Calling all TNs

I say make as many memories as you can! Sounds like fun!

As far as the Neulasta shot, I'll just throw this out there.  I work at a University that has a mycologist(mushroom PhD) and I know of many studies showing how mushrooms have special beneficial properties. I did some research into medicinal mushrooms regarding breast cancer and stimulating the immune system and decided to take Maitake and Turkey Tail mushroom capsules that are organically grown in Oregon by Paul Stamet. (Fungi Perfecti)  Within a week after starting the capsules, I never had to have another Neulasta shot. My WBC and blood counts remained perfect all through 6 months of chemo. I credit the mushroom capsules for that. I hated those damn Neulasta shots. Claritin is supposed to help but I had a lot of bone pain even with the Claritin. 

I had to stop the mushroom capsules before surgery.  Interestingly, my rbc count and hemoglobin dropped during the time I stopped. They even tried an iron infusion but I was allergic to it. As soon as I had surgery and started my mushroom pills, my blood counts were fine the next time I was tested.

I would recommend that you talk to your oncologist about it. But also remember that most medical doctors will give you the frowny face if you bring up any "alternative" treatments.  But as far as I'm concerned, taking mushroom capsules is no different than eating mushrooms. There are lots of studies out there regarding them. 

BLuebird, that mushroom post is very interesting. Can you attach a link to the ones you buy?

Ban - nobody here is going to "recommend" a type of radiation that you should choose. I honestly don't even think there is a choice of type. It is whatever is appropriate to your situation. Listen to what your RO has to tell you. FYI - I think gamma knife is for people with brain mets for example. I've never heard of a lower stage getting gamma knife.

Bak - glad to hear you're feeling better.

Gillyone - you are quite right gamma knife is only for brain mets, nothing else. As for types of radiation there is only the one that everyone gets, no other type.  The only difference is the length of your treatment, ie 3 weeks of rads everyday, 5 weeks everyday etc.    

Thanks Gilly, Titan, Cocker n Journey! 

Have read that book - surviving triple negative ..when i got diagnosed a few months ago. Wonderfully written.

Now some tumors have "Lymphocytic Infiltrate" ...I guess if we check our pathology reports we can get to know.

For such tumors vaccines which boost the immune system should work well. It seems, for women who have a good amount of Lymphocytic Infiltrate in their original tumors, they have a lower risk of getting it again in the form of metastasis. 

but why do some women have tumor lymphocytic infiltrate and some women donot is a question. 

i guess all of you whose pathology report says dense lymphocytic infiltrate/ lymphopasmocytic infiltrate, should consider this a good sign. 

Titan here in NZ internal radiation has never been given for breast cancer only for cervical cancer.  It was tried at one time for ovarian cancer  but was deemed not to work.

Ban Yep Titan's right  rads are a piece of cake compared to chemo.  Never had any side effects whatsoever from it, neither did I have tiredness.     

http://www.fungi.com/product-detail/product/host-d...

http://www.fungi.com/product-detail/product/host-d...

I am all ways interested in anything from Oregon…it is my summer home. I will do some more research on this. Oregonians are interesting folk 

Wow, that's sounds like fun, as well as being productive, Lana!

I still have my port in, since Oct 2012, and it hasn't caused any problem with my exercising; I do high-impact aerobics, dancercise, free weights, and have done them for most of my adult life.  I had spoken with my doctor a while back asking about when to remove my port; he said whenever I want.  I am so afraid of needing chemo again that I have delayed and delayed, but I told him I would do it next month -- and now I am kind of backing out.   But I expect it to be less difficult than having one put in, so I plan a day or two of caution when exercising.

Good luck, Lana!  I hope you have fun and reach your goals.

Carol

Ban - I consulted with two tumor boards to help guide me in the decision.

John Hopkins Breast Cancer Center has a free question-and-answer service, and they provide answers to a wide range of topics from symptoms of breast cancer, to breast cancer diagnosis, question about breast cancer risk, mastectomy, radiation and many other topics. Ask An Expert: John Hopkins Breast Cancer: http://www.hopkinsbreastcenter.org/services/ask_ex...

