Brain Mets Sisters
Comments
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letranger, you have the kindest heart!
No Christmas market for me. No energy at all. I just stay quietly on the farm and care for the menagerie. Better for me that way. It gets me outside but I don't need to talk.
The mask is awful! The last CLICK made me break down in tears, so they gave me lorazepam to take before coming and I made it without further drama. The mask is also painfully tight so I also took acetaminophen beforehand so I could endure it.
On the subject of ketosis, I asked three oncologists who design clinical trials for their honest, off-the-record opinions. Each one (independently) thought that hypoglycemia, weight loss, and acidosis were bad ideas for cancer patients, with no evidence to indicate that it would help. They ended with the clear advice not to make any such changes without consulting my MO.
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Split-bean, thanks for taking time to share the info. But will all do respect, with clinical trials trying metformin and diets, this does not make sense. There is literature that says fasting is good for the brain and helps to protect healthy cells. I'm not trying to be argumentative as I know you have in depth knowledge of clinical trials, but no one seems to care or wonder what can make my brain mets stop growing/multiplying.
And my RO said no to concurrent xeloda and brain rads! I'm sure he's unaware of the study I posted that showed xeloda used with WBRT.
Sorry, I'm just mad at cancer and can't figure out why oncs are not combining forces with holistic Med to take care of the whole body.
I am guilty of spending hours reading about cancer and supplements and complementary therapy and then doctoring myself. Why? Cuz my Med team does not have the time to do it. I rely on them for conventional meds and emerging treatment.
Sigh. Get rid of these brain buggers already!
Ok, vent over.
Split-bean, I respect your post and thoughts and hope you understand where I'm coming from. I'm sure with the technicians playing laser tag on my brain this week it is not helping my emotions.
Xo, letranger
(Ps, our German friend brought goose all the way from Germany to share with everyone! My hubby tries to get over to Germany once a year and if he goes again this year, I'll be sure to send you a care package. Not sure how he'll get it to you, as they normally stay in Kassell. No, he's not German. His best friend's wife is.)0 -
Split-bean,
My wife's preventive medicine doctor, who is a trained cardiologist who eventually moved into preventive medicine, said that in general MD have little or insufficient training and understanding of nutrition and its implications for diseases like cancer. When my wife was losing weight because of the change to (almost) macrobiotic diet, her oncologist was worried, but the preventive medicine doctor said it was OK, and to disregard that worry.
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Just met with my substitute RO since my regular RO is out. Actually like him. Anyways, he says there's not much evidence for concurrent xeloda with rads but he will allow me to do it if I REALLY feel strongly about it. So I will take only 1 pill per day. he says there's a small chance it can cause more necrosis.
Ok I just got done with rads.
The other thing this new RO said was that his theory was that my brain mets was seeding from somewhere. Uh, hello, I thought your machines said I was systemically NED for the past 1.5 years or so! Ok, so I asked, is it just a matter of time where we find out its seeding from in my body???? So much for NED.
He says he agrees with SRS instead of WBRT. So I was happy to hear that since my original RO is for WBRT.
Also said that cancer can become resistant to xeloda. So I think it's a good thing I'm taking a break from it. He said that xeloda does not really cross bbb. So I asked him why they give it to us, he said to hopefully stop the systemic seeding.
So, I'm frustrated once again. Seriously. All of these millions of patients with cancer and we can't get a cure or better answers?
Thanks for listening to my rant. Xo letranger
Edited for my many typos
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Two days with good RO appointments. I'm trilled but what a sad state of things that it makes me happy to have docs listen to me.
I asked today about whether external cold might be used or interfere with treatment. The RO said that using cold packs on my head could help potentially protect my hair follicles from rads. Wow.
I used cold caps during chemo and while I lost some hair I also had faster regrowth. Yeah, I can do something more to try to help normalcy and health even as my oncology team screwed up and completely mishandled my case.
I am thinking about getting a rush delivery of something I can wear around the house and such to chill my scalp. I found this link:
http://www.icewraps.com/other/head/
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Interesting agnes. I was told at original diagnosis that I could not use cold caps because I had lymph node involvement and did not want to stop any chemo that might cross the bbb. I didn't use them and got brain Metz anyway.
