Brain Mets Sisters
Comments
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In a span of 2 months my little lesion (3mm) gave birth to 9 other little lesions spread evenly throughout my brain. I agreed with RO today that WBR would be the only recourse. Zapping these lesions one at a time will be like whacking a mole.
I am shocked, tired and very, very sad and disappointed.
WBR starts on the 18th of August. There will be 15 sessions. Apparently the more you spread out the number of sessions the less chances of permanent cognitive impairment. I asked for 20 and he researched it, but RO insisted that 15 is the best number.
Hugs and prayers,
Brenda
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Brenda,
So sad to hear your news. Hoping WBR will wipe those suckers out and that your SEs will be minimal. I posted earlier about a tea I used to drink twice a day and some special foods my Chinese medicine doctor had me eat every day. PM me if like.
Big hugs, Susan
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Hi, Marcia, my left arm and hand have slowly gone numb and are pretty useless to me now. I'm right handed so not as debilitating, but typing is a challenge. I had 10 WBR sessions which ended a few weeks ago and haven't had any hand/arm improvement. This disease is a bear.
xoxoxoxoxox
Calico
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Susan: I pm'd you.
Calico: Hang in there. It takes months to see how WBR worked on your lesions.
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Hang in there ladies. I had WBR x 15 in April of 2014. Scans have been good, not gone but not flaring up either. I am just now getting my hair back...no biggie, my temps too hot for long hair anyway. Came in totally gray too, can live with that too altho am only 60yoa. There is hope, just do your research thru BCO at least or another 'reputable' site. This is a horrid situation to be in but live can continue. Sending prayers & positive healing energy out to all.
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im currently doing rads for early stage bc and then off to tamoxifen..my doctors all feel that i caught it early and that i dont need pet scans.. Tamoxifen will take care of stray cells(if any.. Can i have some thoughts on this from you ladies as i have occasional dizziness and sciatic nerve pain and of course i get depressed because of my thoughts that maybe doctors are wrong.. Im always praying for everyone going through this regardless stage
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I researched brain cancer while undergoing proton therapy (experimental) for my left-sides breast cancer; proton therapy is used to treat many brain tumors.
I learned in my research that brain tumors are highly dependent on elevated copper levels, which are primitive of inflammation and angiogenesis (recruitment of blood supply). Copper levels tend to be high in breast cancer patients and zinc levels tend to be low; my own levels were tested before I started treatment and quarterly throughout the past year and I had sky-high copper and incredibly low zinc. My naturopathic oncologist had me on 60 mg daily of zinc, plus I cut back on copper containing foods (coffee, chocolate, shellfish, liver) and worked on counterbalancing any stress irdehydration causes that my might cause my adrenals to a to thrown off my levels again. There I also a copper chelation drug that has been has used which works faster but requires strict blood monitoring.
These are tests that any lab can do. Have your doc check your serum zinc, serum copper and ceruloplasim levels -- plus RBC magnesium while they are at it, another one that tends to be super low for cancer patients.
Quantitative analysis of copper, zinc and copper/zinc ratio in selected human brain tumors
Copper depletion shows early success in triple-negative breast cancer: Discoveries
Serum copper and zinc levels and copper/zinc ratio in patients with breast cancer - Springer
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Next thought on brain mets and fighting back from a metabolic level: brain cancer is highly susceptible to reduced glucose levels.
Studies have shown, as evidenced by anyone who has had a PET scan done, that cancer cells love glucose. Using a special ketogenic diet can alter metabolism in a way that (with supplementation) is completely natural to our bodies but which our cancer cells are maladapted for can heighten metabolic differences between the two in our favor. While not perfect, as some cancer cells can adapt to a ketogenic diet over time, used in spurts with cancer treatment this can add a layer to the fight.
Using fasting or calorie restriction to lower glucose levels can also heighten this difference, plus it has the benefit of pushing our healthy tissues into a type of stasis where they are better able to resist and repair from cancer therapies (chemo and radiation), while malignant cell lines are made more vulnerable to the oxidative stress of treatment. The trick is that fasting needs to be periodic in fashion so it needs to be tailored to a cyclic fashion, and consideration of treatment induced anorexia (loss of appetite) is a factor.
Brain cancer is especially susceptible to glucose deficiency -- it was even studied for psychotherapy purposes many years back. Many breast cancer patients have dysregulation of sugars in their bodies as our liver function can be compromised due to overtaxing it (too many xenestrogens, too little zinc, too much fat, not enough exercise, etc.) Metformin has been looked at to try to reduce insulin levels in cancer patients.
Here are some links to consider:
Ketogenic Diet Plan: Get Started Here!
