TRIPLE POSITIVE GROUP

Suburbs

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.

ElaineTherese

Congrats on your new job, Kattis! Yes, I found that New Yorker article interesting as well.

kae_md99

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

Soxfan75

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?

Soxfan75

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.

moodyblues

Kattis. Thanks for sharing the article, it was very interesting.  Makes one think, doesn't it?

PoseyGirl

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).

SpecialK

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.

SpecialK

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.

toughcookie_21

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.

PoseyGirl

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.

SpecialK

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.

LTWJ

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!

PoseyGirl

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?

Cherry-sw

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.

PoseyGirl

thanks, Hapb. I will create a better list based on what you all contribute...we could then save it and attach when someone else asks? I knew about the mushrooms, but didn't realize carrots were any big deal? Cool . Also will add in the super fruits.

Celery is just one of those you have to watch go because of the pesticides.

I just like having all this at the back of my mind for a general guideline. I also don't want to let it overwhelm me.

kae_md99

LTWJ, congrats!!

ladies where can we buy grass fed meat? does it say on the label

SpecialK

kae - my regular grocery store has a selection of grass fed beef, I believe Trader Joe's does, as does Whole Foods.

Cherry-sw

I red an article in a local paper that one should not eat too much meadow mushrooms, Agaricus in English? The white one that is very common in the stores.

Great, now I do not know how to switch of the italics. Anyhow, they contain some cancerogenic substance. The article was written by a mushroom picking expert. I am picking mushrooms myself so I was interested and red it just to find out that I will not eat that much of Agaricus anymore.

Cherry-sw

I specifically asked about lemons and oranges and was told that they were ok, the grapefruit is a different thing.

Cherry-sw

Anyone on weekly Taxol, did you lose your eyelashes and eyebrows?

kae_md99

Thanks SpecialK

Saadia1

Cherry-sW

Just finished my 9th cycle of taxol. The hair on my head has thinned a lot. I estimate maybe 30% is gone. But it's still enough that I can do a bit of a comb over the hairless parts and get away with it. Still have my eye lashes and my eyebrows. Fingers crossed that it stays that way. Oh and still have hair on my legs and unmentionables. lol.

Saadia

T-Sue

Cherry and Saadia - congrats on knocking off another Taxol!

I too had my hair thin out quite a bit on weekly taxol. I was able to get away bare-headed until about cycle #10. Ever since then I have been wearing a hat or scarf. In retrospect, I wish I had buzz cut it at that point rather than doing the comb over. I am now 3 weeks PFC (post final chemo) and it has only just stopped shedding. I would say I have 10% of my hair left. I had it buzz cut last night and it is such a relief!

I have been watching my eyebrows and eyelashes VERY closely because I hear that many women lose them in the month after chemo. My eyebrows have thinned out significantly, but they still look ok. My eyelashes seem to be fully intact with no evidence of shedding. I bought a bottle of castor oil and apply it daily to the base of my eyelashes (using a q-tip on my eyelids) and rub it into my eyebrows. I also rub it into my scalp the night before I shower, wear a scarf over it while I sleep, and wash it out in the morning. I don't know if it helps with shedding and regrowth, but it makes me feel like I'm doing something.

BJI

Cherry-sw By taxol #5 my hair had thinned about 50%, and since I couldn't color it, it was very grey. I had it buzzed short and wear my wig when I go out. At home if cool I wear a bamboo cap or go bare. My hair is growing, kinda peach fuzz about 3/4 in. My eyebrows and eyelashes stayed intact until recently. I am 4 weeks PFC and suddenly eyebrows and eyelashes shedding. Haven't shaved my legs or armpits all summer, but now feel like they are getting stubbly. Final taxol August 16, had my first herceptin only (triple dose) the next week. Our diagnosis very similar.

deni1661

hello fellow cancer warriors. Sorry I have not been able to post for quite some time but you are all in my daily prayers! Specialk I'm so happy you made it through the storm ok!
Kattis, congrats on your new job!

I value all the information and experiences shared here so much as no one in my world can relate to what we go through. I have been feeling frustrated lately because now that I'm done with HP everyone seems to think I can go back to my old life - working 70 hours a week and then weekends filled with insane social requests. I am still recovering from the two surgeries, the Letrazole seems to be causing fatigue and the body aches seem to be increasing again. I shouldn't complain but some days the thought of recurrence worries me because of the high stress life that I can't seem to escape. Is this hormonal or does anyone else feel like this? I want to run away and hide so I won't have to deal with anyone or anything but that seems cowardly.

Sorry for the rant, thanks for listening

deni1661

specialk, posey, toughcookie, Hapb, all...thanks so much for the diet info. I am intrigued and find it difficult to know what is best to follow. I try to eat mostly vegetarian but agree it's really tough and not always satisfying. Some days I go completely bonkers and head right for something sweet but I think that's related to stress. I do feel a million percent better when I eat "clean foods" (organic, unprocessed, no sugar) so that motivates me to make better choices more often.

I'm all for sharing tips on nutrition and like Shelabela suggested we should all do what we're comfortable with. Information is definitely our friend and I love everyone's input

deni1661

Please take me with you Hapb! I feel that way too. I must get better at saying no
Thanks for making me feel better

Suburbs

deni1661, I can completely relate to your comments. After a day at the office, I am a dish rag and require a nap. Entertaining others requires more energy than I have right now. No matter how much I wanted to be done with treatment and get back to normal, I nowdon't think that can happen.

kae_md99

suburbs and deni, i feel the same. i am ready to collapse from fatigue late in the day....and the funny thing is,my onco tells me i should be feeling better by now....