Calling all TNs

santabarbarian

PS my MO said copper chelation is horrible for you; very risky. He said that's the one thing I have asked about that he would really be adamantly against. He told me that stuff like mebendazole or doxycycline might be things he'd support if I had active cancer in my system, but not when I'm NED-- too risky. (Both can give you longer term blood problems with extended use.) However he gave me a Metformin scrip right away (upon my inquiry) at the beginning of chemo.

Where he really changed his tune is on the supplements I took, which were recommended by an integrative MO I consulted. He went from "eye-roll" tolerance a year ago to now telling me they were likely a big factor in my response and that he thought I should stay on all of them. (At one point my liver enzymes went up and he looked at every supplement in detail to rule out that being caused by any of them, and he told me they were all very safe. ) I think it opened his eyes as my cancer was pretty advanced (old rubric 2B; new rubric 3C) when I first met him, and it got wiped out. I took a ton of anti oxidants, food supplements like reishi mushroom, as well as High dose C IVs (pro oxidant level). The integrative MO was also really big on exercise too, including regular interval training during chemo and a whole foods rainbow/pescatarian diet with low meat and dairy.

Farfalla6

Moth, MO said melatonin was harmless, and if I needed it for sleep, no problem. She just didn’t think it was useful in terms of prevention. Since I’ve been taking a v small dose of trazodone for sleep anyway, I’ll switch to melatonin

As for exercise, she didn’t say how much. But she put me in touch with a Memorial researcher doing a trial ( observational I think) on exercise and I have a call with him on Monday and will report back. I am trying to exercise intensely ( heart rate up to my max) at least 3 times a week and then the other days I generally walk briskly every day a few miles (4-5) around city in course of errands, walking to and from office. His research is looking at exercise dosing as if it’s a medication and I’m very interested in this. I love the idea of actively DOING something.

santabarbarian

Re exercise, the sweet spot appears to be 3-6 hours of moderately intense per week. For lowest rates of recurrence.

Interestingly the actual pressure generated in large muscles from vigorous weight bearing exercise is such that it crushes the cancer cells (literally). Sort of an inspiring way to look at an hour on the elliptical machine: cancer crushing.

t9jorda

My dear friend,

I read your post and felt the heart vs. the brain tug of war of what should I, could I do now... and remember that feeling as if it was yesterday. I too did a lot of research and this is what I settled on, and have been successful with it for 13 years having had triple negative breast cancer too...I obviously have no idea how much it is helped (and will never know), but it has done no harm.

I take the following daily before bed (a Cancer Dr. said this is what she would take if it was her, in an offsite, offline, away from the office private conversation, NOT medically prescribed). The products seem well balanced to aid in having a long life:

2000 mg Flaxseed Oil

3600 mg Alaskan Salmon Whole Fish Oil 100% Wild

300 mg Magnesium Citrate High Absorption

Quercetin 800 mg / Bromelain 165 mg

Multi Vitamin (pick a good one)

1000mg Glucosamine / 800mg Chondroitin / 800 mg MSM

No Alcohol

Extra servings of Fruit and Veg - Aim for 2-3 servings at EVERY meal

10,000 steps per day exercise

The key take away, is that what you take and what you do needs to sustain your whole being in a healthy way. Brain health, heart health, physical health are all interlinked.... make the whole body as healthy as you can be.

Hope this helps in your wellness planning.

Hugs, TLJ

Gamb

Hi all, must be just a down down day after my first chemo Thursday, today I see me to be just thinking to much of the dx tn, can't seem to shake it

InspiredbyDolce

Hello Sugar77 and Friends!

Sugar, I wanted you to know, that I immediately recognized your name! When I was dx'd in 2011, I did a lot of research on here, and came across profiles of those who had similar dx and same treatment of chemo in terms of the type. Many names on the list were 2-5 years out, so the list was reassuring to me, and when I had moments of anxiety, I opened up my file where the list was, and saw that it was possible. I continue to have that list and it's still a comforting blanket for me.

I will reach 8 years in a few months, and so thankful there was an organization of which to find information through.

All bc friends, know that even though many of us don't come on here regularly anymore, that every day you are always in my prayers. And I continue to randomly come across 20, 25, 30, 35 year TNBC survivors.

