Calling all TNs
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Merry Christmas everyone and I pray we all have a better new year.
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Hello Dear Friends Old and New, and Sylvia (UK Boards who checks in on all of us here):
Congrats to everyone who has recently received and posted excellent news, and many prayers for those who are just starting their treatment.
Today I'm posting that I reached my 8 year milestone. It's an emotional moment for sure.
I think of everyone often, and always praying for a cure.
Keep on supporting each other and sharing information - it's how I knew what to do, what to ask, and how to lead.
Much love and prayers,
Debra
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inspired by dolce. Thank you for your post!!! It inspires all of us and gives us hope!!
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Inspired, thank you for posting. I am so happy for you and your long term health!
I love your signature info... what you are doing is exactly what I am doing. It feels good and self loving to respect my body's nutritional and physical needs. I would add sleep hygiene to the list; melatonin and a cold pitch black room. And supplements, as per an integrative or naturopathic physician's recommendations re your particular cancer and systemic needs.
I feel incredibly vital and well, *much* better than before cancer. I am even grateful to BC, for sending me in this direction. After a grinding of gears, once I internalized the new habits and "go to" snacks of low inflammation/anti cancer eating, switching to a low glycemic diet and exercising 5-6 hours a week, I feel wonderful. My former aches and pains of 'aging' are gone. I do not miss alcohol or sugar, and the rare times I indulge in them are fully enjoyed without triggering a binge. I feel in balance.
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Inspired you truly are an inspiration, thanks for the post. Keep on keeping on. Hoorah
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Wonderful news, InspiredbyDolce!
Lyn
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❤️❤️❤️🙏 inspired by Dolce, amazing!!!
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Kber- Great news
Insideout2
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Hello Debra,
I saw your post and just wanted to pop in to congratulate you on reaching eight years since diagnosis. I can understand that it is an emotional moment for you. I remember from your posts on both of these threads that you were always doing what you thought would be good for you and for all of us.
It is so good that you come back to tell us about these important occasions and I am sure it will give inspiration to all and especially the newly diagnosed.
Keep up the good work.
Best wishes to all of you on TNs and keep telling yourself that you will get through this.
Wishing all of you a Happy and Healthy New Year.
Love.
Sylvia xxxx
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Happy New Year all!!
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I had my lumpectomy yesterday and everything went well. I had no nausea and no drain! I had both in 2014 so I am very grateful to come home without them. My incision looks like a frown right above my nipple. How fitting!
I’ll know my pathology in five days. The waiting is the hardest part. Waiting for biopsy results, physician appointments, surgery, results, etc. Oh, and genetic testing results come soon.
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Hi SantaBarbarian!
I do take additional supplements, but the signature line under my name is limited in characters, so I had to really work with to fit in what I had into that field, and decide what I felt would be most beneficial to those stopping by, and I felt many people calibrate vitamins into their routine in some form or fashion, so I left it off.
For anyone wondering, yes, I do take a multivitamin (Garden of Life Raw Whole Food), plus Vitamin C and Vitamin D3. All are done daily, with no exceptions. Same with Metformin. I also sometimes rotate in other supplemental items, just depending on what I'm all about at any point in the year.
I also add ground flax seeds to my smoothies. I usually get my vitamins ordered via Amazon since I can get a 60-day supply for a Sprouts price of 30. Although Sprouts might be running a sale since it is a New year. I also stopped alcohol and diet coke consumption on day of diagnosis, and now drink organic green tea, spring water, alkaline water, lots of any type of water. I used to be a Tab drinker way, way back in the day, and saccharin has had on again off again FDA carcinogen warning labels. Kind of like the coffee debate.The main thing I wanted to post about today, is about the D3. There has been some information about low levels of D3 and increased risk of bc. There is an article as well on the main breastcancer.org website that comes up under the search results.
I had my levels checked when I was dx'd, and I was the lowest my primary care physician had seen for where I live (abundant sunshine state) and I was at a 12. Normal is 35-99 (in general).
I started supplementing with drops, I use Source Naturals, and got my levels up to 48, then 56, then into the 90's. And maybe one time I was over the limit and had to go off them for a brief period of time. LOL I'm now pretty much in the higher zone, and someone posted in our forum that a TNBC doctor/researcher suggested levels in the 60s. I have my levels checked 2x a year - once with my PCP and once with my Onc. I get the Source Naturals from Whole Foods, but have gotten them from Amazon before.
I look forward as well to reading of all the new supplemental enhancements that people are doing!
For anyone starting out, I recommend doing what is reasonable for you, and then gradually adjusting. I didn't arrive at this formulary immediately. I read a lot online, the boards, Sylvia from UK boards, and adapted what I felt I would be consistent in, and adjusted as I went. I still adjust and try new things every now and then. Such as recently added in cauliflower rice as a swap for brown rice sometimes. As new things become available and I learn about them, I try them.
