Brain Mets Sisters
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I passed your email along. She will get back to you I'm sure. She's great.
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Good luck, Agness, I'm so sorry to hear about your leptomeningeal disease, I hope the IT treatment works well. Sending my best wishes your way..I'm here locally (north Seattle), so if you need help, PM me. Sometimes I wonder if us Seattle gals should try to meet for coffee or something, there are a handful of us.
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I know a few other Seattle gals on a couple other boards as well. We should get together we have to much misery in common not to. I live on Capitol Hill.
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agness, I am so sorry you are going through so much! It sounds horrible and I will keep you in my prayers for sure. You are such a strong, resilient lady and you will beat this setback. Have faith.
((hugs))
Barb
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agness,
How are you feeling? I'm always looking for an update from you. You are a warrior. Hugs, letranger
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Hey. Got my third dose of IT Herceptin today and In going strong on the ketogenic diet too. Pushing lots of fluids.
I've been taking 2mg of Dexa twive a day and about 2 caplets three times a day to deal with cerebral edema. I stopped Vicodin yesterday as the discomfort is so mild.
The really amazing thing? The roving facial pains, numbness, shooting sensations, ferling of fullness and stiff neck have all diminished over the past week. My friend who's wife passed of a primary brain tumor was amazed by my low dose. He's the one who out me on to the Boswellia Serreta.
My sleep is still disrupted which is interesting, it happened after my craniotomy in the summer too. Last night I was sound asleep from 10:30-3am but in my sleep my body was trying so hard to wake up, wake up, wake up, thstvInginally did. I definitely have a serious sleep deficit right now.
I was able to help with my kids and get things back close to normal for them. Having me in the hospital was hard on them and it happened so quickly that I didn't even have time to discuss it with them. Mommy's back now, don't worry.
I think all HER2 patients, deep brain mets or not, deserve this shot at targeted therapies. I'm so pissed for every HER2 gal who was offered rads instead, especially WBR. I'll postvmore later about why. This gal needs to sleep.
Mwah!
Ann
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fantastic update, agness! Your sleep disruption might be from the dex. When I took it during chemo and after SRS my sleep was horribly compromised. Then when I tried to wean myself off of it after SRS, I had a terrible decadron crash.
Saw my onc yesterday and she says I'm very unusual in my disease. I still have all those lesions and asymtomatic. No disease from neck down. So plan is to meet with Stanford for new trial next week. And possibly get a couple of the lesions zapped with SRS. Hopefully that treatment won't exclude me from any trials. I asked for IT herceptin and of course she said my insurance would not even cover it. Frustrates me because it only makes sense to me that it would be worth a try!
Wishing you rest and sweet dreams whenever you can get some zzzzz's. Xo letranger
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Agness - wonderful update. Hopefully you can continue to manage the day to days with your kids for many years to come. You continue to be in my thoughts.
Letranger - best of luck with the trial! My onc made a similar comment about my single brain met and NED status. He also finds me unusual since I am HER2-. Here's to being unusual for awhile to come!
I have an appointment tomorrow with gyn to discuss a total hysterectomy with ovary removal. Tamoxifen is giving me too much trouble to continue taking. I'm 51 and ready to move to the AIs.
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good luck on your appmt, goodie. My onc says I'm the only patient she has like me. She says she does not come across brain mets as the only site of progressive disease. She also says she thinks I am beating the odds with how far I've come. I hope I am beating the odds. I've had bran mets for over a year now. I am taking a chance by trying these clinical trials and prolonging WBRT. Sometimes I wonder if I should just do it. But my onc says I have this window of opportunity to try drugs since I am feeling ok. So I may be just prolonging the inevitable. But it's my choice and I have to try.
And I'll post info on the trial after my meeting with clinical trial doc later this month. I think I get to keep my hair. Hooray for that. But I'm willing to part with it. The hair makes me feel a little more "normal" or not a conspicuous cancer patient.
In addition, I've been reading about the drug tarceva. Anyone try it for brain mets? Or have any info about it used with mbc patients?