I'm also attaching an article from the Cancer Society that summarizes a study which compared two types of radiation therapy:  a type of brachytherapy vs whole breast irradiation.

"Study Compares Different Types of Radiation for Breast Cancer"

http://www.cancer.org/cancer/news/study-compares-d...

I hope this information is helpful for you!

Jianchi and Bluebird:

Here is some more
information on Evista.

If you are just
starting your TNBC research in general, you'll start to come across articles
referencing EGFR ... it has been discovered that a large portion of TNBC tumors
have an over expression of EGFR, but there is some debate on what to set the
standard assay levels at. If there is a way to find out your EGFR level that
might be helpful as well, and then you can ask your doctor if Evsita works best
on those with a higher EGFR. 

http://www.ncbi.nlm.nih.gov/pubmed/23842642  “Raloxifene
reduces triple-negative breast cancer tumor growth and decreases EGFR
expression”

http://cancerres.aacrjournals.org/cgi/content/meet...(this study is not about a
specific treatment, but summarizes the prognosis of those patients who have
over expression of the EGFR and its association with prognosis)

https://theoncologist.alphamedpress.org/content/16... "For example, as already described, there is still no
agreement on standard assay or expression levels for epidermal growth factor
receptor (EGFR)."

If you are new to the boards, here is an excellent article.  I have found the information so helpful in it, and I've modified several things in my daily life, as suggested in this article.  I've listed the various topics in the article below and the direct link to it.

I've decided to post it again, because with how we all want to get on a targeted therapy, there is still much data that shows we can lower our risk with other changes in our life, so I wanted to share this information.  I really have referred to the article a lot, because I like how it describes how something works, so it gives the reasoning behind things. It also references reduction % for amounts of exercise, which I felt was a really good guide in setting up a weekly exercise goal for myself.

Practical Principles of Some Lifestyle-Oriented Breast Cancer Risk Reduction

http://nosurrenderbreastcancerhelp.org/page93/page100/page100.html

Topics:

Dietary Restriction,  A Better Way to Diet: 
Intermittent Energy Restriction (IER), Insulin Control, Glycemic Control, Physical Activity/Exercise (PE)

Caloric Restriction + MCM Diet
adherence + Resistance Training + high-PE (high MET hours aerobic physical
exercise), and How to Think About
Environmental Tumorigenic Exposure Reduction

Regarding the post on the Lymphocytic Infiltrating Tumor

"Diagnostic and Therapeutic Implications of Tumor-Infiltrating Lymphocytes in Breast Cancer"

http://jco.ascopubs.org/content/31/7/836.full

Two things were interesting in this article:  "... it is impressive that in the Loi et al study,² the 5-year disease-free survival rate of those with lymphocytic infiltration is 92%" (referring to TNBC)

"Evaluation of tumor-associated lymphocytes by standard hematoxylin and eosin staining is extremely inexpensive and can be performed easily in the setting of the routine histopathological evaluation. Considering that medullary breast cancer is an old pathology concept and that tumor-associated lymphocytes are also relevant for BRCA-mutation–associated breast cancer, pathologists should perhaps get used to reporting this parameter as a part of the standard histological description of breast cancer."

Kathryn, that sounds like so much fun!  Sorry to hear you lost some hair with the helmet! 

Lana, good luck with your goal and competition! I really need to start a program of sometime. As of right now I'm still sleeping much of the time due to my side effects from radiation. I had the MD Anderson protocol 3D gaited breath holding radiation. If you go this route, be sure to go to a place that has experience with it.I had a miserable time at my local hospital since I was the FIRST patent they treated this way.  But overall I'm glad I went with their protocol. 

InspiredbyDolce, thanks so much for all the information and links you posted. It's nice having research handy. 