Debra
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Crafty we'll wait with you. Good you are already this far and the tumor has been removed.
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I'm not sure which feed I saw this on, but they were sharing information about taking supplements while you were undergoing treatment and how it increased your chances of reoccurrence to some 80% and death by the same %. Good grief! I was told to take B6 because I had terrible hand-foot side effects and neuropathy probably midway of my chemo treatments. I was also taking a vitamin D supplement as well. I eat a very healthy, mostly plant based. But I do eat meat occasionally. Now I see a diet that says you shouldn't eat any type of food that contains asparagine, those foods include nuts and legumes? What the heck would that include beans which I eat and I eat walnuts and cashews in my cereal. I don't know which way to turn and am going crazy.
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Pkville- right there with you....what to eat, not to take it’s sooo much!!! Right now on chemo I’m taking calcium, B6 and vitamin D and just trying to make sure i eat foods with natural vitamins and minerals! I’m eating special k protein cereal for the iron because I have cut back on red meats a lot! These ladies offer great tips and suggestions...my MO gives no insight or prospective!0
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I conclude from all the conflicting advice is that no one has a magic cure. And the confusion about what to do just adds stress. The only consistent advice is to eat a healthy diet and exercise, just as everyone should, because the healthier you are in general, the better you'll be able to deal with anything they throw at you: chemo, radiation, surgery, hormonal therapy, everything. That just sounds right to me, so that's what I'm doing. Or trying to do...
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Ditto, Piper. Can never go wrong with healthy diet and exercise. And I agree that stressing about diets and supplements, and am I doing anything and everything I can, only makes us crazy. All of my docs pretty much agreed its just crappy luck and being women, that landed us here. The only supplements recommended by my MO After chemo were Vit D because my level was low, and B complex (to help with the slight neuropathy from taxotere).
Just hit the five year milestone, very thankful to all on this board for the advice and support!Hugs and strength to all
Arlene
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I saw that same posting. It was NOT a double blind study but rather an observational study dealing with self reported vitamin use prior to and during chemo. Quite a few holes in it.... dosages were not discussed, formulations not discussed etc... so it's hard to draw any conclusions from that study.
Arlene, it is always such a boost to hear from people who are doing well years after treatment!! YAY!!
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Craftylife - glad your lumpectomy went well. Thinking of you as you wait for the path report
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I was also told not to take vitamins (I wasn't on any yet) during treatment and so I didn't. My Onc said he didn't want anything potentially masked or hidden during treatment.
I read this article one time published on NCI by a doctor who noticed he was having an increase of TNBC patients. He decided to document and try to find any correlations between them. He found a very high % of his TNBC patients had D deficiencies. Everyone is different though, so we should remember that. Just like some smokers can live their whole lives and smoke and never get cancer. In fact, my Onc's mother recently passed at age 95, she lived alone until 93, and she smoked up until she passed.
These boards are great for sharing information, but everyone will have their own style and approach, and justification, and research and beliefs. You have to believe in what you do for it to make sense to you so that you remain committed. And like others have said, we should not drive ourselves crazy or set goals that are just unrealistic of a routine to keep up day after day.
You need a great quality of life for a lifetime of living, so do what makes you feel good inside and out. Treatments for TNBC patients are pretty thorough these days, and I'm sure the doctors have everyone on the best available path for them.
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I haven't ever heard of aspargine, it is always a constant filter of new information mixed with prior knowledge .... it is a lot to absorb and stress and worry about ... so do share, but try to just do what is realistic and feels right to any of you. Intuition might well be suited as you tailor your personal health styles.
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Well, the elimination of aspargine, leaves me down to just air for a diet. The list of what aspargine is in, is everything.... https://www.sciencedaily.com/releases/2018/02/180207140401.htm
That's not comforting at all ... seriously, what is left for us to eat? It said foods low in aspargine is fruits and vegetables. Hmm....will have to embark on what to do with this new info.... I always learn so much on these boards. Can't imagine not having fish or eggs or almonds ....
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Inspiredbydolce your words are pure wisdom!! Loved everything you wrote and read it to my wife. She couldn’t agree more!! Must be an AZ thing. Thank you for your inspiration!
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I've probably asked this question here 15 times but I'm still not clear on the answer. QUESTION: what follow-up should I expect/demand in the first 3 years after active treatment?
I don't put my diagnosis and treatment in my sig-notes anymore. Here are the basics. Diagnosed 2/19 with IDC/DCIS. Lumpectomy and SLN excision in 4/19; clean margins, 0/3 nodes. Tumor was 1.5cm. Grade 3, TNBC. Chemo began in May, 4x dose dense AC. The original plan was 4x TC, but I reacted to the Taxotere and wasn't able to continue with it. Radiation 20x including 4 boosts, completed in 9/19.
