Bottle o Tamoxifen
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HnS I do hope that your testing comes back negative. It's good that your going for it. I think we need to gather the Tammo troups and go hunt that tech down and go Tammo on her arse!! My goodness how would she like it if the tables were turned on her and that happened to her. I agree with others and report her. She clearly has no business in this kind of profession.
Jane I'm glad that your tests are B9. I'm still on the fence about proceeding to the next step and getting my ovaries taken out. I know I need to, but in my mind it all seems so final. Good luck with what you decide and remember that we are here for you girl!!
Love and light to you all my Tammo Sistas!!!
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Linda,
thanks for the feedback and support. I just posted on the Arimidex board. My surgeon switched me but am scared to take it as it raises cholesterol. I already have a level at 300 which I managed to get down with diet to 276 in april. Can't take statins (allergic to them), and I've tried all non-statins can't take them either. Surgeon says, "just take your meds", but I don't want to...I don't want to die of clogged arteries either, or high cholesterol. I'm in the da*ned if I do, and da*med if I don't catagory. Whats a girl to do?
NRP
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NRP - Have you tried taking fish oil or krill oil for your cholesterol? I was taking 4 fish oil caps a day - 2 in the am and 2 in the pm. Too many pills so switched to the krill oil which BTW is working better.
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nrp - the choices we have to make, it is enough to make us crazy. The lesser of evils?
I am not doing that great at my own decision. The more I read the more confused I get. The latest I read was that removing ovaries before age 65 leads to more demetia late in life. I guess this presumes that at 47 I will get to live that long and not have BC come back. Making myself crazy - think I may start a thread and see if I can get feedback from the wider population.
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Christina, just replying to yr post back in Aug, you had just had first dosage of tamoxifen, how have you handled them, are you experiencing S/E. i am on them, first year is up nov, have not had too much bad stuff, night sweats, achy joints etc. half of the achey joints i dont know if from tamies or the rads. so was just enquiring how you got on. gentle hugs
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Well girls, I talked with my MO yesterday and decided not to go back on Tamox after taking my Ireland trip break. We discussed it at length and I decided to stay off of it and just be extra vigilant. I did 3 years and just don't like the side effects. I will keep tabs on these postings just to see how everyone is doing.
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Paula - haha, love the idea of Tammo troops to go "all Tammo" on that technician's arse! I wish we had Tammo troops all across the country to accompany whoever has had a hard time. Just make them be nice! I haven't complained about her yet - I'm kind of reluctant to because she's one of only two diagnostic technicians. I remember the other one as being rough (but not rude) so it's a decision between bad and worse. I see my BS next week and I'm going to ask him if I could go to another hospital, or if I can stop mammos altogether since I have dense breasts and they're not as helpful anyway. Maybe switch to ultrasounds. I'm supposed to call back on Monday and make an appointment to talk to someone about the BRCA test - I guess to go through my family history and all. My mother's memory is no help - I may have to call a long-lost cousin to find out how all my great-aunts died.
Sherry - thank you for all the info on Zometa! Now I know what to do IF my oncologist ever makes up her mind about it! The other day she said, no she doesn't want me to do it. I didn't debate her about it, although 3 months ago she had me lined up for it....sigh...I wish these doctors would make up their minds. I hate going through the emotional wringer all the time. I don't think they really know what to do about breast cancer!
Hope everyone is enjoying this nice fall weather! My son is at the Georgia Tech football game today. Bobby Dodd stadium has a nice view of downtown Atlanta - I saw Simon & Garfunkel there back in the day. It was such a pretty view at night and it was in the fall. The music was echoing all over the stadium.... ah, memories...
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Peg, understand why you are choosing QOL.