Xo letranger
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Here's to be different and unique to our oncs for many years to come! It will be 1 year since my craniotomy in February. Last brain scan at the end of September was clean, so my onc pushed me out to 6 months for the next one. That will be in March.
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I too have the brain as my first distant mets. It as gone to my lymph nodes but close to original site. Besides, I had lymph involvement since mastectomy in 2010 and was dx at stage 3. April will be one year for me since my last SRS. Switching health groups so I will meet new onc tomorrow and discuss when next scan will be scheduled. I don't know if I want one. Does that make sense? I feel like if I have it, and its back in many places and bad,will it help me to know there really isnt anything they can do to cure it so why spend the time I have left being scared? It a hard decision.
Barb
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Ive been hesitant to join this thread but here I am. Im TNBC. I had a solitary good sized brain lesion last December. Cranitomy, CKS after. I had some lymph nodes in my chest show up on a scan in Feb, so I was started on taxotere then weekly taxol then abraxane. I had been NED since July, chemo holiday since Sept. In October my brain MRI showed 2 small lesions that were zapped with CKS. My follow up brain mri last week showed "several" tiny scattered lesions that were too scattered and many to treat with CKS. I started WBR today. Im so scared of the side effects and this just feels like its beginning of the end. Is there hope? Please?
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yes there is hope. And. new treatments emerging. I had one large and several small scattered brain lesions in July 14 treated w craniotomy and WBR. Whilst I also have a bone met and some inflamed chest lymph nodes, so far so good on brain. I lost my hair and was v tired about 2 months father WBR but went back to work and have carried on working full time. No apparent cognitive issue
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Bosco ! I remember you from previous threads. I'm so glad to hear you are managing ok. Has your hair grown back? This makes 4th time I will lose mine. Grr.
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Lauralind5, what is CKS please?
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lauralind5, welcome here! But it sucks thatyou have join us here. Happy to have you join in our discussion! And there seems to be already a few WBRT ladies chiming in with their success! No, it's not the end and there is hope. We don't know how long we'll be here, but I have a 4 year old boy who is tied to my hip and needs me so I need to believe there is hope. I'm sure the ladies here can help answer your q's through WBRT treatment.
Keep us posted cuz we care.
Xo letranger
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CKS= cyberknife robotic radiation system
letranger thanks so much !
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I've been thinking about your question asking if anyone has heard from smiley47. I'm also wondering about catesmom.
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Hi all, thanks for sharing all of your updates. So important to our advancing the treatment options.
Whole Brain Radiation
I have been offered WBR several times now. First after they resectioned my cerebellar tumor in the summer. I declined and received LINAC SRS to the tumor bed instead.
Then last week, the proscribed plan included WBR. I declined to the RO -- who admits she doesn't know what targeted therapies can do at all. I was even lambasted by the MO (hello? not your practice area or discipline) for declining WBR.
I still have WBR in my back pocket if I want to do it, if treatment doesn't work. It isn't off the table. But consider this:
They offer WBR because it it standard of care
They offer WBR because "sometimes" it works
They offer WBR because they believe we are going to die soon anyway so it is a reasonable palliative measure in that situation.
It might buy weeks, months or if you win the jackpot -- even years. If you live long enough then the side effects will likely become evident, the toxicities to the brain of irradiating it are permanent and you cannot undo them.We do know that the emerging standard is SRS to multiple lesions
We do know that up to 30 disparate lesions have been treated with SRS for other cancer types (melanoma)
We do know that what insurance is willing to pay for influences what is being offered.
Given our diagnosis/prognosis actually improves our chances of getting access to developing practices and treatments -- but you have to be willing to fight for it.
Many here have had WBR and I know it was tough for each I have seen make this decision. I met someone who is 10 years out and cancer-free and had WBR (possibly also because of immunotherapy). Another who is 5 years out. It might be what is needed for you, it might be the better option for certain malignancies, just take time ti understand it and know rads isn't reversible.
