TRIPLE POSITIVE GROUP
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lago - hi! Doing OK but have a crazy rash, apparently allergic to surgery! On the root canal thing - wouldn't we have had BC sooner - I had 2 root canals when I was in high school!
shore - my Vit D was super low after chemo - it was 17. It has gradually come up within normal bounds, although still low, since then with supplementation. My MO also does not want mega doses. I take a multi which just says D, but I also take calcium with D3 and a D3 supplement. I don't think you are supposed to exceed 4000 IU a day.
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d3 is supposed to be better health wise than d2. However, when my Vitamin D count was low, the doc put me on a 50,000 weekly prescription o D2 and said to take a multi vitamin with d3 to get it up quickly. When it was checked in December, the over all count was 86, I believe, with the d2 component being higher than the d3. I have baked off the d2 weekly pill (I take it every couple of weeks) and focus on the d3 now. I take a melt in your mouth one, called Dots, that is a couple thousand a day.
I really think I need abeach though.0 -
I have been trying to sit out in the sun (when it is out) for 10-15 minutes a day. I have to strike a balance though because I also have had a gazillion skin cancers. I had 3 removed right before chemo.
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I was told it is D3 that is most needed, and to take it within 30 min of eating some fat- so it absorbs quickly, and to take calcium so the D3 hellps it be absorbed by the body.
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We even after an oomph you still need AI? I did not know this. Your right Lago, still on AI , not the end of the roadSK GLAD your alright!!.
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Just checking in after a short absence. This is so full of info, love this thread! Thanks TonLee for starting it. What kind of sx did you have Special K? Glad you're feeling well!
Sorry about the thyroid TonLee. It seems like a few of us get all the problems and others sail through. I wish I knew why. Thyroid problems run in my family. Last check back in April though, levels were normal. And I ave been losing weight, not gaining, so I guess for now I am okay with the thyroid. Hope they get yours working normally with the right drugs. They can do that, can't they? Hope you're feeling well too.
Interesting to hear of the oophs. I don't think I'll be getting my period back (just turned 49), but I HATE tamoxifen! I am tired of the constipation and vaginal dryness. I wish I would just have hot flashes, I could deal with that. I really want to feel like my old self again. I want a break from it. Gonna to see what the onc says about that.
Good to "see" some new faces. Hope all the triple positives have a wonderful Sunday!0 -
I had low D before I was diagnosed…single digit low! I was on a prescription for a while then took 1000 of D3 per my PCP MD. When my bone density showed I was osteopenic my onc had me take calcium as well. My calcium also has some D in it. My D count is just above high normal but my PCP feels that's OK.
Here's what I take:
• calcium 1200
• Vitamin D 400 IU (included in calcium above)
• Vitamin D3 1000 IU
• Acety-L-Carnitine 500 mg
• Vita-Acidophilus 1.5 billion cells
• Biotin 5 mg
• Multivitamin/Multimineral Centrum (includes 200IU of D)Special K are you allergic to the tape?
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Thank you everyone. Lago, you take all that daily?
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Yes. Some in the morning (with my Anastrozole) and the rest right after dinner. It's only 4 pills in the morning and 4 in the evening (you have to take the calcium 2x a day). I fill pill containers up for the month. Put one by my computer in the morning and the other on the dinner table so I don't forget.
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Good tips. I've been hesitant about taking supplements because I don't want to unknowingly take something that causes bc. Wish my MO would give more guidance on this stuff.
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My doctors all know what suppliments I'm taking. If you can't get recommendations from your onc then ask your PCP. Many also take fish oil too. The Acety-L-Carnitine 500 mg, Vita-Acidophilus, Biotin 5 mg are not recommendations from my MD. You can alway clear it with your onc.
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I take 4 fish oils per the cardiologist, a multi vitamin and 2000 iu of D 3 per the onc. I was going to take glucosamine and condroitin for the joint aches, but have heard it isn't good with BC. I'm glad because the joint aches got better any way with the fish oil and vitamin d. My bil owns a pharmacy/health store and his family take a ton of supplements, all kinds of things. He wanted to get me to talk to his nutritionist and take a lot more things, but I've been very hesitant, afraid to do more harm than good. His family travels with a small suitcase just for their supplements when they come up from Washington for a visit! I always thought they were crazy, but now I'm not so sure.
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Actually the best way to get these vitamins etc is by eating the right foods not by suppliments. I really don't ake that much. The acidophilus I could get from yogurt (just don't eat it regularly) but does help my digestion. The Acety-L-Carnintine I only take now because it really does help my memory. Biotin for my hair. I actually don't NEED those.
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I try to eat right. That's a whole other subject about what is or is not good. I do eat lots of veggies and fruit, hardly any meat any more, switched to organic milk, still eat a good bit of chicken and fish and limit sugary stuff white breads, white rice and white pasta. I don't really miss my old diet or thirty pounds much at all. I still do like my pizza though, can't give everything up.
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Kay I make my own pizza. My husband now prefers it to delievery… and we live in Chicago, a place know for it's pizza. On my pizza a put some sauce, spinach, lots of white mushrooms (lots of flavor) some olive oil, basil, garlic, fresh ground pepper and mozzarella made with part skim milk. I use Mama Mary's thin Pizza Crusts. I would love to try the whole wheat but I have yet to find them in the store. I find they have less salt and calories as well as less crap ingredients.
