TRIPLE POSITIVE GROUP
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SpecialK - thank you for the link
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Vicky, I got this product when you recommended it to me a while back, it helped with the twitching right away. The blood vessels bursting just started recently. Not sure what's going on with that.
Melanie
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Re: blood vessels - The Sloan Kettering website says that this problem can be caused by low platelets and is worth calling your doctor about
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Melanie,
I think Lita19901 is spot on. Called your MO. You only have 2 eyes!
Vicky
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Thank you Lita and Vicky.
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I have a meeting with dietitian tomorrow and wonder whether there is any research why dairy products are not good for Her2 positive bc. I believe I remember someone mentioned it somewhere but I am not sure. Or is it not good for any type of bc?
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cherry - not sure there is a Her2+ and dairy issue, I believe some feel the potential issue is more closely linked to being ER+. Since milk, and milk products, come from a lactating animal there is some thought about them being inherently estrogenic, or containing additives not good for ER+ breast cancer, like rGBH an artificial hormone that stimulates additional milk. Some people feel that using organic dairy solves this problem. Another aspect is that dairy products have proteins that can cause food allergy, intolerance, or sensitivity and this can create inflammation for some people. The link between inflammation and immune response is not yet completely clear when it comes to breast cancer, but this is a current area of study.
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Thank you SpecialK, in that case some organic Turkish yogurt is ok? I also red somewhere that goat milk and cheese are more alcaline than usual dairy, is it possible? So, the best would be to stop consuming diary products for us TP? I just wonder where Her2 protein is coming from, is it possible to block it in some way they do with ER/PR? Any food that Her2 positive maybe better to avoid?
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Thank you HapB, the I will stick to organic and try to reduce it to the minimum
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SpecialK- I think you mentioned that you follow a anti-inflammatory diet. I have been reading about recommendations on this type of diet since joint pain is one of my primary side effects and also seem to be fighting weight gain like crazy. Do you have a specific diet you follow? Would love to know what has worked for you.
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Hapb, I would do which ever you want. Most that are Trip+ follow here. As for getting emotional about posts I have decided that everyone has their own thoughts and are allowed to post them, If you do not agree then just skip those posts! Not worth the hassle anymore.
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Its always so surprising how controversial diet can be. But just like one hormonal treatment doesn't fit all, diets are not the same for different people. I think everybody has to see what works with their body. I've been experimenting a bit. I have found that taking anti-inflammatory supplements seem to help with the joint pain, tumeric, green tea, etc. But would love to get some strategies on diet that work as well.
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I would like to know what to it and what not while on Taxol. I was looking myself online and could not find anything legitimate and last Monday I asked the nurse during treatment about some products I found online.She told me not to eat grapefruit because it cam interferes with Taxol but she did not know about anything else.I am also interested about eating right after the treatment.
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Hi ladies and cancer sisters and brothers...I am happily after a bit more of one year on disability and treatments finally starting a NEW job..Yes they hired me and I am celebrating. Would not have done this before so got to say, yes, this illness changes you for ever in a good way honestly. That is another plus in the unfortunate other three pluses..:) However the scare of all this happening again is hard to shake, some days better than others but still..it´s there and do not expect it to go away any time soon so accepting this fact seems logic and then try to not worry and destroy every day with something that has yet not happened.
Thought I would share a very interesting article with you found here:
https://www.newyorker.com/magazine/2017/09/11/cancers-invasion-equation?mbid=synd_digg
Comparing cancer with a lake with mussels overtaking it made such sense to me and even if immune therapy is big at the moment for more advanced cancers I thought I would share it in this forum for those that are interested. I am also interested in changing my diet but overwhelmed with all the information I find. I like to keep my lake (my body) not a good environment for cancer (mussels) to come back! Keep faith and praying for all to go threw treatment with few side-effects.
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My head starts to spin when it comes to food and cancer. I had to give up wine and live on bread and plain noodles when I started chemo. I just had my sense of taste fully return. I have not been able to eat wasabi since chemo turned me into a person with a delicate constitution.
Now I am told that I should be practically vegetarian to improve survival. I have tried the last three weeks to be a vegetarian. Brilliant failure. I feel horrible. No energy and constantly napping just when I thought I was turning a corner in my recovery. No cheese or meat for three weeks. Wah!