Tumor Tissue Sequencing
Having just had a Foundation One assessment of my brain tumor last month has been very elucidating. I can look up different genetic aberrations and amplifications in my carcinoma and compare it to known factors for treatment resistance, understand what clinical trials and drugs, perhaps even got other types of cancers, might be appropriate to consider trying.
I couldn't get anyone on my oncology team to listen to me when I said I wanted to do more. I asked my naturopathic oncologist about it however and he said "I can order that, I just need someone at the hospital to help facilitate gaining access to tumor samples". My breast surgeon is an advocate and the report went through promptly.
My MO, new to my team this summer when my other MO retired, she was pissed off. "I would have waited until you failed front line therapy or had resistance," she told me. "I was just at a conference with other west coast MOs and none of us know what to do with these reports."
If I waited then it would be too late with my progression to LM. The fact that our MOs are not enlightened and are freaked out by new information forms that are outside of their training is NOT MY PROBLEM.
Insurance might not foot the bill and it might cost anywhere from $3k-$7k to get the report done. I think my life is worth more than that and that should not be the reason it isn't brought up or discussed with us. I'm a grown-up and it is my ass on the line, not theirs.
The Brain Microenvironment
Why do we have brain mets? Because we have cancer cell lines with an affinity for the CNS space. It is protected from most chemotherapy medicines due to the blood brain barrier. The observed saturation of drugs getting into the CSF is less that 1-5% depending on surrounding damage to the BBB from the tumor/craniotomy/rads. You can even request to have a lumber puncture done to see how much drug is getting in there. Anyone done that or had it offered
The brain is also a glucose-rich environment, conditions to culture the very anaerobic conditions our cancers love to be in. Yes, you have cancer cells in your head eating bon-bons right now.
The Warburg Effect is the name of the observed behavior that cancer cells have an increased metabolism for sugar. It is the exact principle at work when they have you do a special diet and fasting before they shooting you up with radioactive sugar for the PET test -- which shows the tagged sugar making a beeline for cancer cells in your body.
Our bodies actually have two fuel sources at the metabolic level, glucose or ketones. Glucose is sugar and our digestive processes can turn most things into sugar. The ketones are actually energy produced when your body is burning fat instead. Cancer cells are maladaptive, they can use glucose but can't effectively use ketones. This effects a further heightened in the CNS. You can fight back against your cancer metabolically -- if you are willing change your diet to an ketogenic diet.
[continued
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What is a Ketogenic Diet?
I first heard about it when I was diagnosed by a friend who was using it on her own health journey two years ago. She told me that since I was so depleted that I should use a modified approach, to help my body restore. I cut way back on carbs and alcohol. I declined desserts or would have the tiniest bit.
Last winter I had chest wall rads at the proton center as part of a trial. I met several people with primary brain cancer including an 11 yo boy and a young doctor who's wife was devastated. A good friend of mine had his wife pass away two years ago from a brain tumor; he works in cancer research locally and he gave me some pointers he learned from their experience. Little did we know what was coming in my future -- HER2 brain mets.
I researched a ton of complementary and emerging practices that could help outside of what oncology was offering to help increase the effectiveness of treating brain tumors. One thing that jumped out again was the brain's glucose-rich environment and using ketosis to alter things.
The ketogenic has been around for almost 100 years. It is a current treatment for certain types of epilepsy that is resistant to treatment. My hair stylist actually uses this diet for her epilepsy. This website is a cornerstone for information about the Ketogenic diet:
http://www.charliefoundation.org
I read this article on Mercola soon after my original diagnosis and found the video at the end really intriguing. His list of lifestyle changes isn't too bad but his woo-woo "it's a big business" is a bit out there so ignore that part. Oncologists are just technicians and they offer the proscribed treatments. If anything they are just complacent. One MO at a leading cancer hospital told me "you can eat Ben & Jerry's ice cream during treatment if that is all you want." Stupidity and ignorance but you don't have to follow their lead.
Cancer: Forbidden Cures | Natural Cancer Treatment
http://articles.mercola.com/sites/articles/archive...
This is the book that others have mentioned here on various BCboards, I haven't read it yet.
