Now stage IV

[Angela]

I have just found out that my stage IIb is now stage IV. After 3 years of NED, it is in my lung and may be in my bones. It is still Her2 +3 which is good because now they can give me herceptin. I am still in shock and could use some advice. I guess I am going through the blame stage. How many of you follow a special diet? I have spent a lot of time thinking about this. I have read that fat caused this, sugar caused this, lack of fiber, etc. If that is true and my sisters and I all eat the same way then why don't they have cancer? (not that I want them to have cancer). Does changing your diet truly help prevent the cancer from returning? Does eating differently help make the cancer go away? Any words of wisdom would be greatly appreciated.

Sad and Confused,
Angela

[Tom]

Dear Angela,

I only have a few minutes to respond, as my back injury will not allow me to sit for very long. There are many many posts on this site about diet and supplementation helpful to HER2+ BC patients. Please search for and read anythying written by R.B. He is a relentless proponent of fatty acid management, and I have come to agree with him whole heartedly on his theories, as many have been born out through recent research.

Also read about the Greek Diet, and browse the thread that was started some time ago that details the many diet and supplementation regimens of the women on this site. You will see a patern of items developing. I will list a few of them that you may Google search. Simply type the name of the item+HER2, and you will find a wealth of information. Many of the items have been found to down-regulate the overexpression of HER2 in your body. That alone will helps a great deal in the treatment of your disease. Also read a posted article under Articles of Interest, by Heblaj. It concerns the supplement curcumin. Here is a quick run down of helpful items.

Curcumin, green tea and green tea extracts, olive oil, pomegranate juice, fish oil suplements, flaxseed and flaxseed oil, vitamin D-3, oil of evening primrose, folic acid, cruciferous vegetable extract, indole3-carbinol, alpha tocophyerol succinate, blueberries and blueberry juice, dark sweet cherries, inositol hexaphosphate.

Of course, your oncologist will discuss ibandronate and other similar drugs known as bisphosphonates for treamtent of your bone metastases. Remember that you wiol no doubt have both Herceptin and Tykerb available at some point as well. The grim reaper is not always as close as he seems, but until they can cut off his head and put it on a stick, it never hurts to use as many tools as you can to fight.

And as far as your current diet is concerned, I would try to eliminate red meat, and lower your fat intake to 20% or lower of your total caloric intake. That alone is a good start. Take care.

Sincerely,
Tom

[tricia keegan]

Angela I don't have any advice to offer you but wanted to tell you I'm sorry to hear this bad news.
My friend has had bone mets for three years which has been contained on herceptin alone which may give you some hope.
I too have'nt changed my diet much since dx although I am not stage iv I intend to put the time aside to look at this in more detail myself.
I wish you every good wish for the New year and hope they get these mets under control asap for you.
Tricia

[saleboat]

Dear Angela,

I was so sorry to read your post, and my heart just breaks for you. It isn't fair at any time, but especially around the holidays.

I just want to be VERY clear with you about one thing-- NOTHING about your diet caused your cancer to spread. If we knew what caused cancer, there wouldn't be any-- right? If the link between diet and cancer was that strong, I wouldn't have gotten it-- I was a vegetarian for 20+ years before I was diagnosed with breast cancer at age 34. Please don't add shame and guilt to the already overwhelming emotions that you are now feeling. THIS IS NOT YOUR FAULT!!!!!!!!!!!!!!!!!!!!!!

I hope you will read through this site and get to know the many women who are successfully battling lung and bone mets. Her2+ cancer is a horrible one to have, but luckily the drugs are even better and I hope that Herceptin will do the trick and get you back to NED very soon.

Repeat after me: THIS IS NOT MY FAULT!!!!!!!!!!!!!!!

Wishing you some peace this holiday season, and strength and courage for the next round in your battle.

Jen

[Kimberly Lewis]

Thanks Jen for repeating that! It goes w/o saying that healthy people get cancer every day... I do think the anxiety about swallowing a ton of suppliments and the claims that go with them is not necessarily worth it. Balance is more important. I listen to my friends advice and keep what is good for me and put the rest on the shelf. I DO listen to my Oncologist, I Do take my treatments and I do live my life to the fullest.... guilt be dammed.

[Hopeful]

Angela,

Re: your comment about your sisters eating the same food and being cancer free, please read the comment below from Dr. Susan Love's blog from the first day of this year's San Antonio Breast Cancer Symposium:

" Research that indicates that much of breast cancer is not caused by genetic mutations but rather is due to temporary suppression of a gene. Like a switch these “temporary” mutations (epigenomics) can be turned on and off. This helps explain why identical twins with the exact same genes and mutations do not have the same incidence of breast cancer."

It just goes to show how truly unique each and every one of us is. I also agree with everyone here, no guilt over diet - bc is an equal opportunity disease. If the answer were that basic and simple, Herceptin would never have been invented.