XOXO,

Dolce

santabarbarian

Gamb can you get out and take a good long (or short) walk? might change your mood and certainly will be beneficial to you!!

InspiredbyDolce

Santabarbarian,

So interesting you referenced that. I read an article a few weeks ago where they did an actual test (not sure how it was done), but it showed that in 7 minutes of intense exercise of the upper muscles, that the force was strong enough to crush the cells. This was on a weight bearing exercise.

At the moment my intense exercise of choice is the rowing machine. I was an elliptical person through and through, but got bored with that. The rowing works 85% of muscles, so that also intrigued me.

InspiredbyDolce

A BIG

to SylviaExMouthUK, for her 14 years healthy victory, and leading the way!

She was one of my GoTo Resources when I was dx'd.

santabarbarian

Inspired, we have the same approach... yes I had heard that. Its due to malignant cells having weaker cell walls. Inspiring to get up and move!

moth

I posted the article about the 7 min of intense exercise on this board a while back. I think it's in several threads but always good to bump it up as it has intriguing implications for possible metastatic prevention


https://www.fasebj.org/doi/abs/10.1096/fasebj.2018.32.1_supplement.644.10

Take away from this one is to do resistance training which raises the heart rate to 120 for 7 minutes minimum. That's the time required for almost all the blood volume to circulate through the exercising muscle. The exercising muscle (including the heart) undergoes physical changes which makes it likely that any circulating tumor cells would be burst by the pressures in the muscle.

sylviaexmouthuk

Hello InspiredbyDolce,

It was a nice surprise to see you on the TNs. Thank you so much for your kind words.

I do remember the quality posts that you used to post. You always had something interesting to say.

I do hope you are well and please pop by and say hello when you can. It is so important for the newly diagnosed to hear from long time survivors.

Sincere best wishes.

Sylvia xxxx

jrominger

Sylviaexmouthuk, Inspiredbydolce, Santabarbaria, Moth, Thank you for all the positive feedback and information. You do inspire all of us going through the treatments for TNBC now. My wife will do #9 of her 12 Taxol's tomorrow so we are nearing the chemo finish line. My wife is big work out person and has done around 4 miles of walking most every day during chemo. Minus her setback early on. We will definitely add in the 7 min 120 heart rate regimen into our workouts post treatment. THANK YOU for coming back and encouraging all of us. It is amazingly kind of you.

Jay

VL22

I just saw that Suzanne Whang died from breast cancer. 56 years old. She was diagnosed in the fall of 2006 - I always wondered why she was no longer hosting House Hunters.

No idea what “type” of breast cancer. Does anyone else feel the need to obsessively google when you read that someone had died from breast cancer? Is it morbid that I want all the details?

Hope everyone is doing great and planning to enjoy life this weekend

PiperKay

I just saw that report as well. And yes, I also Google every case of breast cancer death I come across. When I hear of a woman's passing from cancer, I assume it's breast cancer. Like Cokie Roberts yesterday. Morbid? I don't think so because that word means having an abnormal or unhealthy interest in death or disease. It is certainly not abnormal for us here on this site to be interested in breast cancer or related deaths. If we take it to an unhealthy level, then that's another story.

Definitely intend to enjoy life this weekend as we plan for our trip to Italy in 10 days that was postponed from March due to being in the midst of chemo.

VL22

Italy - lucky girl! Have a wonderful time

MountainMia

I had IDC and my screening mammogram and diagnostic showed microcalcifications but did not show the tumor. The US did, and I had biopsy with US. I have dense breasts and TN.

What is standard of care for imaging with dense breasts, history of cancer, and TN? Just mammograms? That and US? That and MRI? What should I expect?

moth

Mountain Mia, I have discussed this with my MO. I had a 'clean' mammo & literally few months later I could feel a palpable lump, so I think the suspicion is that mine was missed on mammo. And yes, I have dense breasts too.

For this year (which is year 1 after treatment) we've settled on diagnostic mammogram then 6 months later an MRI with contrast. I lean towards keeping that as an alternating sched every 6 months and maybe once in a while adding an ultrasound to the mammo. I'm considering tomosynthesis as well - maybe swap out one of the mammos. My GP will see me a min of every 6 months and do a breast exam plus full exam of all lymph nodes and palpate abdomen etc.

I don't think there's one good answer. I'll be interested to hear what others are doing.