Fasting improves efficacy of radiation therapy | USC News
""enzymes involved in glycolysis, TCA cycle, and OXPHOS have been found to be up-regulated in models of breast cancer brain metastases" (from above link)
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Another possible addition to treatment of brain Mets is the use of hyperbaric oxygen treatment. Brain lesions are highly susceptible to the increase in oxygenation in conjunction with radiation. From what I read, radiation treatment needs to be done within an hour of radiation treatment. I think pairing this with fasting for shorter length treatments would be doubly protective of healthy tissue.
This would not be standard of care, you might have to pay for it out of pocket if you are able to convince or find a team and location willing to try this for your treatment. But, it isn't without evidence and some research to back it up. A lot of what we are offered is based on what insurance wants to pay for and cost-containment. There are no studies to show that it will increase longevity but for newer mets with less disease progression, and working on restoring metabolic issues, it might improve outcomes and lessen the reliance on other future depleting treatments.
Potential roles of hyperbaric oxygenation in the treatments of brain tumors.
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First session of WBR went well. I don't have any negative side effects yet. Hope everyone else is doing well.
Hugs,
Brenda
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Check in time! Doing well last of Xeloda today then a break. I'm going to visit my family in Wisconsin with my three kids and mom. We're leaving this morning. So far I feel great. Not having a headache all the time is fantastic. I can even bend down to pick stuff up. I guess I was symptomatic, just hadn't put two and two together
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Wonderful to hear you are feeling well, fujii.
I'm having an awful time with tamoxifen SEs and have decided to take a break. My next PET is on Sept 1st and I get the results on Sept 3rd. I'll discuss what to do next with my onc then. I'm starting to think that I should just go ahead and have a complete hyster and get those ovaries out. That would let me switch to the AIs.
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Hey gals, I haven't checked in for a while, trying to get caught up on how everyone is doing. Calico - hang in there, sending positive vibes your way. Agnes - hope you are doing well and continuing to recover from your cranio (I had a cranio two years to the day before you...hope you are doing well). Adnerb/Brenda - glad to hear your WBR is off to a good start, hope you continue to feel well. Fuji - have a great trip! So happy to hear you don't have a headache and are doing better. Goodie - sorry to the SE's are rough, hope the break in treatment helps. I'm sure you've thought of this, but could also try lupron plus a different AI if you don't want told go down the path of removing ovaries just yet.
As for me, I'm doing fine brain-wise, no effects from my last gamma knife 3 months ago to treat 11 lesions. Chemo is kicking my butt, but seems to be keeping me stable, so I keep putting up with it. I'll hit my 6-year anniversary for mets next week - we're celebrating by going on a Mediterranean cruise. :-)
Sending best wishes to all you lovely ladies.
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nancyH so good to hear from you. Hope you have a great time on your cruise send pics you are an inspiration to all of us. Congratulations on 6 years.I am also into my 6 year.
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Six years is incredibly inspirational. Thanks for stopping in.
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Nancy, congrats on the 6 years! That's a rare accomplishment, isn't it? I am curious to know how long you have had the brain mets.
Take care. Big hugs.
Brenda
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I came across these two different blog posts about what having a craniotomy is like, one from a nurse's perspective (she's seen lots) and another that is firsthand experience (knows what it feels like).
I don't have a the headache and memory issues the patient describes so it isn't definitive. I do get fatigue where my neck muscles hurt, a slight headache up front, and I need to nap.
In case you're interested or know anyone needing a craniotomy these are very helpful.
Head Nurse - What to Expect When You're Expecting a Craniotomy
http://head-nurse.blogspot.com/2008/11/what-to-expect-when-youre-expecting.html
Post-craniotomy Healing/Normal Recovery
https://mycsfleak.wordpress.com/2012/08/28/post-craniotomy-healing-normal-recovery/0 -
Tomorrow is my first MRI since WBR and starting on Tykerb and Xeloda. I'll have the results in by Thursday morning! Yay me! Wisconsin was fun and my kids have had a blast. Somehow I ended up with the WBR fatigue this week. Think that it has more to do with traveling.
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Good luck fujimama. I hope the drugs are doing magic and you can stop thinking about your brain all the time
I have my brain SRS planning session on this Thursday with an MRI and CT scan planned. I sure hope it all looks good.
My Chinese Medicine doc gave me a talking to yesterday about the importance of filling my brain with good information to help bolster my immune system. He said to keep eating well, taking my herbs, and practicing qigong and my t-cells will respond by fighting back. He adjusted my herbs also to try to help me out from that angle also. It is hard to balance wanting to know WTF the options are in a short amount of time about a topic I am not familiar with, especially in short order, and after I have been let down by a bunch of medical professionals who gave me bad advice or misdiagnosed me. Trying to find balance and good thoughts now that I'm up to speed -- at least I think I am.
