Calling all TNs

TexasKaren

I've actually taken off 30 pounds !!  Quit all sugar, all caffeine (I was a coffee-holic!), all sodas and carbonated drinks.  No white carbs (bread, etc).  Wasn't as hard as I thought.  I do indulge in one small square of 80% cocao dark chocolate a day....   The benefits of that are good.

Bad news is my chemo isn't working well... headed to Dallas for second opinion and maybe some new protocols.  

Fighter_34

TexasKaren: are you going to Anderson? What was your first chemo?? Are you involved w/ any of the PRAP trials??

EricaH

Hi Ladies -

Anyone interested in starting a thread or something more permanent where we could list our findings on how to survive post treatment?   I think all us TN's worry about being "let loose" after all the chemo and radiation is said and done - I know I do.

What I want is for someone to hand me a very specific, comprehensive list of what to eat, what supplements to take, how much to exercise, ideal weight, recommendations for fasting or detoxing.  Dream on - of course no such thing exists for us! 

Maybe we could have a place to post information we have found on this subject?

lrr4993

Hi Erica - I think there is already a thread along those lines somewhere in this forum.  It pops back up to the top every month or so.  It titled something like "Lowering Risk of Recurrence."  You may want to scroll through a page or two and see if that is what you were thinking.  But of course feel free to start a new one!

EricaH

Yes, I bumped that one a little while ago - maybe we could just add to it. 

Kymn

texas karen I am so sorry to hear that. I wrote down some studies that are being done for us TN girls buts its at home when I get home I will look it up for you. Im at work now but check back tonight.

TifJ

Erica- Does your cancer center have a "cancer dietician on staff? I saw one a couple of weeks after my last chemo. She went over my current diet with me and gave me some suggestions to help me follow a low fat diet which is supposed to be good for TN. Her big no-nos were red meat (okay occasionally) and artificial sweetener. It was free of charge through my center.

Kymn

TIFJ really no artificial sweetner oh dear I always use splenda in my coffee. and I thought protien was a good thing oh oh .

also wanted to let you laides know I found a website for us TN sisters it not as chatty as ours and fun lol but it does have a lot of info its tnbcfoundation.org if any of you are interested in checking out some of the information on there.

have a great night ladies

dawn31337

I thought the TNBC site was kinda negative.  I only read happy posts.  Suggestion is a powerful thing.

jenn3

Michelle - I'm sorry to hear that the SE's are giving you a hard time.  Chemo is cumalitive and some of the SE's can linger or become worse over time, but remember we all react differently. One thing that you will notice is a pattern of your good and bad days, which will allow you make plans for both the good and bad days.  Be kind to yourself, drink plenty of water and if you can take a walk.

TexasKaren - I've just been dx'd with mets.  I am curious what chemo were you on?

EricaH

Kymn - Thank you for that link!   The more info the better, IMHO.   This is the THIRD time I've had breast cancer.  The first time was 18 years ago (lobular carcinoma) - the second occurrence (triple negative) was a result of the radiation I received 18 years ago.  I has a mastectomy in 2008 but a local recurrence at the end of last year. 

I'd really just like to stop having to do all this...

xx

lrr4993

Wow, Erica - three times.  I cannot imagine going through all of this more than once.

Random question for anyone who knows - what is a good cream or other treatment to fade a scar?

My lumpectomy scar looks great.  It is almost invisible now.  Weirdly enough, radiation seemed to do wonders for it.  Probably the darkening of my skin is making it blend in better.

My lymph node scar is another story.  It is ugly and brown.  It never did seem to want to heal as well as the other incision.  I want to do something to make it fade some. 

dawn31337

Aquaphor is good for scars.  It is what you use after getting a tattoo.  My PS agreed, and she also said basically any cream is good, and things like Mederma is expensive and not any better than Aquaphor.

lrr4993

Thanks Dawn.  Can you buy that at a drugstore?

Sugar77

lrr4993 - lol...radiation helped my scar fade (...or at least blend), too.  It also helped camouflage the blue blue dye from the sentinel node biopsy that was very visible before rads.

I hope everyone's having a good night.  Just finished watching House and they had thought Cuddy had metasticized kidney cancer on the episode.  Turns out she was okay but it really made me sad watching it.  I guess I'm more sensitive these days! 

LRM216

Very promising article for us - and apparently more attention is finally coming our way re treatment/recurrence. 

http://chronicle.augusta.com/news/metro/2011-03-08/new-gene-techniques-promising

jenn3

LRM - thanks for sharing

gillyone

Sugar - I watched House too. Did not like the dream sequences - way too odd. Getting to the point where House is not fun any more.

Fighter_34

Erica you brought up a valid point radiation causes cancer that why I refuse to do radiation. I know from first hand experience as well.