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On the topic of nutrition and allopathic doctors, it is well-known that doctors study nutrition a total of about a week during medical school. Only individuals who are independently interested might go deeper on their own, to develop an integrative medicine emphasis.
Ketogenesis is not ketoacidosis and the fact that medical doctors would bring this up is a sign that they don't know what they are talking about. Read this:
Ketoacidosis versus Ketosis
http://www.ketogenic-diet-resource.com/ketoacidosi...
A recent study came out that said with fasting during a certain common breast cancer chemotherapy that patients did well, cancer was hit harder, and patients recovered faster.
The effects of short-term fasting on tolerance to (neo) adjuvant chemotherapy in HER2-negative breast cancer patients: a randomized pilot study. - PubMed - NCBI
http://www.ncbi.nlm.nih.gov/m/pubmed/26438237/
It is embarrassing from a patient standpoint that there are so many avenues of patient-driven metabolic changes that could be made in conjunction both with treatment and to heal people's bodies that have been completely not investigated, or, when research has been done, is not ever brought forward into practice. I asked my MO when I was first disgnosed, because I could tell I was badly depleted, "don't you want to know why this happened to me?" And he said that it wouldn't change how he would treat me. My liver and kidney function were fine, the CBC showed nothing. I started work with a naturopathic oncologist before chemo and he did blood labs with an evidence-based approach -- checking for nutrients that are commonly off in cancer patients and my body was completely f'd up. I had sky high copper and my zinc, ferritin, Vit D and magnesium levels were tat the floor. I've spent the better part of the last two years studying my body's deficiency in light of my own understanding of my lifestyle before I developed cancer, as wel as ways to correct and improve my nutritional absorption. I ate well but had a nutritional draw on my system due to pregnancy and lactation that set me up for cancer and also caused deeper deficiencies than for some cancer patients -- plus cancer doesn't run in my family (3 cases in 348 people in seven generations) and my family always took care of themselves, I wasn't raised on packaged, pre-made junk.
I think every cancer patient should work to restore true homeostasis in their bodies to help alter the environment in which the cancer developed, and also to fight the disease metabolically. This needs to be done in conjunction with a knowledgable practitioner, such as a FABNO naturopathic oncologist or someone well versed in integrative oncology. It is really useful to have someone who knows how to help you figure out fasting or can tell you which supplements to take and not during which phases of treatment. This last part was especially critical to me as I needed to rebuild and restore just as I was starting chemo -- my MO could have killed me probably if I did nothing -- because I needed to restore my body and bones after extended breastfeeding.
Here is another great article that I might not have posted before about using fasting and Ketogenic diets during radiation therapy to enhance treatment -- it also has a good explanation of why high levels of glucose in the body help cancer grow:
Calories, carbohydrates, and cancer therapy with radiation: exploiting the five R's through dietary manipulation
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC398852...
PS - there is a mutation I learned of recentlythat makes cancer cells resistant to calorie restriction but it doesn't appear common. The brain is such a glucose-rich environment normally and brain mets cells have such an affinity for this sugary, protected environment, that I am more of the belief that logically it doesn't hold as true as it might in the rest of the body when one adds calorie restriction or ketosis to treatment
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lauralind - I don't think for a second that cold cap treatment caused my brain met. The RO today said it is impossible to externally chill the brain enough to affect blood flow in the brain. They thought I was stage 4 from the get go, HER2 lives the CNS, and HER2 has a special affinity for the cerebellum compared to other breast cancers. I'm like case-in-point as far as a "this is what HER2 does"
They actually looked at using hypothermia with rads and it actually is protective of healthy neurons and more deadly to cancer cells. This isn't practical in many cases but it reminds me of how they chill bodies to operate on aneurysms -- it can be done.
Protective effect of hypothermia on brain neurons of rats exposed to ionizing radiation].
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Yes I thought it was bogus reasoning but at that time I was really naive
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Giovanni, can you tell me more about how your wife did the macrobiotic diet? Is she still doing it? I'm just interested in diets. Did she do anything special during WBRT? Thanks.