Ok. So now I like this topic. I'm going rogue. I plan to throw all caution to the wind and buy organic dairy and eat cheese. Once every week or two, I plan to have organic grass fed steak or burger. I hate tofu, so that's easy. A little soy sauce will not kill me.
Don't get me wrong, I have a huge amount of respect for the disciplined approach that many take adopting an anti-cancer restrictive diet. I wish I could follow that type of diet. I have not given up and vow daily to eat more vegetables.
In the meantime, I enjoy reading about others successes and welcome the discussion. It helps me make better choices. Hugs to all
P.S. My smoothie today had 3 ingredients - red organic kale, blueberries, and yogurt. I had never had red organic kale until today. I'm going to give myself a gold star and I'll keep trying to do better.
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Congrats on your new job, Kattis! Yes, I found that New Yorker article interesting as well.
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my situation is difficult. my gastroparesis / delayed gastric emptying makes it hard for me to digest roughage. and i am about to eat steak! plus i cannot give up the white rice.but i try to buy organic, eat fish, avoids processed food, soy sauce, and no sweets
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I'm 10 weeks PFC and I'm in the middle of radiation (23 of 28). I've been sick all week and developed a fever that's above the magic number. Since I'm not on chemo anymore, it's shouldn't be a concern, right?
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HapB - I'll let him know tomorrow. They checked my blood a week ago before I had my Herceptin & Perjeta infusion. I saw my RO on Tuesday and mentioned that I wasn't feeling well and he did say that radiation can affect your immune system. I was hospitalized during chemo with a neutropenic fever and so of course I'm a little nervous.
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Kattis. Thanks for sharing the article, it was very interesting. Makes one think, doesn't it?
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Kattis,
Congratulations on your new job! Are you allowed to share what it is (or describe it a bit?). I am sorry if I try to ask too much of you ladies; I just like knowing a bit about you
.That is an interesting article; I believe someone posted this link very recently right here on this thread. The whole seed and soil idea. I found it profoundly interesting as well.
On the topic of diet, I believe the jury is still out in terms of the level of impact it has. I think there are definitely things that should be changed...obviously we don't want hormones in our meat and we want to reduce toxins and we want to decrease sugar intake. But I've read very conflicting reviews on the impact of diet on recurrence. I'm not sure it's been confirmed that diet absolutely reduces risk. At my hospital, at a workshop, the lady delivering it would not say it does. So, in light of that, I personally am taking a more 'general' approach to this. I'm trying to increase my intake of veggies (and choose the good ones - asparagus, broccoli, cauliflower, spinach, avocado, etc.). I do want to read if any of these are problematic. I want to know if beans are ok - are they? I want to reduce my meat intake and move over to more chicken and fish when I do eat it. I have started doing these things. My husband and I were talking last night and will take baby steps toward this, as huge and radical change can be hard to uphold. Will I quit cheese and milk? Not likely. I just don't eat a lot of them. I keep it pretty light. Do I eat sugar? Yes, I do. I have a cookie a day for sure
. My general approach will be: reduce meat, increase the good veggies. Eat lots of healthful broth and all that. Drink green tea several times a week. But don't deprive myself either. Learn what truly is known to be 'bad stuff'.I HAVE read that studies are showing exercise to be a fairly clear important factor in reducing risk - like to 40% reduction in risk??!
I have a question on a totally different angle, and SpecialK might be the right lady for this one again (or any of you, pipe up if you have a thought on this!). First of all, hope you're doing well, SpecialK. How are things? Power still out?
I have a friend who lives in the US and was initially diagnosed stage IIIB inflammatory breast cancer, triple positive. She did much chemo, had her ovaries removed, Herceptin, perjeta. After treatment, she saw some rashing on her chest, on the side of the mastectomy, moving toward the middle. At this point she ended up at Duke and was with a top rated US oncologist - Dr. Blackwell. She was told her cancer was the SAME cancer, but that it was triple negative. And that the initial diagnosis was WRONG. I.E. she was NOT triple positive after all. I'm sitting here completely gobsmacked, not understanding how the initial diagnosis could be wrong when actual sample cells are tested with established tests. It's not like looking at a colour going "is that grey? is that black?". At least not from what I understood!!! I'm wondering why they think it's the same cancer (but just wasn't fully eradicated) versus another cancer? Or the original cancer but mutated after treatment? Can they make huge ass mistakes like this in testing???? The poor thing went through sooo much. And then I thought, "how do I know they got my receptors right???".
