Calling all TNs

jenjenl

I am like a pendulum - I like to keep balance in the middle and to not swing to far one way or the other.  I don't get too worked up about all the foods and juicing but I did change my diet habits in general.  Examples:  i don't drink soda, i have a yogurt smoothie with fiber every morning, I eat crunchy cereal, i have whole wheat pasta/bread/rice, I eat less chocolate, I eat more veggies and have fun experimenting with new ones, I don't eat side items out of boxes.  I don't eat red meat often - for some reason ever since radiation i don't like red meat, however, when my DH cooks a filet mignon I most certainly eat it.   I just don't get into eat this or that bc of this or that.  Everything changes...like eggs over the last 10 years - 5 years they were bad for your cholesterol and now they are good.

Our changes were easy to make, fit with the budget and are overall healthier.  It has been hard to take my kids along the food journey....I consider them phase 2..LOL.  At this point in my life it's all about a balance.  The one thing I wish I had more desire and energy to do would be exercising.

We are off to the pool again today...the kids are loving it and it's been a lot of fun.  Vacation to Folly Beach, SC in 13 days - we will be there a week.  The best part of this vacation is being done with treatments and it's our 1st vacation in our marriage (8 yrs) that we are debt free.  I paid off the medical debt on Friday!!

My contractor is finally coming next week to build the deck and shed.  Now that we are staying here a few more years (we were supposed to move to Charleston in January...stupid cancer) I'm going to make the updates I wanted to.

I am going to ask my MO about metform (sp) and see what he says...I suspect if he thought it would benefit me he would already be giving it to me.  He's good about telling me studies.  Although I kinda don't want to take it based on the amount of time some people are spending on the potty.

Hope everyone has a fantastic Sunday.  Enjoy!!!

slv58

Debra, I have a vitamix also. Have you tried the taco soup recipe? My dh and I love it. I'm also looking or a good v8 recipe, would be great to be able to make your own.

susanella

Hi,

I was TN Grade 3 with a 1.9 cm tumor with 1 positive SN and 1 positive intramammary gland both with micromets (Stage IIa).  I had a lumpectomy and re-excision (clean margins) in Oct. 2011, followed by ACT, 25 rads, and 5 boosts.   I am very concerned since I never had a PET scan.  When I asked my BS about getting a PET scan, she discouraged me.  I finished dose dense ACT in March 2012 and rads (25 plus 5 boost) in May 2012. As it turns out, I was diagnosed with Stage I uterine cancer in Sept. 2012 (no lymph node involvement) and had a complete hysterectomy in Nov. 2012.  Maybe if I had had a PET scan before or after my BC surgery I would have found the uterine cancer even earlier.  Now I am worried that maybe there is something else my drs. missed.  Does anyone have any thoughts on when a PET scan should be ordered?  I seem to be one of the few (or maybe the only) TN BC patient who never had one.  Thanks.

Susanella

schatzi14

susanella...My MO doesn't order any extra tests (MRIs...Xrays...ultrasounds) unless he sees some symptoms to suggest further investigation. I mean other than the original testing before surgery and chemo.

encyclias

susanella, sometimes it is not the doctor's fault but rather the insurance company doesn't want to pay for the PET scan.  Back when I was first diagnosed in Oct, my MO wanted me to have one but understood the insurance company I had just wouldn't pay for it.  So I paid for it myself, with the imaging center giving me a good discount for self-pay.

All in all, I found a PET scan very useful above and beyond finding cancer in my body.  It told me I had about a 20-year-old 'silent' gallstone that was not causing any problems, diverticulosis in my intestines that were not causing any problems (but not to eat small seeds), and no sign of beginning Alzheimer's in my brain (I am 64 so it is a concern).  I am sure a PET scan can come with all types of potentially useful information for most people.  It was worth the money, and I plan next Oct to have another one; maybe this time my new Medicare will pay most of the bill.

However, they have a disclaimer that a PET scan , like a mammo, may not see very, very small cancers -- whether in your ovaries, or your colon, or even your breast.

kathyrnn

Slv - thanks for that recipe, gonna think about that for during chemo.



