Just joined, My wife has TNBC, looking for info....

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TNBCDad
TNBCDad Member Posts: 10
edited March 2016 in Triple-Negative Breast Cancer

Hello Ladies. Writing from BC, Canada. I hope it's alright for a fella to join up...my wife's not much of a internet forum type...but I am. Another member here that I met in person last week pointed me towards your site....so here we go


We got diagnosed with TNBC 6 months ago....we are slowly loosing ground....We've been through Paclitaxel, AC and Cisplatin/Gemcitabine. Both Pac and C/g had some effect, but only on the first application, then the shrinking slowed and stopped. AC was a flop and allowed the tumours to grow. By the way, this is breast cancer with several lymph nodes as well. We are just half way through a cycle of C/G, the plan is to ultrasound the tumours again in a few days, but if that has not shown some or any reduction, then stop chemo, move to pre-surgery radiation. The tumours where big enough that the OC decided to leave them in, to monitor the chemo progress (or lack there of). I'm quite certain that we will be stopping chemo here soon, as my observations tell us that there is no reduction in the last week.

We are also working with a Naturopathic Doctor to support the immune system at this point. We have also discussed Hypertherapy , but have not tried it yet.

If we keep going with chemo, we will try some HT as well....I have wanted to for a while, but there has been push back from the OC to not introduce another treatment to the "mix"....well the mix isn't working, so time to step it up!

As it will take a few weeks to get into the radiation rotation, i'm also quite scared about having several weeks with no chemo in her system, as that might be the time the cancer is waiting for to spread.....Seriously thinking about asking to start Mistletoe therapy in lew of chemo....keep that going all through radiation, then move to HT, depending on how the radiation does.


So that's our story, she's 39, we've got 2 little kids. She's pretty beat up with chemo, and when she feels good she's out the door doing something that makes her feel better...so I'm the bulldog...I dig and find the info and try and put the plans together...and keep the house glued together as well. I told her that the "plan" was for her to bury me, many decades from now, and then have to deal with all my "stuff"...I intend to keep the promise...and I got a lot of stuff.


So, let the info flow. Point me towards links, treatments that have worked, natural treatments and alternative ideas...wondering about trials as well


thanks girls, keep fighting

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  • Italychick
    Italychick Member Posts: 2,343
    edited February 2016

    have they tested her for androgen receptors? I have seen women post here that had their biopsies/tumors looked at for androgen receptors. That might open up another treatment avenue to explore. I think the drug/chemo to try if she has them is Xtandi. Is her breast cancer confined to the breast and lymph nodes, or is it in other places in her body too?

    I have thought about having my tumor tested for androgen receptors because I was considered barely her2 positive after multiple levels of testing.

    Also, have they biopsied several areas because sometimes tumors can be mixed? If they were to find any areas that may respond to other drugs such as Herceptin, that could also be worth a try.

    Best of luck, will be thinking of you and your wife.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited February 2016

    Hey! Welcome, by all means join us. I'm so sorry your wife is going through all this, but you sound like a wonderfully supportive husband. There's a forum on here that especially for TN ladies and those who love them, I can't post the link from my phone, but do a quick search. There's a wealth of experience out there. I'm sure you will discover the treatment that works for her. :)

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  • Meadow
    Meadow Member Posts: 2,007
    edited February 2016

    TNBCDad, Welcome! There is a ton of info and support here. I strongly encourage you to pop and introduce yourself on the thread, "Calling all TNs" here on BCO...it is a very active thread with some very informed and supportive women, AND a few MEN, lol. You will be glad you did. my best to you and the wife, Please pass on a cyber hug (((HUG))) to her. Hoping she sees results and feels better soon.

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  • Fallleaves
    Fallleaves Member Posts: 806
    edited February 2016

    Hi TNBCDad, I think it is great that you are being so proactive with your wife's care. A good husband is worth his weight in gold (even if he is a pack-rat!)

    First, I'm not TN, but I have read some things I thought I would share with you. So, take them with a grain of salt.

    Here is a really long paper on overcoming radiation therapy resistance. It's a very in-depth explanation of what goes on at a cellular and molecular level with radiation therapy. It also mentions COX-2 inhibitors such as celecoxib as being radiosensitizing, as well as several natural products that may act as radiosensitizers (curcumin, reserveratrol, genistein, and quercetin). These enhance the effectiveness of radiation therapy while reducing damage to normal tissue and inhibiting the inflammatory pathways that may lead to metastasis.

    Therapeutic Implications for Overcoming Radiation Resistance in Cancer Therapy

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC466185...


    Curcumin has also been studied as an effective way to reduce radiation dermatitis. The patients in this study took 6 g. a day, without any toxicity. Curcumin is much more bioavailable when taken with piperene or in a meriva formulation, so taking that much might not be necessary.

