Team ILC Warriors
Comments
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Amy, way to fight thru the rads.
Julie, that is my relief is being outside and listening to the birds and planting seeds and watching them grow and repotting them a million times. I use to do a vegetable garden but this year I didnt have it in me so I have a ton of pots that Im growing stuff in. I just didnt feel like hoeing this year. lol
Good luck with the mri Claire.
Healing hugs to all
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Claire, here's to a clear scan! It is nerve wracking, but so nice when you get the all clear. Will be thinking of you.
I have been on tamoxifen for almost a year and a half with relatively minor SE's. About to be switched to femara and hoping for the same.
Off to do my morning run and watch the sunrise! Sometimes it's tough to get out there, but it's always worth it. :-)0 -
momine, how does one know if we carry that Cox gene? I thought they said most cancers do? Also, what do you mean by the author/negative? Do you feel the article isn't based on truths?
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Good morning everyone!
Amy, I'm thrilled to hear your mom is doing so well! I read your note to my daughter and she laughed because she also learned to drive our truck, which is a stick shift, in the cemetery I take care of. It wasn't so peaceful in the cemetery that day with all the abrupt starts and stops, not to mention plenty of stalling. I rode with her for the first ten minutes to give instruction, but felt pretty nauseous by then. She took it from there and was a proficient driver within the week! Amy, congratulations on being halfway through your rads. How are you feeling today?
Melmcbee, How great is it to grow something from seed? I just got a bunch of mail order organic flower seeds yesterday. I've been planting a garden around the little chapel in the cemetery I take care of, and I'd like to fill a large area with native perennials for birds, bees and other insects. I can't wait for it to be warm enough to work the ground. I've got a large pile of shredded leaves and aged horse manure to work into the soil before planting. Come on spring!
Momine, I appreciate your phenomenal knowledge and ability to understand medical research. It's a gift to all of us that you can make sense of often confusing reports. Thank you!
Sending love and good karma to all of you,
Julie
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Joelle, I have no idea how you would know if you had a mutated COX gene. As far as I can see, inhibiting COX basically means inhibiting inflammation, so anything that inhibits inflammation ought to be helpful, and it is probably reasonable to assume that you want to minimize inflammation.
Any article that only makes use of one source is suspect, it doesn't matter what the field is. The article is confused and confusing. It is really not clear which of all these herbs and supplements actually act on cancer, which cancers and how. The guy they cite is an integrative onc, not sure if he is an MD or just a herbal practioner. He may be a fine and competent human being, but I would not feel confident proceding on the say-so of one guy.
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Choochoo, thanks for the vote of confidence, but I have absolutely no special knowledge. I am just trying to learn and understand like everyone else. My only skill is that I read, research and check references for a living (but not in a medical or scientific field). I assure you that a lot of this medical stuff might as well be Chinese to me at times.
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Thanks ladies for the good wishes. I'm resigned to this MRI no matter what. If something appears, well, it just means my BMX will be moved up a bit.
I did want to share with you all that I've noticed my weight creeping up just a bit since I ended tx...I know it's from too many calories, healthy ones or not. I'm still pretty lean, but post-meno we are supposed to keep our BMIs on the lower side of normal. I'm trying to lose about 5-6 lbs. I have an I-phone and downloaded an app to keep track of foods I eat every day and calories. It's pretty sweet: programs in my current weight/height and the amount I want to lose w/o exercise and gives me a caloric amount for each day. I enter everything I eat (calculates the calories/portions through a search). When I do exercise, I can add it, and it recalculates my calories.
It's really helped me see how much I was eating (all those almonds!!!) I think I've lost 2 lbs already.
It's called Fitness Pal; you can find it through an internet search and then download the app.
Claire
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Momine...I think many of the herbs/supplements and foods he recommends are also very much recommended on the Life Extension site and on TED videos...I don't think any of what is recommended looks suspicious.
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Joelle, I did not say the list was suspicious, I said that when something is based only on one source, I would question it. I am not sure what the basis is for some of the claims. The fact that others repeat the same claims does not necessarily make them any more credible. As one example, google "coffee enema" and you will get a gazillion hits. That doesn't mean that coffee enemas in way, shape or form do anything to combat cancer or any other disease.
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I believe that nothing is ever 100% credible, even studies. We all just have to go with our gut.
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Claire- Any info on results from MRI? Usually they are very quick with them. thanks for the tip on the Fitness Pal , I have looked at them all but hadnt picked one to use yet. I am going to work very hard in the next 30 days to get some of this weight off before I go on tamoxifen (IF I go on it).
ONE more rad on Monday and then that machine is getting the middle finger!!!!
I am participating in a clinical trial for mammograms. Case Western Medical college is doing a study to make mammograms better to detect ILC. And looking for tumor markers for BC, the study is specifically for ILC. Today I had my interview- the first questions were about exposure to-Pesticides used in yard or garden, Insecticides either sprayed in the home or outside, mosquitoes spraying ( I still see this happening in the summer, do you all know have this? Its a huge truck that goes up and down streets spraying poison into the air to kill mosquitoes), commercial sprays (raid etc..) and insect repellent like OFF. Bottom line stay away from all of these things. Also asked alot about birth control pills, clomid (SERM, which I took for 18 months) and other drugs to either get pregnant or not get pregnant. Wish I never took the clomid, now I am wondering. Of course they are still prescribing it. Also had to fill out a food diary, give blood and urine and all my mammos since I was 30. I hope they can do something successful with the information they are getting for those of us with ILC. We all know there is not enough info on it.
