Calling all TNs

Hi Moth.  Yes the dosages are closer to 15 - 20 mg.  My personal experience - you need to ramp up slowly and be prepared to ramp down slowly if you don't tolerate it well.  For me, Melatonin led to very vivid, but not unpleasant dreams.  I'm at 15 mg a night right now.

You also need to time when you take it pretty carefully, especially at higher dosages.  It takes about an hour to kick in, at which point, I am pretty sleepy!.  However, when I was traveling internationally quite a bit and taking a prescription sleep aid for jet lag, etc, it was much more powerful than melatonin is for me.  

There is some other research that suggests that if you use melatonin long term that your body reduces the amount you make naturally, which can lead to sleep and other issues, so there's that to consider as well.   

I am working with my MO on the dosage, etc.  He was supportive of me adding it to my routine and does monitor the side effects, etc.  

ucfknights - you might want to check out the ASCO survivorship care guidelines to see what your doctors should be organizing for you: https://onlinelibrary.wiley.com/doi/full/10.3322/caac.21319

Hi notdefined, I have been to some dark places too, but luckily not too often. That doesn't mean it isn't scary when you're there.

I haven't done intensive research on statistics, but when I first met with my breast surgeon, she said lumpectomy on a tumor like mine (see my bio below for details) had an equivalent survival rate to mastectomy. We weren't 100% sure that I was TN at that moment because the first test for HER2 on the biopsy tissue came out equivocal. But after a FISH test, TNBC was confirmed, though I didn't know that until after surgery. So far I have not had second thoughts about the decision for lumpectomy. I would say that since everyone has a different set of circumstances, I wouldn't bet on trying to find someone with exactly your situation to model yourself after. Rather, look at how people reach their decisions, not on their results. Otherwise I think you'll just head down the rabbit hole way more than is healthy. Bottom line is that you are not a statistic!

Best of luck with the chemo and avoiding the dark places. As my wise father has always said, worrying is worthless: if what you're worrying about doesn't happen, you've wasted your time. If is does happen, worrying didn't help. So just keep going...one step at a time.

Anne

Thank you for sharing PiperKay. I know you are right, and I've never been a big worrier. I'm more trying to figure out what will give me peace of mind, and after visiting dr. Google started questioning my decision. My surgery will be in August, so i have time to change what I do. I'm sitting at the dr.'s office right now for my check up, so i will probably will ask my ON as well.

Thank you Santabarbarian! You have been a wonderful resource on these boards, and I want you to know I really appreciate your responses.

Hope everyone is doing well!

Thank you Moth. I get it. Admittedly, i am a numbers person, and I just wanted to know what my odds are. The dark places I would go is would I get to see my kids graduate from high school/college, get married, have children, or would i live to enjoy retirement. I think Taxol helps get me to these dark places, and hugging to the odds in my favor helps. I know these numbers don't mean anything to individual cases, and they are likely old data. It is a way for me to feel like I have control, even if it's an illusion. It may be silly, but whatever helps me stay in the light right? I also think I have had too much time to think about things, and I am working on that. I don't feel anxious just gloomy, and these thoughts don't keep me up at night. They seep in during the day in the quiet moments.

I appreciate your reply.

notdefined, thanks for that sweet comment!

To banish worry, I am focusing on the things I KNOW correlate with fewer recurrences, and doing those things. That's the best we can do, and there's a certain amount of luck involved too, but it makes me feel I am proactive to do these: 1. Low Fat, Low Carb diet (that leaves mostly vegetables!), 2. exercise 5-6 x per week, 3-6 hours 3. Metformin, 4. Melatonin Those four all have stats of lower recurrence rates per reliable studies.

Also I do a bunch of supplements, and I think those have helped me lower inflammation which is also good for cancer protectiveness. (I used to have quite a few aches and pains (hip, knee) and now I am pain free.) The supplements came from an integrative MO and he told me they would be good for post treatment too.

I figure that by doing the above I will be at the max of what I can do to help myself, and the rest I have to let go!

I had totally stopped alcohol during treatment, but now i have a drink occasionally (maybe 1-2 per month), and I am a little less hardcore re diet, but I think it makes sense to stay on a basically clean program though the peak recurrence window .