Slow - I actually love Lima beans, so that's one I won't mind adding.



Bak - loved the goat story. Not to be worrying, I just watched an episode of Cops, where they went and retrieved a woman's stolen medical plants. You're also way ahead of me. I'm not wasting another day of my life walking, unless it's a group activity with good friends where we'll be shooting the shit and laughing.



JenJen - glad you had a great day! Question please, what is a rash guard?



Stupidb00b - great to see you. *aims positive thoughts at your issues*. Can't help with your question, barely find my way around here.



Dolce - "broccoli and coffee" was a joke from Bak after reading the foods in the Insulin Index



Annie - not to be worrying, it's the only change I'm making. I realized I'm not eating enough veggies, so I found a way to find a way to cram 8 servings into one meal. After my healthy veggie shitty slush, I follow it up with an ice cream sandwich. I have no intentions of ever dieting again!! Also, my "sausage" will be coming from a package. We call them chips over this side of the pond.

Luah

Mumtobe: So glad to hear you're doing well. Enjoy your babe.

Bak94: Very funny story! I take it the cop never noticed the plants!

jenjen: I think I'm like you... I try to balance things out.

Right after my treatment ended, I was big time into all the anti-cancer foods (my family wasn't too impressed with the daily menus, lol), but a few years on now, I've relaxed my habits. I still try to walk/run/cycle 3-5 times a week, weight train, avoid high fat foods, up my veggie and fruit intake. And I happen to love roasted cauliflower, broccoli and brussel sprouts, so I get plenty of cruciferous veggies on a weekly basis. I take a multivitamin, vitamin D3, baby aspirin and curcumin. That's about as far I want to go with supplements. (And I do enjoy a glass of wine with dinner too.)   

Cocker_Spaniel

Ladies for nearly all of my life I have had the same diet.  I eat all veges,  broccoli, spinach, carrots, cabbage, cauliflower silverbeet you name it I have it except maybe brussel sprouts although my husband puts a couple on my plate and I eat them.  I have a little meat and some potatoes or some pasta.  I have never drank wine or beer. I don't drink fizzy pop but I do drink a lot of water.  I don't eat cakes, biscuits, chocolate, lollies, or icecream only on special occasions which is very few.  I'm am quite small and I lose weight easily which is worrying at times.  I have sugar in my coffee (I don't drink tea) but only because its tastes ghastly without it. I consider it a reasonably healthy diet yet I still got cancer.  The thought of eating pulp or juicing does not appeal to me.   If I have a weakness it's cheese which I love but I have cut right down on that because I have high cholesterol.  I really believe this is our lot in life and nothing we can do will change that.  So now I think if you feel like it then have it cause you only live once.           

kathyrnn

Annie - I'm right in the "I'm gonna eat what I damn well and want" boat right along with you girl. My VSS (vegetable shitty slushie) is not something I would even recommend anybody consider. It's my own lazy way of getting 8 servings of vegetables into my body at one one sitting. With the crapshoot this disease is.....I figure with my luck, my shitty little cancer cells are doing a conga dance right now.....because they love veggies! *mumbles under breath...little traitorous piece of shit cells*

GoWithTheFlow

LOLOLOL Kathrynn!

I'm there with you too ladies.  I eat what I want.  Sometimes my body wants fruits and vegetables, sometimes it wants cookies and ice cream.  I eat when I'm hungry, and I don't eat when I'm not.  I do find myself eating healthier than before, but that's what my body wants.  Last week I was "spoken to" by the hospital nutritionist because I lost 6 lbs. in two weeks.  Yea, the steroids from chemo are out of my body, I'm losing the weight I gained during chemo, my swelling is going down from my surgery, who cares?  She can bite me.  I DID explain I could live off my body fat for the next several months.  She didn't find that funny.  

I have found that since chemo, I've continued to eat smaller meals as many times a day as I'm hungry.