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Ladies, it has been alomst two months and I am so far behind it is sick...suffice it to say i have been getting into the groove of being in the Middle East and adapting to a new job, new accomodation and new..well everything. Doing lots of walking (gave my car to a friend) and sorting out the apartment 9 amazing to have an employer pay the rent but wow....BEigE!!! and furniture I keep whacking into so between that and my bloodthinners, I am black and blue!)...Going to lots of events (kayaking, desert camping, dune bashing, oral folktale sessions..translated of course....silkpainting classes, bootcamp classses). I am doing all I can to stay fit without the paddling and am eating well. The fish here is fantastic and ther eis an organic produce group...though th efood boxes are incredibly random and I may just opt to buy organic produce that i like instead). Volunteering at the breast cancer table this week and last ....about the only thing happening in Doha regarding BC. Have not come out to anyone other than one person about it but have tried to find more opportunities to volunteer....people have a very different outlook on age and disease and life here...need to sift through the sand before I tell people my secrets. But verall, I am loving it..the change....the growth....the opportunities. So fantastic...to not be thinking about BC all the time is also fantastic...so hard in October at home as ècancerè is everywhere...easier here to get on with getting on because it is not plastered all over..which also has its downfalls since i means people do not talk abou tit....catch 22.
Sending hugs to all my sisters on a regular basis though. While I may not be on this site as often these days, you are not far from my heart. I imagine I have missed a few pocket parties and pillow fights but WHACK!!!!Thereès one for good measure.
ps. NRP- try plant Phytols...called Vegapure...swiss brand I think...it lowered my cholesterol from 2.4 to 1.55...my Gp recommended it...natural....my liver enzymes are up though but the dr. here at the Doha Clinic sad è did you exercize 24 hours befre you did your test?..uh ...yes....I have to get it checked again in two weeks as it is SO hig...but he seems to think it is because I have not been drinking enough water (true) and tld me NOT to exercise for 4 days prior to doing the cholesterol check....weird but there you go. May have to cut my cholesterol med in half as well (fine by me)
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Sandee - glad to hear you are doing well.
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went to get refill of my mylan tamox today. Only could get novo-tamox and only 30 days. Said hopefully they will have more before I run out, but not sure. WTH - not like taking it is a choice. Will have to start phoning around in a couple of weeks if they don't get some. Keep thinking about taking a tami holiday, but it should be my choice.
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BGirl-same thing happened to me last month! There was a shortage of Mylan brand Tamoxifin...I called ALL over. Couldn't get it. Had to take an alternative for a month. Crazy... My friend is a nurse, she agreed that it's hard to switch- different manufacturers use different fillers and stabilizers in their Rx. Thus, different SE.
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Hi ladies
Been home since sat. Moms biopsy went well yesterday and we should know hopefully by the end of the week a little more... I am exhausted and I see I have slot to read and catch up on. Thinking of each of you.
Sherry... What a beautiful pic of you and Jules... Love it
Paula... I'm so sorry sweetie we are here for you and your sweet daughter love ya
Going to try and catch up a little
Love and hugs
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Hello,
Any side effects to the biotin...I have DCIS grade 2 in one breast, I have my lumpectomy on Nov 2, at Mercy Hospital in Baltimore, Dr. Friedman....I am concerned about Tamoxifen and hair thinning and the other side effects... I am 47 and not in menopause...
Julie
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littlejukie - if you look back on this thread a few pages you will see some of the ladies discuss biotin. Personally hair thinning has not been an SE I have had. Had many others, but not that. Someone will probably come along and give you some info. As for other SEs don't psych yourself out some have few and some have them and they go away. Not always inevitable. I'm 47 too.
Tink - glad to hear you are home, hope you get some answers soon. Take care of yourself. Thinking of you.
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bgirl - I did have hair thinning with Tamox - also nails were breaking very easy. I take 5000 mcg and not only did my hair grow back but my nails and skin are so much healthier. I have not had any side effects. I would say go for it and at least give it a try. You should start see results in about 4 weeks. BTW! You can get Biotin in the vitamin section of Walmart or your local pharmacy.
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hey bgirl... have had various SE's in the last 18 months ... for me it feels like a three month 'gerbil wheel'... I have one SE in full swing, which is replaced by another ... I did have hair thinning, (which lately seems to have slowed according to my brush and shower) ...preceeded by leg cramps, lately has been loss of balance ... who can keep up! beats the alternative ...I've always have had weak nails ... so I say biotin ... far as I know, can't hurt...
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bluelily - always trying to remember it beats alternative, but having bad gyn SEs at the moment.
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Sandee so happy you are loving the new chapter in your life. I love hearing about your adventures
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My pharmacy had a hard time getting the Mylan brand, too. I told the pharmacist I had bad side effects with the substitute (I didn't really, just didn't want to change it up at this stage), and apparently he put me on a "fill as it becomes available" list at the pharmacy. So when my next refill was due, they had it set aside for me.
