Starting Chemo March 2015

eheinrich

I use a lot of stuff from Lush. Shampoo, conditioner, lotion. My husband is obsessed with their stuff. They don't make make up or sunscreen but just about anything else you could want. Everything is organic, handmade, no chemicals.

SpecialK

I am not a big fan of the Look Good, Feel Better thing but it is hard to bash them when everybody is so excited about going at the beginning of treatment. Yes, they do give away cosmetics that contain carcinogens. Another one that conflicts me is the breast cancer fund raising arm of Estee Lauder - Breast Cancer Research Fund - they give a ton of money to research, and take very little for operating costs - unlike Komen (don't even get me started on them), but Estee Lauder still peddles carcinogenic cosmetics. Evelyn Lauder had cancer herself! Ugh! It is important to note that many smaller companies like Origins - which seem to be independent - are actually owned by cosmetic conglomerates, and they are pretty cavalier about what they put in their products. Origins is actually owned by Estee Lauder, as is Clinique, Bobbi Brown, MAC, and Aveda.

I do use some products by Tarte, Boscia, Josie Maran, and Korres. I use olive oil bar soap and shampoo/conditioner.

jackbirdie - rather than lament the situation be empowered that you now know this, and share this info with others.

Jackbirdie

oh alright.... If you say so.

I think I'll write a letter to the ACC and suggest that rather than giving away product containing carcinogens to CANCER PATIENTS, instead why not devote 20 minutes to skin care and how to research safe product without peddling any particular pink washer.

I did notice Estée Lauder's products were overwhelmingly "in the red" zone.

Still pissed but working on said empowerment. I am a disciple.

rleepac

You'll notice on EWG that most anything with a fragrance will be in the red zone. So I like to use fragrance-free as my starting point and then I can add essential oils if I wanna smell pretty.

Jackbirdie

Bekah- great idea. I use lavender a lot. Do you have any suggestions for others i might try?

I have Rosemary, Eucalyptus and something else I can't remember but i would not want to wear any of those three as a fragrance.

ksusan

The LUSH shower gels I like have methylparaben.

Jackbirdie

Frau Doktor- I just looked it up. Ugh. Wiki says not too bad. That it metabolizes right out.Other sites say they've found it intact in breast tissue. And is suspected of a possible link to breast tumors. I was given a basket of lush products during chemo. Was very impressed.

Does everything have to turn into a disappointment? Do I have to walk around the rest of my life with no deodorant, no make up, and god knows what else?

I was also struck by the fact that on the skin deep web lookup even some natural oils, when used in concentration, can be dangerous. So being 100% natural doesn't always mean ok. I think for me I'll have to research every product I use and drill down into the data.

Further, the best advice they have on sun damage is that sunscreen should be your LAST RESORT. They advise avoiding the sun, (i.e. Exercising early and late to avoid exposure as one example), covering up, making your own shade, and as a final protection when those things are not possible, to use the least dangerous sunscreen. They all carry some level of risk.

I woke up with a migraine this morning. I need to get out and take a walk and divert this line of thinking.

shaz101

I'm in hospital with chest pain. So far my chest xray has come back clear but the blood tests have come back with something elevated which means possible heart damage and the other tests have come back as possible blood clot. Oh the joy of it all. Blood test for heart damage will be repeated soon.

I've been injected with a blood thinner and booked in for a ct scan in the morning.

Fuck cancer and Fuck cancer treatment.

Jackbirdie

Oh Sharon! Nooooooooo! You of all people didn't need this. I can't imagine the worry and frustration. And right smack in the middle of rads.

I feel like jumping on the next plane to Oz. I know you have your mum and Andrew. Please know that I am there with you in spirit.

I won't stop thinking good and healing thoughts for you. Hugs and mojo coming your way now. I hope you can feel it so far away.

Do they suspect the chemo, the Tamoxifen, or both???

IndyGal35

I am so sorry, Sharon!

You've been through the wringer from minute one. I just don't even know what to say. Screw cancer for sure!

BBwithBC45

Sharon, so sorry you are going through this. Please keep us posted.

Sending hugs.

