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Topic: I need help or words of encouragement pls🙏

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Apr 3, 2019 05:40AM

dlittkemann wrote:

Hey all

So I have just completed treatments and was told No evidence of disease. But why can’t I stop worrying. Every little ache or pain scares me. I’m constantly thinking I’m finding or feeling lumps and bumps. It’s so scary even tho great news and I just want to hear positive stories. Ppl who are here and doing well years later? Thank u in advance. I hope I can learn how to live again and just w less worry.

Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/19/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right
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Apr 3, 2019 07:12AM santabarbarian wrote:

I'm not years out yet -- also, like you, I've only recently completed treatment (13 days ago was the last of my rads). My skin is basically just getting back to normal now after the burning from rads.

I am not particularly worried about recurrence (fortunately I am not a worrier), but I am doing everything I can to discourage it... vigorous exercise, low animal keto diet, & immune-support/antioxidant supplements. Lowest recurrence rates are in women who exercise 3-6 hours a week and eat low animal fat diet.

I am pain-free right now, at baseline, so I suppose if any pain were to crop up, that would worry me or be something I would need to check out. Regardless, I will be getting staggered mammos and MRIs and follow up care through the most likely window of recurrence (3 years). I am told by my doc that he counts from diagnosis.... so in July I will be at 1 year post diagnosis already. I also take Metformin and Melatonin for their anti metastatic properties (went on both during treatment). Both effect recurrence rates as well. Maybe something like this as a follow up program would give you more confidence?

TNBC is a killable cancer. If you have killed all of it-- which is only truly known when it does not come back-- then it will not come back and after 3-5 years you will be genuinely likely to be "cured' and never be bothered again. Did you get a pCR? If so you are 90% likely NOT to have a recurrence in the 3-5 year window. That's a very comforting stat.

My plan is to be very careful through the 3-5 year window. If something crops up I would hope to be aware of it quickly. But I am feeling disease free, strong, and well. I think it helps to have health plan and follow it.




pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Apr 3, 2019 07:18AM dlittkemann wrote:

wow you have made me feel so much better. I have been reading about metformin and I also do a low carb diet! Did very strict keto during my chemo too. Been researching metformin. Going to ask dr. I was worried w low carb diet that addition of metformin cause hypoglycaemia. Can I ask what dose you take. Also I did not know about melatonin? Pls feel free to private message me too. Thank u so much for the reply. Helped me so much. My last radiation was mar 6.

Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/19/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right
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Apr 3, 2019 07:57AM santabarbarian wrote:

On metformin: I take 1000 mg (2 x 500mg) which is lower side of regular therapeutic dose. Melatonin, 20 mg is my dose, you take it at night at the same time about 30 mins before you want to be asleep (but work up to this amount slowly... start with 3-5 mg and see how that goes...).

Re your PM, the pCR stands for pathologic Complete Response. IE, only dead cancer scar tissue was found upon LX, after neo-adjuvant chemo. No 'live' tumor, mets, or micromets remaining.

My exercise routine is hiking a few times per week (which is somewhat like interval training, and much more beautiful), pilates 2x, and once a week I do a huge set of stairs in my town... it's about 12 flights, and my friend and I go up and down it 5 times. My understanding is weight training and using large muscle groups is impt, so is flexibility and so is aerobic conditioning. Intervals tell the heart to build itself and stay strong and are very efficient-- you can do full workout in 20 mins.

I had a consult w an integrative Oncologist and he was very big on exercise. I slacked in late rads so am ramping this routine back up right now.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Apr 3, 2019 08:10AM dlittkemann wrote:

thank u so much. So w keto and add on metformin did u find that your blood sugar dropped too low ever?

Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/19/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right
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Apr 3, 2019 08:13AM dlittkemann wrote:

I simply cannot thank u enough. I have been researching metformin as part of my treatments and now I know it’s a must. It’s like a sign that you contacted me and also doing keto etc. All stuff I’m doing too. Thank you so much 🙏🙏🙏

Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/19/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right
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Apr 3, 2019 03:42PM mb1024 wrote:

I felt the same way when I finished treatment back in 2012. After months of frenetic running back and forth to doctors and treatments, when it ended I suddenly had too much time to worry. Every little pain or twitch brought on panic. But here I am over six years later and I frequently forget I ever had cancer. You'll get there too.

Maureen Dx 3/9/2012, IDC, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- Surgery 4/9/2012 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 5/9/2012 AC + T (Taxol) Radiation Therapy 8/12/2012
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Apr 3, 2019 04:04PM dlittkemann wrote:

Wow so glad to hear that! Thank you so much and so awesome. Over 6 years!!! đź’Żđź’Ż

Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/19/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right
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Apr 3, 2019 06:06PM Yndorian wrote:

All of you who are TNBC can try ldn (low dosis naltrexone). Ldn improves 400% your inmunological system specially natural killer cells. Unfortunely it seems not work as well in er/pr+ like mine because of the hormonal therapy

Dx 9/24/2018, IDC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 10/26/2018 AC + T (Taxol) Surgery 6/11/2019 Lumpectomy; Lymph node removal: Left, Underarm/Axillary Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Breast, Lymph nodes, Chest wall
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Apr 3, 2019 06:20PM wrenn wrote:

My "metaplastic" triple neg is supposed to be pretty aggressive. I am grade 3 (also aggressive). I was cut off chemo after first dose) and am doing fine 6 years later.

I am obese and pretty sedentary so have not really followed some of the ideas on what might save me so I think it really is a crap shoot. I also believe there are many people out there who are doing fine many years later but they don't visit forums either because they just do that or because they are not concerned.

I hope you will do well but I definitely understand the fears. I have a really bad cold right now and noticed that i didn't assume it was mets. :-)

Go easy on yourself. Worry is natural after a diagnosis. I listen to podcasts about mindfulness and meditation.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Apr 5, 2019 04:39PM yellowdoglady wrote:

I hear you, dlittkemann. The first three years I worried plenty, because that is when we are most at risk of recurrence. At three years out, I was able to exhale because I was walking out of those thorny woods. At five years out, I felt that TNBC was a bullet I'd dodged. I'm over ten years out now, and am still religious about my mammograms and see the oncologist once a year because if we can grow one rotten beastie, we can grow another. Plus, it's good to monitor your bone density after chemo. But aside from that basic vigilance, it's like it never even happened. You know, until I see the scars and those nifty tattoos from radiation.

The really good news for folks with TNBC is that it responds well to treatment, and we get the "all clear" news a lot sooner than our hormone positive sisters. Hang in there. There are lots and lots of survivors out there who don't stop by here much because they're doing fine.

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Apr 5, 2019 04:51PM dlittkemann wrote:

Yellowdoglady thank u so much for those words of encouragement. I’m so happy u are doing so well. It gives me such hope.

Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/19/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right
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Apr 5, 2019 05:48PM Sjacobs146 wrote:

I worried quite a bit about recurrence for the first two years or so following completion of treatment. I'll have my 5th cancerversary in August. The fear has lessened over time. Cancer has encouraged me to make some life changes. I have lost 20 lbs, I practice yoga regularly, I joined a rowing group, and I have a job where I need to walk 20 minutes each way from the train station. I'm healthier now than I was when I was diagnosed. I think it's very normal to worry. I still have my moments. I also ask myself whenever I'm trying to make a decision "if I am diagnosed with a recurrence tomorrow, would I regret not doing it? I live for the present more than I ever have before. It will get better! Give yourself some time

Dx 8/26/2014, IDC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 9/22/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 10/23/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/25/2015 Breast Hormonal Therapy 4/16/2015 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 5, 2019 06:47PM AliceBastable wrote:

Santabarbarian, how on earth is 1000mg of Metformin considered a low dose? I am diabetic and only take 500mg per day, which controls my A1C. At one point I had to take 2 pills a day, but my A1C was artificially high for another reason, and it self-corrected quickly, at which point I was told to go back to the lower dose. I actually have to be careful that my count doesn't get too low.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Apr 5, 2019 07:56PM santabarbarian wrote:

Well, some people do 1500... The anti metastatic properties are what I am after; I am not diabetic.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Apr 6, 2019 05:43AM dlittkemann wrote:

  • santabarbarian were you on that dose during chemo and did dr put you on it?
  • Also does your blood sugar go too low following keto w the metformin?
  • I want to do this too so any info helps. Thank yo
Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/19/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right
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Apr 6, 2019 05:45AM dlittkemann wrote:

sjacobs146 thank you for the great post of encouragement. I guess normal to worry but will be happy to worry less. And I also lost 35lbs doing keto, low carb and less sugar. I think lifestyle changes are key w cancer. Thank you again.

Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/19/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right
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Apr 6, 2019 07:43AM santabarbarian wrote:

Yes, I read about its anti-metastatic properties, asked my MO, and he agreed that it was a benefit and prescribed it. I went on it concurrent w beginning chemo. My blood sugar was a bit on the high side of normal, prior to chemo.... 96 or so. Which surprised me because I eat a very low sugar diet. It fell about 10-12 points, so I am still in normal range. I suspect I might have a little bit of insulin resistance genetically or epigenetically, as both my parents have diabetes (though they eat way too much crap) and I was exposed to DES in utero, which IS an endocrine disruptor...

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Apr 6, 2019 07:46AM dlittkemann wrote:

Ok got it. Thank u so much.

Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/19/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right
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Apr 6, 2019 08:44AM - edited Apr 6, 2019 08:48AM by santabarbarian

I want to point out that I was not on anything else, no meds at all, and that breast cancer is my first-in-lifetime serious event. So YMMV and everything should go through your MO, re dosages.

My MO went to the edge of his path with me. My strategy was to push up my odds, percent by percent. "If it won't hurt me and might help me I want to do it." My MO is the king of the double blind clinical trial as only source of truth. Had I not mentioned Metformin, he would probably not have. But he was a very good ally to me, stretching out of his comfort zone, because I insisted on making my own risk/ benefit decisions, relying on his firm advice, pro or con.

I knew I would assume a small risk by taking Metformin when I didn't "need" it but both I and my MO felt that hypothetical risk in my case was low, and the potential for benefit was statistically strong. For me, the likely benefit outweighed the potential risk by far.

I did a lot of complimentary practices through a naturopath during chemo, such as nutritional IVs, High dose C, and Hyperbaric Oxygen. I took supplements too. I followed the overall advice of Dr Keith Block, The Block Center, with whom I had a consult.

I also split my chemo into two appointments, am/pm. And on my own, I did a low-tech hyperthermia to the tumor & my nodes. A lot of this NOT standard for my MO!

Dr Block has a book, for anyone curious. "Life Over Cancer." He has had a lengthy MO practice using IVs, diet, exercise, and supplements and other innovative techniques... and the evidence in his own patients and practice was both verified and strong (though not double-blind). Obviously people who can access a consult out of state are not a random sample but a privileged sample. Then again, a lot of his patients are late stage, and their stats are also excellent.

I was lucky also to have an acquaintance who is a MO, who was a generous sounding board for me. She in fact suggested keto. She helped me have the confidence to pursue the path that felt instinctively right, when in the grey area beyond double blind clinical trials. Of course I did all the chemo, surgery, & rads too!

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Apr 6, 2019 08:55AM dlittkemann wrote:

yes my dr is not the same. He’s very nice. And agreed to hit me hard and I knew from my own research I want to be on metformin. Did keto all way through chemo and feel it helped a great deal.

Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Dx 4/2018, DCIS/IDC, Right, 6cm+, Stage IIIB, ER-/PR-, HER2- Chemotherapy 6/25/2018 Radiation Therapy 1/19/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right

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