My side effects seem to go from one thing to the other, too. Hot flashes always, though. For a while I had leg cramps, then hip pain, right now I have a bladder infection that's on its 2nd round of antibiotics. I don't know if that's related, but I like to blame EVERYTHING on Tamoxifen - haha!
Tink - I hope they come up with a good plan for your mother. It's so hard to ever know what to do. Last night I dreamed my mother had breast cancer again, but she didn't know it yet. My brother was keeping it from her because he needed something from her first. I was trying to figure out what he was up to and then I woke up. My brother is kind of a sneaky fellow. But it was a scary dream and when it's your mom it hurts so bad. I hope your mom is able to do chemo and has a good response. My ex-MIL had colon cancer when she was in her late 70's. She couldn't handle the chemo (she did a couple), so she just quit. That was 8 years ago. Age is such an important component. But maybe if she just did one or two she could have the same response?
Sandee - so good to hear from you! Glad you are having a great time and a great adventure. I'll have to have my adventures vicariously through you for now, so what will we do next?
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This is a Tamoxifen question so I hope I am in the right place. I was diagnosed 4 years ago. After single mastectomy and chemo, started Tamoxifen and gave it close to 6 months. I couldn't tolerate the awful side effects mostly with cramping and contorting of my feet. So I went off it with my oncologist's blessing. My NewAdjuvant online scores showed that it only gave me a 1% benefit anyways. Now, 2 1/2 years after my cycles have resumed, (I turned 49 today!) yeah periods?! My natural breast has been so incredibly painful along outer side and armpit while ovulating but more recently for the past 6 weeks, and has not subsided. Mammo and axilary u/s in August was benign. So my question is, I still have that bottle of Tamoxifen. I couldn't take the pain anymore two night ago. It had me awake begging for Motrin.
So my question is, is Tamoxifen ever used sporadically for breast pain? It doesn't prevent the body from producing estrogen, only keeps it away from receptors.0 -
Hi Koryn, Happy Birthday! I'm not sure I can answer your question, but, I think it would be helpful if your oncologist and ob/Gyn got together and figured out a plan for you. I've been taking Tamoxifin since June 3rd of this year, very little SE, just annoyances. However, my periods came back after ten months of chemo pause. I've had 2 periods and they are unbelievably heavy. So heavy in fact that they had me come in last week and they did an endometrical biopsy. Thankfully, the biopsy was ok, but my ob/Gyn, my oncologist and radiological oncologist got together this week and discussed everything. They are recommending a hysterectomy (done robotically). They're concerned with the ovaries producing large amounts of estrogen and the potential of future gynecological cancers and think it is the next prudent move. I'm obviously disappointed, gotten a few 2nd and 3rd opinions and everyone is in agreement that this be done sooner, rather than later.
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KorynH - Tamoxifen is not the answer. It's primary purpose is to block estrogen to the breast receptors. It sounds like something else is lurking. Since this seems to be an ongoing problem, I would see my MO or GYN ASAP. Don't let anyone brush you off. Keep at it until you get some answers and some relief.
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I was at that Simon and Garfunkel concert TOO!! Around 1980 or 81?
Jenifer
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So, I have officially started my tamoxifen routine. Wondering if the bone pain and aches are common to the SE's? Don't see them listed, but it feels almost like a Nuelasta shot. Anyone else?
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vicki, With Tammy it sometimes seems that any kind of side effect imaginable is possible. Yes, bone pain is deffinately a side effect.
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Had a great day! Participated in my first breast cancer walk. We all had a blast. With our pink hair, we were asked many times to have a group picture of us taken. I know I will do this again next year. The turn out was great and it was wonderful seeing all the people out in the cold weather and supporting the cause.
I am the one in the middle with the black pants.
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Vickilind61-yes to the bone and join pain. Some days I feel like 90+. Such a wonderful little white pill!
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Looking good Jo
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Can't find it in the US. It's a Canada product. I've used a product called Cholest-Off, similar to it. Didn't budget my LDL. I see it's at costco, but there is no costco where I live in NC, USA.
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