Calling all TNs
Comments
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Santabarbar, everything is going well for me finished xeloda in July, and mammogram and ultrasound scheduled for sept.16. Ive got a little pain still in lymphnode site. But overall feel good with stiffness in joints. Been camping this summer and plan to continue thru Oct.
How are you doing Santabrabra?
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I am doing well too. I am feeling pretty normal. Still seem to need a lot of sleep (more than before) but my energy is good. I had my 1 year checkup and a mammo - clear.
I too have a little numbness/tingles at axillary site and in my upper arm, but it does not bother me. So glad to hear things are going well for you too!
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Hi ladies, just popping in to say hello. I haven't been on here in ages but I never forget. Those who are in treatment, hang in there. All my best.
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Always wonderful to hear from you long term thrivers!!!
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Sugar77 santabarbarian is exactly right!! Thank you for checking in and giving us hope and inspiration!!
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My scans were both normal, yay! But they tried twice to get a vein for blood draw and contrast for the mri, and both times hit valves, so I have two lovely (not) bruises. And, I was wrong. I did graduate to yearly mri and mammograms, but I still see my MO in six months. That is fine. Her ARNP didn’t my exam, and said she can see the edema in my breast. Ugh. At something point, I became lax about doing my manual lymphatic drainage and just quit doing it altogether. This explains the pains I’ve been having in my breast. I really should call and get an appointment with PT to get a jump start on getting it back under control, but they are pretty booked up. They have a great machine that works wonders.
Sorry to ramble on. She did have some alternatives for hot flashes. The gabapentin I had been taking, a micro-dose of Effexor, or acupuncture.
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Vizsla I am so happy to hear your clean scan news!!!
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Hello all, my first post here. This 2019 article (link attached) may explain WHY I have such a high oncotype score, high Ki-67, and grade 3 tumor (all hallmarks of being triple negative), despite having very high ER levels. I had already discovered that I have 3 mutations in my FGFR2 gene, all 3 of which predispose to breast cancer. According to this new article, these mutations render ER useless (at the nuclear level). As PR depends on the presence of functioning ER, this could also explain why I am PR-. So, if I have ER, but they don't work, am I essentially triple negative?
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Has anyone looked into the vaccine trials (for prevention of recurrence) of TNBC? I believe one is at Mayo?
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Santabarbarian there is one at CTCA as well. I will try and learn more over the next few weeks and get back to you.
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Santabarbarian - My MO referenced on at the University of Washington. He was keeping his eye on it, but didn't recommend I join in. I'll look for the link.
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I didn't know about it, but found this: https://www.mayo.edu/research/clinical-trials/cls-20366156
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murfy sorry I do not understand the question you posed. Good luck sorting it out. If it's any help, most of the chemos can be used across different 'types' of BC. Though TNBC, the one I got is often given to Her2+ women. It may not be that important other than re the use of anti hormonals.
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I had my first post-chemo, post radiation follow up with my oncologist at MSKCC. Her recommendations were only: exercise, less than 7 glasses of wine per week, low fat diet. She said no to Melatonin, metformin, low asparagine diet, and a million other things I had researched. I can't be in copper depletion trial and she doesn't recommend I do it on my own. And I'm surprised up to 7 glasses of wine/week were okay with her (even as I'm happy about this, I still feel I should stick to much much less, probably will) So this is the standard of care from a triple negative expert at Memorial.
I'm a physician myself, as is my husband, not in oncology, and I'm turn between the abstemious, if we don't have enough rigorous studies, don't do it mode I was trained in, and my worry about such conservatism. MO emphasized that by doing chemo and radiation I had already done the most important preventive treatment I could do for a node negative triple negative tumor. My husband will be thoroughly annoyed with me if I start taking melatonin or doing other things. Not necessarily meaning I won't, I'm just reporting my location at the intersection of traditional medicine, my own medical training, my fear, and my healthy skepticism about doctors sufficiently appreciating complementary practices.
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Hello Sugar77,
It was so nice to see you popping in after all this time. I do remember your posts from many years ago.
I do hope all is well with you. I am now just over 14 years since diagnosis and doing well.
Thinking of you and sending best wishes.
Sylvia xxxx
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farfalla,
My home town MO was an eye-roller when I had the onsult with the Integrative MO and followed his advice. But at my one year check up he told me, "I am certain those practices helped you. Your response to treatment was much better than I would have ever predicted."
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Farfalla - nice to get your input. fwiw, I'm sticking to zero alcohol for 2 reasons: WHO is pretty adamant that no safe level is known & it is a carcinogen, and it's empty calories.
Did you get a specific guideline on how much exercise & what intensity?
I'm waffly on the melatonin. The studies I saw were using fairly high doses. I'm taking 3 mg about most days of the week because I'm in nursing school and the switching shifts and weird hours are messing with my sleep. I figure if it helps me sleep and maybe also helps with recurrence, then maybe it's worth it? Did you get the sense that your MO's opinion was that melatonin was useless or that it had actual neg effects?0 -
Mo MO, who is very conservative, had no problem w metformin or melatonin. Both have strong evidence.
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santabarbarian, you've probably given links before, but can you give some again on the research for metformin? Thanks.
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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.
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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.
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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.
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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
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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
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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
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Gamb can you get out and take a good long (or short) walk? might change your mood and certainly will be beneficial to you!!
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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.
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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.
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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!
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