I think it is a myth that sugar feeds cancer. Cancer cells do consume a lot of energy but the fact is that your body *makes* sugar all the time. All our cells run on ATP which is made from glucose by mitochondria. In the absence of dietary intake of carbohydrate, our cells can make glucose from other things like fat and protein (see gluconeogenesis https://en.m.wikipedia.org/wiki/Gluconeogenesis )

I think being overweight is a problem. But complex carbs and fruit are fine IMO.

https://www.cancer.ca/en/prevention-and-screening/reduce-cancer-risk/make-informed-decisions/myths-and-controversies/sugar/?region=mb

A Naturopathic physician with experience helping cancer patients is another option. Naturopathic physicians know a lot about both diet and supplements.

Wow, a lot of good discussion here in the last 24 hours. Your comment, notdefined, sparked a lot of thought. As for your question about my radiation treatment, I've got 16 regular treatments (whole breast) to do (#12 today) and then 4 "boosts" which are targeted just to the spot where the tumor was. This is called a "hypofractionated" schedule which really just means it's a little shorter than a "conventional" course of treatment with slightly larger doses of radiation. So far I have no real significant side effects although my areola on the treated breast seems to be a little more red/pink than the other. I have no burning, itching, etc. - yet? Have been liberally applying Aquaphor as soon as I get home from treatment and then again before bed. Because the appointment is at 3 pm and I can't apply it before then, I go without the Aquaphor from after my morning shower until after the appointment. And as I said, so far so good!

And I have to chime in about the alcohol consumption. Of course I know it would be healthier for me not to drink at all even regardless of the cancer, and most seem to recommend avoiding or limiting it during actual treatment (chemo, radiation), but I do still partake fairly regularly, though I have really upped my hydration levels. I do this because I believe in the motto "everything in moderation" (except hydration now). I also don't want my entire life to be turned upside down by this disease. I am still in charge. So kber, you WILL enjoy your glass of wine again - when your nausea subsides and, it you're like me, when your taste buds return to normal. Cheers!

I drank very little before dx (because I begrudged booze the calories - I'd usually rather eat a cookie; but I liked a G&T and green wines during the summer and a single malt whisky in the winter) but I will definitely never drink again. Alcohol is a Group 1 carcinogen & according to large studies, there is no safe level. http://www.euro.who.int/en/health-topics/noncommunicable-diseases/pages/news/news/2018/09/there-is-no-safe-level-of-alcohol,-new-study-confirms

but I know this is hard for many

MountainMia, my husband is a single malt guy! I on the other hand never have been able to tolerate alcohol so I didn’t have to change that. I do need to watch the carbs and sugar though! Those are my weaknesses. I’m not going to be crazy strict, but am going to be conscious of my decisions. I have always been of the mindset that what will be, will be, but realize I need to live life a little more cautiously

Hi everyone,

I was catching up on the boards and saw that someone mentioned metformin and lowering recurrence. I am 16 mo post surgery! Seems crazy to believe it's been that long. I have recently been figuring out if I want to start taking metformin to prevent recurrence. My oncologist didn't seem to think it was necessary but I've read it can help. Does anyone have any experience or thoughts on this? My endocrinologist said she is able to prescribe it for me. Im open to any and all thoughts!

While I'm posting, I figure I"ll ask if anyone has any discomfort with their implants. My non cancer side irritates me from time to time and of course worries me. I think I slept on it wrong this week and it's causing some discomfort near the edge of the implant. Now I'm incessantly touching it and feeling around which I'm sure is only irritating it. A vicious cycle. Any input on that is also appreciated! Thanks everyone!!

Anne

Thank you for your input! I wonder why my oncologist didn't seem to want to prescribe it. I didn't push it too much. I'm 41, almost 42 and don't have any glucose issues either, however wouldn't mind losing 10 lbs. Did it help with weight loss? Thank you

HI LADIES...I guess I could be considered an “old timer” here. It’s been almost four years for me. But, I have a friend who hadn’t been helped by anything...double mastectomy, chemo twice and now radiation. Her MO suggested enrolling in one of the clinical trials at MD Anderson. Anyone have any personal experience or info?