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  • RedReading
    RedReading Member Posts: 2,143
    edited March 2014

    Hi June. I tried to write a post on the alternative therapies forum when I saw you in the B17 lounge. But my computer made it go bye bye and I had to restore. I'm okay. Rads is going terribly and I've cried a lot. Sorry but you asked. I'm on half days at work now and next Wednesday I'm off completely for a couple weeks.

    How are you doing? Where are you in your treatments? What alternative therapies are you using and what conventional ones. How do you feel?

    Have you heard from Pipers at all? I talk to jodi sometimes on Facebook, are you on fb?

    Anyway, hope all is going well and please let me know how you are doing.

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    hi red - oh sorry to hear about the rad...why are you crying a lot? it causes depression? or you have some physical pain? i hope you feel better soon. how many more weeks to go?

    i've seen piper at the alternative thread..and she seemed to be doing well. hope she'll drop by. i am on fb...and i also liked jodi's fb as well. she's almost done with chemo from what i read. may be we can friend each other there.

    i am doing tamoxifen and the SE is kicking in, lots of vivid dreams and some mild to moderate night sweats. sleep quality is def affected. meeting my integrative doc tomorrow and will see how he access my health vs my treatment. i want to see if my supplements conflict with the tamoxifen.

    i am on disability and it really affects my finance. the checks didn't come on time except the first one. and they only gave me three weeks. so i am dipping into my saving. but i need some rest. going back to work on the 17th...can't afford to stay home no more. 

    so i would recommend you to look into any form of short term disability if your work provides. so you can rest and heal and not have to worry or stress about work. we have BC and we deserve to that some time off to rest and heal and clear our mind at the same time.

  • RedReading
    RedReading Member Posts: 2,143
    edited March 2014

    Hi June I sent you two big long notes, one here and one on Alternative therapies, but I think the scheduled maintenance made them go away or something. 

    Anyway. My rads are going poorly. I'm taking my DH and DD with me Monday. Maybe they can get something other than, o we do this for everybody, cuz I've asked everybody and they don't! Mine get stopped after multiple xrays and adjustments. They finally just give up.

    Bah, I'm whining now, need some cheese and crackers with that! Lol.

    Sorry about the finances. I'm starting to cash in canada's version of 401k's just to pay the mortgage. So I hear you girlfriend. 

    Wish the 4 of us could meet. If someone lived in the middle, maybe they'd host. I'd fly in for that even if it cost me more mortgage money. Ahh, I'm just depressed a bit, font mind me. 

    Hope you have a lovely weekend!

  • pipers_dream
    pipers_dream Member Posts: 618
    edited March 2014

    I'm here.  Red I'm so sorry to hear how lousy the rads experience is.  Yuck.  I'll get back with you with some complementary therapies for it, but I've heard nettles will help.  Yes I see June a lot on alternatives--she's as into this stuff as I am.  The huge disadvantage of alt med is that it can be really scary and leave you wondering if you're doing the right thing.  I found out my mercury and lead levels are sky high though.  I see Jodi on facebook and she has a neat page.  

    I love the idea of a meetup--I live in Missouri in a house too big for just little old me and if you guys want to do that  it's on offer.  

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    sorry i need to rant - what's wrong with the message board today...i kept getting the error pages everytime i posted????ughhhhh...

    piper - that sounds like a plan...i will visit you when my finance is back in order. ugh...so many medical bills piled up....

    your natural doc is pretty good, the more i read about alt med the more i think he's a very thorough doc...i am so glad you've found him. one thing i really hate meeting conventional doc, they all gave me that look - aren't your scared, are you sure?? look. sigh. it made me doubt myself and i also felt angry at the same time. do i really need to lose all my hair, bed rested for 5 months to prove that i did my best to survive??!! ugh....sorry i need to rant. i am not gonna lie, i want to go all natural but bc doc Wong (my alt doc) said i needed tamoxifen so i am doing the complementary way. i don't know. i know for sure i won't do it more than 5 years.

    red - oh sorry about the mortgage...cancer really sucks big time. 

    it's a good idea bringing your DH and DD to the treatment and see what they think, especially your DD is a nurse, so hopefully she'll be of great help. are you doing anything fun this weekend? it's nice to have a family to spend time with. i spent the weekend with my ex and we had a good time. now i am all alone...i am a little sad.