Lovelyface

Luah, how do you roast the cauliflower, broccli and brussel sprouts?  I know this is a pretty silly question (dah!), but maybe there is something you put on them that it tastes good???  I have tried to steam them, cook like a curry with tumeric sprinkled on them, but they don't taste good at all.  Roasting?  In the oven?

sweetpickle

Gowiththeflow- LOL you gave me a much needed chuckle today, thank you!

schatzi14

I'm with you girls that eat whatever you please. To me the QOL is far more important than worrying about whether every little thing you put in your mouth is the "wrong" thing.

BC has hit vegans...meat eaters and combinations galore. My motto is...everything in moderation. That's my story and I'm sticking to it

GoWithTheFlow

WOOHOO!!  6 down and 22 to go.  A friend met me at the RO's office and we went for lunch.  Looks like a storm might be coming in now which makes for a great nap, swim practice for my son later.  Have a good day ladies!

Fighter_34

Hi Ladies,

Just checking in all is going well. Nothing major is happening can you believe life is slowing down finally?? So use to being extra busy and now I am trying to learn how to relax.

I too have scaled back with all the vitamins and strict dieting. Just do the best you can do, but don't forget to live as well.

Finances, hey what I bring home every two weeks I enjoy it. Brought a new car a year ago. The dear hubby and I shared cars for years. I finally decided I wanted to be a big girl. I love my car by the way!!! I have my affairs in order I am teaching the kids to make wise decisions when it comes to money, and if they follow that path then all will be well.

OBX, Kathy, LuvRving, and Dawn ((((BIG HUGS))),,,hey hugs to everyone if you need one!!!

InspiredbyDolce

Hi Everyone!

Susanella,

I went to a couple of different Oncologists for opinions, and learned that some offer scans and some don't offer scans unless something warrants it.  You could cross reference the protocol your Oncologist is using with the National Cancer Center Network for Physician Guidelines, which is available to download from the internet.  If you go to download this, the one you want to download is the one titled For Physicians, not the one titled For Patients.  My general understanding is that some Onc's feel that symptoms or labs would be present before a scan might detect anything; or that a scan may not necessarily detect something especially if small; or that the scan might cause undue anxiety with a patient who is otherwise healthy; or that a scan could produce a false positive, leading to more tests and procedures.  While it is hard, I would balance the information that you find with the care and trust that you have with your medical team. However, if you aren't comfortable, and want more clarity, you can try what I call, the path of least resistance.  You might find another doctor on your team who could order the scan, if they felt warranted.  I've had to go through a couple of work arounds myself, and have a physician on my medical team order something for me, when another physician wouldn't. 

Bak, Thanks for explaining the coffee/brocolli breakfast joke to me.  LOL  How did I miss that?  I thought maybe it was a joke, but then I read it, and thought "oh oh, maybe this is something I should try, if they are also doing it."  LOL

Regarding the eating healthy conversation ... I have read on here, more than a few times from women, that said they've eaten healthy their whole life and exercised and still got bc.  I don't know how I would even feel about that.  My Genetic Counselor told me that 11-12% of women, as just being part of the general population will develop bc.  For me, I thought I had eaten healthy, and was always slender.  But, once I realized what healthy eating really was, I realized I was not eating healthy.  Even today, even with all my idiosyncrasies of healthy eating, there is room for improvement. 

For anyone who is using diet and exercise to try and prevent recurrence, I highly recommend it. For me, and my experience of bc, I felt that it was the introduction of something within the previous 2 years that induced this.  Why did I choose the 2 year mark? I don't know frankly, I just felt it was maybe a time in my life when I had a lot of changes in it, on a frequent basis.  Example:  I had started drinking coffee consistently every day, along with Diet Cokes.  So I cut them out cold turkey upon diagnosis.  Speaking of cold turkey, I had eaten a lot of turkey for the couple of years prior, so now I'm careful of limiting that as well meat consumption in general.