I did try the Trader Joes pizza dough. People swear by it but I found it gets mushy.
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Kay1963 Any idea why the glucosamine/condroiton would be bad for us? I'm 6 months into Tamoxifen and I'm in agony with joint pain-shoulder, hip and back. I wake up every night from the pain. I'm already taking fish oil and I'm exercising to keep the joints moving but it's awful. Still no period x 1 year so I'm sure estrogen depletion is compounding the pain. I was considering glucosamine/condroitin but I don't want to if it's contraindicated...0
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Dragonfly did your onc test your D levels? My onc tested my D levels even after my PCP did just to make sure they weren't low. If they are low the joint pain can be worse on these meds.0
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kay - I had exchange surgery (finally!)
lago - I am allergic to everything, including tape. They minimized the tape and used paper tape. I have steri strips in the IMF but that is really all the tape there was. This happens every time I have a surgery. I don't know if it starts with what they clean me with, but the rash was where the binder was. I took that off, but it may also be exacerbated by meds too. I am allergic to a lot of antibiotics. I just have to let it run its course.
Here is my list of supplements:
a multivitamin, calcium (with D), additional 2000 iu of D, fish oil, a probiotic, biotin, B complex, acetyl l-carnitine, Femara, Lipitor
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dragonfly - my onc PA said it was ok to take glucosamine/condroiton for joint problems.0
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BTW I haven't tried this but it looks good. Pizza crust made from cauliflower. Click on picture for recipe.
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For those of you who take fish oil, how much a day do you take?
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Lago, I use the mama Mary's thin crust too! Glad to hear you think they're relatively healthy.i don't know what the deal with glucosamine is. I think it may be fine once you're done chemo. Something about having some kind of effect on how fast cells divide.
I take 4 fish oil pills per day. They have 1000 iu's in them. The package says to just take one per day, but the cardiologist told me to take four. I have an issue with my ejection fraction from herceptin.0 -
Well I think they are healthier than the others on the market and much better than buying a frozen or delivery pizza. I try to at least look for lower salt and sugar. You also can control how much cheese and what kind of cheese if you make your own.
I love making whole wheat pizza topped with tomato sauce, goat cheese, fresh basil and a little olive oil. My husband doesn't like goat cheese on pizza though.
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Oh lago, those pizza recipes look so ono!! I am SO trying those!! My husband and I love goat cheese.
Shore1, I take 1,200 mg fish oil daily. Also, in addition to my other supplements, I take 1,000 mg vitamin D3 and so does my husband. Being the the Pacific Northwest, we find we need them to keep our D levels normal. Those in the NE also tend to be vitamin D deficient.
We also try to eat salmon once a week; being in Seattle makes that easy! :-)
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Thanks Lago for that recipe! I was JUST LOOKING for an alternative to flour/wheat crust pizza. And I just bought cauliflower....trying this in the next few days!
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JOINT PAIN
Tamoxifen is killing my joints.
On occasion I have the opportunity to talk with a naturepath who is also a medical doctor.
I haven't tried it yet but thought I'd share what he suggested about joint pain.
He said the Health Food Stores have something called Baxyl. Said he recommends it for joint pain over everything else on the market including PRESCRIPTION drugs. (He's one of those guys that isn't religious about all natural, he IS religious about WHAT WORKS BEST.)
Anyway, just thought I'd share...I plan to get some in the next few weeks..I have to drive a little ways and I want to actually look at the bottle before I buy it...but here is some info on it.
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specialk - I am allergic to Betadyne, what they use to prep us for surgery, Causes a rash on me in area it is applied. Found out I was allergic after my son's c-sect. and they used that to clean the incision. I am also highly sensitive to tape. Just a thought.
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Lago Yes, I had the Vitamin D checked during chemo and it was definitely low so they've had me taking a multivitamin with D + 1000 mg D3 extra per day ever since chemo ended 9 months ago...I'll have to get the level re-checked just to be sure.
Omaz Have you tried the glucosamine/condroiton? Has it been helpful?
I think my joints (and everything else in my body) are dried up from lack of estrogen. I just never realized how much our hormones affect everything-good and bad. On a very positive note, my debilitating, chronic migraines (12+ per month) are a thing of the past since chemopause-looks like lack of estrogen has some benefits too!
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Tonlee Just saw your post when I finished typing mine-Thanks for the suggestion. I'm going to check out Baxyl.0
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Tonlee let me know how that recipe is. I did buy some cauliflower to try it out a few weeks ago but my husband decided to cook it with dinner one nice.
I too have the stiffness but I know so many women that are having issues so much worse than mine. In my case its mostly in my toes, thighs and somewhat in my fingers. If I'm moving a lot of it goes away in the fingers and some in my toes. But really I can't complain when I hear what others are going through… I mean can you hear me complaining to my onc:
"I'm a bit stiff so when I do my 30 lunges and 60 squats 2-3x a week I find it difficult and throws off my balance a bit" I think she'll laugh in my face.
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