helped with the spell. I feel normal again. 5 more to g
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Still thinking of you daily, Maureen. Hope the woozy feeling is gone now, glad you were able to eat a little more. Hang in there!
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day 6. Eating was the key. Today they did an X-ray before RX to confirm the right spots. Good idea. Then treatment. All good feeling great tugging along. I can do this
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My beautiful Jenny just found out that her BC has metastized to her brain. So far she has 13 lesions. The radiaton onc seems confident that that can be controlled, but everything I see online says she is terminal. Does anyone out there know of any 5+ year survivors?
Needless to say, this sucks. We went through surgery that was loaded with complications, chemo that landed her on the hospital several times, and now this.
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I've heard of controlling brain mets for a few months to 10 years. I'm reserving judgement until I see how my mets play out. I had 12 lesions they tried to treat with gamma and ended up with whole brain radiation now. It's not too bad and have been documenting my treatment on this thread. I hope it helps you and your wife.
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concernedhubbyalan,
We always say "Don't ask Dr. Google". You can try googling any symptoms, headaches, rashes you name it, and it will lead you down a path to death. I've said it many times before but the survival rates you see on-line are based on old data, sometimes 20 or 30 years old, and treatments have come a long way since then. They also usually include a lot of elderly people who have other health issues as well as people who had sub-standard health care.
This is the metastatic board so we are all technically "terminal". That does not mean we cannot live fulfilling and happy lives. There are 5+ brain met survivors and I plan on being one of them. Like your wife, I had 12+ brain tumors when I was first diagnosed PLUS lung, eye, and bone mets. Over a year and a half later, I'm feeling great and only one of my tumors, the biggest one in my lung (originally 4cms) still lights up at all in contrast scans and it is shrunken and much less active (SUV=1.7 where normal is anything less than 2).
You sound like you've given up hope. There is always hope. I think this disease is hardest on spouses. I know, in my life, my husband is the most impacted. Somehow, he hoped that I would be cancer-free in short order, like 6 months. When this didn't happen, he was devastated. But this is not a disease that has many fast outcomes like that. There will be ups and downs. I have had friends close to death who tried new treatments and turned things around. For many, it can be like having a chronic disease rather than a terminal one. There are new treatments coming out all the time and we just need to stay alive for them.
There are people who are taken by this disease in the 7.2 months you see on-line but I personally don't know anyone with brain mets who has had that rapid a decline. So far, only one of my brain mets friends here in the Bay Area has died and she was metastatic for 5+ years and had leptomeningeal brain mets, which used to be considered a death sentence. Whole brain radiation actually completely got rid of her leptomeningeal brain mets but she died from other mets.
Hope I don't sound preachy. I understand your sadness and I empathize with you. I always consider myself lucky that I have metastatic cancer instead of my husband. I would be much worse off emotionally if it were him.
Big hugs, Susan
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well said Susan. You are wonderful. Day 7 also uneventful. I'm holding my own. The mask is a little prohibiting but only on for about 2 minutes so I close my eyes and all is well. The digestive issues are the pain.
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Thanks, I'll check it out.
Gentle hugs!
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