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Giovanni and all - I thought you might like this link about cancer, therapies, and nutrition.
Cancer Part 4: Got Hope?
http://www.diagnosisdiet.com/cancer-hope/
Oh, and I don't think I posted this yet but it was a great find of a gal with primary brain cancer (the other kind, not mets we are secondary brain cancer) who used dietary changes to improve her odds:
http://greymadder.net/2014/02/04/my-ketogenic-life...
She ultimately has recently needed more treatment for progression but she's going on 4+ years since diagnosis with a disease that typically kills within a year
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Letranger,
I posted about the macrobiotic diet here (2 posts), without giving many details. In a nutshell we started following it about 50% by looking up its principles on-line. We started having sessions with a preventive medicine doctors who was giving us the basics of it and we were probably following it 50%. Then we took one private class from a local chef who cooks in a macrobiotic restaurant, and probably moved to 85% macrobiotic: we learned to replace many animal-protein meals with vegetable proteins, and making them yummy too! Finally we had a $$ half-day session with the local macrobiotic guru in Connecticut, but frankly I don't think we learned much more than we already knew.
What I liked the most was the doctor, because he was founded in traditional medicine, pointed me to published studies, and is a firm believer that the best approach is a mix of many contributing theories. In other words he doesn't believe going 100% macrobiotic or other diets, which perhaps would deplete one of some nutrients.
The bottom line is that my wife gained a lot of energy, lost all the weight she always wanted to lose, and her quality of life improved. She went from feeling that she was dying to being full of energy and working full time. She also made a very fulfilling professional move, from being an employee in a not-for-profit, children-mental-health therapy center, to starting her private practice for therapy for couples. One couldn't tell she had cancer.
Obviously we do not know how much we owe to macrobiotic,or to Xeloda, or to something else. But if we would do it over again if we had to choose.
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Thanks, G! How is Debra doing?
I have 2 more zaps to go- tonight and tomorrow! I had a massage today and it really helped my lymphatic flow. She stayed away from my head and focused on my back and stomach. I feel so much better!
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I'm not sure whether to post this on this thread or the Her2 thread. I'll start here, since it's brain mets related. I wanted to share my experience on the clinical trial that I was on to target my Her2+ brain mets. I hope the info helps someone.
I started the clinical trial in August 2015 and stayed on until Dec. The investigational drug, neratinib, was given concurrently with Xeloda. I took 6 pills of N and 4-5 pills of X. PB272 (neratinib) is a potent irreversible tyrosine kinase inhibitor, or TKI, that blocks signal transduction through the epidermal growth factor receptors, or EGFRs, HER1, HER2 and HER4. My onc thought it would be worth a try to target all the HER receptors instead of just taking lapatinib or tykerb. I experienced no hair loss, but major GI issues were daily!
Anyways, we concluded that it was not really working for me. The clinical group (under Dana Farber) selected to monitor 3 of my lesions and I was scanned every 6 weeks. Apparently, they did volumetric analysis of my lesions as they did change shape. My body remained NED, but the lesions grew by 10% COLLECTIVELY (that's growth in 3 lesions combined). The RECIST is 20% in order to be deemed as stable. So I am stable according to DF and could stay on the trial. But we decided that the drug may not be crossing the BBB. I did not develop any new lesions during this time. Some lesions remained the same.
My personal conclusion is that it might have helped keep me disease free in my body (along with Xeloda). But it did very little for my brain mets. I have no regrets being on this trial.
I am currently awaiting news on when I can start a new trial in which the investigational drug is used for primary brain tumors. Yes, we are secondary brain tumor patients, but one of my Oncs thought that it was worth a try to try something totally different than targeted Her2 treatment. She felt that Ont-380 or lapatinib was too similar to Neratinib. I don't know the details of their similarities.
So, my point is, if you are looking for treatment options, you may want to look into primary brain cancer clinical trials that take BC mets patients, as sometimes they open a clinical arm for BC. Since I can not get IT Herceptin, I have to look at clinical trials and hopefully something will work! And I think it's crazy to wish that this week's SRS will open up the BBB so that something can pass and obliterate my brain mets, but I'm hoping!
