TRIPLE POSITIVE GROUP
Comments
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I have been intrigued by a vegan diet for awhile. I am very skeptical about my ability to follow through or do it right though - at this point, we are mostly organic (all meat and dairy and produce, but touch and go on regular gorcery stuff). My family resists the organic stuff as it is. I can only imagine how hard it would be for me to be vegan with them wanting things to just stay the same. My kids just don't get the connection of diet with cancer (too young and/or delusions of omnipotence). And my husband, well I don't know why but he continues to bring non organic produce into my house off and on, like he doesn't take it seriously. Drives me crazy. This is a very smart and usually very supportive man - what's the deal with that???? I take full responsibility for getting everyone used to the crap we eat - I never have a lot of sweets in the house, but we always have goldfish and trix yogurt, etc. Yuk!
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My DH is the same way, his philosophy is he grew up eating conventional and is fine. To me that is the difference, I grew up in a Mecca of organic fruit and veg along with a fish heavy diet. We as women would rather be pro active and men tend to be reactive when it comes to change especially when it comes to diet. Vegan is a hard diet to follow especially with kids, but maybe try for a week at a time? It is tough to follow especially since most protein substitutes contain processed soy, which is as bad for you as a potato chips. Just make sure you get enough protein during treatment. I was thinking when I am done with chemo, I would juice cleasne for a week after SE subside, then go back to Pescatarian for a few months.
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Sara,
Don't beat yourself up. I'm a mom and my youngest is a pretty good eater (healthy) but my 15 year old makes his own choices. He buys all kinds of crap to eat when not at home. I've resigned myself to the fact he can make his own nutritional decisions (and will) when he's out and about. They're not MY choices, but I can't force feed the kid.
Also (in general, not toward you Sara) I don't buy into the whole diet cancer connection. Sure I've read lots of things about it, compelling theories that made me want to put the book down, get up and clean out my kitchen! But I didn't, and this is why....
When I met with a team of geneticists, they told me diet is important to keep the body functioning properly. There are literally hundreds of "fail safes" in each individual cell of our bodies to keep cancer from growing. That it can actually grow (considering all it has to get through) is amazing.
In short, the problem occurs at the cellular level with communication within the cell. If they can figure out what triggers it in some people and not in others, well then, they'll be on the road to a cure.
There are plenty of theories out there. These geneticists believe it takes a series of "triggers" to disrupt the cell's communication process...one of which "may" be diet. Others mentioned included heredity, birth anomalies, damaged DNA due to outside causes (like radiation), the unknowns, etc.
If diet were truly THE LINK with breast cancer the way so many authors claim, then men would have it in equal numbers in this country. (Same thing goes with the deodorant thing.)
I understand diet is a way for us to actually DO something about our cancer. (Or at least feel like we do.) But it seems counter-intuitive to believe it is a HUGE factor or more people in this country would have cancer. Yes, I know the numbers are already staggering, but they are not so staggering when you look at the obesity/over weight numbers for our population.
I don't buy organic very often, and when I do it is for items in which I eat the skin and the skin is not able to be washed well (like cauliflower).
Last year I worked with a community of volunteers to establish an "organic" urban farm. I navigated the EPA, state requirements, and the administration of this project and WHOA what an eye opener.
First I want to start with common sense. There are no "pure" places to grow food in this world. I lived in the interior of Alaska for several years and the effects of acid rain and global pollution are felt even there where not a single crop (other than native grass) has ever been raised.
We live in a post-industrial world. So Farmer Organic doesn't use chemical pesticides or franken-seeds, or synthetic fertilizers (so they promise, as of last year there were very few inspections to guarantee this!!)
Have pesticides EVER been used in that soil before? How about close by?
Right now in the US, 3 years is all the time that needs to pass between a totally pesticide ridden farm and the "new organic" one. (This huge community garden I worked on was placed in an "rehabilitated" (reclaimed) light industrial area in the middle of a city. (Meaning it once housed office buildings, car repair shops, and light machine shops.) It is surrounded by blacktop streets, other light manufacturing facilities, and residential homes.
They were able to start farming RIGHT AWAY without a single soil inspection because they were using "raised beds" (Which were all of 5 inches high...and they sell produce to local farmer's markets and resteraunts.)
People around here "buy local" so it's a good project for volunteers and community members(though not profitable).
Moving on....