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited March 2014

    I have missed so much!!  My menu never told me there were new post here:(. Going to go back and read now to catch up!  Sorry y'all!  I thought nobody had posted in weeks!!

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited March 2014

    ok!  Here are some things I read that I have been thinking about too the last month.  How funny that we were all looking into diet so deep!

    Flax!  I am a bad eater.  I know this has to change.  I have been doing better!  I bought Kashi bars, cookies and cereal to start.  Baby steps:). When you know every fast food menu by heart it is baby steps!  Flax is one of the main ingredients in the cookies.  I eat one a day:). 

    Soy- verdict still out on this one.  Some say yes and some say no:(. I had just become a big edamame fan the last 5 years.  Oh well!  I thought that was fine, but I guess eating them as my meal was not.  Moderation is not my friend.  You should see me around chocolate!

    Alcohol- here is one that I have given up.  Well, until football season most likely. Dr says one drink for women.  I haven't had one since this started- miracle considering the stress.  And, to be completely honest I was a smoker too.  So, the two went hand and hand.  If one went, the other had to go too.  I had no problems with it though!  That was a blessing.  

    I have finished my Taxol chemos (12).  Did great!  Not big SE's except a little tired  Sometimes, hair loss, and weight gain.  The weight I believe is a combo of the steroids and not working.  I weighed 92 before, so not 102 which sounds like a better fighting weight.  Remember I am almost 5 feet so don't panic on me about that weight.  Lol!

    I get an ultrasound Wednesday that will tell me if taxol helped that internal lymph node.  please!!  I am getting into the big bad chemo this week!  FAC. But, only 4 more to go.  Rads- yep and probably 6 weeks.  My cancer was quite mean.  But I am here!!

    I went to the nutritionist at MDA and she was no help!  Basically told me everything I knew.  I wanted her to say eat this and not that, but they just don 't know.  Annoying!  One thing she did say was no deli meat unless Boar's Head or this new Hormel that has no additives and preservatives in it.  MDA only serves Boar's Head because of that.  No wonder it was always so good and cost more!  

    So happy to catch up and sorry my main menu didn't mark this page!!  So annoyed that I missed out on weeks:(. Glad everyone is doing well.  

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    jodi

    nice to hear from you! 

    personally i love hoar's feet dish...it provides collegian and my friend said i was nut.SillyHeart

    i read that soy should be consumed fermented...edamame is good.

    my integrative doc told me to exercise everyday....it's tough for a couch potato like me. i do it first thing in the morning, it helps me to stretch my stiff arm. my onc told me i have to stretch it for the rest of my life....geeze..cancer sux...

    pls come back more often. we miss you. (((hugs)))

  • RedReading
    RedReading Member Posts: 2,143
    edited March 2014

    Hi Jodi, June and Pipers. 

    OK, my dietitian said if you've been eating soy for many years, you are probably fine. Like the Chinese, who ate it from birth. However, she also said, if you haven't don't start now. Same with flax. I was actually pretty happy with that because it made sense to me. The Chinese study is quite biased because they have eaten these foods forever. Maybe we should start our babies on some of these foods - I don't know. 

    Some of the stuff she said became instant crap to me tho. 7 portions of veggies/fruit, 7 portions of cereal/bread, 3 portions of milk/cheese/yogurt and 2 portions of meat/peanuts/eggs.

    I'm not a huge eater, but I am 5'10" and 170. I will no doubt eat 3-4 portions of veggies/fruit, 0-1 portions of cereal /bread, 5 portions of milk/cheese/yogurt and 4-5 portions of meat/peanuts/eggs per day.

    I honestly don't know how to switch this up. I believe in milk, yogurt and cheese. I do NOT believe in cereals and grains, although rice and occasionally pasta is okay. And I LOVE meat, eggs and nuts. So her diet is brutal. 

    Anybody got a better take on this? 

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    how do you do the portion? 

    And I have no idea about servings as well. How do you count?

  • RedReading
    RedReading Member Posts: 2,143
    edited March 2014

    About 4 ozs

    But it depends on age. How old are you?


  • Jodi040812
    Jodi040812 Member Posts: 383
    edited March 2014

    mine said 8 oz of meat a week!  A week!  Can't imagine how much I was regularly eating!  

    June- I hear you about the arm!  I have started having very slight Lymphedema.  I have PT and a compression sleeve.  Although- the sleeve I think is too big:(. Going to call tomorrow to see if they can check it.  I end up with lines or raise hills because it is gathering.  