BB

shaz101

thank you.they said it may be the radiation. I've just had the second test. I will let you know when I have the results.

molly1976

Oh, Sharon, I am so sorry! Keep us posted!

sloth - I've been taking Tamoxifen a little over a week and haven't noticed anything at all. Not even hot flashes. Yesterday I was really emotional about things that wouldn't normally bother me so much and I wondered if that might be Tamox-related, but we are having to put our beloved cat down next week and I think that's probably the real reason.

ksusan

So sorry, Sharon, and so glad you're getting medical attention. Good for you for not toughing it out.

Katy, I am thinking of it in terms of timing and moderation. Right now, while I'm in radiation, I've switched a lot of my skin and hair care products. When I'm back to full function, I'll use the more problematic ones sparingly, because I like them and don't want too much exposure to potential carcinogens. We switched from plastic to glass food containers and water bottles. I'm not eating much soy or drinking much alcohol until I'm on Tamixifen.

That said, for a lot of these things, we don't know which are significant causes of problems. I'm taking L-glutamine because the possibility of increased neuropathy is worse for my quality of life, and more dangerous to me as a person with diabetes, than the possibility that it feeds tumors. I'm not going to stop eating at restaurants, which will be receiving their soy-oil-laden foods in plastic tubs.

We can control some things, but since cancer has multiple causes and most aren't known, I think we have to give up the idea that if we're "good enough" we can prevent recurrence. There are things we can do to reduce our risks, and things that might reduce our risks, and we can't do anything about the past or a lot of aspects of the future. To the extent that I can, I'm aiming for well-informed moderation and appreciating being alive.

SpecialK

shaz - sending you good thoughts

jackbirdie - it is important to strike a balance going forward, you can't exist in a perfect protective bubble. Since it is not well understood why we develop cancer we really don't know for sure if avoiding all of the things that may cause trouble really does make a difference. There are plenty of stress-free, yoga practicing, healthy eaters who don't wear makeup and deodorant that have breast cancer. You should do the best you can to minimize exposure but know that it may, or may not, make a difference. You can't stress yourself out about this, and you have to know that the odds are in your favor that you are done with breast cancer. And yes, just because something is natural doesn't mean it is not harmful or dangerous - the taxane chemo you received began as the bark of a tree.

Jackbirdie

KSusan- nicely put. I agree. I sometimes just get a bit ramped up over it all.

eheinrich

I like the way you put that ksusan.

Sharon - UGGGGHHHHHHHH. I'm so sorry. You have certainly been served a foot long shit sandwich. Keep us posted.

Jackbirdie

thanks Special. I know. I actually knew about the yew tree, being a gardner.

I just lost a friend to bc a couple of months ago who lived clean. Didn't help her.

I know that until they know how we get it they can't very well tell us how to avoid a recurrence. Indeed a balance must be struck between QOL and the best wecan do. Life must be lived in the meantime.

Italychick

and Katy, don't forget, there are some of us with no estrogen receptors with breast cancer. Who knows what causes it. We can't beat ourselves up over every choice, just do the best we can.

Sharon, so sorry to hear you are having issues. Could it be chostochondroitis ( or however that word is spelled)? I know women speak of rib pain and lung issues. Fingers crossed your heart is fine. Please post as soon as you know something, will be thinking about you.

ninjamary

Carrie - I feel your pain. Though I must say sometimes if I don't want to do something...I blame it on "The Cancer". Or if we want to leave a place early both DH and I blame it on "The Cancer". I might as well pull the cancer card while I can. Tell your husband to go out without you...demand it if you have to. I love getting some "me" time also. I am rarely left alone. I crave it sometimes.

Jackbirdie

T- believe me, I never forget about you and the other sisters here that are triple neg. I'm sorry if I appear overly absorbed with my own issues. If there was anything at all, any advice I could share, I hope you know I would. Have a great hike today

SueH58

Theresa, let's use you as a good example. You exercise hugely, you appear to have always eaten good food and use natural products. So why did you get BC? I, on the other hand, did not exercise much, am overweight and did not have great eating or drinking habits. So which is worse--Theresa's unfair diagnosis, or the guilt I feel because perhaps if I would have treated by body better I may not have gotten BC?

I agree with the thought, though, that you can only do the best you can do. I will return to work soon, and will not have time to google every product I buy. I know I will have more awareness than I do now, and maybe I can get my shampoos and stuff switched over before returning to work. I did find it interesting that most Secret deodorants were only a 3. I didn't think that was too bad.

