Good morning TN friends! I’ve been gone for a couple months. We moved to another state and got the kids started in school. I’m working on getting established with new doctors and I’m participating in an After Breast Cancer program at the Y. So far so good. My new MO is having my path results retested by this facility and then we talk about her recommendations on next steps Sept 12. She seems more inclined than my previous MO to give me Xeloda. I didn’t get PCR but I also didn’t have 1 cm of residual so it’s clear as mud trying figure out what, if anything, I should do.

Glad to read most of you are coming along well. Always love reading the amazing success stories!!

Hey moth, be sure to let us know what your MO says about taking aspirin (low or regular dose), I'm very curious - I asked mine, and besides being all defensive and snarky with me for having the nerve to ask questions (especially if I need to ask about something that we'd already discussed after getting conflicting information from other doctors), she refused to discuss aspirin after I decided not to do the clinical trial. She said there was some literature that supported aspirin as a preventative measure, but she wouldn't say anything else and she refused to give me the OK to take it, and I was already exhausted in the appointment from having to fight with her to get any answers at all to my other pressing questions, so I just didn't have it in me to keep arguing. If there's a chance it might help, I'm very interested in starting a daily regimen, just to feel like I'm doing something to try to stop this from coming back, however small.

(I chose not to do the trial because I just can't handle the anxiety anymore - a trial means a decade of extra appointments, extra tests, extra thinking about all of this mess, and given how unsupportive and unhelpful the agency has been with me, especially concerning my mental health, I just really don't want to subject myself to more stress from them, especially knowing that I could very well just be taking a sugar pill for a decade. My doctor wasn't very pleased with my decision.)

I do wish I had a MO that was willing to listen and discuss things with me and actually field my questions, I'm tired of talking to doctors that get defensive and mean when I have questions about my health and my life and then get offended with me if I've done my own research and want to discuss things. It's bad enough that I now wake up every single day wondering if today is the day it comes back and it's game over, not being able to have a proper discussion with the doctor tasked with my care (because she gets seriously offended if I do anything besides smile and nod to everything she says) makes it a million times worse, it's like they enjoy sending me off frustrated and in tears (but with no answers) after every appointment.

Here re a few things I am doing, with my oncologist's support:

- Metformin (taking 500mg now - people who tae it get fewer metasteses)

- aspirin (taking baby aspiring now)

- Melatonin at bedtime

-heat on site of tumor and axillary node (HW bottle, heating pads) & infrared saunas (look up hyperthermia)

-a brief fast (fasting mimicking diet) prior to chemo ... veggie juices & midlly ketgogenic diet, with healthy carbs post chemo

- supplements and vitamins (Quercetin, Alpha Lipoic Acid, D3, EFA fish oil capsules, Curcumin, B6...). I may try some vitamin infusions as well. For people looking for complimentary stuff I recommend talking to an integrative medicine doctor. The Onccologist was fine with this plan but did not suggest any of it. I feel like doing everything I can to protect my healthy cells and nuke the cancer....

I'm new. I was diagnosed stage 1 IDC triple negative August 9, 2017. Had bilateral mastectomy September 8. Started chemo October 5th. Finished chemo January 11th. Had exchange to implants July 10th....my birthday. I'm 66. Taxol left me with neuropathy in my feet. I also had strange things as I would wake up in the middle of the night and smell cigarette smoke but that wasn't possible. That's just recently stopped. I also was out of whack with my sweat glands. When I got warm I didn't sweat. I felt like ants were stinging me. That too has recently stopped and I sweat once again.

I'm working out at the YMCA. That seems to be helping me regain strength and stamina.

My hair started growing back in late April...black with gray. I have been natural blonde my entire life. My hair stylist colored it for me last month. We compromised with brown.

My year with cancer has been my purgatory. I keep hoping to wake up and be my old self with my breasts and hair.

I hope they find a cure in my lifetime.

Welcome Rascalsmom! Interesting to me to read your side effects, - I, too, have had that weird cigarette smell!! I still do, although not as much as I once did. I don't think I heard anyone else mention that! Wishing you good health!!

LoveMyVizla, - Wonderful that there is good news on the horizon, - I hope they HURRY UP!!

BE WELL wishes, and hugs, to all here!

Mike - so happy to hear Halaven is working for your wife!

Thanks for the link Vizla

Hi LoveMyViszla!

I've already switched MOs once, my previous MO was worse, he was outwardly hostile and incredible condescending, he made me feel so small. The one I have now is better, but only marginally. I dread all appointments with her, but I had to make a lot of fuss to switch doctors in the first place, they were determined to force me to keep seeing the previous one, so I highly doubt they'll be amenable to another switch. I feel like the MOs at this centre prefer patients with no mind or voice of their own, they don't like being questioned.

For my pre-chemo checkups, I was seeing a really great MO, but she couldn't keep seeing me because she was finishing her locum and moving elsewhere for another position, I still miss her.

Hi all, I'm new to this forum and hope it's okay if I'm a borderline member. My initial path results were ER+, PR-, HER2-, and then my oncotype came back with a score of 38 and showing triple negative. My oncologist said that's because my cancer is so weakly estrogen driven that on a molecular level it's ER-. Which makes the oncotype invalid for me. So even though I'll eventually be on tamoxifan just in case it helps, right now I'm in chemo in spite of no node involvement and clean margins after my mastectomy. So a nasty techinically ER+ positive but really TN cancer.Yay. I've had my first round of TC a week ago.