    I am game to try anything that will keep this from coming back.  The reoccurance  issue has me worried the most.  My biggest fear.  Gotta get well and never again so I can raise my girls!!  Lulu will be 15 months tomorrow!  Nice to think about next year at this time!  Should be over hopefully with just check ups.  This is bigger than what they say on tv and all.  Give it a pretty color like pink but it is really a black monster for sure.  Proud of y'all!  You sound great!!  So glad I scrolled through the boards last night and saw a recent post!!

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    red - thanks and i am 41

    jodi - i am trying to avoid LE....

    the diet thing is very simple and confusing at the same time. i thought they said low carb but grain is carb right? and small portion of meat that i could understand. i eat meat, like meat but i don't eat much so that's okay. but 8oz...a week???  my sister just suggested me to buy ground meat, so i could really watch how much meat i consume. 

    she calls me everyday and her daughter just went to college....lol...

    yes, we need to be hopeful....Nerdy

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    red - i am reading very careful about your recommended diet..

    Some of the stuff she said became instant crap to me tho. 7 portions
    of veggies/fruit, 7 portions of cereal/bread, 3 portions of
    milk/cheese/yogurt and 2 portions of meat/peanuts/eggs.

    i thought the portion of starch is on the high side...i thought we need to eat less carb?? 7 portions is quite a lot. and 7 portions of veggi is also a lot. i don't think i eat enough...i eat veggi at lunch and dinner already but may be not 14oz...

  • RedReading
    RedReading Member Posts: 2,143
    edited March 2014

    True but consider a stir-fry. Easy to do 2 portions of rice, 2 portions of veggies and one portion of meat. Add a glass of milk and that's 2 portions of dairy. Having a salad with it (just a small one) another 2 portions of veggies. Dessert? 1 nice sized scoop of ice cream? Another dairy. If you are 55-60 and female, you just maxed out on dairy for the day. 

    If you had 2 poached eggs and toast for breakfast with OJ, you just went over on meat products 

    Yogurt for a snack? With fruit? Healthy right? You just went over on dairy but so far you're only up to 5 veggies/fruits and 3 cereal/starchy things.

    I just can't eat that much. On the other hand have a couple of beers or liquor and the starchy stuff is no problem. Lol.

    I can't put my finger on why it seems so wrong to me. But like all wisdom, I will pick and choose. There are gems of wisdom everywhere, so I will take the couple gems from this, and read more.



  • pipers_dream
    pipers_dream Member Posts: 618
    edited March 2014

    Jodi, glad to see you back and that you've still got your fighting spirit!  

    June, the exercise gets easier and even fun.  I love jumping on my rebounder.  I get my new bellicon in a couple of weeks and I'm excited.  I mean, the cheap walmart one is fun but this will be a blast.

    Red, your ideas for diet make a lot more sense than your nutritionist's.  However, my doc told me to lay off peanuts till the cancer is gone.  I'd heard no peanuts before, and in my case I have a slight food sensitivity but many people do w/o knowing it.  I certainly never had any symptoms but I'm taking his advice and have been eating almond butter instead, which I like a lot better anyway, though almonds are not one of my favorite nuts.  Almonds have cancer fighting compounds too, but peanuts are often contaminated with aflatoxins, which are highly carcinogenic though if you buy the better brands you're better off that way.  

    I've lost 20 lbs girls!  That right there is making me feel fantastic.  Just 35 more to go, though I'd settle for 20.  

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    okay...this is my today's diet....first time seeing it in numbers...interesting

    (6) servings of veggi/fruit

    (4.5) servings of dairy + egg

    (1.5) meat

    (2) grains/starch

    total 14 servings....i've always love drinking milk.

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    piper - i love almond butter...i used to put it on banana but i stopped eating banana too much sugar. 

    i just ordered some APRICOT KERNEL BUTTER wonder what it tastes like...

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited March 2014

    Red- I agree with you!   No way to eat all that food.  I eat too many carbs which turn to sugar and promote ER I know:(. I will have to eat a salad for lunch everyday to get veggies in more.  At least it is better than before!