Finally, have you seen what's going on on the main page of this site? Take the Fright Out of Breast Cancer? Lots of backlash from the people on this site happening. Take a peek at it and if you feel it's a bit off, then perhaps voice your thoughts (or if you're in support of it, voice that too).
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Hey all - I am here - I have not been on as much in the last few days, but I do have power. I am just trying to get my house organized and all the stuff unpacked from being weather-prepped. My daughter is down in the Florida Keys as of this morning delivering supplies and trying to rescue a friend's elderly grandparents who were stranded, plus drop off a boat that she had pulled out of there prior to the storm. Being a typical mom, I am worried about her down there - she lived there for a year doing an internship after college, so she knows her way around, and she is armed - the people with her are as well, but...
For the diet info - I follow the Virgin diet - I eliminated corn and soy - all sources, as much of the crops here in the US are heavily sprayed with pesticide or are GMO. I also eliminated sugar - all forms except some natural fruit sugars and try to limit high glycemic index fruits, dairy (except goat cheese sparingly), peanuts, gluten, and initially eggs, but I have added them back in as they don't seem to be an issue for me. I don't eat them often though. I follow the Clean 15 and Dirty Dozen for produce, buying organic for the Dirty Dozen. My protein is lean and clean - grass fed, organic. I have found that being on an anti-hormonal this is the only way I can control my weight - vigorous exercise and 1500 calories a day of sensible food did not move the scale. Not one ounce. Once I eliminated the inflammatory foods weight came off without exercise ( I had three surgeries in 90 days and could not exercise and still kept losing weight by eating this way), and everyone I know who has used this way of eating has had the same result.
Posey - chemo can actually change the receptors - this is not that unusual. You will also see TN diagnosis on this site with the opposite on recurrence. Also important to note that tumors are not homogenous - you might have a part of the tumor with different receptors, or a different level of positivity depending on what you look at under the microscope. The thing is that receiving Herceptin/Perjeta is if it is not necessary it may do no harm, and the chemo would have potentially been beneficial regardless of receptor status.
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cherry - you asked about food and Her2+, I don't believe there is any link to eating certain things and Her2. All people have Her2, it is necessary for cell growth - it is prevalent in the digestive tract and cardiac areas of the body. In our cases the Her2 has mutated and signaled uncontrolled growth - like adding gasoline to an already existing fire. So, our cancer cells are growing in an aggressive fashion being driven by both the signal from Her2 and from the flow of estrogen through the body. Comparing the Her2 aspect of tumor growth and the ER and PR is a bit apples and oranges. They are all aspects of our breast cancer but work in different ways.
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Suburbs, your post made me laugh! It is so true. I have, for the past 10 years or so tried to buy organic especially the dirty dozen and whenever financially possible. Fortunately, I live in an area where I have a choice of Wegmans, Whole Foods and Trader Joes, which all enable me to do so on a reasonable budget. I do consume meat on occasion, but again, try to buy organic or pasture raised and organic chicken. I've always bought organic eggs as my dad worked on a farm when he was a teen and I've seen how commercial egg farms are run and I truly think that free range organic eggs taste better. They are about the only thing that I think tastes better organic. I buy only organic coffee and teas as I've read that they are high on the pesticide lists and they're things that I consume almost daily. I also stay away from processed foods and refined sugar (that's only the past year or so) and when I eat out, I prefer to do so at restaurants that prepare the food on the premises. I enjoy a glass of red wine on occasion but since the bc dx, I haven't really drank at all because I haven't done much socializing or going out to eat. I've never eaten much soy, but now I'm vigilant not to consume it in hidden ways. Not eating processed foods allows you to monitor that much more closely.
I tried to fast for chemo, but that seems to have backfired in the most miserable way possible. When I finally ate last Saturday after my first chemo treatment, I ended up with painful, violent diarrhea that has persisted until today. So, this week, I've been eating the BRAT diet that I feed my kids whenever they get diarrhea. I don't normally eat high glycemic things like that, but it does seem to slow down my overactive digestive system this week. I hope to be able to get back to my healthful eating next week so I can build up my strength for the next chemo treatment. I am rethinking the fasting as I don't know if that is what messed up my stomach so spectacularly.