What about the farmers in the same community or state who do use pesticides, synthetic fertilizer, etc?. In ALL of our often shrinking underground aquifers in this country, there are trace (and sometimes much much more) elements of chemicals known to be carcinogenic to humans. These aquifers feed above ground water sources such as lakes, streams, ponds, etc.
Last I checked, even organic farms use water, and in an effort to keep costs down, many use wells, ponds, streams, "natural" water sources.. most all of which are fed by aquifers.
Not to mention lots of organic farms use manure collected from local farms as fertilizer. These farms where the manure is procured, are often times NOT organic and the animals producing the manure exposed to varying degrees of synthetic chemicals. Even if the farm is organic, often times the grain used to feed the animals is not. (Too cost prohibitive.)
Most people don't realize there are 3 levels of organic in this country. Unless it says "100% organic" then the producer is not promising the product was planted, raised, and shipped entirely without synthetics. And most of the time that is taken on faith.
I won't go into all the details, you can google it if you're interested. What I learned though was most all of this is taken on faith. After a farmer/producer jumps through 1001 very time consuming and occasionally expensive administrative hoops.....well, NOP didn't have the budget to do anything other than issue "requirements."
Many organic farm products aren't even inspected in the field. (Though I have read an increased budget is changing things a little.)
All that to say this......Just because something is labeled organic, doesn't make it "better." It doesn't guarantee the product hasn't been exposed to "second hand" chemicals (I'd argue that is impossible anyway). Unless the packaging says 100% organic, it HAS been exposed to intentional synthetics at some point, by as much as 30%.
Organic has a long way to go imo before it's actually what so many people already believe it to be.
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TonLee I agree with you. I'm not sold yet and I do think it's many factors, many that you can't control that caused our cancer. I still think for me living in the city breathing all the crap and stress were the final triggers since no one in my immediate family has any kind of cancer, no breast cancer at all in my family. (Both my grandmothers died of either colon cancer or lymphoma but no breast cancer).
In general I'm very healthy except for this cancer diagnosis so I don't feel I was doing things incorrectly. I ate all the right things, hardly ever drank and exercised or was active in my life. When you hear women in less developed countries don't seem to get breast cancer as often as in developed countries you have to wonder if it's because they might not live as long either. They can die of things that typically we in industrialized nations don't die of.
For those who choose the all organic, vegan or vegetarian all the power to you. If done correctly you are eating very healthy. It may give you some edge in the battle that has not yet been excepted. I'm not sure if it's really worth the life style change and the cost at this point… especially when they can stick a label on the food that says "organic" and we really don't know what that means anymore.
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Hi Ladies: I've been reading through your posts for the past few days and some really interesting things here. I have a cousin who was diagnosed with breast cancer YEARS ago and she had a lumpectomy and refused further treatment and went on a macrobiotic diet and it has been 30 years and no re-occurence. Could just be a fluke though.
I too have always been a very healthy eater and always worked out and breast cancer does not run in my family so it does make you wonder. With the amount of Breast Cancer, research needs to really be ramped up.
I do plan to really adjust my diet after I finish chemo though but for now, I have to eat what I can and I'm still trying my hardest to do it as healthy as possible with the Greek Yogurt, etc. I do seem to be eating more dairy than normal because things like ice cream and cottage cheese seem to go down easily.
Oh, regarding organic, our educational nurses said they are good but you still don't know who has touched them and what germs lurk on the organics so make sure you wash them thoroughly too.
One thing I will attempt to do is go with the pesticide/antibiotic free meats.
Good reading here! Thanks.
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Welcome ArleneA!
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Arlene...I think you just trust your body though chemo, and do whatever you feel is right. If the dairy goes down well, dairy it is!! I am vegetarian and craved Arbys roast beef all thru chemo...go figure. I ate it at least 2 times a week, lol.
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Geewhiz that's too funny. Even I don't eat Arby's and I do occasionally eat red meat. It what Arby's serves red meat? I never eaten there.0
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Don't know if BC.org will let me post these...I've been having problems the last 24 hours with it, and from reading other "new" posts, so have a lot of other people.
Ok.
I'm concerned.
I'm REALLY concerned.
I have some cording on the MX side, going up the arm and down the ribs. I don't know if it is Mondor or LE.
A few days ago I noticed one of the lymph nodes under my arm, (you know the axilla I fought to keep?!?!?!) Well, one of them is swollen. I'm taking a picture but don't know if it will show up or not.
I'm calling the Dr in the morning to see if I can get an appointment. Not sure what they're going to say considering I've postponed radiation until my incision heals (and I get fills). And I get the impression they all have the attitude that I get what I deserve.