Warm regards, letranger
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Letranger,
What's your HER+ score? When my wife was diagnosed 8 years ago, she was told she had HER score +1, but that +1 was considered negative from a cancer point of view. I don't understand these scores much, as some here talk about Allred scores which go up to 8, but all of my wife's scores are given as a number out of 4. Perhaps it was an old method of scoring.
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all I know is that I am her2+++
I'm unaware of any other scoring, but interested if anyone else knows.
I don't know what Allred is.
I know hormone and her2 status can change but there is no way to test my brain mets for changes or mutations. My onc will not do a brain biopsy. We are assuming everything is still the same. Can you get your wife's tumor tested again?
May I ask why your wife has restarted chemo ACT? Is it related to her brain mets
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Allred scoring looks both at the percentage of cancer cells with receptors and at their intensity. From what I gather, until recently the score represented only the percentage on a 1-4 scale. Now they add percentage and intensity numbers to obtain a 1-8 scale.
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cJoining the club. MRI diagnosed two lesions OS approx. 3cm today. I don't know anymore. Aside from random episodes of arm tingling and twitching (which I initially chalked up to surgery nerve damage) I am asymptotic. Onc is tenetively talking surgical removal and then rads. Scans scheduled for next Tues to see if it's in any other part of the body. Praying no, and I can concentrate fully on eradicating the brain suckers. Plus, I had tons of systemic treatment - just none that passes the BBB
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I just finished WBRT. Saw my oncologist today and we are starting carboplatin. There is laboratory evidence that it can somewhat pass through the bbb. Also radiation supposedly opens it for some unknown length of time.
I'm triple negative and NED neck down
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Oh for fuck's sake! I don't believe this. Each one is 3 cm? Where are they? Get those damn things OUT and nuke what's left. This is absolutely a shit sandwich, but you are strong. You can do it.
Love and big big hugs.
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oh fuzz bucket, bad-at-usernames!!!!! I was really hoping for some other cause to your symptoms. But, welcome here!
Lots of women here have had craniotomies so they can advise you there.
Being Her2 will open some doors to targeted therapy. My advice is to start doing some prelim homework so you can ask what all your options are, even after craniotomy. Have them test the sample, too. I think Agness mentioned Foundation 1 testing or something. That's something I was not able to do since no craniotomy for me. I'm doing 5 SRS rads this week.
Hey lauralind, hooray for being NED neck down!!! Hope carboplatin works! What are the SEs of it?
Best to all! Letranger
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Lauralind, you already had the double serving of that sandwich! How are you feeling after the WBR? What is your schedule for carboplatin? I do so hope it does well for you.
So much love to you.
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Bad-at-user-names: No, no, no. You need to irradiate the tumors first and then remove them. It results in less disease spread. It isn't into mainstream practice yet but I didn't learn about it until after I had to have my craniotomy because I almost died. With HER this is important. Find an RO who knows about this, seriously.
What drugs have you tried? Tykerb/xeloda? ONT-380? Neratinib?
I had a totally interesting session with a medical empath today, she does lymphatic and craniosacral on me. She said my body needs more specific thing but the crazy thing was that the stuff she mentioned I've been craving and I almost got a couple things at the store last night. Cauliflower, acerola cherries. I've also been obsessed about mushrooms and my body wants more mushrooms.
HER2 brain mets needs mushrooms to help our immune systems fight evidently -- and it is core to the study of the anti-HER2 vaccine trial that they give it with turkeytail mushrooms. I have to look into this more
Tyrosine comes from Greek for cheese, there is something about that which is in contrast to the mushrooms. Tyrosine kinase inhibitors are the anti-HER2 drugs, we might be fighting something akin to cheese in the body, kind of conceptually. We can fight back with mushrooms though. Check this out:
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Split bean thanks. I feel like a bit of a unicorn because of what I'm doing next. It's all scary as hell. Today was bad in that it was a hard in your face reality day, no oh I just have to zap these suckers and go on, but looking at facts and data and all that stuff. I made it clear to my Onc that quality of life at this point is higher than kicking the cancer. They were at even points but what's the use of being alive if I'm not living ( because of harsh treatment) ?
