TRIPLE POSITIVE GROUP
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Welcome all newbies (sorry you are here, but it is a great source of info., and support)!!
Hi TonLee,
You had several questions, so here goes.
(1) With regard to where I obtained information linking consumption of dairy products and alcohol, for example, with promotion of estrogen production, two books were my main source: Dr. Christiane Northrup's book, Women's Bodies, Women's Wisdom, a very comprehensive book on female anatomy, possible roles diet, stress, etc., play in BC occurrence. The chapter devoted to breast cancer itself was very helpful with regard to her recommendations, for example, of supplements to take while receiving various forms of treatment. The other key book I read, recommended to me by my MO was Dr. Susan Love's Breast Book, a bible of sorts for us BC patients. Would recommend it highly to those of you who want comprehensive info., about any questions that could possibly pop into your mind relating to possible causes, how to survive various treatments, how they work, how to live well after BC, etc. I am reading a fascinating book right now, The China Study, by T. Colin Campbell, which explores the links between disease and diet. A site I have posted about before, and which I find to be very valuable/helpful is as follows:
http://www.sciencedaily.com/news/health_medicine/breast_cancer/
It offers concise summaries, daily, of academic journal content released from research scientists around the world. For example, I read an article in the fall of 2012 about the discovery of a gene in some women with BC that prevents them from metabolizing alcohol well, even making it a possible stimulant for tumour growth. I am not a huge drinker, appreciate FULLY people's comments about fat people and alcoholics, for example, never developing BC, yet we all know there is no clear-cut answer to the cause(s); yet, if I can reduce possible risk factors, I am absolutely going to do it, even though I appreciate a great glass of Cabernet as much as anyone else. FYI, here are links to two of several articles I have read about why alcohol may be a trigger for some of us, yet not for others:
http://pubs.niaaa.nih.gov/publications/AA72/AA72.htm
http://www.sciencedaily.com/releases/2012/04/120423162245.htm
Also, I have never liked milk and did not consume a lot of that, EVER, yet I was a HUGE consumer of cheese, reduced consumption about 4 years ago. I grew up in a fishing village and never liked red meat, so for studies linking red meat consumption and cancer, well, I was pretty miffed. In fact, I ate red meat during chemo sessions for protein and iron purposes, about five servings per month for me, and my hemoglobin never dropped below 10.8. Finally, TonLee, you made a comment about why post-menopausal women are now switched to AIs after taking Tamoxifen for 2-3 years. The way my MO explained it was as follows: Our BC cells seem to become resistant to Tamoxifen after 2-3 years.He told me there is a gene, HOXB7, which, when overexpressed in our bodies, promotes Tamoxifen resistance, and that may be why Tamoxifen becomes ineffective with post-menopausal women. Here is a link to a current article relating to Tamoxifen resistance:
http://www.sciencedaily.com/releases/2012/10/121031125033.htm
Finally, here is a great article that explores so many questions we have all asked in this forum. Good to read that genetics are not one's destiny, which I am pretty sure, we all knew anyway, either through reading or through life observations:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2515569/
So many "IFs," gals, as we all well know. Hope this info., has answered questions people have.
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Gratitude,
Thank you for taking the time to post all the links and your recommendations. I'm on my way out right now, but will look at them later...I have Susan Love's book! lol
Have a great weekend!
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Dizzy - I always feel little bloated for a few days after tx. For me it usually goes away 3-4 days after stopping steroids.
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I thought about you LeeA. My husband trimmed our apple trees and I asked if we should save the branches for our outdoor firepit. He said applewood is good for smoking meat (which I do not eat) and asked if I wanted to smoke something
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Ha ha, lago (at hi hi).
ashla, re: side effects - my husband brought it up to me at the very beginning of all this and he had no experience with it - even in college. I wanted to have it in my arsenal but I don't think things have changed much for me in 30+ years, in other words, I just don't think it's for me. I remember it playing a part in a movie (The Stepmother?) with Julia Roberts and Susan Sarandon.
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Hello everyone! Checking in after a couple weeks being MIA. I hope everyone is doing well. I've been so busy since my last chemo. My school semester started that same week so I've been busy with homework, as well as some big projects at work. I feel like by the time I get home from work, take care of my kids and do my schoolwork I barely have time to get online for recreation!