I've listened to everything they've said. Done my research. And made the best choices I could for my particular situation. Some of them may have been wrong, and sometimes they led me away from conventional standard of care.
Isn't it sad that I HESITATE to call about this because I sense their derision over my choices?
Oh well.
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Tonlee I would demand you get to see someone within a week. Remember even if it is cancer even our triple positive doesn't grow that fast. With in a week is ample time but ideally it would be nice to be seen before the weekend. But…
It could be anything. Even if your lymph node is inflamed it might be just fighting some infection. Don't assume the worst.
I would also let your doctors know how you feel their attitude is "she deserves what ever she gets" by not going with their recommendations. Treatment, non treatment all have risk involved. This is your choice and you where willing to take the risks. But…
If it is the a recurrence I think you might review your choice of no more nodes. LE is better than cancer… but lets hope this is just a cold in your lymph node or something benign like that. ♥ ♥ ♥
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Just to make you laugh. A year ago did you ever think you'd be posting pictures of your armpit on a public forum?
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TonLee - I agree with Lago - go in there so you can put your mind at ease. I am concerned about your cords! Please tell me that you are seeing an LE therapist twice a week for them! Those are serious cords and need to be treated I think.0
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TonLee - Just looking at the pics again the swelling that you see could be from the cording/inflammation.0
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Hi ladies,
I am in the chair for #4. So far, so good. I have to do steroids now before, during and after due to the rash after #3. I think it's giving me a tummy ache even thought I ate. No biggie though. The PA thinks it was a reaction to the antibiotic for the UTI after tx #2 rather than the Taxotere so that is good. The rash I mean, not the tummy ache!
Ton lee I hope you are ok and can get that checked! When I typed your screen name all together it autocorrected. To Tinker! I am on my DH's iPad.
I will post later but I wish you all a nice day.0 -
Hi SpecialK - I had 20mg steroids the night before, 20mg in the morning of the infusion and 10mg during the infusion. It also upset my stomach, especially the first dose the night before, I always had to have dinner before I took it.0
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I never take any drugs without food unless it specifically states not to. Basically the proton pump inhibitors (Nexium, Prolosuc, Protonix) are taken on empty stomach. Everything else I made sure there was some food in the tummy
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Lago & Omaz,
I got in tomorrow at 11 am. Hubby is going with me because he's worried.
I don't know if it is a "recurrence" since technically I am still in treatment for it. I haven't done Rads yet, which is supposed to treat the chest wall, axilla, super clav, and skin.
I am not seeing an LE therapist Omaz, but am going to get a referral for one tomorrow. What you can't see in the pics is the large cord webs out into many and goes to the elbow. It just started hurting yesterday, and my hand is cold. It feels almost like a tourniquet..like when they tie off your arm before taking blood.
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Lago..ha..I never expected to post pics of my foob, or my underarm! Amazing the difference a year makes.
Good luck today Special K!
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Good TonLee I am glad you got in and will get a referral to an LE therapist! Here they tend to be very busy and when I first had trouble they offered me an appt in a month!! I said there must be someone I can see quicker and the nurse thankfully called all around and got me into a lymphedema clinic at the local hospital. I was very grateful to her for taking the extra time to scope out help for me. Be pitiful if you have to, you want to get into see someone ASAP. They should be LANA and CLT certified if possible.0
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Tonlee-will be thinking of u tomorrow!!! Here's good thoughts coming your way!!!!!
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TonLee I thought you were going to an LE therapist for your cords. So glad you are getting a referal. I think that was my problem from the start. I had cords but the PE wasn't an LE therapist. She didn't even know what cords were. (She told me she wasn't an LE therapist).
Really hope you node/bump thing is nothing. Please let us know. I want to be posting your happy dance song tomorrow.
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TonLee - ditto what everyone else is saying - glad you got in quickly, and glad you will get a referral for a LE therapist. Also wonder if the bump you are seeing is related to your cording maybe? Hope so. Also, though I get the impression you are quite fit and don't have a problem with fat - I have some little lumps here and there which are like fatty deposits. What you're seeing could be lots of things. Stay positive.
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Lago, no I haven't seen anyone. I think the Drs (and all have seen this, rads, onc, and PS) were waiting for it resolve on its own...and I've got 98% range of motion...and until yesterday it didn't hurt...
Sara, I hope it's related to the cording. I have read that Mondor's is an inflammation, and that lymphs can swell because of inflammation...but honestly? I'm just not that lucky.
