Bottle o Tamoxifen
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Two things ...
Re the tingling ... in my case it is my feet, permanent nerve damage (neuropathy) from the chemo (Taxotere). I have pain and balance issues. Acupuncture gave me quite a bit of relief but not all. I had to quit going, it was all out of pocket and I just could not afford it. But it was awesome, I hope to go again soon. My various docs said I could try taking Lyrica or something like that for the neuropathy, but the SE are scarey and I just wasn't down with pumping another pharmaceutical into myself. After the acupuncture, at least I can feel my feet now, but they still tingle and ache off and on.
And the libido/dryness thing SUCKS. My MO and my gyno both recommended Vagifem inserts, which is a topical estrogen pill you insert 2x a week, and it helps quite a bit with the dryness. They said since it was localized it would not fight the effects of an AI or Tamoxifen, and for me it was a quality of life issue. I'll risk it to be able to have sex with my DH once in a while.
Hope this helps a bit!
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Chabba & Girlpower, I have permanent nerve damage in my feet and my bad boob from radiation. Of course, my RO denied this could happen even after I showed him documentation I found on the internet. It baffles my MO. I was seeing a pain specialist who dx'ed all this. I tried Lyrica early on and had to stop taking it as it made my feet and ankles swell so much I couldn't get my shoes on - MO gave me that. Pain specialist has me on Nortriptyline which is a tricyclic antidepressant that DOES work on my pain. The added benefits in addition to no pain is much better sleep which results in much better mood and energy level. Specialist told me I may have to keep taking this for the rest of my life. I am not thrilled by that but if it works.......
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I got the results from the trans-vag/pelvic ultrasound baseline... not great. There might be a fibroid on my left ovary (I'll have to do another ultrasound in a couple of months) and the right ovary is full of cysts. Not a great way to start out on Tamoxifen. Not sure what the implications are. Anyone experience something like this?
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jocelyne - I had fibroids long before BC and had to take estrogen to shrink them and keep them under control. They are typically benign and nothing to worry about. Other than that, no real issues. Fast forward to BC and Tamoxifen. I started the little white pill Jan 3, 2011. Since then I have had 2 hysteroscopies (bioposies). Both times I have also had to have D&Cs. Two summers of this crap is enough. I see my GYN in June and this year I am going to push for a hysterectomy. I am post menopausal and don't need the plumbing. This is really the only big issue I have had - no other SEs to speak of. Keep us posted please.
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Jo, thanks for the info and your concern. Makes me feel less alone. The BC was enough to deal with, so I feel unprepared to deal with this fibroid and cyst issue. They are not even sure it's a fibroid but the gyn didn't seem particularly worried. She said to redo the ultrasound and an MRI to rule out cancer but she said doesn't think it's cancer. I'm still having periods on and off (Gyn said "enough with the periods - you're almost 54"... haha) and my uterus is fine (for now). I guess it's just a "wait-and-see" situatation. I'll talk to my MO in a couple of days. I just want to move forward. It's so hard.
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jocelyne - I so know where you are coming from. I was 52 when my GYN put me through menopause. Don't miss the periods at all. The favor he did not do for me was put me on Prempro. Little did I know just how dangerous this drug is. My Mo said he was 98% sure that is was caused my BC. I was on the HRT for 2 1/2 years. Can't do anything about that now but put it in the past and move on. Unfortunately, this just gives us one more thing to be monitoring. I sure hope it is nothing when you have your next ultrasound and MRI. Like I said, fibroids and cysts are typically bengin are nothing to worry about. We will get through this challenge together. Hugs!
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Wow, the prempro thing, that's terrible... we want to trust our doctors but sometimes they don't make good judgement calls. Thanks for your support - yes we will get through this. I'm going to try not to worry and just focus on healing and getting my energy back. Have a great evening
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I can so relate to you both. Just had an ultrasound 2 weeks ago and am also in the watch and see club. Apparently I have some cysts on the left side which is ironic since I have intermittent pain on the right. Will repeat the test in 6-8 weeks. Gotta love that little white pill.......Not!
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I wonder what happens if the cyst/fibroid issue worsens? Not happy for your situation but happy you posted.
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I suspect if it changes or worsens, there will be a hysterectomy in my future. Otherwise they will just keep close tabs on things. Only 8.5 more years to go.....lol
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I suppose the same would be true for me -- it seems like my female parts are rapidly becoming an endangered species
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Had a single cyst on one ovary pre tami, now have multiple on both, but they all look b9. Aparently they are quite common in pre-meno women on tamoxifen. Ovaries having last gasp at trying to produce estrogen or something. Usually what they call functional cysts. Usually fluid filled and not solid. Had thickening within 6 months on tami that was a concern. Had an endo biopsy in October. D&C and endo ablation in December. So far that seems to have taken care of major bleeding problems, but time will tell. My doc said ablation is only option for bleeding as can't use hormones to control it. Removing ovaries for cysts an option, but only 46 at dx and just turned 48 so it would mean surgical menopause and not sure ready to screw with my hormones any more at the moment ... body through enough in last year. Will see how it goes...