My LAST chemo is this Tues. And that day I should also find out the results of my CT scan and EKG I had Thurs. Hoping the spot on my lung from the first CT scan in October is unchanged (meaning it's a scar or benign nodule). Enjoy your weekend ladies! Anyone doing anything fun for Super Bowl tomorrow? We're going to a party at my mom's house, chili with all the fixings.
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DiZZyMom Steroids can make you feel bloated and so can Taxotere. In my case the steroids helped keep the bloat down. As soon as I was off them I would put on 3-4lbs… and for me that's a lot of weight. Mostly in my belly and legs.
steiner18 Yay, last chemo. please keep us updated. Hoping for unchanged scar/benign!
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Steiner, I commented on the December chemo thread regarding your last chemo being within reach but also want to add well wishes/positive thoughts on the scan.
No big Super Bowl plans here. My husband plans on breaking his norm and buying some junk-type food and I'll probably watch the half-time show.
Chili sounds so good. I haven't made it this season because we always make it really hot (several kinds of chili powder) and I'm not sure if my digestive tract is up for it. A couple of times last year I added a cup of black coffee to it based on a recommendation I had seen on a message board. It adds an interesting twist.
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Oh, that doesn't sound good. I was hoping once I was off the steroids the bloat would go down. I guess I won't worry too much, if I'm eating healthy and getting some exercise. Hopefully it all works out. Thanks!
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Try to stay away from salty foods and decaffeinated drinks too if experiencing bloat.
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Dizzymom, I was just looking at one of TonLee's posts in the archives regarding magnesium oxide. She said that it helped her with keeping her stomach flatter and with bloating.
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LeeA - I hate inhaling too (should this be PM'd?) There is acutually a MJ forum somewhere. I got this nifty vaporizer, comes in a sunglass type case and looks like a pen, uses more of a butter, doesn't burn, works totally different pretty cool, I can send you a link if you would like. But it doesn't really help with my pain, though it does help me sleep. What really helps with my pain is some coconut butter I got - and I use it topically, works within 20 minutes and lasts several hours with no side effects!!!! You can use the butter for baking too - hi hi hi !!!!!! Which is a great sleep aid. Wish I could find what would help with the pain and get off of the opiods! Later -
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Tonlee...do I remember reading that you are participating in the DHEA trial? How is it going? Did it make a difference? I am thinking about it as a hospital close by is a study site.
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Hi all,
For those of you with low hemoglobin/red blood cell counts, Natural Health's Feb., 2013 edition has a great article relating to anemia which lists the top 10 AWESOME sources of iron-rich foods. Healthy women, ages 19-50, require 18 mg, daily; healthy, post-menopausal women require 8 mg, daily. Here are the foods listed:
(1) Clams, canned, drained (3 oz): 23.8 mg
(2)Spinach, cooked (1 cup): 6.4 mg (please take with Vitamin C to maximize absorption);
(3) Oysters, cooked (3 oz): 5.9 mg
(4) Soybeans, mature, cooked (1/2 cup): 4.4 mg
(5) Pumpkin seed kernels, roasted (1 oz): 4.2 mg
(6) White beans, canned (1/2 cup): 3.9 mg
(7) Blackstrap molasses, 1 tbsp: 3.5 mg
(8) Lentils, cooked (1/2 cup): 3.3 mg
(9) Beef bottom round, lean, cooked (3 oz): 2.4 mg
(10) Prune juice (3/4 cup): 2.3 mg
FYI, I make a seafood chowder, and put clams, oysters, spinach, amongst other ingredients into it, so I can eat the clams,esp.
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Fluff: I was thinking about the DHEA too but I'm doing research and here's something that is posted on Mayo's site.
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No studies on the long-term effects of DHEA have been conducted. DHEA can cause higher than normal levels of androgens and estrogens in the body, and theoretically may increase the risk of prostate, breast, ovarian, and other hormone-sensitive cancers. Therefore, it is not recommended for regular use without supervision by a licensed health professional.
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I know everything has SE's but the increased Estrogen levels is a bit frightening to me. Just thought I'd put this out here.