    Curcumin for radiation dermatitis: a randomized, double-blind, placebo-controlled clinical trial of thirty breast cancer patients.

    http://www.ncbi.nlm.nih.gov/pubmed/23745991


    I'm a huge fan of turmeric/curcumin. Unfortunately, most of the studies are in vitro, or in mouse studies. But there are a lot of studies indicating curcumin is cytotoxic against breast cancer cells and inhibits breast cancer stem cells, and could moderate the negative effects of chemotherapy. Here are a few studies (MDA-MB-231 is the triple negative cell line):


    Curcumin suppresses the paclitaxel-induced nuclear factor-kappaB pathway in breast cancer cells and inhibits lung metastasis of human breast cancer in nude mice.

    http://www.ncbi.nlm.nih.gov/pubmed/16243823
    (Aggarwal, 2005)


    Curcumin suppresses the paclitaxel-induced nuclear factor-kappaB in breast cancer cells and potentiates the growth inhibitory effect of paclitaxel in a breast cancer nude mice model.

    http://www.ncbi.nlm.nih.gov/pubmed/19645775
    (Kang, 2009)



    Curcumin inhibits breast cancer stem cell migration by amplifying the E-cadherin/β-catenin negative feedback loop.

    http://www.ncbi.nlm.nih.gov/pubmed/25315241
    (Mukherjee, 2014)



    Curcumin targets breast cancer stem-like cells with microtentacles that persist in mammospheres and promote reattachment.

    http://www.ncbi.nlm.nih.gov/pubmed/24371229/
    (Charpentier, 2014)


    Curcumin inhibits proliferation and migration by increasing the Bax to Bcl-2 ratio and decreasing NF-kappaBp65 expression in breast cancer MDA-MB-231 cells.

    http://www.ncbi.nlm.nih.gov/pubmed/19288022
    (Chui, 2009)



    Curcumin Suppresses Proliferation and Migration of MDA-MB-231 Breast Cancer Cells through Autophagy-Dependent Akt Degradation.

    http://www.ncbi.nlm.nih.gov/pubmed/26752181
    (Guan, 2016)


    I have a few other thoughts, but I will put them in a separate post. Wishing you, your wife, and kids the best!


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  • TNBCDad
    TNBCDad Member Posts: 10
    edited February 2016

    Thanks Fallleaves, I'll work my way through these tommorow....

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  • Polarpegs
    Polarpegs Member Posts: 3
    edited February 2016

    Hi TNBCdad. So sorry to hear of your wife and the journey you are both on. Since we are both from.the interior I.assume she has been to the cancer clinic here in Kelowna. Has she seen a surgeon yet. I am curious to know who her oncos are and what your thoughts are about their specific treatment plans. My TNBC was caught fairly early but was still invasive grade 3 but had not invaded lymphnodes. I was advised by a good friend who is a cancer nurse that the best approach was to cut out the cancer asap which they did and then went back for more. This whole cancer thing is so often confusing to me and fascinating at the same time.

    I Hope you find some answers for.your wife and most importantly healing and well being.

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  • wrenn
    wrenn Member Posts: 2,707
    edited February 2016

    if you are near Kelowna you can check out inspire health. They have some good programs and it is free. Best of luck to your wife

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  • Fallleaves
    Fallleaves Member Posts: 806
    edited February 2016

    TNBCdad, I think Italychick is right about testing for androgen receptors (AR). Even a tiny fraction of AR+ cancer cells will make anti-androgen therapy effective. The commonly used anti-androgen drug for breast cancer is the same one that is used for prostate cancer, enzalutamide (Xtandi). Another anti-androgen drug is Cyproterone acetate.

    In triple-negative breast cancer, even low-androgen tumors respond to anti-androgen therapy

    http://www.sciencedaily.com/releases/2015/02/15022...


    There are some other receptors that may have an effect also:

    Estrogen beta receptors (ER-beta)---even though your wife if negative for estrogen alpha receptors, she may have cancer cells that are positive for ER-beta. There is research showing that estrogen beta expression may make cancer less proliferative. There's a clinical trial (in Texas) for TN patients that are ER-beta positive. It's to test the use of S-equol (a bioavailable component of soybeans) on KI-67 levels (which is a marker of tumor proliferation). Patients will take 50 mg of S-equol twice a day, to see if it reduces tumor proliferation.

    https://clinicaltrials.gov/ct2/show/NCT02352025?te...


    Glucorticoid receptors (GR)---stress hormones can activate these, as well as glucocorticoids (such as dexamethasone), which are commonly used in BC patients to reduce the side effects of treatment. It is thought that blocking these receptors could improve the effectiveness of treatment. There are several clinical trials combining the GR antagonist mifepristone with either eribulin or nab-paclitaxel.

    https://clinicaltrials.gov/ct2/show/NCT02014337?te...

    https://clinicaltrials.gov/ct2/show/NCT01493310?te...