When I was going for genetic counseling, the Genetic Counselor said (and I've read this), although not sure I can get the point across in a short post.  That we have to have a minimum number of "incidences" for the cancer to develop.  The incidence (or element) can be environmental, diet, etc ... and that the more of these we have, called 'insults' the higher the likelihood for the cancer to develop.  An incidence isn't one time, it's grouped as a lifestyle.  The GC gave an analogy that it's like a bingo card, and the more items that are checked on it, the more connections towards the bc we have. One square might be labeled diet, another one smoking, another one something else.  I tried to find the link to the site referencing this, but haven't been able to find it.  It's very interesting to read and to click the images to see which factors increase risk ... and then the theory is that each one builds upon the other. I understand in general we can't control what happened, but I like to know what factors I can remove from this card.  I feel it empowers me to make better choices every day.

So for me, in my personal quest to achieve long-term health, I removed any elements that I became suspicious of ... I'm sure some of these are just fears, and some are probably very valid, but it helps me to take control of me.  I even ditched my laptop in favor of a desktop.  Yes, I was concerned that typing next to that each day, with my breast at even level with the laptop could have influenced this.  But I've changed with diet, exercise.  For me, what I could improve upon, I did.  If anyone is looking to make changes and needs help, here is a process to follow:  change starts with desire and a plan, then you must make a committment, then modify and replace existing pattern, and then nurture the new pattern until it becomes a habit.

I also recommend starting small and work your way up.  If you try a radical lifestyle change at once, you might feel deprived and quit on your goal. New habits are hard to form, and while I have them, there are still days when I have to really use a lot of mental power to reach my goals.  For those of you who know the inner struggle I'm talking about, here are some recommendations:  Start small, and add in new changes weekly, until you have modified all of the things that are important to you.  By doing this in small steps, you will receive constant positive reinforcement, which will help keep you motivated towards reaching your next goal.

I also recommend keeping a list on the fridge, even if you are a neat freak like me.  A list just helps you keep your eye on the target.  It doesn't have to be detailed or perfect, just something where you can track your overall goals, or even your small daily goals.  I have a note on my fridge that is replaced each Sunday and goes through Saturday, it's a weekly track of my workouts.  If I didn't have this, I would probably not know when I've started to fall behind on my goal for the week or know when I'm ahead of my goal for the week.  It's like keeping track of your money in the bank, so you always have your finger on the pulse. I've also decided I need one for fat and sugar grams, so new list is now on fridge.  For me, someone who really likes the sweets, it is putting me in control when I can view it regularly.  The smallest things have sugar in them, even the ones that seem simple and sugarfree, like salsa!

Here are two articles I just came across.  The first that says cancer is a preventable disease - I found it interesting as it lists what they have found to be helpful in maintaining health, and the second link is about cancer causes and risk factors.  It's not the link I wanted to share, but one I just came across that looked useful, even with regarding to the debate about cell phones.

Cancer is a Preventable Disease that Requires Major Lifestyle Changes 

Cancer Causes and Risk Factors

Hope everyone's week is off to a great start!

InspiredbyDolce

FighterJet is almost 3 years out, and Luah almost 4 years out, and many others on here.  I think in time, when I reach their milestones, I'll feel more confident about letting up on some of the choices.  For me, it's a slippery slope.  One slight sugar infraction, and the next thing I know I've eaten a whole package of oreo cookies.  For me, while this is at times, consuming, hard work and labor intensive, eating right and working out, it gives me a feeling of control that I don't feel otherwise. 

Luah

Lovely: I cut brussel sprouts in half (and/or break up broccoli and cauliflower into small flowerets), toss with a little oil olive, season with salt, pepper, oregano, then spread it all out on a shallow roasting pan or cookie sheet. Bake at 375-400, stirring once or twice, until tender and browned up, about 20 minutes. I also do this with cut-up squash, sweet potatoes, onions...mix and match, but I find brussel sprouts are particularly good this way, the leaves get crispy. I sometimes splash on a little balsamic vinegar after. 

Another way I did brussel sprouts that my kids liked: Steam whole for 1-2 minutes, rinse with cold water, then slice and stir-fry with olive oil, garlic, onion and a little lean ham for taste (or bacon if you're splurging). Season to taste with salt pepper and curry powder. (Stir in a little half-and-half cream for a treat.)   

kathyrnn

*hugs Fighter tightly*. So glad to hear you're doing well.