Looking forward to the Super Bowl commercials....no favorite at all in this game!
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Fluff,
I declined the trial because I didn't want to get a placebo. I wanted the REAL DEAL. I'm over cancer, ready to get things steaming again!
BUT my Onc wrote the script. Right now, since it is compounded by a pharmacy in North Dakota (because it is not FDA approved for vaginal use yet) you have to have your Onc contact them and order it for you.
Yes. In short....it helps. A lot.
Still use lube, but the pain is 95% gone now.
I know TMI!
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Gratitude,
Finally spent some time on your links. Thanks again for showing me where you get your information.
I prefer actual journal articles and not summaries so I can review the methodology. But let’s talk about your linked summaries:)
First…from the Tamox link:
"Tamoxifen has been shown to be highly effective in some breast cancer patients when used alongside traditional cancer therapies but, in a third of cases, the result has not been what we would hope. If we can predict which patients will respond to tamoxifen, and those who won't, then this is clearly advantageous as it means the correct treatment is provided instantly which will improve disease outcomes."
Even according to your link: Tamoxifen doesn’t become less effective. That’s not what the summary research you linked is saying. It says some women become essentially immune to it, and they suspect up to 1/3 of women don’t respond to it at all (and there are a LOT of theories right now as to why that might be, but nothing definitive yet..as in actual studies we can read and evaluate, or tests we can be given to see if Tamoxifen is working for us).
Therefore, it’s not that Tamox becomes ineffective (which was your original statement) … but that some women “may” become resistant or it may never work for them. For the other 2 out of 3 women on Tamoxifen….it works fine, and they have comparable rates to an AI (though the AI is a little better statistically. However, the 1/3 Tamox resistant/never-worked-for group certainly explains that difference). When you combine the harsh effects AIs have on the bones, it isn’t necessarily all about statistical significance.
Alcohol Consumption from the NIAA link you posted:
"Researchers continue to investigate the reasons why some people drink more than others and why some develop serious health problems because of their drinking. Variations in the way the body breaks down and eliminates alcohol may hold the key to explaining these differences. New information will aid researchers in developing metabolism-based treatments and give treatment professionals better tools for determining who is at risk for developing alcohol-related problems."
Again, nothing definitive. These are working theories at the moment.
I'm sorry, I didn't see a sugar link if you posted one.
I think it is awesome that you stay on top of this research and are so generous to share your sources with us! So please don't be offended by the following.
Many of the women coming to this board are not researchers necessarily, or not YET anyway..I think it is important to differentiate between theory and proven trials/studies.
Is there benefit to knowing some women may possibly have a alcohol metabolism issue that grows cancer? Sure. So long as we're clear on the theory part of it. I submit if we present it in any other way, it can cause undue stress at an already incredibly stressful time. And these boards are not intended to do that.
I hope I'm communicating that the way it sounds in my head.
Just in case let me illustrate. I was talking on the phone with another woman from this site. We discussed that a small percentage 2-5% of women who take Taxotere are bald the rest of their lives. This is a fact. Though the percentage may change slightly year to year, it is a known side effect. But it is not something my Onc necessarily pointed out! It wasn't even on the original SE paperwork! But that is another matter.....
We talked about whether it is beneficial to discuss this with women in tx. She didn't think it was a good idea. Adding the stress of perm. hair loss to chemo. While I understood her perspective, I don't agree 100%. I find even bad news, as long as its factual, is much easier to face and prepare for, than the million and one theories out there.
However, if perm. hair loss was only a theory, even a working theory, it would be wrong imo to discuss it with women in tx without saying....THIS IS A THEORY. That way they can decide if it is something they want to add to the worry pile.
Does that make sense?
In conclusion, when someone comes to this board and asks about sugar for instance, we can point to research that shows over consumption of sugar causes issues A, B and C. We can extrapolate from these studies, but I don't believe it is helpful to present our extrapolations (or other people's working theories) as fact.
Besides stressing someone out about something that very well may prove baseless in time, it kills our collective credibility.
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Arlene,
I asked about that before I started DHEA.
That warning is for the FDA approved OTC DHEA taken ORALLY.