I don't think it is a fatty deposit because I don't have it anywhere else on my body and it's attached to a flexible small "vein" like structure running up my arm.
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I hope they don't want to stick a needle in it ... ouch!
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TonLee, so happy you are going in. I have been so respectful of your decision making process...we all want the best for ourselves and do our best with the decisions. Studies show the same outcomes, remember..axillary nodes or not!!! No reason to second guess at all!!!
Those rads will wipe out anything still standing after chemo.
I had that same cording for a long time...through my elbow and my forearm felt buzzy occasionally.
And Lago, good for you that you don't know what is served at Arby's!!! Now the sight of one makes me think of chemo and get really nauseous. Maybe that's what I should have done during chemo...taken all my favorite foods and eaten them during treatment so that now I couldn't bear the sight of any of it!!!!0 -
TonLee,
I'll be thinking about you tomorrow. I am curious what they say as I am sure you are too.
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geewhiz I ate everything during chemo. There was just that one week I had to cut back on pepper, hot spice and nuts because they tasted bitter. Nothing can stop me from eating except a stomach flu. I think I had the stomach flu once as a kid. Still wanted to eat pizza though.
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Thank you Gee. I agree with you. But there seems to be two schools of thought right now in my sphere of treatment.
1. Axilla dissection is being fazed out (only one Rad Onc admitted this is likely)
2. Axilla dissection is still necessary and should have been done in my case.....
Unfortunately ALL the different medical professionals I've come into contact with so far from Onc nurses up (and I've gotten second opinions (and sometimes third) on everything...can't seem to get past the fact I made that choice).
Barring a single Rad Onc (second opinion) they all seem to get "stuck" on the non-axilla dissection. They can't see past it. Or, sadly, don't know how to treat me without that information...so they blame me, wash their hands of the situation, and I get what I get.
While I do believe it was the right decision for me. It'll be just my luck that it will be the decision that kills me. Even though the literature supported it. I will be the one who ruins it for the women coming behind me..
I can hear them now saying to the BC woman who doesn't want axilla dissection, and wants immediate reconstruction....
"Ah yes. We had a woman who wanted to go that route once. She did. Against all our advice. And now she's dead."
Or, "Yes, we had a woman once who postponed Rads for TE expansion. It came back in her axilla..which she refused to be dissected...ended up being what killed her."
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Thanks Nora.
Maybe I'll actually get a scan! lol
Let's see how close to right I am ... this is what I think will happen.
Onc will look at it and say...Hmmmm. Probably just something caused by the cording.
He'll send me to a LE specialist hoping it will resolve itself in 1-3 months.
I guess barring a scan or needle biopsy, there isn't a whole lot else he can do.
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Hi All,
Back from #4. Went just fine. I am curious how the steroid will affect how I feel for the next few days since this is all new to me. I have to attend a wedding 3 weeks from Saturday, right after tx#5 so I am tracking how I feel this weekend to know if I will be able to handle it. I think the stomach ache came from steroid this am combined with steroid in the drip. I didn't have a problem last night when I took it by itself with food.
TonLee - Make sure you are vocal about what you want - somehow, I feel this is not a problem for you! Don't spend too much time thinking about having made an error in judgement about the dissection. I didn't want to do it either, argued against it, but the BS and onc won. It would really surprise me that you basically have an overnight appearance of a tumor/mass this soon after finishing chemo. Wouldn't that be pretty unheard of? It has to be something else I think. Maybe something vascular if you think it is attached to your vein.
I had a golf-ball tumor removed from my calf in 2008. I was treated at Moffitt Cancer Center at the Univ. of So. FL by the Chief of Sarcoma. Scarier than BC because if I had believed the MRI I would not be typing this now - I would probably be dead, 80% chance of death within 5 years. Lots of folks in that waiting room with missing limbs, and they still fall into that 80%. Fortunately for me it was an extremely rare nerve sheath tumor, they almost never occur in an extremity. The nerve was not tangled or I would have lost control of the leg if they had to remove the nerve with the tumor. I was SO lucky, thought I had dodged the cancer bullet........apparently I was just dodging for 2 years. I found that calf lump putting on lotion when I was visiting my brother in California who was dying from bile duct cancer. That whole summer sucked big time.
OK, now that we are all super-depressed I will shut -up! I thought twice about writing all that because it was scary, but how many places can I tell that story and have people who know how it felt?
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