    Nutritionist told me to really try organic as much as possible and rainbow on the plate.  Not to worry so much about the exact portions, but eat colors.  And brown/white is the color to eat a little of meaning bread, pasta etc.  She did say eat legumes and beans.  I need to get in that!  I like Lima beans and lots of other beans.  If you find a good book resource please share. I am NOT EVEN attempting to pretend I know what I am doing here.  But, I have made changes and my husband is proud of me for that.  

    I still think my BC was due to pregnancies.  I never had a regular cycle.  Anytime I took birth control in the past, I would get off of it quickly because the estrogen was too much.  Like all the way back in early twenties!!  The doctors believe it started 8-10 years ago with me.  Hmmm- yep!  First pregnancy!  And, I had three tumors: one for each daughter and they were 2.5 cm, 1.8 cm and .8cm .  The smallest was Situ. Hoping no estrogen with hormone blockers with help no reoccurance.   I read on another board here that someone's grandmother had BC 21 years ago.  She is 82 and has been on tamoxifen the whole time.  Doctor said keep taking it because she is doing great.  I wonder if it really works like that why do people take it for 5 years?  SE's from long term use??  

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    jodi

    10 years of tamoxifen is the standard protocol nowadays. it used to be 5 years but not it's 10. but i've read tamoxifen taken more than 5 years will have some serious side effects. but there's always someone who has better/worse luck in the bunch.

    i was reading a book, written by a hormone specialist and breast specialist. it says getting pregnant produce this powerful good hormone that prevent cancer. so i don't know. but i am curious to know if you were under some drastic events 7-10 years ago? both piper and i went thru some dark time. i am just being curious here.

    yes, def go organic. and get rid of plastic in your life as much as possible. if you have filter at home, use your own non plaster bottle, don't buy bottled water which is municipal water non-filtered. try coconut oil/butter to cook, it's a natural hormone blocker, healthy for the whole family. 

    try ewg.org   it's like my survival guides now.

    i am home resting so i did a lot of reading and watched a lot of documentaries. feel free to ask me this week. going back to work on the 17th.

  • RedReading
    RedReading Member Posts: 2,143
    edited March 2014

    June, according to the list, for someone your age (and Jodi's) it's:

    7-8 veggies and fruits (and potatoes count as veggies not starch) and includes juices - 1 portion is 1/2 cup of everything except dried apricots 1/4 cup and raw greens 1 cup

    6-7 grains this is 1/2 cup rice, pasta quinoa, cous cous, 1/2 bagel, 1 Oz cold cereal, 3/4 cup hot cereal, 2 pita triangles or flatbreads

    2 milk or alternatives. This is 1 cup milk, 1/2 cup canned milk, 1 cup fortified soy beverage, 3/4 cup yogurt or Kefir, 1 1/2 Oz cheese 

    2 meats and alternatives. This is.     2 1/2 Oz of cooked fish, shellfish, poultry or lean meat.1/4 cup cooked legumes (beans), 3/4 cup tofu, 2 eggs, 2 tbsp peanut butter, 1/4 cup nuts or seeds (like flax)

    Oils and fats - 2-3 tbsp daily. Unsaturated. Use canola, olive and soybean. Use soft margarine that is low in saturated and transfer fats. Limit butter, hard margarine, lard and shortening.

    For Pipers, same stuff just the amounts are different -same as mine. 

    OK that took forever. Nite nite.

    Hugs'n'kisses 

    Deb

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    red - woo...thanks!!! now at least i can have some kind of guideline to follow.

    i wanted to add vegetable oil with low melting point can be carcinogen, use cold pressed extra virgin oil or coconut butter/oil. when you stir fry or sautee, make sure the fire is not too high, when you put the oil in and it's smoking means it's too hot. 

    soy is best consumed fermented (i am chinese...like soy sauce, tofu..).   margarine is highly processed food...better to skip it. 

    good nite!!

  • RedReading
    RedReading Member Posts: 2,143
    edited March 2014

    June we have a margarine up here that is called Becel. Do you have that in the states? It's the one that is most recommended. Even tho I love butter and it is pretty natural, it's high in fats that just aren't good for anyone. I still eat it, but I trade it off against other good stuff. I guess it's all a balancing act.

    I'm going to make an appt with the dietary specialist for people with bc. It'll be interesting to see what she has to say.