Phase 1 and 2 of this vaginal insert study, showed no increase in estrogen or any other hormone in women taking it vaginally. Which is why they are in Phase 3 trials now. Had the hormone levels gone up, they would have stopped it. The study was designed to combat vaginal dryness in women who can't have estrogen because of estrogen pos. cancer. Here is the original title of the study:
Vaginal DHEA to Ease Vaginal Dryness in Women With a Contraindication to Estrogen Therapy
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Hi TonLee,
Thank you very much for your opinion/comments re: the post I shared with you and all the other ladies. In no way am I offended by anything you have written. I would like to respond to a few of your points.
It was my MO who used the words "Tamoxifen is less effective for some post-menopausal women, so we now switch them over to an AI." He also told me that a blood test can be administered to measure endoxifen levels, a metabolite produced during the breakdown of Tamoxifen in our bodies. The higher the level of endoxifen, the better it is as it indicates our body is able to metabolize it efficiently, so it can perform its targeted purpose.
Re: your stating that the alcohol articles do not indicate a "definitive" link, I concur 100%; however, I write, ever so respectfully, that so many possible causes do not have a 100% correlation with the occurrence of a variety of cancers, BC being one of them. The reason I share the info., is as a science person with a background in studying the process of protein synthesis, I KNOW I have this bias of viewing everything, pretty much at the cellular level, where errors occur, as being due, MOSTLY, to a protein being produced which either turns on or off a gene; therefore, if there are variables in our environment (diet, alcohol, sunning, for example) that may trigger BC in some people, I only want people to know that info., and then they can decide what changes (or not) they wish to make in their lives. I understand fully, no doubt, that we have all done the examination process in our minds, "My gosh, why did I get BC? What has caused this?" I am sharing info., that I recognize is not making a 100% link to causing BC but which may be of interest to some of the readers here. None of us knows, including our medical teams, DEFINITIVELY, why any of us got this disease. FYI, the burgeoning field of epigenetics is exploring why some genes are turned on, others, remain off. Identical twins are being studied closely, again, as their DNA is identical, and yet epigenetics is asking, 'Why does one identical twin get cancer, while the other does not, in some instances?" I find it all fascinating.
Finally, I did not share the info., about sugar and diet as the particular info., I have been reading in the past 6 weeks relates to a specific diet called the KETOGENIC diet. It was explored many decades ago by a German Nobel Prize Winner, Dr. Otto Heinrich Warburg. To your point, I thought it might upset some of the readers, so I chose not to post it. Let me emphasize STRONGLY that I will share it now with you and the other readers, hoping all have read your comments about my former post to you. This is not a CURE, this is some info., that is interesting to me, and knowledge is power. Here is one site to peruse:
http://www.ketogenic-diet-resource.com/cancer-treatments.html
In closing, as so many writers on this board have already expressed to you, I also wish to thank you so very, very much for creating this board. Although I have great support from family and friends, none of them has had BC, and no one even knows what "TRIPLE POSITIVE" means. This is my sanctuary, of sorts, where I can read how all of you are doing, learn from all of you, and hopefully help you stay positive and informed.
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gratitudeforlife I think the blood test your doctor is talking about is the one discussed here in this article:
Ability to Metabolize Tamoxifen Affects Breast Cancer Outcomes, Mayo Clinic-Led Study Confirms
Wednesday, December 26, 2012Others reading my post please note that the article states:
"A blood test can determine whether a woman has alterations in CYP2D6 and predict how efficiently her body will convert tamoxifen to endoxifen. Approximately 5 to 7 percent of European and North American populations are considered poor metabolizers of tamoxifen."
Still a small percentage but if I was one of those 5-7% I would want to know. Trial is in phase I.
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My company makes the CYP450 gene chip technology, and I know reimbursement is not good. Payers don't want to cover it because they feel there isn't enough data on it's uses. But the tamoxifen data is compelling, along with some of the anti-hypertensive and neurological drugs.
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I am on facebook under a fake name for the sole purpose of following a woman who supposedly shrunk her tumor using a ketogenic diet she developed. Note: I am not following a ketogenic diet right now.