Why, because radiation isn't a perfect science. Rays escape from the target point thus causing damage to healthy surrounding tissue. A never ending cycle.

My advice once your are deemed heallthy again fight to stay that way. If that means going an alt route then did just that.

Teka

Fighter_34,

I over looked that you refused to do radiation.    Was your decision based on something you read on a BC board?

MBJ

Michelle:  So glad that you checked in to let us all know how you are doing.  Like Heidi, my first chemo was the worse, the rest were much easier except that I had an alergic reaction to my final Taxotere (I had 6 x TC).  I had the metallic taste and Rebecca Katz has some great tips in her cookbooks (Amazon.com) about how to make food taste better on chemo.  Cutting it down to the basics she recommends either adding salt, sweet (Agave or Maple Syrup) or citrus to add flavor and to overcome the metalic taste.  Many of her recipes are also on line--just Google her name.  I hope the remaining chemo is much easier with the side effects.  If they are giving you Neulasta, ask for the shots in your stomach are or where you have the most fat as they say the SE's can be less this way.  Hugs!

Kymn:  I will reference Rebecca Katz' cookbooks again in regards to meat.  What she recommends during chemo is if you are going to have meat, organic is of course the best as there are less additives in the meat, but she also recommends roasting or cooking in a crockpot.  The idea is tha you want to really cook the meat so that it falls off the bone (even if there isn't a bone) so it is easier to digest.  Your body is having a difficult time processing all of the chemo and this way your body is getting almost pre-digested meat.  So avoid hard to digest steaks and burgers and stick to pot roasts, and similar cooking techniques like soups.  I hope this helps!

dawn31337

Lrr4993 - yes you can get Aquaphor at any drugstore.  Look in the lotions/creams section.

I sure hope people aren't making medical decisions based on something read on these boards. Hopefully everyone is getting information about that from actual medical professionals, and not lay people here.  Yes we have or had the disease, and we have our own experiences which are generously shared.  But one or some people's experiences does not a doctor make.

MBJ

Irr:  There is a great thread regarding scars and the treatment of them on this site called "Skin S.O.S. Scar Remedies:.

MBJ

Erica:  There is an existing thread on this although it isn't very active: 

Pinned Thread About How to Lower Recurrence after Chemo

MBJ

Titan:  I have an entire bag of pills that I take--half of them without food and half of them with.  It's a cereal bowl ful by the end of the day, lol!

MBJ

Cancer Update from Johns Hopkins: 

1. Every person has cancer cells in the body. These cancer cells do not show up in the standard tests until they have multiplied to a few billion. When doctors tell cancer patients that there are no more cancer cells in their bodies after treatment, it just means the tests are unable to detect the cancer cells because they have not reached the detectable size. 

2. Cancer cells occur between 6 to more than 10 times in a person's lifetime. 

3. When the person's immune system is strong the cancer 
  cells will be destroyed and prevented from multiplying and
  forming tumors. 

4. When a person has cancer it indicates the person has
  nutritional deficiencies. These could be due to genetic,
  but also to environmental, food and lifestyle factors. 

5. To overcome the multiple nutritional deficiencies, changing diet to eat more adequately and healthy, 4-5 times/day and by including supplements will strengthen the immune system. 

6. Chemotherapy involves poisoning the rapidly-growing
  cancer cells and also destroys rapidly-growing healthy cells in the bone marrow, gastrointestinal tract etc, and can cause organ damage, like liver, kidneys, heart, lungs etc. 

7.. Radiation while destroying cancer cells also burns, scars and damages healthy cells, tissues and organs. 

8. Initial treatment with chemotherapy and radiation will often reduce tumor size. However prolonged use of
  chemotherapy and radiation do not result in more tumor
  destruction. 

9. When the body has too much toxic burden from
  chemotherapy and radiation the immune system is either
  compromised or destroyed, hence the person can succumb to various kinds of infections and complications. 

10. Chemotherapy and radiation can cause cancer cells to
    mutate and become resistant and difficult to destroy.
    Surgery can also cause cancer cells to spread to other
    sites.

11. An effective way to battle cancer is to starve the cancer
    cells by not feeding it with the foods it needs to multiply. 