I'm doing ok. I've had vertigo, wide circle stuff the last 24 hrs. I hate it. I've also had a headache and lots of eye sight blurring. Some of which could be the dex so I start a slow taper tomorrow. My thought process and memory seem to be intact but my speech isn't quite. And of course I'm so freaking tired.
I start the carbo next Thursday. Weekly low dose. SE include nausa, hair loss
. I'm already bald. Bone marrow counts etc. They think it will be doable at such low dose. I hope so. 0 -
lauralind -im so sorry you arent feeling well. I think you are right to defend your body at this time. Triple neg bc is such a bugger.
I got carbo during chemo and its secondary action is to push magnesium out of your body. Make sure they tst your magnesium levels -- RBC is more definative of your body's stores but serum can help. If your serum is low then your stores are absolutel low. I know how to boost mag but since I was really low.
My naturopathic onc has also been doing copper depletion on TNBC patients, was your level ever checked?
At any rate, regardless of what our doctors think, we have a right to be as comfortable as possible and not be miserable with treatment side effects. Sometimes they can bring people back from the edge but it makes me mad when they just throw protocols at patients without knowing if they even match the cancer cell line. Our bodies can't tolerate mucking about seeing what works and many times it is possible to know more through tumor tissue testing.
At the end of it though I weigh being well with being frail and in a ball due to treatment and I would rather this be up to me. I found this article helpful about a patient whi chose a palliative path:
http://www.washingtonpost.com/national/health-scie...
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Thank you for the warm welcome to the club I never wanted to join. I got my consultation with neuro onc set up for Monday. CT and bone scan Tues...gulp. I'm doing ok emotionally but if there's mets below my neck, with all the treatment I did, I will be so discouraged.
If those scans are clear, I'll seriously wonder if the brain mets were present from the start. I mean, two 3cm tumors, yet I have so little symptoms and what I do have has not progressed over the past two+ months...makes me wonder/hope I have some slow-growing mets. I mean, I never had a baseline brain scan, although until recently I thought my pre chemo PET covered the brain, but I recently took a second look and it was indeed "eyes to thighs."
Agness, I'll bring up radiation before surgery. If they can remove them, am I still qualified for gamma to the tumor bed? I have no idea what systemic treatment I'll be on. I'm interested in IT Herceptin. Is it in trials for brain mets currently?
I'm shocked and sad, but I'm also glad that with my minor symptoms and desire to stick my head in the sand, we caught it when we did, and I didn't develop anything debilitating during the time I just thought I had nerve damage from chemo/surgery/radiation
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Just to let those know who might be interested in Gamma Knife that December 23rd I had 19 tumors zapped. I've had no headaches before or afterwards. I'm now weaning myself off of steroids...I've had no real problems. No hair loss, or anything out of the ordinary. My brain feels fine. It was easier than the one I had 9/11/14 when I had 4 brain tumors zapped. I'm feeling strong, energy and I'm able to now drive and be independent. If I have more after the next scan I will have my radiologist mop up any new ones (Gamma Knife)./
Also, most rad oncologist won't zap more than four. I found one who was up to date with Gamma Knife. He said those studies are old and out of date. New studies show that you can take out as many as you like as long as they are tiny. He rather take out 28 than two large ones. I was so fortunate to have found a doctor who wasn't afraid of being a little aggressive. I don't have to worry about dementia or other possible side effects that come with wbr.
In the near future I believe more radiation oncologist will go for Gamma Knife over wbr. I was told wbr was the last thing you want to do. Also, my new rad oncologist said he would never do a regular MRI on me...only the highly detail one to make sure we gets the smaller ones that cannot be seen on the typical MRI that we often get.
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Hindsfeet - Wow. We learn something very day on this board. Fight for your brains gals!!
Bad-at-user-names - I have been busy compiling HER2 brain mets info, as have others, over on HER2support.org so if you are HER2+ you should head over there to get up to speed. This is the best board overall for info and support but HER2 is a little different in both its affinity for the brain and how it likes to behave.
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Hindsfeet, that is great news. I am so happy you are feeling better. You give hope to us all. Hugs
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