Bottle o Tamoxifen
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Sulykm -Great information on phytoestrogen! Now I'm worried because I've been eating ¼ cup of flax meal every morning with my cereal for a long time, and I also make bread at home and use a full cup in it. I guess I have to find other ways to get that fiber intake!
Susie and Jeannette -Thank you for your support! After reading so many comments of ladies like you, I'm convinced that I shouldn't be so skeptical about tamox, and it would be another tool to fight back!
I will also do whatever it takes to fight any possible recurrence. I'm going to see my oncologist next week and will ask if I can get the oncotype DX test. I learned that insurance doesn't pay for the test unless there are obvious reasons to have it done, and the requirement is lymph nodes involvement and tumor larger than 2cm!
I am going to really try to have it done because, even though there were no lymph nodes involved they found two additional cancers -IDC(2mm) and IDCIS(4mm) with ductal and lobular in the right, DCI(1.5mm) on the left, and both breast with usual ductal hyperplasia. Well! I'm so glad I opted to have BLM! I went against all medical recommendation because of family history and years of fibrocystic breasts...My surgery was to, supposedly, eliminate one tinny nodule on the right, and prophylactic on the left!
Great Kitty pics, ladies! Now I really want to adopt a little kitten! I have a cute female black cat and she acts like a princess, a bit self centered, doesn't like other cats, and not much cuddling (she showed up in my patio and moved in a few weeks later). I want to get a little kitten to soften her up and teach her how to share, but she's so adorable when she's bored and in need of some attention!
Enjoy your weekend! Erika
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p.s. to Jeannette ~~
Forgot to answer your question about the doggie pic. No...mine is an English Springer Spaniel, similar to a Cocker Spaniel....but that Boxer looked so cute !
Bonnie
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Welcome Jennie! Any chance you can get a second opinion?????
And EVERYONE keep away from the flax and soy - they are by far the most filled with phytoestrogens.
Enjoying my daughter
C
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I am new to this thread so I apologize for jumping right in. I was diagnosed with IDC on Wednesday after having a bilat mastectomy last Thursday for what we thought was only DCIS. Oh well, now I am on the hunt for info on tamoxifen vs. chemo. info for someone in my position. I don't see an oncologist until Feb 4th so I am really anxious to find out what he lays out as my options. The 4 nodes they took were clean so at least we know it didn't spread and it was 5mm in size so still somewhat small. Just curious if anyone in a similar boat.
Abosolutely love the cat pics, thanks!
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I didn't have chemo, as the nodes were clear as well. But the stats for taking T are pretty impressive.
Welcome on board, Melissa. A great group here.
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Hi MelissaD!.... You can probably find lots of information here, but I think after you see a Radiologist, & an Oncologist, they will help you figure out what treatment is best for you! Some women have the chemo first, then the Radiation! I think it depends on how aggressive the cancer is. And some woman take the Tamoxifen during one of those treatments! It's hard to know what to do, but you should get professional opinions on this..THEN you can decide! Also if you are going to see your Oncologist, ask about the Oncotype test! It tests the "tissue" they removed, to see where your treatment should go! I don't know if it is a choice..."tamoxifen or chemo"....but write all your questions down when you see your Oncologist! Soft hugs to you! Jeannette0
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Hi Melissa, I am! I had BLM on December 31. i see my onco only on Feb 1, and I am researching on Tamox. My diagnose is IDC .2mm and DCIS 4mm on right breast and DCIS 1.5mm on the left brest. Since they are all so small and no lymph nodes were involved I won't need chemo or rad. It looks like it may be the same for you!
After so much info from ladies on this and other threads about tamox. I am seriously thinking of taking it as it'll be another tool to fight back possible recurrence. I a
I'm hoping to have Oncotype DX test done. This test will tell me if my chances of recurrence are high or low. However, it seems they have guidelines to follow on this test and is is required only when lymph nodes are involved and tumor is 2cm or higher. Maybe you can talk your onco into requesting it for you. Best of luck to you! Erika
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Erika: I had oncotype testing done and did not have lymph node involvement.and my tumor was not 2cm-it was smaller. My understanding was that it was used for ER+ tumors without lymph node involvement. I know that now more doctors are using it with patients with + nodes. I think it used for both Stage 1 and 2 bc.Good luck getting your MD/insurance approval.