Oh & just wanted to add, it's not just recurrence that we need to worry about. We're at much higher risk of another primary. According to the BC Cancer Agency "The average 50 year old woman who has had breast cancer once carries approximately a 10-15% risk of a second contralateral breast cancer (invasive or DCIS) over the next 25 years."

MountainMia

Thanks, moth. I had to look up "tomosynthesis." It's 3D mammogram, which I'm pretty sure is what my facility has been using for a few years. Here is a link that says more about it.

https://www.radiologyinfo.org/en/info.cfm?pg=tomosynthesis

Yes on the new primaries risk. Great, huh?

Edited to add: I've looked this up and it turns out that University of Iowa Hospitals and Clinics was "First hospital in the U.S. to perform digital breast tomosynthesis imaging, which allows physicians to "page through" the interior of the breast without the superimposition of the other tissues."

LRM216

While I haven't been on the site in quite some time, I just wanted to drop in and send my very best wishes and gentle hugs to all newbies and to all the "old timers" that I shared my deepest fears and thoughts with on a daily basis for many years through my diagnosis, treatments and for several years afterward. I am now 10 years and seven months out from the beginning of my "nightmare" and am so very thankful for the time I have been blessed with. I wish and pray the same for each of you. God bless - to all.

Fondly,

Linda

jrominger

LRM216. Bless you for your coming back and spurring us on!! Thank you for your encouragement. It’s awesome and May God continue to bless you and yours.

sylviaexmouthuk

Hello Linda,

I was updating myself on the TNs when I saw your photograph and recognised you immediately. It is so good to hear from people that I remember from way back. Congratulations on your 10 years and 7 months since diagnosis. I am now 14 years and 3 months since diagnosis.

InspiredbyDolce posted here recently and she is another of the long time survivors. Quite recently, as well, Sugar from Canada also posted, she is another long time survivor.

For me, it brings back memories of when TNs was in it early days having been started by Titan.

I am still doing the thread I created 9 years ago, inspired by Titan.

Love.

Sylvia xxxx

Gamb

Thank all you ladies for given us Tn a hopefully outlook, may God continue tonbkess you all and all of us yet to come

urdrago71

Thank you for stopping by and letting us know your doing well. We need more survivor stories!

LoveMyVizsla

Ran across this article on FB today:

https://www.curetoday.com/publications/cure/2019/immunotherapy-2019/breast-cancer-gets-a-boost-from-immunotherapy

Mountain Mia, I have dense breasts too. My tumor couldn't be seen on mammo. So I just finished my last six month imaging and that schedule was every six months a mammogram on the affected side, and every a mammogram and an MRI on both sides. Now that I’m back to yearly imaging, it will be the annual mammogram + MRI. I have the paper they give out at my center, I will take photos and attach for you.

LoveMyVizsla

VL22

According to my breast surgeon, most women have dense breasts. Mine are also category C. My tumors were found during mammogram, but they followed up with US. I also got an MRI, which did nothing but delay my surgery by a few weeks and made me go mental, because it showed a few false positives.

I’m on the mammo and Dr visit every six months rotation. No US or MRI or anything else. I’m ok with this. I try to concentrate on what is within my control - eating right, exercising etc. I even stopped drinking alcohol. Knowing that I’m at a greater risk for another primary really pisses me off, so I don’t think about that 😃.

so_chickadee

Hi everyone. I was diagnosed at 43. Never felt a lump. It was found by a screening breast MRI, since I am BRCA positive. Biopsy confirmed IDC. After mastectomy they found another tumor wich was DCIS. Chemo is coming next week consisting of taxotere and cytoxan x 4 cycles. My family history includes breast and brain cancer - mom, breast and uterine - granny and ovarian, colon in granny's sisters. Hopefully the chemo kills all stray cancer cells in my body. 

sylviaexmouthuk

Hello Chickadee,

I have just read your post and just wanted to send you best wishes and support as you start your chemotherapy.

I do hope everything will go smoothly with you. Just take one day at a time and tell yourself you are going to be fine.

You can get through this. I am now over 14 years out since diagnosis.

Thinking of you.

Sylvia xxxx

Gamb

bless you Sylvia for keep coming back and giving hope to those of us who are triple negative, you are truly and inspiration, thank you