Calling all TNs

Great news! The scheduler called today and I get to go tomorrow! Of course there’s a snowstorm forecasted but that never stops DH from driving so all should be well, just take longer!

Mncteach: Make sure to ASK for the diagnosis right there when you get th test so there isn't an additional wait for results. You can often ask to speak to the radiologist who is on shift for their conclusions (but, at least at my place, you have to ask). Hoping it's just necrosis as suspected. Good they got you in so fast!

Gamb it is so weird to switch gears from treatment to post treatment.

I have put myself on a non-recurrence plan of eating nutritiously, supplements and exercise that provides a little structure... but we all understand that feeling!

Excellent, Mnc!! Now you can relax. Be good to yourself

Two promising clinical results involving advanced tnbc were posted today in Lumpie's thread... very encouraging.

https://community.breastcancer.org/forum/73/topics/860294?page=58#idx_1715

Hello Dear Friends Old and New, and Sylvia (UK Boards who checks in on all of us here):

Congrats to everyone who has recently received and posted excellent news, and many prayers for those who are just starting their treatment.

Today I'm posting that I reached my 8 year milestone. It's an emotional moment for sure.

I think of everyone often, and always praying for a cure.

Keep on supporting each other and sharing information - it's how I knew what to do, what to ask, and how to lead.

Much love and prayers,

Debra

Inspired, thank you for posting. I am so happy for you and your long term health!

I love your signature info... what you are doing is exactly what I am doing. It feels good and self loving to respect my body's nutritional and physical needs. I would add sleep hygiene to the list; melatonin and a cold pitch black room. And supplements, as per an integrative or naturopathic physician's recommendations re your particular cancer and systemic needs.

I feel incredibly vital and well, *much* better than before cancer. I am even grateful to BC, for sending me in this direction. After a grinding of gears, once I internalized the new habits and "go to" snacks of low inflammation/anti cancer eating, switching to a low glycemic diet and exercising 5-6 hours a week, I feel wonderful. My former aches and pains of 'aging' are gone. I do not miss alcohol or sugar, and the rare times I indulge in them are fully enjoyed without triggering a binge. I feel in balance.

Wonderful news, InspiredbyDolce!

Lyn

Kber- Great news

Insideout2

Happy New Year all!!

Hi SantaBarbarian!

I do take additional supplements, but the signature line under my name is limited in characters, so I had to really work with to fit in what I had into that field, and decide what I felt would be most beneficial to those stopping by, and I felt many people calibrate vitamins into their routine in some form or fashion, so I left it off.

For anyone wondering, yes, I do take a multivitamin (Garden of Life Raw Whole Food), plus Vitamin C and Vitamin D3. All are done daily, with no exceptions. Same with Metformin. I also sometimes rotate in other supplemental items, just depending on what I'm all about at any point in the year. I also add ground flax seeds to my smoothies. I usually get my vitamins ordered via Amazon since I can get a 60-day supply for a Sprouts price of 30. Although Sprouts might be running a sale since it is a New year. I also stopped alcohol and diet coke consumption on day of diagnosis, and now drink organic green tea, spring water, alkaline water, lots of any type of water. I used to be a Tab drinker way, way back in the day, and saccharin has had on again off again FDA carcinogen warning labels. Kind of like the coffee debate.

The main thing I wanted to post about today, is about the D3. There has been some information about low levels of D3 and increased risk of bc. There is an article as well on the main breastcancer.org website that comes up under the search results.

I had my levels checked when I was dx'd, and I was the lowest my primary care physician had seen for where I live (abundant sunshine state) and I was at a 12. Normal is 35-99 (in general).

I started supplementing with drops, I use Source Naturals, and got my levels up to 48, then 56, then into the 90's. And maybe one time I was over the limit and had to go off them for a brief period of time. LOL I'm now pretty much in the higher zone, and someone posted in our forum that a TNBC doctor/researcher suggested levels in the 60s. I have my levels checked 2x a year - once with my PCP and once with my Onc. I get the Source Naturals from Whole Foods, but have gotten them from Amazon before.

I look forward as well to reading of all the new supplemental enhancements that people are doing!

For anyone starting out, I recommend doing what is reasonable for you, and then gradually adjusting. I didn't arrive at this formulary immediately. I read a lot online, the boards, Sylvia from UK boards, and adapted what I felt I would be consistent in, and adjusted as I went. I still adjust and try new things every now and then. Such as recently added in cauliflower rice as a swap for brown rice sometimes. As new things become available and I learn about them, I try them.

Debra

I'm not sure which feed I saw this on, but they were sharing information about taking supplements while you were undergoing treatment and how it increased your chances of reoccurrence to some 80% and death by the same %. Good grief! I was told to take B6 because I had terrible hand-foot side effects and neuropathy probably midway of my chemo treatments. I was also taking a vitamin D supplement as well. I eat a very healthy, mostly plant based. But I do eat meat occasionally. Now I see a diet that says you shouldn't eat any type of food that contains asparagine, those foods include nuts and legumes? What the heck would that include beans which I eat and I eat walnuts and cashews in my cereal. I don't know which way to turn and am going crazy.

I conclude from all the conflicting advice is that no one has a magic cure. And the confusion about what to do just adds stress. The only consistent advice is to eat a healthy diet and exercise, just as everyone should, because the healthier you are in general, the better you'll be able to deal with anything they throw at you: chemo, radiation, surgery, hormonal therapy, everything. That just sounds right to me, so that's what I'm doing. Or trying to do...

I saw that same posting. It was NOT a double blind study but rather an observational study dealing with self reported vitamin use prior to and during chemo. Quite a few holes in it.... dosages were not discussed, formulations not discussed etc... so it's hard to draw any conclusions from that study.

Arlene, it is always such a boost to hear from people who are doing well years after treatment!! YAY!!

I was also told not to take vitamins (I wasn't on any yet) during treatment and so I didn't. My Onc said he didn't want anything potentially masked or hidden during treatment.

I read this article one time published on NCI by a doctor who noticed he was having an increase of TNBC patients. He decided to document and try to find any correlations between them. He found a very high % of his TNBC patients had D deficiencies. Everyone is different though, so we should remember that. Just like some smokers can live their whole lives and smoke and never get cancer. In fact, my Onc's mother recently passed at age 95, she lived alone until 93, and she smoked up until she passed.

These boards are great for sharing information, but everyone will have their own style and approach, and justification, and research and beliefs. You have to believe in what you do for it to make sense to you so that you remain committed. And like others have said, we should not drive ourselves crazy or set goals that are just unrealistic of a routine to keep up day after day.

You need a great quality of life for a lifetime of living, so do what makes you feel good inside and out. Treatments for TNBC patients are pretty thorough these days, and I'm sure the doctors have everyone on the best available path for them.