Thanks for making me laugh Gowith, "bite me" is becoming a frequent thought in my brain. Luckily my brain-mouth filter is still working, but when I get a chance I'll have to tell you the "dumbass" story. Filter WAS working that day, I just decided it needed to be shut off.

Lainey64

Hi ladies, very interesting discussion re: foods that we eat.  I am on the threshhold of my 5 years out and haven't made too many changes.  Probably the biggest change that I made was going to the gym.  Since I started working out I have felt 100% better mind and body. It has helped with my mood swings and menopause symptoms tremendously!  I always hated exercise (still do actually) but it's not quite as bad now. As for eating, I pretty much eat what I want but the major change I made was in regards to sweets and my sugar consumption.  I used to be a huge sugar junkie.. loved all candy and could polish off a pound of jelly bellies in a day.  I'm at 2 1/2 years now "candy and donut" free.  I am not perfect though and still induldge my weakness for the occasional cupcake or cookie.  Well, maybe more than "occasional" but nowhere near the way I used to be.   After I completed chemo 4 years ago I asked my oncologist what I could do to help prevent recurrence and he said "lowfat diet and Vitamin D".  I faithfully take my 5000 of Vit D each morning and strive to eat lowfat but sometimes the french fry gets the best of me.  I admit I do not eat my 3-5 servings of fruits and veggies a day.  I really need to get better with that!

Lots of hugs to all you Trip Neg gals! 

InspiredbyDolce

Lainey, We LOVE hearing your story!  Congrats on the upcoming 5 years!  ) I'm so happy to hear your news!

How much exercise are you doing?  I currenty do 90 minutes 6 days a week, and average about 60-70 miles total for the week.  I was at a higher level, but it was too much to maintain, left me too wiped out for the day, so I had to go down from 14 miles a day to about 11-12 miles. I had never exercised before this, and at first I would cry all the way to the gym and back, but I had to get my attitude right, and once I did that it became much easier.  I realized it was a blessing, and I had been looking at it as punishment.  I was really emotional when I first started going. Then I realized how the endorphins make me feel, and I accomplish so much more on a daily basis, because I feel happier.

Also, did you find anything to replace the candy and donuts with?  I too, loved my donuts and candy and oreo cookies.  The only thing I have found, courtesy of Titan or Meggy, is the Trader Joe's Cat Cookies.  Very little sugar, and very little fat, and like 15 of those is one serving, so I can sprinkle them out throughout the day with a cup of tea.

I feel it's the sugar and sweets that needs to be even more improved with me.  It's nice to hear from someone who has accomplished that, because it is hard to give those up.  I thought I would have a hard time with Diet Coke and Coffee, as I was totally addicted to those, but it was simple.

Let me know if you have any sweet treat alternatives!

Thank you and congrats on the upcoming 5 years!  )

InspiredbyDolce

Kathrynn, LOL - regarding "filter was working that day" .. that is funny!  

Lainey64

Debra,

Thanks!  Sometimes it's hard to believe that it's almost 5 years since DX because at times it seems so long ago and at others, just yesterday. 

My transition from sugar to non-sugar wasn't easy.  At first I ate alot of Adkins bars and other sugar free candy just to get me through that afternoon hump when my cravings were the worst.  Then I eventually got to the point where chocolate and anything with real sugar in it was grossly sweet.  That was the best part!  Slowly I started adding sugar back into my diet and so it tastes pretty good to me again and I have to keep a close watch on it.  Donuts were my weakness so I have vowed that no matter how much I eat, I will never eat another one of those.  lol  When I do buy cookies I usually opt for shortbread because the sugar is usually pretty low. I think my main motivation for cutting back on the sugar was how lousy it used to make me feel after a binge.  I also knew it wasn't good for my body so that was extra incentive.  Oh and another thing, when I got to the point where anything with sugar in it tasted really bad to me, fruit was super delicious.  Yep, I need to get back to that place!