Best of luck to you with your treatment plan,

Hopeful

[Becky]

Dear Angela


Don't despair that you have done something that caused your cancer or caused it to return. When I was first diagnosed, I felt that I "deserved" to have something happen to me because I was doing everything wrong. I let myself go and gained 50 lbs (I have since lost almost 40). I didn't exercise and ate what I wanted (and way too much of it). I certainly didn't know anything about health or nutrition.

I can say that even though it was my therapy to change, it does not mean it is the magic bullet by any stretch but good health does help one weather through and heal better.

If you logically think about it, I was like a typical American woman - overweight, no exercise etc. However, only 1 in 7 or 8 women will develop bc in their lifetime so if it was any of this - we would all be waiting in line for our masectomies!!!

There are so many treatments and new drugs on the way. You will have many, many years of NED ahead of you and we are all likely to die of something that is totally unrelated to this disease. We are here for you anytime.

[Mary Anne in TX]

Hi Angela!

I'll be praying for peace to sweep over you and lift off that feeling that you did anything wrong. As I read the words of the heroes on this web site, I know that Stage IV is doable! I see victories in all they say and do. I get blessed by each of their battles and victories!

About the food and supplements thing, I think we all are different. From what I have read and learned, I believe that we all have different bodies and genes and need certain things to "beef up" our immune systems. I study my blood tests each time I get them to see the pattern in them and really try to listen to my body when it feels good and when it doesn't as to what I eat, how much I exercise and how I handle stress. I think there is lots to learn and lots of information coming.
There is sooooooo much good stuff on this site. I agree that we can take what we want and leave the rest. I find that as time passes, I am able to take more in. I accept some new stuff, put it to use and then "rest a bit"! Then I study some more, take in some more and put it to use. It seems to be a process for me. I can only take in so much at a time and make so many changes at a time without getting overwhelmed. But I like believing that I can help to help myself. I've added exercise daily and love how it makes me feel. I've cut red meat to almost none and other bad fats to a minimum. Doesn't mean I don't "cheat sometimes", but it happens less and less as I feel better and better. We'll know when we know what works best, but I just like doing something myself. But we're all different and I applaud each person's commitment to empowering themselves to lead their own life!
Wishing you the very best in the New Year.

[Bev]

Sorry about the bad news Angela. I guess the bottom line is no one knows for sure if diet will change the course of things. I was PO'd getting BC while going to the gym 5x/wk and eating salads with walnuts every day.

I take supplements sporadically in the event they might work, ie curcumin, fish oil, steak, chocolate etc. In any case, a decent diet and exercise program, may keep you more resilient to the chemo side effects.

Keep up the fight. It is not your fault. Bev

[Jean]

the whole theory of taking good care of ourselves. Exercise, proper rest,
eliminate stress as much as possible ...etc. etc. it all has a role. But we
must also acknowledge that our own bodies are in control no matter what
we do or don't do. I have an Aunt who smokes like a chimney and drinks
like a fish....she is in perfect health and lives a active life and runs her own
home, she is 93 years old and kicking strong. So you see Angela we just
don't have the answers. It helps to take care of our bodies as that will
give us improved odds, but certainly no guarantee that we will be free
from any disease. Do not be hard on yourself as none of us here did anything
to get bc. As you already know the last few years have given us great
medicines and treatments to fight this monster.

I am sorry that you have been dx. stage IV, I will keep you in my prayers
and think positive, the mind does help to heal the body.


Hugs,
Jean

[RhondaH]

I am one that puts a lot of store in diet and while I feel it is beneficial for EVERYONE, I feel that it has a LARGER benefit for some breast cancer patients vs others in terms of helping prevent recurrence. I hope it's not inappropriate my asking, but in a prior post you wrote that your oncologist wanted you to "take herceptin once every 2 weeks for 12 weeks"...did you do this? Take care and God bless.

Rhonda

[Adriana Mangus]

Dear Angela: Do not blame yourself for the way you eat. Much studies have been conducted and the "genius" have not been able to connect diet with cancer. My neighbor (49 yrs. old) was diagnosed with bc in 1998, in a matter of 4 years she passed away. She had been a vegetarian since age 18. Now, based on a diet w/o red meat, fat, alcohol and so forth; she should've had a better chance of surviving cancer than most of us? I do not believe eliminating red meat from your diet would make a difference in your disease. I do however believe in moderation. I'm a 12 years bc survivor and other than adding a little more of excercise to my daily routine, haven't changed my eating habits. You must, however, eliminate those negative thoughts from your mind. That will kill you! Stay positive Angela, mind over body. May God Bless you and your family during this difficult time.

[mamacze]

Dear Angela,
I am so sorry to hear you are now a stage 4, the words alone are an unsettling shock and the implications are frightening. It is ok and normal to sit with the fright and pain of what it all means, it truly does change your life.
I am also glad you have our site; please rest in the arms of your buddies here, many of us are also health stage 4 folk, ready to hold onto you, give you advice and pick you up when you stumble.
Keep us posted, Angela and let us know what treatments you go on.
Love and hugs, Kim from CT