Brain Mets Sisters
Comments
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Did anyone have elevated protein in their CSF after recent rads? I just got the first part of my labs back from my lumbar puncture and the protein was the only thing out of range and it was "mildly" elevated based on this link (not cancer related).
The cytology labs should be ready by Monday.0 -
my elevated protein was deemed caused by my recent surgery. My cytology (#1 of 3) came back negative for malignant cells.
Phew!
Next lumbar puncture will be this Thursday.
-Ann
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Hi Ann,
I hope everything went ok yesterday. Is there any reason you had the SRS Boost two months after resection? Is that generally when it is done?
Thanks
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hi all going for a brain MRI today due to weird symptoms with my leg. Everything else is under control. Liver and bones received good report. I had gamma 3 times so not sure if this is a SE or something is going on? Guess we'll find out. Wish me luck
Love
Maureen
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Good luck, Maureen. Keep us posted.
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Thinking of you Maureen!
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Won't know results till Monday. I hate when they do that.
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Second lumbar puncture done. My neuro-onc thinks it looks really good, totally clear. I'll have a third puncture done next Thursday and then an MRI about a month from now.
I still worry some but I'm not a mess at present about it. We will keep monitoring for changes, perhaps repeating the lumbar punctures at the start of 2016.
SRS was recommended 4-6 weeks post surgery. I wanted to push it out as I wanted more time to heal before introducing rads. From a Chinese Medicine standpoint it was also better to wait longer for the shift of seasons. I had a big gathering of gals from my online cancer group at the end of the 6th week and I wanted to start rads after that, also when my kids were back in school. That is how it ended up being the 7th week
I did 5 doses of LINAC SRS and today my hair started falling out from the treated area. It's about 2.5 weeks from the start of My tumor bed radiation treatment, and 1.5 weeks since treatment ended. Damn my scalp is sore. I've been told that hair follicles are very sensitive but that it should regrow with SRS (inline my underarm hair and proton therapy for 35 doses). Regrowth will start in 2-3 months. Time to start taking BioSil again.
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Bad news. I need whole brain radiation. Can someone tell me about this or direct me to a thread
Thanks
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Maureen,
I'm very sorry to hear you need WBR. I don't have any personal experience with it, but I did read about it at length in the early parts of this thread. Hopefully that can be of some help to you.I have my next brain scan on Weds. It's my 4 month scan check-up. Last one in June showed no new activity and the surgical bed was clear. I'm praying for similar results.
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Sorry to hear that Maureen. There's info on WBR further back on this thread with several gals who have been through it. There's also information on http://www.brainmetsbc.org, which I think is a helpful site. Thinking of you.
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Maureen - I posted an article link from 2015 about use of SRS for brain mets at the bottom of page 121 of this thread, even with multiple lesions and requiring multiple times. You might print it out to discuss with your oncologist as an option in place of WBR. It is new information and your doc might not be aware.
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I took a vacation abroad and the little demons awoke to stretch out their spiny fingers to see that the weapons holding them in check were gone. They quickly gathered the forces of the sleeping enemy. They worked fast. But, I saw my game was off realized the demons were growing in number. I had to hurry home to back on meds that would stop it. It was too late. They got into the inner chambers, and now the meds won't work. Thus the doctors put their heads together and said I should nuke the guys/demon cancers. I stepped back, and said, "hold on" before you blow my brains out. I had to think. Would I go against my personal conviction about using toxic chemical warfare? Thus far I've played safe. But now, it is all different and I have to go back to the drawing board. Multiple brain mets is a game changer! I have a lot of work to do in looking at every aspect of the enemy, and warfare. How much collateral damage if we blast every brain cell? What long term benefits? Will it or chemo prolong life and that is with quality. Will I win the fight but lose the battle? Is it worth it? Does anyone overcome giants like brain mets? Is it better to surrender, and give up the battle. Is there still a chance?
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HIndsfeet- I love your creative writing. good luck making those decisions. I will say that I had two left frontal lobe lesions that I zapped with gamma knife in December of 2012. I have been clear ever since. My last MRI was earlier this month and I still am tumor free on image. So I say going to war is worth it. But I don't know where your lesions are, how big they are, or how many you have. Just wanted to let you know that going to war worked for someone.
Best wishes.
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Hindsfeet - it is a personal choice of course, but I agree with leftfootforward that "going to war" as you put it can be worth it. I've had multiple brain mets for nearly four years now, we keep swatting them down with gamma knife, cyberknife, and surgery. My most recent gamma knife treated 11 lesions with zero side effects. Best wishes to you.
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doc just said 3-6 moths with no tx and unknown with. WTF IS THAT
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Maureen - with HER2 disease you have a chance, the June 2015 ASCO meeting said for HER2 brainmets all bets are off.
Your prognosis tells me you have leptomeningeal spread - it is under disgnosed for all breast cancer brain mets patients. With evidence of LM you are eligible for intrathecal treatment trials and they are having successes with treated patients -- even those only given a few months to live.
I hope your cancer isn't resistant to targeted therapies. Check out these links:
http://www.brainmetsbc.org/en/content/available-cl...
http://www.her2support.org/vbulletin/showthread.ph...
BTW - we are all in the same boat, they just don't know anything
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one more:
"Michelle E. Melisko, MD, of the University of California San Francisco Helen Diller Family Comprehensive Cancer Center, discussed management of brain metastases. Overexpression or amplification of HER2 is associated with a high risk of brain metastasis, with several trials showing the incidence rate ranging from 31%-43%. Although many patients with HER2-positive disease develop brain metastases, "their survival is actually favorable compared to other patients with other tumor types,"
https://am.asco.org/questions-remain-about-optimal-treatment-her2-positive-breast-cancer
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No her2 for me
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Hey Maureen,
My husband was diagnosed with Lymphoma Meningitis in April. He had 4 rounds of high dose chemo and an autologous stem cell transplant. He finished everything in July and is still having some precautionary methotrexate shots through his ommaya port every two weeks. We were told a few weeks ago, there is minimal enhancement on his MRI ... not knowing if it is cancer or not, they decided to do localized radiation.
For the last two weeks, he has been having very bad headaches along with vomiting. Thinking it was a side effect of the chemo shots we weren't too concerned, but yesterday he had his first radiation treatment and this morning he woke up headache/nausea free.
Now I am worried that he still has cancer in his brain. I hope everything works out for you.
Jessica
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damn. No HER2. How about genetic testing for anomolies?
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Had every genetic testing known to man. Company I worked for speciality so I had the works!! I'm hanging in there but scared to death.
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can you contact these folks for a consultation? My Naturopathic onc recommended them to me as an option.
http://www.cancertreatmentnavigator.com
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Thanks. Will ck out
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Tuesday I was fitted for my mask. It's a warm mask that you can see and breathe through. I kept telling myself it Ed the most expensive facial I've ever had. BTW I never had a facial but got me through the process. Then they put me through the CAT scan for mapping the lesions. I have A LOT. no numbers just a lot. Hmm. 10 treatments start today wish me luck
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Good luck, Maureen. Thinking of you.
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All done feel ok. Not great just a little wired and ok
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I found that 1/6 of a Dex tab with 8-10 Boswellia Serreta caplets (300 mg each, taken two together) helped keep brain discomfort at bay. You might be able to cut back on the steroids that way. Taking naps and getting sleep is best for healing the central nervous system and steroids keep you up.
I hope treatment goes by quickly and does an excellent job at controlling your disease
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thank you agness
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I love how everyone on these boards look out and help each other.
Rest well Maureen
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