I've seen MO, RO, and BS for initial follow-up appts. Next scheduled BS appt is in 11/20. No more appts with MO unless there is a problem that comes up. RO has a survivorship clinic I will begin next month. I don't know yet the sequence of appts they schedule.
I'm supposed to have first follow-up mammogram and whole breast ultrasound at the end of this month. I just looked at NCCN standard of care and it said not to have mammogram until at least 6 months after radiation ends. That would put it in March, not January.
All very confusing.
Any thoughts on this? Thanks in advance.
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My cancer was more advanced than yours... but I go every 90 days for blood work and a MO visit for 3 years (window of most recurrence). Then I go to 6 months. I see BS every 6 months. I was interested re the information on "6 month post rads" mammo. I had mine at my regular annual time which was about 4 months post rads. But my breasts are not at all dense or tricky.
I am supposed to report anything weird that happens in my body-- pain, cough, itch, swelling, etc-- that does not resolve within 2 weeks.
When I asked what else I could/should be doing my MO urged me to stay on the same program (diet, ex, supplements) that I followed during treatment.
MM, how are you feeling in general? Are you getting more "bounced back"? It took me to about 7 months post rads/11 mos PFC to feel "back" in terms of overall energy. Wishing you a smooth and speedy return to normal!
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I'm not really okay right now. I'd like to say I am, but it's not that great. I had reduction surgery in mid-November and was recovering from that when I got a very bad cold that took me out for 2 weeks. Then I was gone for a week of Christmas with family, which was largely great but exhausting. Then I got another cold, apparently got dehydrated, and fell on 12/30/19. I was briefly unconscious, went to the ER, had fluids IV, a chest Xray, brain CT. A bunch of blood tests, urine labs, EKG.
My iron is pretty low, so I'm anemic. That could explain why I am tired all the time and get winded easily. My TSH is low. My glucose is relatively high at 104. I have my annual exam with PCP in 2 weeks, so have made sure to highlight all this for her (same medical system) and figured we would review it then. I trust her to refer me back to MO if needed.
I finally managed to get to the gym this morning for the first time in a month (pre-worst-cold-of-my-life) and am a tremendous wimp. Best thing I have to say about it is that I went.
Thanks for your kind wishes.
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I predict you are going to feel a whole lot better in May or June... It's just how long it takes.
For bad anemia I highly recommend hyperbaric Ox. My anemia was horrible. I could not walk from my car to my kitchen door without heaving for air. The Oxygen treatment was a huge boost when I would get it. It literally PUSHES oxygen into your feeble, drag-ass blood cells. You walk out of there feeling wonderful! Good for wound healing as well.
As unpleasant as it is to start back to the gym, good for you for doing it!! That will ultimately speed up your healing if you grit it out and go. Even a good solid walk each day is something that will speed things along.
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Mountain Mia, sending you hugs!
And you know, don't press yourself to go to the gym if you still aren't feeling well. Sometimes, some really good TLC and self indulgent behavior does wonders. So maybe curl up on the couch, netflix, drink something hot, and relax a few more days. Maybe instead of the gym working out, sit in the steam shower there and sweat the toxins out another way. Or just sit outside in the sun for a bit. Sometimes not going can be just as important to overall health as going.
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SB, when you say you have blood tests every 90 days, what are they testing? Have any results led to any change in your care? What kind of result would lead to a change in your care?
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MountainMia; I have the same questions and was frustrated by the answers. I finished active treatment in early August. Saw breast surgeon late December, who said I'm just scheduled for a regular mammo/sono one year past my last one-which is when I was diagnosed, late January. So i have that scheduled. Otherwise, nothing. I asked about a million different things, and felt like the take home was, we don't screen more frequently because it doesn't improve survival. If you have a local recurrence, that's less likely and treatable anyway. If its mets, catching it early does not improve anything: either you respond well to the drugs that are out there, or you don't, whether you catch a met at the first hint of a symptoms, or later on does not make a survival difference. So just, you know, try not to think about it! I said it sounded fatalistic, and he said, well, but maybe fatalistic in a good sense, in that you've had the most powerful treatment and the odds are good that you'll be fine, but yeah, its possible there could be mets down the line, we don't know and can't do anything more to prevent that.
So I try to focus on the positive. I have no lasting effects from the chemo (unless of course I get heart problems or leukemia down the line from the AC). I exercise very intensely, 4-5 times a week. My diet is not great, and I still drink a few glasses of wine here and there. I don't know wether I had a PCR because I had my lumpectomy before the chemo. Some days I barely think about it. Other days are very dark.
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