I've had this tab/link open for days now. The blog author, who is a medical doctor, references Thomas Seyfried, PhD, a brain cancer researcher who looks at cancer as a metabolic disorder. In case anyone is interested:
What Causes Cancer - Part I - http://diagnosisdiet.com/what-causes-cancer/
Also, a link to Thomas Seyfried's relatively new book:
Cancer as a Metabolic Disease: On the Origin, Management, and Prevention of Cancer
One of the reviews caught my eye the first time I looked at the book on Amazon. It's a rave review from an oncologist specializing in prostate cancer.
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Thanks for the info on the DHEA study. I had read about the estrogen effects of the oral, but hadn't seen much on the vaginal. I think I am going to make a call this week. I am pretty sure it would be easy to tell if I had the placebo, lol.
I am taking the info to my gyn appointment on Tuesday, also.0 -
Gratitude,
Thank you so much for you thoughtful reply! I really appreciate the fact that while tone is so hard to read on line, you gave me the benefit of the doubt.
You're a scientist. I am not. Not even close. I just try to read as much as I can...and of course when in tx really tried to read everything coming out, theory and trials! lol
When I last asked my Onc, he said the metabolism test for Tamox was not reliable. He won't even consider it. I know a summary came out several weeks ago about an advancement in it, but the actual data hasn't been released, just the summary as far as I can find. (Though it could very well be out by now and just not where I'm looking!)
Anyway, I find your contribution to this thread valuable, insightful, and supportive. Thank you
Kay, I wonder if your friend's condition was attributed to the DHEA or maybe something else. Since I was 95% ER+ my Onc really did his research and said increased estrogen has not been an issue with the vaginal cream in the first two phases. If it is, they will end the trial. That will answer the question. (Can women who are ER+ use DHEA cream vaginally without an increase in hormone levels.) He is so confident...he is not ordering any bloodwork for me. (Of course I don't have ovaries, so maybe he figures the Tamoxifen will take care of anything floating around...).
Though I can tell, my estrogen is still gone...lol. I have all the symptoms!
However, as with most things there may be something biological in some women that will keep them from using it. My Onc is monitoring it closely. But I will keep everyone posted.
Also, a woman in my BC group just was diagnosed with a new BC after 5 years NED. She was in the trial and even though her new cancer is ER-, her Onc took her off the DHEA.
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Whew! You ladies are WAY over my head with most of this and partially because it is just too much to absorb or want to absorb....although, I'm glad it is here! Thanks for posting.
TonLee: Thanks for the clarification on the DHEA....I'm back on trying to find a doctor to prescribe it. My onc didn't seem familiar with it and thought as long as I can still pee not to worry about it. Guess I'll talk to the Gyn or find another onc. Lord this 'journey' just keeps on and on!
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Arlene,
I laughed out loud at that "as long as I'm peeing everything is ok."
Buwhahahaha.....frustrating I know, but still kinda funny!
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TonLee: Actually, pretty pathetic but you gotta laugh at it! Guess I didn't realize that area can get to a point where it is difficult to urinate. I really do need to find someone to prescribe it. I agree with the gyn that no vagina should so dry. Oh well! Again, thanks for the information! We sure need each other here because the medical profession sure isn't free with information! Only good thing the onc said was no hormones in any amounts into the vagina
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Tonlee, no Tamox test for me either. Onc said he could order it, but that it wasnt proven. He said he was taking me off it in four months anyway and moving me to an AI , so he said finding out now probably wouldn't help things much. Lol. I guess that is one way to look at it.
Oh, btw...I did get a lot of I formation on side effects of taxol, but I had to find out myself about the possibility of no hair return. I am like you....I want all the information, good and bad, so I can make the decision. I do not want to find out after the fact that there was a chance of anything. I have grilled every doctor I talk to. I may not get my way on everything, but I make my point and it is in their mind when I show up again.0 -
Has anyone noticed small, red, blood blister like spots on their body at some point after chemo? I have noticed several lately on my trunk, and two on my foob, and am now trying to talk myself off the ledge thinking I have leukemia from the taxol.
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Fluffqueen - I got those, most of them went away, but a couple of small ones stayed on my leg and a couple on my arms, really tiny ones.
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