Poseygirl, I haven't read any disparaging comments on the Take the Fright out of Breast Cancer event, but I can imagine why some might be upset about it. That being said, I'm a Philly native and have been to the Mutter museum and it is a great location for a halloween-themed party. They are also encouraging individuals to throw bc awareness parties and raise money. It is one of many ways to gain visibility, but in the end, it's about raising money to support this website.
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SpecialK, what a great girl your daughter is! I know so many elderly have had an awful time and some have died in the nursing homes. I can appreciate why you worry about her; you can't stop being a mom
.I think everyone's input on diet is great. I'd like to adopt some of this for sure. Great input - thank you, all!
ToughCookie, if it were just one event, I'd say great - who cares. But it's a national campaign that they are rolling out. I think money in the pocket is very important and I agree that BCO does a wonderful job here and offers so much. But I also believe that any campaign that is being rolled out by an international organization needs to be open to reconsidering its approach to branding. The current branding doesn't do much for the advancement of what breast cancer is all about. We can't really take the fright out of breast cancer unless its cured. I believe they have not done a great job branding and could achieve equal or more impact from a campaign that is more aligned with messaging. The theme - in my opinion - diminishes the experience and is not an accurate reflection of things. The content is fine on the site - great! But the branding...I see it as a misstep. I'm not nearly as put out by other people, but I do think they've not got the right packaging. Oh well.
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posey - I agree with your thoughts about the fright thing - they actually asked members a while ago, with an accompanying survey and opportunity to comment, about this concept before they started it and I let them know I opposed it.
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Getting my last dose 6/6 of TCPH chemo today! I didn't think Sept. 15 would ever get here 🤗Round 5 was pretty miserable so I vowed to not let it get bad this time. Neuropathy still sucks but my months and months of diarrhea have stopped, due to a sandosatin shot. I finally started to gain some weight back- I had lost 20 lbs already. I have an appetite but food still tastes so awful but I know that will end soon🤗. I was even able to work 2 days this week. Now i get Herceptin infusions every three weeks. Back to the breast dr to discuss surgery plans is next. Thank you everyone on this board for the awesome encouragement!
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LTWG - congrats on finishing up chemo. That is a major milestone. You're going to feel lots better now...
SpecialK, the mods have just written on the Fright thread. They addressed some posters, but mine were ignored
. I think they addressed the posters who were most inflamed (except one poster who they had pm'ed privately and she wanted to clarify their intentions. I was trying to be helpful versus slandering in my posts, but no reply. I am willing to bet that many opposed it, but they had the right support from the people who pay. I guess I'm done with that thread. I have gleaned the following from all of you and from online about diet and think this is what I see:
- more veggies good. Cauliflower, broccoli, onions, asparagus, avocado, spinach (I think), tomatoes...
- less red meat. If eating fish, try for wild salmon. If eating meat, lean protein, grass fed
- Flax seems to be ok. Beans such as kidney and black, good. Not sure about chickpeas - may not be great.
- Lemon and oranges - should probably eliminate.
- Almonds good
- in spite of debate, probably best to avoid soy
- Yes to SpecialK's idea on avoiding corn
- Less alcohol, less sugar
- Green tea a superstar (check source)
- high fat dairy decrease
- watch that Dirty Dozen list for foods to avoid (or labels to watch) due to pesticides
- Store foods in glass containers.
- Consider filtered water
- Consider having iodized salt
- Consider supplements that detoxify (I have to go back and read what I saw was a good one - M something something for initials).
- Curcumin great, vitamin D great, Vitamin E great (thus the avocados).
I know there is a ton more on this, but these are the basic premises I will personally follow. That and exercise - big time.
If we build our own list, we could have it at the ready for others who come onto this thread...thoughts? The Triple Positive Diet, Environment and Exercise Top 10 Lists?
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Thank you SpecialK, I am trying to understand what to eat now while treatment and later on. I am glad that everything is working out for you after the hurricane.
I had an appointment with a dietitian today and her advice was that I should stay away from grapefruit during treatment because the nurse told me so and I have to get a lot of protein now. As far as the post treatment is concerned I should lower the intake of red meat and increase fish and chicken, lower intake of sugar and eat a lot of vegetables. When I asked her about phytoestrogenes the answer was that we cannot eat or drink so much of those that it would really matter. There is no so much research that proves that bc can be caused by food. I should stay away from the vitamin supplements while treatment and later on I do not remember what she said but I am going back again next month. Ecological products are good.
Very good list Posey, I will copy it.
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