For anyone interested in the mushroom capsules, it is the brand that momoftwodoxies posted. I started out buying from FungiPerfecti, then Vitacost, but now buy from Amazon since they have the best prices. Turkey Tail:  http://www.amazon.com/Host-Defense-Fungi-Perfecti-capsules/dp/B0053DR1EM/ref=sr_1_1?ie=UTF8&qid=1393200779&sr=8-1&keywords=fungi+perfecti+turkey+tail

Maitake: http://www.amazon.com/Fungi-Perfecti-Defense-Maitake-Capsules/dp/B0031CBNYG/ref=sr_1_1?ie=UTF8&qid=1393200899&sr=8-1&keywords=fungi+perfecti+maitake

I currently take a combination of capsule of mushrooms for overall general immunity. (It has turkey tail and maitake in it) http://www.amazon.com/Fungi-Perfecti-Community-Vegetarian-Capsules/dp/B002WJ1BZK/ref=sr_1_1?ie=UTF8&qid=1393201214&sr=8-1&keywords=mycommunity

Here's a video of Paul Stamets giving a TED talk regarding his mother's breast cancer:

http://www.bastyr.edu/news/general-news-home-page/2013/09/ted-talk-turkey-tail-helped-my-mother-through-cancer

Dr. Weil article:

http://www.drweil.com/drw/u/QAA400904/Turkey-Tail-Mushrooms-for-Cancer-Treatment.html

Missed you too Mag's.  I agree,  we don't need or want memories of that time.  Today the new stronger Mag's, has climbed another mountain by putting the shirt on and saying "up yours cancer". It's time to start living and see just what life has in store for us.  Later on you may want to reconsider  and that's ok as long as it's at your pace.  Too much to see and do in life to keep looking back and we need to see what precious moments  are still out there for us,  not cancer ones.   Go and do something nice with that old feller of yours and so will I.

In time hopefully all of our newbies will come to this stage.     

BanR - Thanks for the update on the lymphocytic infiltration.  I actually had never heard of it, until you mentioned it, so I don't know much about the current theories involved with that. As with many things we research, studies reflect pros and cons.

Now for sugar, there are 4 calories in 1 gram of sugar and many things you would not normally think would have sugar, do.  Examples:  bread, ketchup, salsa, etc.  So when you think about allowing yourself sugar (if you are planning on restricting it to a certain level) consider factoring in a buffer zone for the sugar that is hidden in stuff that you might not know about.  But you are right, we do need a certain amount of glucose for our body.

I do eat sugar every day.  I get these 'cat cookies' or 'animal cracker (organic)' from Trader Joes.  One serving is 17 cookies, and with only 1.5 grams of fat and 6 grams of sugar (that is barely a little over one teaspoon).  I sprinkle them along throughout the day, so I don't feel so deprived!! Someone on these boards told me about them.  I will also have fruit, but that's a natural sugar. And I will have organic dark chocolate (usually one square at night) with my hot green tea, but one square is only 1/12 of one serving! You can find all different types of low sugar low fat snacks if you go to a health store.

Also, I highly recommend downloading the Fooducate App.  It scans the barcode on each product at a store and gives you an A-F rating.  It will also give you alternatives to the product you scanned in an effort to help you choose one with a higher grade.  Someone told me about the Trader Joe's cinnamon bread, so I scanned it, and it had like a B or C rating.  I clicked on "alternatives" and it gave me the Ezekel Cinnamon Bread at an A- rating!  So that is what I got instead and have been buying it ever since.  I totally love the Fooducate App!  It will help you make better choices.

I cut out Diet Soft Drink and Coffee when I got dx'd.  Now I drink only water and green tea.  But sometimes I will go through McDonalds ($1 for Lg Tea!) and instead of unsweet tea, sometimes I will ask them to do half-sweet and half-unsweet mixed together.  That way I get a little sweetness but not too much.  At home I drink my hot organic green tea all day long, without sugar. It took a while.  At first I started with a pack of sugar (one teaspoon) and then I gradually weaned myself off of it.