Cancer as a Metabolic Disease: On the Origin, Management, and Prevention of Cancer
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Good Ketogenic Links to Check out
Ketogenic Diet Food List: Everything You Need to Know
http://www.ruled.me/ketogenic-diet-food-list/
Ketogenic Diet Resource
http://www.ketogenic-diet-resource.com/low-carb-fo...
Keto Calculator
http://keto-calculator.ankerl.com
Shaking up the Salt Myth: The Human Need for Salt
http://chriskresser.com/shaking-up-the-salt-myth-t...
More Than You Ever Wanted to Know About Potassium Supplements : keto
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Anyone on Tykerb? Because of side effects I am down to one pill a day and even with that I have horrible side effects. I skip a pill when it gets too bad.
Amazing, in September I had a brain MRI. They found 10 tumors. I wasn't on Tykerb until mid November. I just had a detail MRI that showed 11 tumors but very tiny. They really haven't grown since September, and some are shrinking. I am on Herceptin and Tykerb. Nothing else, but trying to stay away from white sugar and eat good food.
However, I've progression of skull mets. Is there a way to get rid of skull mets without wbr?
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Hindsfeet, I am so sorry that you have skull mets. Are they or your brain tumors symptomatic? How are you otherwise?
Thinking of you and sending Big Hugs
Lisa
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Lauralind, how is your WBR going? How are you feeling?
When is (was?) the anniversary of your craniotomy? That's a big accomplishment!
Big Hugs
Lisa
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Hello brain mets sisters. I haven't posted much, but read frequently. Yesterday I had my final visit with my specialist RO. He's discharged me because there's no sign of active cancer in my brain. My met was detected about a year and a half ago when my left leg started misbehaving. An MRI showed a single met and SRS took care of it. Last spring my follow up MRI was showing possible progression. Referral to the specialist who diagnosed the mass as immune response of my brain which he says augures well for long term survival. Thinks my robust immune response helps explain why I'm NED. He's seen it before, they don't know why it happens, sometimes it goes away, sometimes it grows. For awhile my left leg was fine. Lately there's been some deterioration which I'm dealing with via PT. I'll take a limp over a inoperable brain tumor any day. Guess there's always some collateral damage.So now I'm NED both above and below the clavicle. It's a whole new world for me!
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MarshaMay, thank you so much for this news. It gives hope for us little BM Sisters!
I know what you mean about options. Before my surgery, they said they might not get it all out because they want to preserve my speech. I said, Forget that, scoop away, I just want to live!
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Wonderful news MarshaMay!
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Lisa Ive had 4 zaps so far. Ive been really nauseated from the start so Tuesday afternoon I started on dex which has helped tremendously. Otherwise I have some weird taste thing going on, a few cognitive issues and a headache. I saw my MO today and in January I will go back on something systemic to cross the bbb. Its unfortunate that I have to because Im very clean from the neck down but I do want to live lol I felt encouraged after the visit, like I wasn't going to die tomorrow or next week. She wants to start a platinum drug because I responded so well to the taxanes.
My craniotomy anmv date was Dec 8. Its crazy that was a year ago. I didn't think I was going to live to see last Christmas.
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MarshaMay....thank you so mush for posting and congratulations on being NED! So happy for you! Please keep s posted on your met-free life! Wishing you well.
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Hi Lauralind5...Dec is an inauspicious and month for me, particularly Dec 9! I had my BMX in 2013 and then I had my SRS on the same darn day in 2014! Well, the date passed this year, uneventfully, this year! Thank goodness.
Sorry to hear about your nausea. I always said that if I had to do WBRT, I would try cannabis. I got my card several months ago, but have not used it. It's good for a year. Not sure if it is an option for you. I'm glad that you feel encouraged after your doc's visit. It's so very impt to have a positive outlook. I know it's hard and I have had bummer days like.....seriously, am I really going through this???? Please continue to pop in and tell us how you are doing. BTW: I am interested to hear which platinum drug you onc is recomending.
Hang in there! xo letranger
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