    Glucocorticoid receptor antagonism as a novel therapy for triple-negative breast cancer.

    http://www.ncbi.nlm.nih.gov/pubmed/24016618

    Genomic and non-genomic effects of glucocorticoids: implications for breast cancer.

    http://www.ncbi.nlm.nih.gov/pubmed/25755688


    Beta 2 Adrenergic receptors (AR)---receptors for the stress hormones epinephrine and norepinephrine (types of catecholamines). Stress hormones have been implicated in promoting tumor growth and metastasis, and blocking them with beta-blockers (used commonly for cardio-protective purposes) may prevent this from occurring. The beta-blocker studied the most for a benefit in breast cancer has been propranolol. There are currently 3 clinical trials involving propranolol and breast cancer. One combines the use of beta-blockers with COX-2 inhibitors. Breast cancer cells commonly over-express COX-2 (which causes inflammation and cancer promotion), so COX-2 inhibitors may be another avenue to repress cancer. There are some researchers who think beta-blockers and COX-2 inhibitors work synergistically against BC.


    β-Blockers Reduce Breast Cancer Recurrence and Breast Cancer Death: A Meta-Analysis.

    http://www.ncbi.nlm.nih.gov/pubmed/26516037


    A new approach to reducing postsurgical cancer recurrence: perioperative targeting of catecholamines and prostaglandins.

    http://www.ncbi.nlm.nih.gov/pubmed/22753587



    Neoadjuvant Propanolol in Breast Cancer (NPBC)
    https://clinicaltrials.gov/ct2/show/NCT02596867?term=propanolol&rank=12


    Propranolol Hydrochloride in Treating Patients With Locally Recurrent or Metastatic Solid Tumors That Cannot Be Removed By Surgery
    https://clinicaltrials.gov/ct2/show/NCT02013492?term=propanolol&rank=68
    William Carson, Ohio State University Comprehensive Cancer Center


    Perioperative Administration of COX 2 Inhibitors and Beta Blockers to Women Undergoing Breast Cancer Surgery
    https://clinicaltrials.gov/ct2/show/NCT00502684?term=propanolol&rank=143
    Tanir M Allweis, MD, Kaplan Medical Center (also at Sheba Medical Center, Rabin Medical Center) Israel


    Sorry if I have overwhelmed you with studies!





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  • TNBCDad
    TNBCDad Member Posts: 10
    edited February 2016

    Hi Wrenn, yup, we've been through the Inspire Health program, quite good. Met quite a umber of people there that have and are doing the alternative treatments, so that's made us keen to try them as well if the chemo bonks again


    That is alot of studies!! I'll work my way through them and will ask about the Androgen receptors on Wed

    Hey Pegs...Thanks for the good thoughts. Ya, we saw a surgeon right away after the diagnosis, but as the tumour was already around 4cm and showed invasion of the lymphs, he was keen to have it reduced first, before surgery. This was echoed by the Oc in Vernon, and with the TNBC , the second reason to leave the tumours in , was to monitor if the chemo was working. So, how to I feel about the systemic choices....? Hell, I dont know. Originally we just wanted the damn thing out , and now that the chemo has been only partially effective, it's bloody scary realizing that the tumour was allowed to grow....However, looking back now we look at it as positive. I think it would be far worse to have removed the tumour, and done all this chemo...and then found out it didn't work. It's freaking scary that those lymph nodes are swelled and have grown...but I met a woman a few weeks ago who had something similar happen, had a whole wack of nodes takes out...she said "I love my lymph nodes!!! swell them all up! They are doing their job of keeping this crap out of your wifes' body until you can find the treatment that will kill it". So that's how we are looking at it right now.....

    So fingers crossed that the chemo is working a little bit still, and maybe we can double team this thing with Hypertherapy next week

    Ya, it's fascinating to us as well, but it's a scary ride. We are trying to look at it as something that will give us an incredible story to tell kids/people years down the track, and brings us closer together as we fight through it....not unlike a bad car crash or some other injury


    Thanks for all the good replys folks

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  • RuthElizabeth
    RuthElizabeth Member Posts: 103
    edited February 2016

    polarpegs, we seem to be similar in prognosis. I did four rounds of AC. Finished Labor Day weekend. I'm back to work, but have anxiety problems.... Guess I'm lucky that's it. Gyno suggested having my overies removed. Insurance denied it and now came back and approved it. Cancer doc says not necessary. I'm confused and scared to death.... What are your thoughts. Thanks, Ruth

    TNBC dad, hang in there. Glad to hear your so positive. I don't have that support at home. Fight hard....

