Calling all TNs
Comments
-
notdefined, my MO kept repeating several times that recurrence in the breast wasn't really the problem as we can treat it and with the increased surveillance of us we'd catch it early, and a mastectomy doesn't prevent metastatic recurrence which is the one that they really worry about.
I didn't have neoadjuvant chemo so I have no idea whether my cancer responded to chemo or not.
You could try to calculator at Predict. https://breast.predict.nhs.uk/predict_v2.1/ for an idea of what the large scale trends are.I kind of know my #s and I also kind of don't - in the sense that I pretty much forget them very quickly. My cancer blog where i kept friends updated is called "never tell me the odds" (a Star Wars quote). There's a point where they don't matter & it almost seems binary: it either will happen or won't. I'm assuming it won't and trying to do whatever evidence based info there is to stave off recurrence but mostly I keep very busy and I try hard to not have time to obsess about this.
0 -
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.
0 -
notdefined, I think I get what you're saying. But while Taxol helps drive you into the dark places, it's also driving you back out. As my MO said, chemo always wins over no chemo, for risk reduction.
Best to you.
0 -
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 .
0 -
Thanks MountainMia, and I agree. I am committed to finishing this regimen, and then do what I can to reduce my exposure.
Santabarbarian-I was assuming I would need to change my eating habits. I was thinking of doing the Paleo diet or something similar. I also intend to do intermittent fasting, as I think I am able to do the 18/6 hour fast without upsetting my stomach. I'm trying to implement exercise during chemo, but I'm only partially successful. I do enjoy a glass of wine to wind down at the end of the day, but I haven't partook during chemo. I will try to give that up and reduce to a few times a year. All those changes can also be depressing. I am a carb and sugar addict (especially fruit). I have been a lot better during chemo, but I think chemo is helping with that. I've read how sugar feeds cancer, so I know that is the route I will need to take.
0 -
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=mb0 -
Thanks for sharing Moth. It would be much easier to give up simple carbs and sweets as long as I could still have some carbs and fruit. There is so much conflicting information out there, and it makes it hard to know what to follow. I plan to meet with a dietician after chemo, because the truth is that I could use a lot of guidance.
0 -
A Naturopathic physician with experience helping cancer patients is another option. Naturopathic physicians know a lot about both diet and supplements.
0 -
The nutritionist at my oncology practice is a fan of the Mediterranean diet, for what it's worth. However, her advice during chemo was to eat what I could keep down. I've tried to make healthy choices but some days it was cheerios and a banana for dinner and nothing else.
I also enjoyed red wine and asked if I could partake during treatment. My MO just looked at me funny and said "Well, yeah, I guess so. If you want to." And the truth is I really really DON'T want to. I am looking forward to being able to enjoy a glass again soon, but 2 weeks after my last session I'm still fighting nausea.
0 -
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!
0 -
santabarbarian-I have Kaiser, and I am not sure if they have Naturopathic physicians. I will have to look in to that.
Kber-The Mediterranean diet sounds achievable. I like that it includes red wine
0 -
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
0 -
moth, I've seen some of this information before. I'm like you, a few years ago I decided to cut back from my 4-5 drinks a weeks to 1-2, largely because of the calories. And I do like my single malt Scotch! I've cut back even more since then, mostly from not even thinking about it. I'm sure I'll still have a glass of wine now and then, a beer, or a swallow of tequila. Or the shot of whisky. There are a lot of things I do that aren't 100% safe, and this is one of them. For me, the important thing is that it's a specific decision I make to enjoy a drink, rather than something I do without thinking. Thanks for the link.
0 -
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
0 -
I too love scotch whiskey!
Mncteach, You might want to try to eat clean 5 days a week, and give yourself some wiggle room on the weekends...? It's a matter of finding a 'plan' that you can stick to, enjoy, and not feel too deprived. I think it's sometimes easier to give up a forbidden food altogether that to eat a limited amount. But over the long haul, I want to get invited to other people's homes for dinner, so I do not want to be the guest who has a whole list of dietary no-nos...
0 -
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
0 -
I am on metformin... When I asked my MO during treatment, he prescribed it. I take 1000 mg - in two 500 mg doses. I notice zero SEs. I do not have any problems with it even though I don't "need" it per glucose.
I also take melatonin 20 mg at night (worked up to that amount). To me both of these interventions are unnoticeable and they both have good stats...
0 -
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
0 -
A4ggy, -my onc didnt think the metformin was for me, - not sure why not, perhaps there arent enough studies on it? and yes, my implants are usually uncomfortable. The degree of discomfort depends on if I bumped into something, slept on it, etc.
0 -
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?
0 -
santabarbarian, I have a question for you or anyone else. We were pretty much on same timing with chemo, surgery and rads. I finished chemo December 20th. I heard about a lot of people with bad nails and toe nails. I never had an issue til this week, I lost my 2 big toe nails. Are you still getting side effects?