Hope everyone else is doing well.
Ann
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agness- my mom was sitting next to a man who's company is working on delivery of vitamin D through a machine. Both his Mom and sister have had tumors travel to their brains'. He said I should be outside in the sun with no sunglasses on between the hours of 11:00 to 2:00. He also said those of us who live above San Francisco have a hard time getting enough vitamin D. Funny part is most of my recurrence issues have happened after winter. My MO has also had me on 10,000 mg of D from the start and every time I get lazy and don't have it I feel like crap.
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Hi,
My Girlfriend was diagnosed two years ago at 30 with Stage 3B, ER+, HER2+. She had FEC-T, Masectomy,, Rads and 18 lots of Herceptin every 3 weeks. She started Tamoxifen, March 2014 then added Zoladex last October. Last month Tamoxifen was stopped and Exemestane started.
Last month she was diagnosed with a solitary brain met. 4cm. A Crainiotomy on Friday removed the tumor entirely. We have an appointment with the oncologist two weeks today to talk about the plan forward.
We are hoping for a SRS boost to the area where the tumour was. Herceptin will also probably be restarted as well.
We are in the UK so some drugs aren't available here on the NHS.
What treatment have people had for this? I'm keen to avoid WBRT at this point.
Thanks
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fuiji - hoping for a good outcome on your scans!!
Freakzilla - I had a craniotomy on a single met in February. I received 1 dose of GammaKnife radiation to the tumor bed in March. My last brain scan in June showed no evidence of disease. My next one is scheduled for the end of September. I'm HER-, but ER, PR + so to this point I have only been treated with anti-hormonals (tamoxifen). My initial diagnosis was stage 1a, with clean nodes, so I haven't had any other treatments (yet). Best of luck to you girlfriend.
I had my 4 month PET scan yesterday. Results at my appointment tomorrow. I'm praying to stay NED. I'm having an awful time with my tamoxifen lately. I want to discuss other options with my onc at the appointment tomorrow. I've also contracted Lyme's Disease and though I have completed one round of treatment for it, I'm not convinced that I don't need another round of antibiotics. The symptoms from Lyme's are nearly identical to the tamoxifen side effects, so it's hard to tell right now what is making me feel so miserable.
On the positive, my best friend and I are leaving on our girls only hiking trip to Acadia National Park in a little over a week. I can't wait to see the beautiful sights and enjoy the crisp Maine air.
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Dear Freakzilla,
Welcome to the BCO community. We are sorry to hear of your girlfriend's situation but glad that you reached out here. We hope you find support and information that can of help. The Mods
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My PET scan was clean today, so I remain NED. Thank God. My onc also put me back on doxcyclene for the Lyme's Disease as he feels that my primary care doc didn't treat it long enough the first time around. He ordered additional bloodwork to monitor the Lyme's closer from here on it and he will take over managing it as he's not happy with my primary care doc.
I'm also back on the Tamoxifen. My onc feels it's the Lyme's, not the tamox, causing my joint pain and headache. So we're gonna give it another try.
I go for my brain scan at the end of September. It was good in June, so I'm hopeful it stays the same.
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RO said I had an amazing response to WBR. Lots of shrinking and are scheduling for gamma knife for the remainder. MO is happy. Still waiting for actual results since the pathology was not entirely available. ๐๐๐ Happy Dances all around!
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Woo Hoo fujimama. Life is good. Thanks for the good news
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Goodie16- you get one too. Great news.
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hooray Fuji!
I had rads planning today for my tumor bed: MRI, consult with RO and nurse, mask making, and CT scan. My imaging was clean, nothing concerning in the past six weeks since my craniotomy. It was emotionally exhausting though (8:45am to 3pm) and I'm glad it's over.
I stopped by the cancer center and spoke to my nurse. The neuro-oncologist recommended checking the spinal fluid during surgery but it was never reported to me so I had no idea if it was done. She checked the pathology reports and it turns out it hasn't been checked yet. I see the neuro-oncologist next week so I will see about scheduling a lumbar puncture or three. Evidently the more you look the greater the liklihood they will find circular big tumor cells there. I'm going to consult w/ HER2 brain mets experts in in the next few weeks as well about more aggressive adjuvant treatment.
PS - my tolerance for cerebral edema is much higher due to it almost killing me. I have to boost my Boswellia dose a little to address a minor headache. Oy vey
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great news Fujimama and Goodie
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Great news Fujimama!!!
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