TCK
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Hi TCK - Thank for the info. Good to know you were able to get it done! My onco surgeon told me about the guidelines, but in light of my 'new' diagnose they may be able to do it. I am HER+.
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I meant ER+! :-)
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Erika - but your profile says HER2-
????
C
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ER+, PR+, HER-
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got it!
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Hi Erica. My name is Cathy and this is my very first post. My breast cancer was ER+ as well. I have been on tamoxifen for almost 1 year. I can only speak from my own experience and I feel everyone is different. Since being on tamoxifen, I have gained weight and experience terrible hot flashes. Don't let this scare you as I know somebody who had zero side effects. I was wondering if anyone out there has been treated for hot flashes with success! I would give anything to get rid of these flashes. Please help. Thanks, Cathy
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CathyA - My oncologist recommended Effexor for the hot flashes at a low dose. I wasn't sure if it was helping and it tended to make me nauseaus so I am weaning off of it. If the hot flashes get really bad again I may go back on it. The NP at my onc also rec. black cohosh and primrose but most on this group strongly discouraged since a form of plant estrogen so I am not taking them. She also rec. Vit E which some others have mentioned. Hope some of this helps and you get some relief.
Thanks everyone for all the info on phytoestrogens and soy lecithin. It seems to be in everything.
I bought my plane tickets yesterday to go visit my daughter in Denver for a long weekend. We are Red Wing hockey fans and they are playing the Colorado Avalanche so we are going to the game. It is the end of February so something to look forward to during these dreary winter months. Me and my hubby are going to Reno in April so he can bowl so that should be fun too.
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Hi CathyA - Sorry to hear of your agony! Right now I'm swimming in unknown territory and can't give you any advise, but I remember speaking to my oncologist prior to my surgery and she mentioned another medication (I don't remember the name) in case of severe side effects from tamox. she also talked about putting me on a medication to cause menopause to occur, this way other medication may be best such as anastrozole for postmenopausal women. I was overwhelmed then, and she mostly scared me with too much information. I would speak to your onco, or maybe go see another one. This is probably what 'll be doing if my onco continues to scare me all at once.
However, after reading info on many threads I realized that my onco is not so crazy and there are other medications you can take in place of tamox, including provoking early menopause!
Good luck and please let me know how it goes. I am on the search for answers myself! Erika
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Hello to both new and old friends. Mom continues to recover from her hip replacement and is keeping me busy daily (even though still in rehab) so I haven't been posting but I try to read up when I can.
Erika09 - Welcome. I was one of those highly skeptical, reluctant Tamoxifen takers...and I researched the side effects ad nauseum. Once I satisfied myself that virtually every side effect if one occurred would stop if I stopped T, I latched onto one excellent piece of advice: "Try T and if you have bad side effects, you can always stop" Well, I've been on it since mid Novemember and no real problems yet !
SharonS - I actually HAVE read on this board about women developing rashes on T (See: http://community.breastcancer.org/posts/search?commit=Search&search_builder%5Bauthor%5D=&search_builder%5Bdate_range%5D=&search_builder%5Bkeyword%5D=tamoxifen+rash&search_builder%5Bsource%5D=&sort=score ) However, as I recall, each time the rash has been caused by a filler used by a specific manufacturer. Apparently, even though fillers are inert ingredients, people can be allergic; the best example I can think of is that a pill using a dry milk filler would cause a reaction in someone allergic to milk. Have you recently had your prescription refilled ? Is it possible your pharmacy switched manufacturers ? It may make sense to call your pharmacy to check.
Also, another newish T-trainer was asking about ovulating but not having a period. (Sorry I can't seem to find the post.) Anyway, I've been on T since mid November and haven't had a period yet so I've now missed two but I can definitely feel that I'm ovulating. Not surprised though sincewhile T may stop periods, it doesn't stop ovulation. That's why you'll read about woman who have uterine thickening. It makes sense to check with your gyno. He/she can do a transvaginal ultra sound just to check things out. If you get really uncomfortable, one option is a D and C where the doctor will thin out the uterine lining which has thickened up and not been sloughed off.
Hugs to all !!!!
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sharon----after 17 months it's highly unlikely that the rash has anything to do with tamoxifen; usually an allergic reaction due to medication will happen in the first few days or weeks. But I would definitely show it to your doctor to try and figure out what's going on.
anne
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Sharon, I had a rash last week too, everywhere my jeans rub against the skin when I walk. But then again it is January, we have been having a cold snap, and I get a rash and itchy skin from the cold dry air almost every winter.