@AnxietyGirl - I am sorry you have an unkind oncologist. My initial MO was an ass and so demeaning and dismissive. When I told him about my serious needle phobias and asked for a port, he said no. Just no. Fortunately, when I asked my breast surgeon for a second opinion referral, she sent me to a very kind MO who I trust and am happy to be working with. And he immediately okayed the port placement. If you have anyone on your team you trust (like I did my breast surgeon), ask to be referred to someone kind and who listens to patients. Sometimes if you don't specify that, the just go with who has a better reputation. This is all hard enough without having to work with someone who treats you poorly and ultimately, the MO is the person you'll be working with the longest.

Congratulations! I'm at the beginning of my journey, and I am happy to cheer for you and think of reaching the end of my treatment too.

Bravo!

Santa Barbarian

thank you !

ccmc2 - congrats!

I'm done too. I finished rads yesterday. Feels a bit odd to suddenly have nothing 'medical' to do. I'm prescribing myself lots of exercise. Was it this thread that someone posted about making her body inhospitable to cancer? That phrase resonates.

Since we are triple negative, do any of you know of specific vitamin and/or mineral supplements we should avoid after we've completed chemo and/or rads?

My onc isn't specific as she as a doc just thinks supplements are a waste of money.

I've taken supplements throughout my adult life.

Just looking for experience of other TNs.

RascalsMom,

There is a center in Chicago called The Block Center -- an integrative cancer treatment center. I had a consult with them. Dr Keith Block. He also has a book that you could get, for a lot of this info. You can probably get similar advice from a good experienced integrative medicine MD or Naturopathic MD in your town. The Moss Report has a lot of this info in it as well. You want to find someone who is looking at your entire system, all your nutrition, your lifestyle habits, and and your unique needs. Many places do a bunch of blood tests to determine these things.

In lots of ways, cancer can be seen as a metabolic disease... Many adults are diabetic or pre-diabetic in our modern fast food culture. What's normal for us physiologically is hunter-gatherer food, not processed supermarket shelf-stable food. Foods that are in their whole state. My glucose was on the high side of normal when I was iagnosed and I considered myself a very sugar conscious eater. And, our standards of normal may be quite high. Both my parents developed diabetes as older adults. I figure I am definitely on the metabolic disease spectrum.

Many things have been found to discourage the growth of cancer via statistics of recurrence. Exercise of about 30 mins per day - or 3 hours/week - of brisk-paced walking definitely improves survival and diminishes recurrance. (Even during chemo it helps the tumor's response). Intermittent fasting or fasting-mimicking - see USC's Dr Valter Longo's info online - stresses cancer cells and boosts immune function. High vitamin D status helps - you want to be up near 80 which is much higher than the cutoff of 30 for 'normal'. Low blood sugar/ low inflammation diet: no white sugar, white flour, white rice, or other refined carbs. No transfats or deep fat fried/ charred foods. No alcohol. Yes to fermented foods like Kimchi. Ketosis is a benefit, as cancer cells can't use ketones for fuel but normal cells can, but huge amounts of the wrong meat and fat seems to be a bad idea. Keep protein lowish and primarily from fish/ nuts. Max out your fresh veggies.

Going at least 13 hours between dinner and breakfast (no night snacking) is a benefit to blood sugar. Keep most of your diet focused on cancer-preventing foods, like an array of colorful vegetables. I was told to limit egg yolks but whites ok. I was told to keep my fruits low glycemic (berries, kiwi, watermelon) and to have small amounts-- treating fruits, sweet potatoes, carrots and other healthy-but-sugar-laden foods as treats and stay under ~1/2 C of these per day, combined. There are food based supplements, which can give you revasterol etc without the sugar. Stay away from dairy due to inflammatory properties (though organic whey protein isolate powder is ok as a supplement).

Basically, you fill up on above-ground veggies, deep sea fish, and healthy fats like nuts (almond, macadamia, pecan, walnut) and avocado... Healthy complete carbs, like lentil and quinoa are ok, also small amounts, keeping an eye on total carbs.

Sleep/sleep hygiene is very important. Deep breathing (consciously really filling you lungs deeply) min100 breaths per day. Melatonin is a benefit, and regular bedtime in totally dark room is a benefit. Metformin is a benefit. Baby aspirin. All of these chip away at recurrence.

I am taking a host of natural superfood supplements (curcumin, reishi mushroom, super green powder) during my chemo, and doing fasting-mimicking before the chemos to stress my cancer cells. I am also doing vitamin IVs for nutritional support. Last heat is a very good stressor to cancer cells. I am doing infrared saunas which heat your tissue.

Rascal Mom: The dietician at Northside Hospital here in Atlanta put me on Glutasolve powder, twice a day. You can sometimes get it here more cheaply than Amazon. Apparently we TNBC folks need it both during chemo and for general support. I'd also take a good probiotic. I have GERD badly, so the dietician has me taking this powerful, and expensive, powder 1 or 2 times a day. Without VSL#3, I lose my voice by the end of the day. And singing in a community chorus is something I missed during the worst of chemo and have returned to.

Good luck!

Paula

congrats to Cccmc2 & Moth!! Hope you both a well deserved celebration!