As for the gym, I joined last October and fortunately there was a good personal trainer on staff. My gym offers very inexpensive personal training sessions so I was able to meet with him 3 days a week for 30 min per session.  He taught me how to safely lift weights and do other strength training, core and some high intensity exercises.  I did that consecutively for about 6 mths until he left and now I've been flying solo.  I find these kind of exercises much more fun rather than spending an hour on the treadmill or staircliimber.  There is also a dance/fitness studio near my house where I do Zumba class on Saturdays.  Unfortunately I was recently diagnosed with lymphedema so I've had to put a halt on my exercise for a week but plan to get back to it starting tonight (so that's the plan..lol).

InspiredbyDolce

I love Zumba!  I thought about becoming a part-time Zumbra instructor at one time ... LOL.  Get paid and get to work out!

Cupcakes and donuts were my favorites as well.  I will have to check into shortbread stuff.

I downloaded this app on my phone, called FOODUCATE.  Does anyone else have this?

It's awesome.  Just scan the label and it grades the Food.  Makes shopping and choices easy at the store.  Some stuff is not as good as you would think, as some of the healthiest looking stuff got a D.  Kashi Bars I think the one I scanned had a C+, but there was a fruit bar that got a B ... at Costco.  They are yummy and 2 come in a package for one serving.  10g of sugar total though, but low in fat.

Lainey64

That app looks so cool!  Downloading it now... thanks!

InspiredbyDolce

Hi Everyone,

I found this website that makes it easy to find trials.  Breast Cancer Trials.

This site is unique in that you complete a questionnaire online, and it will match you to trials based on your circumstances.  For instance, maybe a trial is excluding postmenopausal women, and if you are postmenopausal, than you would not see that trial in your list.  So it gives you trials in which you meet the requirements, which is kind of neat.

So anyways, the other very interesting thing is there are some trials in there regarding diet/exercise, being overweight - all trials for breast cancer.  There was one for reconstruction, and even a couple for positive support - wellness type program.  Another trial and all you had to do was complete a survey by mail.  So interesting.

Oh yeah, you put in the first 3 digits of your zip code and it will give you the trials in the closest location to you first. 

InspiredbyDolce

This is from a post in the Easy Low Fat Foods that can Save a Triple Negative's Life Forum ... also, there was a Trial going on in the list I received for flax seed. 

Here is a news release about a study done at Fox Chase Cancer Center, an NCI center.  Researchers found that omega-3 fatty acids stop or slow the proliferation or growth in the number of cells, especially in triple negative cancers, much more than receptor positive breast cancers, reducing the proliferation by as much as 90%.  This was presented at the AACR (American Association for Cancer Research) last week (4/9/13).  This is special kind of essential fat found in fatty fish or supplements which apparently has different effects than the usual fats we consume.  The total fat in our diets, as the studies show, should still be low.

www.medicalnewstoday.com/artic...

Cocker_Spaniel

This made me laugh!!

ALHusband

I read someplace that Claritin is good for Taxol related bone and joint pain...so I asked the nurse at the Onc's office. The nurse said to take Zyrtek, but to take double the dose on the package. I have seen alot about Claritin, but very little about taking Zyrtek for bone/joint pain. Does anyone have any knowledge experience on this topic? If so, I'd sure appreciate it. If you've used either of these yourself, can you include dosage?

Stupidboob

Good afternoon ladies....................I have good news to tell...........(I think).     Had my Pet Scan yesterday and the doctor called today to tell me that all looked good and the cancer was gone.............YAY. On to radiation.   Here is my dilemma, every test I have ever had they have made me take my prosthetic out and this place did not.   I ask three times because I found this odd...........kicking my own butt for just not taking it out anyways.   Since, my cancer is behind the fake boob do you all think I should be worried that they truly did not see it?   I don't want to worry I want to be happy-happy-happy but now I am not sure.   Every other place said that they could not see through a prosthetic but this place says you can..........what do I believe?   I just did what I was told.   I would think that it would just be a black blob but I don't want them to just say, oh that is her boob and not look beyond.   I am not sure it different machines can see through them while others can not.   I DO NOT was to sound negative, just more worried now.   I was on cloud nine and now I am on a lower one...........:)   Have any of you had a Pet Scan with your boob on?