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Lemon, I'd like to know more about that study you're in. My ILC was detected by mammo, thank God. I would love to be part of something that could make the mammo process better for those women who come after me. Would having undergone bmx disqualify me from participating?
I recognize that things could be so different for me, if not for the skillful mammography team I ended up with. I had no symptoms, no lump or thickening that could be felt.
Nice to see you fellow ILC sisters sharing and supporting on here.0 -
Hi Powermom,
Welcome! I will ask on Monday the name of the study and if other cities are particpating in it. I beleive the only qualification was being a 1st timer and ILC. I didnt know at the time but they are sending me a check for $70 for the time to do interview (only took 30 minutes). Thought that was a kind gesture, need to do something special with it.
I had no symptoms either. Mine was micro calcifications, 1st biopsy said B9, surgery changed that DX.
Kim
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Lemon, thanks for participating in that study.
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Joelle, of course all information should be questioned, but there is still a hierarchy of credibility. Not all info is equal.
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Lemon I did a little research on the free calorie counter apps and this one was the best. I really like it--very interesting to see how calories and exercise balance out (or don't). It's easy to use. Myfitnesspal.
and I did the MRI yesterday...so no results till Monday at the earliest. The worst part of it was that they asked me what kind of music I liked (so I could listen through headphones) and I said "60s", and they blasted 80s music at me for what felt like forever instead! I couldn't even tell them to turn it down once the MRI started. Yeeaoooow, my ears...
My gut says I'm probably clean. But I'm also logical enough to know that variables occur.
My question to the group: speaking of our intuition, did anyone have any recurrent "prophetic" metaphorical dreams about BC before you were dx? I did..will share but don't want to be the only one
Claire
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Yes i had Dreams and waking intuitions too....
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No, no prophetic dreams, but years and years ago I had thought long and hard about what I would do if I got BC, and had decided that I would be OK with a BMX. This was actually pretty helpful when it happened for real. I had already come to terms with it years prior.
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Claire, good luck on the mri results. We are pulling for you. No I didnt have any dreams about breast cancer prior to diagnosis. Too busy worrying about everyone else in my life. lol
Lemo I am also interested in learning more about the study you are in. I work in the radiology field and didnt know the limitations for this particular type of cancer prior to my diagnosis.
Powermom, you are lucky that yours was detected especially at that size. Im glad to know that it was detected.
Oh and I have been around pesticides all my life. I am from a rural area in Georgia so the mosquito man came around every night. It was also common practice to use bugs spray if you were playing outside. Worked around many gardens as well.
Healing hugs to everyone. Have a blessed weekend.
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Lemon,
I am in Eastern PA but I am also interested in the study on ILC. I think its fascinating that they asked about pesticides. My dad (who also has ca) sprayed every year! My mom had BC... also. But the pesticides he used ( I believe DT (?- got to check on the name) is banned now. In the old days I used to play outside so much - anyway, I wonder. I am one of the fortunate people who had clusters in a star pattern on micro calcs that were seen but I hear that is not common. So any info would be welcome.
Thanks,
CR
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I realize more and more how amazing it was for mine to have been found so early. And it was deep, close to my chest, so it could have been really big by the time it could have been felt. That realization is very humbling.
The mammo showed "suspicious micro calcifications," like yours Chocolatero.0 -
powermom, I too agree how humbling to have been found so very early and how extremely fortunate.
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Hi Everybody,
Just checking back in after a whirlwind couple of weeks. It's so informative to read all your posts. Thank you for that. I've decided to have a mx on my right breast and I'm alreday thinking about the Tamoxifen. Surgery itself doesn't really scare me. The recovery I know will be difficult and am ready to dig down and push through it. But the tamoxifen terrifies me.
Lemon, what do you think will determine whether you'll take the tamoxifen or not? I'm scared to take it and scared to not take it you know? I've been advised to handle things one step at a time - but my mind always goes straight to "T"-town and the possible side effects.
Can any other of my sister ILCers share their experiences with it?
Kay
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I see that there are four if us here who are triple+ ILC folks. We're really "special and rare," huh? I've never been one to follow the norm!
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Kay,
I have been on tamoxifen since Jan '12 with few side effects. Yes I have some joint pain and fatigue, and I do think I am not quite as sharp mentally as I could be, but overall it is pretty tolerable.
I am expecting to switch to Femara soon and am a bit nervous about that.0 -
I've been on tamoxifen since this past December, and it is not terrible. I do have hot flashes, but not nearly as many nor as intense as the ones I had during chemo. I have trouble sleeping, but I have since the BC nightmare started. Tylenol PM is my friend.
There are alternatives if you have issues, and many side affects can be managed. Keep an open mind and think positive. It's so hard not to work ourselves up about the unknown, but try to keep the faith. It hasn't been great, but not as bad as I feared. I hope the same for you!!0 -
Powermom - we are VERY special
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Kestrel and Dianne thank you for letting me know how you are handling the Tamoxifen. It is a real comfort to hear from everybody. And Dianne that is maybe the best advice of all - to keep an open mind as we try to figure this all out.
Have a great Sunday!
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Ladies, Tylenol PM is NOT your friend if you are taking tamoxifen! It has benedryl in it, which reduces tamoxifen's effectiveness!!!! http://www.oncolink.org/experts/article1.cfm?c=23&id=2689#.UWGPHhl4Mb0
Claire
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Thank you for the link Claire -
I'm taking notes and comparing all the info I can get my hands on as I make this march towards t-town.
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