That said, I watched Dr. Weir's video on the link Special sent. He basically said if he can't get the dirty dozen in organic, he won't eat them. I bought an expensive and delicious apple pear yesterday. I just washed it with soap and then peeled it and then felt it safe enough to eat.. I will gasp when I see little children eating grapes right out of the bag at the grocery story.

I guess it's true that ignorance is bliss.

Italychick

sue,don't use me as a good example lol. Five years ago I was way overweight, and the birth of my grandson caused an epiphany in me, which is why I do what I do now. According to my MO, by the time a tumor is discovered at my size it has probably been there for 7 or 8 years. But did I cause it? Did carrying my cell phone in my bra cause it? Who knows. I will never know. But I have a mom who is 130 pounds overweight, eats bad, is an adult onset diabetic, shoots insulin so she can eat Hershey's chocolate bars and chips, and she is 73 with lumpy breasts, but never a sign of breast cancer. She also eats nothing organic, and buys the cheapest junk products she can find. I don't think we will ever know the cause.

But there is a new stage 4 forum where a woman got tested for androgen receptors on her tumor, and it tested 99% positive. So that is an intriguing wrinkle in this process. Does the chemo we get work on androgen receptors? It is an issue I am going to start looking into. So maybe the body just, for whatever reason or maybe no reason, runs amok.

My brother in law told me that maybe I have already corrected whatever caused the original tumor growth, and all I can do is move on from here. I hope! I do feel that exercise goes a long way to getting the body in balance, but the right amount, not over stressing our bodies. I have eaten organic for a long time, but I'm not sure that is the only variable in the equation

SueH58

Well, if 1 in 8 get BC, it seems that things just sometimes go amok. But I think we do know that weight and too much alcohol increase the risk. And that exercise has proved to keep recurrence away. Other than that, who knows.

SpecialK

Italy - I would doubt that chemo works on androgen receptors, because it doesn't really work on estrogen receptors - that is why ER+ women also take systemic anti-hormone therapy in the form of Tamoxifen or aromatase inhibitor drugs after chemo. I think the androgen receptors would be treated with another form of endocrine therapy, and the resurgence in focus is because there is now more known about the role of hormones and genetics than when androgen receptor info was first looked at many years ago. It is not really a new concept - and is less straightforward than ER+ so this is a new potential treatment opportunity in light of what is now better understood.

pboi

Mentioned the other day that I have been having low back pain which scared me. Finally got my MO to order MRIs. So thankful today that I have a cyst on my sacrum that's likely causing the pain. Oh how low I've sunk to be thankful for a cyst. So relieved

Whitney...remembered that you had an ultrasound the same day, hoping everything was normal for you.

PB

eaglemom

Hi March ladies. I'm still lurking on your board and thankful to all of you for giving me a heads up of what to (possibly) expect as I progress through treatment.

Sharon; I'm sending positive thoughts your way.

All your talk about safer products made me want to chime in. For the last 14 years, I've been getting all my cleaning, personal care, skin care and cosmetics, over the counter pharmaceutical, and most nutritional supplements mail order from a company who's mission it has always been to provide safer products with no harsh or harmful chemicals. I don't think I'm allowed to say the name of the company here, but if you send me a PM, I'd be happy to share.

KBeee

Sharon, hoping for good news with the tests. keep us posted.

Ksusan, you summed up my thoughts. I try to eat healthy, exercise, and make good choices but Zi refuse to become obsessive compulsive of leg if control me. Moderation and common sense are what I strive for.

On, good news!!!

eheinrich

One thing to keep in mind when considering the toxicity/cancer promoting lists of chemicals found in products is the source of the data. I just did a literature search for studies involving methylparaben. Studies done in cell lines - where cells you buy in a container from a company (each cell line represents one tumor from one patient kept alive in a lab) - are treated with the compound in question have shown possible cancer promotion. These are very artificial conditions. Mouse/rat studies where methylparaben was injected directly into the animals, showed no tumor formation. Methylparaben was detected in human tumor samples but its effects there are not directly known.

This is the case with most of the studies done on these products. Does that mean I'm not going to in general be more informed about products? No, but I think we need to be concious of where the info on the products comes from.

molly1976

I know this is probably the lazy way out, but I'm just going to start buying all my shampoo and cosmetics at Whole Foods. It's close to my house and I figure their stuff is mostly pretty good.