    Nite nite

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    red - i don't know but i just googled it...and it's low in fat. do you use it for spreading the bread?

    there was no low fat, fat free stuff back 100-200 years ago and ppl didn't have high cholesterol or cancer...and those hunter gathers were mainly eating meat and they sure weren't fat. i don't think it's the fat that harm us, it's the processed food.

    i would love to hear what your dietitian says....they always intrigue me.

    sorry...hope i didn't get on your nerves....

  • RedReading
    RedReading Member Posts: 2,143
    edited March 2014

    No not at all June. I'm still trying to learn, and like I said at the outset, something about this diet doesn't sit exactly right with me. A lot of it is really common sense but some of it seems excessive. I don't believe in eating a lot of grains, for example, so 7 servings a day is brutal. I like meat and eggs so the 2 servings they allow just isn't enough.

    Anyway, if we all keep learning and sharing, I think it can only be a good thing.

    Pleasant dreams.

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    i like meat and egg, dairy too...

    i eat an egg for breakfast and some meat (1.5 portion) for dinner/lunch. just had my first lamb shank....it was quite big when it's raw, it shrank significantly when it's done. 

    red - how did it go today??

  • RedReading
    RedReading Member Posts: 2,143
    edited March 2014

    Well, June they seem to have straightened out the problems with my rads. The last couple have only been for 10-15 mins. Yay!! AND I am now finished full breast rads!!! I only have 4 boosts to go and I'm completely done. Feels kind of funny. My next appointment isn't until May.  Wow.

    Having troubles keeping to the stupid diet. It is way too much food for me. I'm not a big eater, even though I weight between 160-170 depending on the day. I'm 5'9" though so I don't look fat or anything. Just kind of normal sized. Big feet though! Size 10. lol. My DH says I should just wear the box the shoes come in.

    Jodi, I'm on Tamoxifen. Started right away in January, as soon as I  got my oncotype. I'm a 28 so they needed to do something right away. Tamoxifen reduced my chances of recurrence to 14%, so I went for it. I am in the middle of menopause tho, so I am only going to be on it for 2 1/2 or 3 years, then they are moving me over to an AI. They figure I'll be completely done menopause by then. I know a lady who was on Tami for 20+ years. She was monitored and it was working for her, so they never did move her over to an AI. She's fine and in her late 70's now.

    Pipers, hi there girl. I've seen you on a couple of the alternative sites when I was doing research. June too. I actually wrote you a big long post on one, but the post gremlins made it go away when I hit submit. I didn't have the energy to retype it, so I just went to bed. Are your dental issues all fixed up now? I'm just staying away from nuts in general, but I seem to have developed a craving for gummy bears. Just a few each day and I'm quite satisfied. I have always tried to listen to my body - in reality this is the first time it has failed me. Not saying nothing ever goes wrong, I've had my share of oopsies, but never something that I couldn't control. So I'm eating toward no recurrences or new tumors. Trying to be healthy, listening to what my body says I need. If I find I am eating bananas a lot, I need more potassium, more meat, protein, etc. Beer - must need more B12. lol

    Hugs'n'kisses to all of you.

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited March 2014

    red- any special lotion or advice for rads? I'll be there in 12 weeks! 9 more weeks of chemo.  Counting down;)

  • RedReading
    RedReading Member Posts: 2,143
    edited March 2014

    Jodi, I am using something called Glaxal Base. It is the basis for all RX cream medications. It seems to be working well for me. It is non prescription but you'll need to find out what your equivalent in the states is.

    BUT, I  think the thing that is working the best is Epsom salts in my jacuzzi. If you don't have a jacuzzi, you can modify your tub for about $50. They sell em at Walmart. I am going thru a bag of salts every three days. Two baths each day with 1 cup of Epson salts in each. It eases the itch and makes my poor breast area feel good and soft and normal.

    I have had 16 accelerated breast radiations. More rads less time. And I am burnt, but I'm a redhead so I kind of expected that. I'm ok tho. I don't hurt except in my armpit, so I think whatever I'm doing is working. 

    Good luck babygirl! You got this!!!!

  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    red - lol @ the shoe box joke by your hubby. and YAY on finished the rad tx.

    i would just eat your normal portion, no need to stuff yourself like that. we are supposed to eat 70% full, per my integrative doc.

    oh i also had that happened to me, typed up my nice long post and poof, gone. ugh....sometimes i copy my post before posting in case it happens again...haha. i am such a nerd sometimes...

    jodi - cheering for you....it's almost done. 3 more to go, correct??

    piper - (((waving)))....

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