0 -
I had nail issues with Taxol. Didn't loose any finger nails, (thought I would) but they looked bad. Interestingly, my finger nails were thin before chemo. Couldn't grow them very long or they'd break. They grew back thicker and healthier. Go figure. I lost almost every toe nail. They just fell off. Most have grown back now except for my big toe nails still have a ways to go.
Was told Taxol would be easier than AC but I found that Taxol was harder on me.
0 -
Volleyball, No I have not had any issues. I had only a deep and lasting anemia that has finally lifted! Sorry you are dealing with this!
0 -
Hi Cathytoo!
As for recurrence rates, my MO told me i’m atabout 8% risk.
0 -
Hi guys,
Long time no talk! I've been in finals. Are we talking about booze and boobs?
I'm with Moth. Very very likely Booze Causes Cancer. They're just looking for space on the wine bottles next to the birth defects warning to print the words: "Alcohol Kills."
I don't drink at all. II gave up booze entirely for health reasons two years ago, pre-cancer. I mean it's sugar which is already a no-no. On top of it it's poison. I got enough poison with the CHEMO. I'm going to restrict my toxins to the ones that prevent cancer. I'm a little pissed at booze for sure. At least the cigarettes have the warning labels. And I will also never drink again!
But, I do not judge and I do not begrudge. Diet is a personal choice. This is all about personal freedoms. I am never ever going to preach at anyone about anything. That said I'm going to do a little shout out for AA down below, in case anyone needs it.
Hell everyone's already got cancer here. We're not exactly in the prevention stage. Or or we? If we're not dead we are vigilant. At least I will be. I mean if you get attacked by a lion one time, it is normal to take precautions against lion attack. I'd say that lions are nothing at all like lightening and neither is cancer. If you've had it once, that lion might still be around somewhere, or maybe it's attracted to your perfume? Who knows but a few changes and some precautions would be wise. When oh when will they come out with an anti-lion spray?
I'm just thinking, the mediterranean diet betrayed me. Lived in France for 6 years and 18 months in London. Can not believe anyone in the cancer diet community is still recommending wine. There is absolutely no indication for alcohol medically or dietarily unless you are in alcohol withdrawal and then they have meds for that. And if they are using it as a lure to start eating non processed foods then they should point that out. Like this, eating this way is absolutely awesome. If you subtract the booze you have a really healthy and nurturing diet for mind body and soul. So enjoy all this but swap out the wine for evian or san pellegrino. That would be fine!
I can see it would be really hard for someone with a spouse who drank around them in early treatment though! That would piss me off for sure. There you are miserable on chemo or post surgery or pre surgery or waiting for ads etc. and there's this insensitive idiot drinking, so basically getting high. I mean when people around us are sick and going through treatment we don't get high around them we take care of them. Or at least don't get high around them. Show some respect and booze in private if you can't abstain temporarily.
Any way, if anyone here thinks they might have an alcohol use disorder small or large, you will never find a hipper, cooler, more fun, and more supportive group of buffoons than the complete lunatics who join AA. Just saying, it's a ton of support and no one's more positive. No one. They are trained in root level positivity. The hard way. The real deal. You'll find people there with cancer, people there with everything. And alcoholism has a much higher mortality rate than cancer and also has a higher relapse rate. So you won't feel like the odd one out on death's door. Just hold your breath on the way in as you pass through the cloud of smoke. They all ideally quit smoking too, eventually but the first 3 years it's about the booze, so there's a lot of smoking outside.
There's got to be someone. When the topic comes up there usually is. Someone will search the site who maybe has a booze problem and find this thread maybe... who knows?
These below links are links to AA meeting apps to use on your phone. Surf to the link on your phone. Download it for free and you have it if you need it. It finds the meetings and the times and give you directions and descriptions and they are free apps. Just in case someone wants to check it out. Or maybe has a friend. Literally don't need to have your wig on to go. Show up on a walker no problem too. Completely done up with hair and makeup fine as well. You just show up. It is fun. Also, just repeat the words they say and worry about your immortal soul and your belief in god or a higher power later.
https://play.google.com/store/apps/details?id=org.meetingguide
https://itunes.apple.com/us/app/meeting-guide/id1042822181
That's all. I'm off to RADS! Loving rads.
Booze and boobs! It's the sexy cancer for sure...
0 -
FrackingHateCancer - hey, hope your finals went well! Just a fist bump from another gal in school...but my finals were in April and I'm back in class (cause it's a 3 year, year round program) so i have midterms again in 2 weeks /eeeek/
you're doing good deeds here, sowing the AA seeds, one day at a time
0 -
hey guys were any of you found to be egfr positive?
0 -
Dee1987, I don't know that I was tested for EGFR.
0 -
I have 'equivocal' EFGR amplification...
0 -
Santabarbarian what does that mean? I just had egfr 60
0