I think that is more likely the culprit than the Tamoxifen, especially after 18 months for me, and it is clearing up now that the weather has gotten a bit warmer here. I am still taking my Tamoxifen, and if that was the cause, the rash would be staying the same or getting worse, not healing.
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I am currently on tamoxifen and would like to begin taking my vitamins, etc again. Is ground flax seed ok? I have read here that soy is not good in great quantity, but I wasn't sure about the ground flax seeds
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tpillsbu---I'd avoid flaxseeds. They are actually higher in phytoestrogens than soybeans are. Be very careful. I've read a study saying that these types of phytoestrogens that are in flaxseed can be beneficial and actually boost T. I've also read a study that says exactly the opposite. Just as with soy, I'd limit the flaxseed.
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Thanks bcamb, Chevyboy, Erika09 for the advice and info. I am learning you have to be your own patient advocate and learn as much as you can prior to talking with the docs. I will definitely ask about the Oncotype test then. I am still waiting on the HER2 test results and really hope it is negative as I heard this means the cancer is more aggressive.
Erika09 - Do you know yet if you are having radiation? I thought that was for folks who only did a lumpectomy who still have breast tissue left.
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Ok, I need to hear from you tamoxobeauties. Has anyone had headaches as a side effect? I've been on T for only 2 1/2 wks and my head has been killing me for a number of days now. I'm getting concerned about this because I need to go back to work at the end of next week and I do some heavy duty reading and computer work. I can't function with these kinds of headaches. Nothing seems to help get rid of them either.
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Thanks peg119. As for effexor, I am already on this for depression. I have done a lot of research on natural products for hot flashes but am a bit skeptical since effexor doesn't work. I did hear of catapres (clonidine) used in the treatment of flashes but I do not know of anyone taking it. I mentioned it to my oncologist but she didn't bite. I am going to see my ND in a week. I am going to ask her about acupuncture as it seems to work for everything else.
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Thanks Erika09. Do you know what the tamoxifen replacement drugs are?
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Hello sullykm. I don't think headaches is one of the listed SE's but personally, I think every person is different and every person responds differently to a specific drug. I would not fool around with these headaches as they sound quite debilitating. I think you should let your oncologist know if you haven't already. My sympathy is with you as I know what bad headaches are like. Good luck and take good care.
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Headaches are definitely one of the possible side effects. I haven't gotten more frequent headaches on Tamoxifen, but I've noticed that the ones I get seem to be significantly more intense.
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Hi Tamoxitrainers,
Sullykm~ I see PatMom above saying her headaches are more intense on the Big T.
Maybe SUSIE will see your post as she definitely got severe headaches as a SE of the Big T. I think hers are easing up.
Bonnie
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it takes a couple months for your body to adjust to tamox, so hopefully the headaches will subside over time. I took tamox for 5 years fortunately with minimal SEs, mainly hot flashes, but I did have one horrible yeast infection very early on.
anne
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Sullylm - Headaches are definitely a possibe side effect of T. Click on http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen.jsp for breastcancer.org's list.
Susie had really bad headaches when she started T but I believe they've subsided.
You might want to look into taking CoQ10. I ‘ve always had bad headaches but they've actually subsided since I started taking Coq10, which I began to take since high doses have been shown to have positive effects in breast cancer patients. The additional benefit is that it also reduces migraines. For more info on CoQ10, see:
http://www.cancer.gov/cancertopics/pdq/cam/coenzymeQ10/Patient/page2 (Coenzyme Q10 may be useful in treating cancer because it boosts the immune system. Also, studies suggest that CoQ10analogs (drugs that are similar to CoQ10) may prevent the growth of cancer cells directly. As an antioxidant, coenzyme Q10 may help prevent cancer from developing. ) and
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6X3P-4S08JWP-1&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&_docanchor=&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=3db139e935868e48ee270e0b8bf88695 (Vascular Pharmacology Volume 48, Issues 4-6, April-June 2008, Pages 191-201 Anti-angiogenic potential of CoenzymeQ10, riboflavin and niacin in breast cancer patients undergoing tamoxifen therapy) and
http://www.drweil.com/drw/u/id/QAA400021
A version of CO Q10, without soy can be found here: http://www.puritan.com/kosher-certified-560/co-q-10-120-mg-kosher-019983
Susie - What's your advice ?
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