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  • TNBCDad
    TNBCDad Member Posts: 10
    edited February 2016

    Well, here we go. Chemo was not effective, so that's that. Sounds like we are headed straight for surgery instead of radiation first. I think I like the sound of that...really didn't want to see radiation first. hope to be into surgery in 10 days or less. Even though it's not the greatest news that the chemo wasn't working (we knew that), my wife was sooo happy , just because she doesn't have to do chemo tommorow!! It was starting to really wear her down, and knowing that it wasn't working that quickly on the tumour just made her more miserable. The surgeon comes highly recommended and is a cancer specialist, so if anyone can get it all out, it's him

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  • Fallleaves
    Fallleaves Member Posts: 806
    edited February 2016

    Hi TNBCDad,

    Glad your wife got a reprieve from the chemo. Hope she can recoup a bit before surgery. I just wanted to suggest that you all talk to the anesthesiologist before surgery to discuss what options she might have for anesthesia. Surgery can be a really critical time, and the anesthesia chosen could affect later recurrence. There are a couple of threads you might want to look at (I'll link them below), but just to summarize: 1) Surgery can be curative in and of itself, but it also has immunosuppressive effects, and the wound healing factors that result are the same ones that drive cancer growth and metastasis. 2) Some types of anesthesia may contribute to immunosuppression (opioids, inhaled gases, dexamethasone) while others may reduce pain, inflammation, and possibly future recurrence (paravertebral nerve blocks, propofol, ketorolac, tramadol, celecoxib, propranolol). 3)Some doctors are also working on enhanced recovery pathways for breast cancer patients to improve recovery. There's one at the Mayo Clinic and Johns Hopkins University is working on one.

    Anyway, I don't want to overwhelm you with more info, because I know you have a lot on your plate! Just want to share the links and encourage you to discuss your wife's options with the anesthesiologist ahead of time. It's something a lot of people don't think about because there are already so many things going on. Hope your wife is feeling much better very soon! Glad she has a really good surgeon!


    Paravertebral Nerve Block: https://community.breastcancer.org/forum/73/topics...

    General review articles on anesthesia and recurrence:https://community.breastcancer.org/forum/73/topics...

    Opioids and cancer progression: https://community.breastcancer.org/forum/73/topics...

    ketorolac (tramadol): https://community.breastcancer.org/forum/73/topics...

    Mayo Clinic enhanced recovery plan: http://journals.lww.com/oncology-times/Fulltext/20...


    Also, don't forget about the clinical trial I mentioned in the above post, where they are using COX 2 inhibitors and beta-blockers during surgery to reduce inflammation and block stress hormones. The trial is going on in Israel, but you could still request the combination of drugs from the anesthesiologist, as they are commonly used, and not expensive. (The Mayo Clinic recovery plan uses celecoxib, a COX 2 inhibitor).

    https://clinicaltrials.gov/ct2/show/NCT00502684?te...;rank=143


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  • TNBCDad
    TNBCDad Member Posts: 10
    edited February 2016

    Well, guess ya just never know what the plan will be....The surgeon wants the tumours shrunk more, before attempting surgery...we are not surprised. Sooo, off we go to radiation first. Had the second consult done, tatooed, so now we have to wait a couple of weeks for the gemcitabine to clear the system (apparently it can cause bad radiation burns). No one is that comfortable sitting around without any treatment in her system......not a great feeling. But the Oncologist did surprise us with an interesting idea...seems there is a large trial running here in BC where they are mapping the entire genome of cancer tumours. Then looking for "drivers" in each tumour, comparing them to others in the study. Seems like this is the answer to my "Androgen Receptor " question. Now we should get that checked, and hopefully every other "receptor or driver" as well....could be the missing information we are looking for to beat this thing.....And the other point is that in order to get into the trial, she has to be clear of chemos for several weeks...The Oc figured, as we have to wait anyway, this would be a good use of the time...if we can get her in quickly...we don't want to delay the radiation at all....

    I guess the other thought was that with such a high possibility of these TN cancers coming back, getting all the information we can now, while the tumours are easy to access....if it shows up again, getting information from it might not be too easy...

    SO, we sit and try not to think to hard...it seems like a good plan and that makes us feel a bit better....

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  • Meadow
    Meadow Member Posts: 2,007
    edited February 2016

    This is good news, and may be of great benefit to her and many others. Hoping we learn so much from her!

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  • Fallleaves
    Fallleaves Member Posts: 806
    edited March 2016

    Hey TNBCDad, I hope all is well with you and your wife, and she is feeling better these days. That clinical trial sounds incredible! She will know so much more about her cancer than most patients, with the benefit of more effectively tailoring treatment. That's a huge advantage. Good luck to her with the rest of treatment! I hope the trial leads to her cure, and to many others'.

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  • TNBCDad
    TNBCDad Member Posts: 10
    edited March 2016

    Sorry Girls, been away and busy. Got the genetics test done, hope to have some results in a few weeks....started rads the other day...

    Fingers crossed it doesn't like being radiated!!


    Thanks for all the good thoughts


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