*CANCER CELLS FEED ON: 

a. Sugar substitutes like NutraSweet, Equal, Spoonful, etc are made with Aspartame and it is harmful. A better natural substitute would be Manuka honey or molasses, but only in very small amounts. Table salt has a chemical added to make it white in color. Better alternative is Bragg's aminos or sea salt. 

b. Milk causes the body to produce mucus, especially in the gastro-intestinal tract. Cancer feeds on mucus. By cutting off milk and substituting with unsweetened soy milk cancer cells are being starved. 

c. Cancer cells thrive in an acid environment. A meat-based diet is acidic and it is best to eat fish, and a little other meat like chicken. Meat also contains livestock antibiotics, growth hormones and parasites, which are all harmful, especially to people with cancer. 

 d. A diet made of 80% fresh vegetables and juice, whole
  grains, seeds, nuts and a little fruits help put the body into
  an alkaline environment. About 20% can be from cooked
  food including beans. Fresh vegetable juices provide live
  enzymes that are easily absorbed and reach down to
  cellular levels within 15 minutes to nourish and enhance
  growth of healthy cells. To obtain live enzymes for building healthy cells try and drink fresh vegetable juice (most vegetables including be an sprouts) and eat some raw vegetables 2 or 3 times a day. Enzymes are destroyed at temperatures of 104° F (40°C).

e. Avoid coffee, tea, and chocolate, which have high
  caffeine. Green tea is a better alternative and has cancer
  fighting properties. Water - best to drink purified water, or
  filtered, to avoid known toxins and heavy metals in tap
  water. Distilled water is acidic, avoid it. 

12. Meat protein is difficult to digest and requires a lot of
    digestive enzymes. Undigested meat remaining in the
    intestines becomes putrefied and leads to more toxic
    buildup. 

13. Cancer cell walls have a tough protein covering. By
    refraining from or eating less meat it frees more enzymes to attack the protein walls of cancer cells and allows the body's killer cells to destroy the cancer cells. 

14. Some supplements build up the immune system
    (IP6, Flor-ssence, Essiac, anti-oxidants, vitamins, minerals, EFAs etc.) to enable the bodies own killer cells to destroy cancer cells. Other supplements like vitamin E are known to cause apoptosis, or programmed cell death, the body's normal method of disposing of damaged, unwanted, or unneeded cells. 

15. Cancer is a disease of the mind, body, and spirit.
    A proactive and positive spirit will help the cancer warrior be a survivor. Anger, un-forgiveness and bitterness put the body into a stressful and acidic environment. Learn to have a loving and forgiving spirit. Learn to relax and enjoy life. 

16. Cancer cells cannot thrive in an oxygenated environment. Exercising daily, and deep breathing help to get more oxygen down to the cellular level. Oxygen  therapy is another means employed to destroy cancer cells. 

1. No plastic containers in microwave ovens. 

2. No water bottles in freezer. 

3. No plastic wrap in microwave. 

Johns Hopkins has recently sent this out in its newsletters. This information is being circulated at Walter Reed Army Medical Center as well. Dioxin chemicals cause cancer, especially breast cancer. Dioxins are highly poisonous to the cells of our bodies. Don't freeze your plastic bottles with water in them as this releases dioxins from the plastic. Recently, Dr Edward Fujimoto, Wellness Program Manager at Castle Hospital, was on a TV program to explain this health hazard. He talked about dioxins and how bad they are for us. He said that we should not be heating our food in the microwave using plastic containers. This especially applies to foods that contain fat He said that the combination of fat, high heat, and plastics releases dioxin into the food and ultimately into the cells of the body. Instead, he recommends using glass, such as Corning Ware, Pyrex or ceramic containers for heating food. You get the same results, only without the dioxin. So such things as TV dinners, instant ramen and soups, etc., should be removed from the container and heated in something else. Paper isn't bad but you don't know what is in the paper. It's just safer to use tempered glass, Corning Ware, etc. He reminded us that a while ago some of the fast food restaurants moved away from the foam containers to paper The dioxin problem is one of the reasons. 
Please share this with your whole email list......................... 
Also, he pointed out that plastic wrap, such as Saran, is just as dangerous when placed over foods to be cooked in the microwave. As the food is nuked, the high heat causes poisonous toxins to actually melt out of the plastic wrap and drip into the food. Cover food with a paper towel instead. 

EricaH

MBJ - Thank you for posting this info! 

Fighter_34

Teka: I was given radiation at a young age mantle to be exact and one of side effects of radiation is cancer. Chemo does as well, however the rate at which radiation causes cancer is higher. Ususally btwn a 10 to 15 year window.

Teka

A history of radiation treatment, would put a different spin on having BC radiation treatment.   Thank you for replying.

beccad

Hello everyone, I am home from the hospital. My surgery went well and I stayed overnight. The BS and PS both seemed to be pleased with my recovery. I have my DH and Mom here to help I hope everyone is doing ok today. I will be going to see the PS's nurse next monday and probably have 1 or 2 drains removed then. I will see the BS on Tues or Wed, for a followup w/ her and then see the PS on theus. to start fills on the TEs. I am a little sore today, but that is to be expected.
Beccad