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I am very tired and also have joint pain. My doctor said to lose 10 pounds before my next visit. I am not getting anywhere with that. It is hard to exercise when you feel like sluggish crud. And I am very anxious.
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Although Tamoxifen is designed to block estrogen to the boobs it acts like an antagonist to the other end. That is what causes the cysts, fibroids, uterine thickening, etc. Basically, we are damned if we do and damed if we don't take that little white pill. I know at this point a complete hysterectomy is in my future. I don't want to face every summer with a hysteroscopy/D&C. That is no fun at all.
I have read about the studies saying 10 years of Tamoxifen may be the standard in the future. But, if you read the article closely, it is really taking about pre menopausal women. Of course, once that woman goes through meno then they are switched to an AI. For me, 5 years will be enough for me. It comes down to that all important personal decision.
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I am post menopausal, age 55. I had my ovaries out earlier this year after my niece was diagnosed with ovarian cancer. I was done using them, my MO was putting me on AI's at the time (that was awful, so I am on tami now). Ovaries are just little fricking time bombs, and if you are on estrogen blockers anyway ... I left the perfectly healthy uterus in place after research & consulting with my MO and gyno. I have had no female parts problems from the tami (been on it since 4/12) but I sure as hell am not taking the white devil for 10 years.
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Debbie - what was surgery and recovery like? I think that I'm headed for the same surgery.
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The only real side effect I have from Tamoxifen is that I have no memory... Forget about arguing with my DH, I can never remember my points... I have gone from someone who is always right to someone who admits defeat!
Interestingly... UCLA is doing a study on memory loss and breast cancer, I got lucky enough to get picked! During the study they are going to teach us how to remember again! Should be interesting. Will post any good tips
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DM13....so looking forward to your tips! I have always had the most acute memory and am stunned at my current mental functioning...e.g.,often can't recall even familiar names, and lose my train of thought in the middle of a conversation. Yikes!
And on a note of pure vanity, I am increasingly losing my hair the longer I take tami, and that is really bothering me. My nails are also in terrible shape, but it's the hair loss that feels upsetting. I know people suggest Biotin for hair loss, but I am loathe to put yet another thing in my body. Any other ideas? I feel like I am suddenly a really old woman with the joint pain, ugly hands, thin hair, poor memory and concentration, and constant fatigue. I am seriously considering asking my MO how crazy I would be to bag the tami and take my chances with diet and exercise. My oncotype was the lowest my docs had ever seen, at 4, (or so they said) which feeds my current thoughts of why am I keeping myself in this deteriorating condition. Crazy thinking??0 -
i also have memory loss......I thought it was still from chemo.
My biggest problem is weight gain. Anyone have trouble getting the weight to budge and found a solution.
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DM13 - Looking forward to hearing any tips you have. I also have memory problems which I did not have in the past and do find that I lose my train of thought in the middle of a conversation.
Lacey - I had hair and nail problems when I first started Tamoxifen. Others on this thread suggested taking Biotin 5000mcg. I did that and it has really worked for me. I have always had strong nails and they were peeling. Now back to nice and strong. Hair was falling out. Now the lady that cuts my hair on a regular basis can't believe how much thicker it is and how often I have to have it cut now - it grows like a weed. It worked for me and not sure it works for everyone but is it sure worth a try. It is inexpensive and you and pick it up in the Vitamin aisle of your local pharmacy or Walmart. Give about 4 weeks before you really start seeing changes.
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Jo, have you not had any side effects at all from the biotin? I read about it causing facial acne, and some other things I can't remember
. Thanks for your post about this.0 -
Lacey12 - No side effects at all from Biotin. In fact, I have seen improvements in my skin - alot smoother, nails are back to being strong. I don't need to wear fake nails, mine are just as hard. Unless mydoctor tells says otherwise, I plan on taking it for a long time.
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Jo1955...Is Biotin the same as Biosil?
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Dear all...Sherry, Heartandsoul, Tink, Jo, June, Julie....Paula....missing you ladies...Terry Fox run is this coming week so I am going to volunteer here and help out where I can...still not contact from the breastcancer folks in this community, despite my contacting them a number of times to say "Hey...volunteer with counselling experience here...anyone need a support system once they are diagnosed?"..can't imagine being diagnosed if I had not been in my own community...hard enough without your usual support systems...but so far, no contact other than 'we will be in touch'....seems odd to me but will have to try again. Think my friend being diagnozed with uterine cancer has triggered sadness in me...I have been on a happiness high since I got here but this week I have felt lonely off and on and sad ...I send up some love and thoughts to her every time I hear the call to prayer here in Qatar. Her surgery is on the 15th...this week. I know a number of you believe inthe power of prayer (or positive love...)...I would be grateful if you would send out some to Anita. She is a great woman...the person I would like to be when I grow up! (she is 20 years my senior and we have known each other sinc ewe worked in the transitin house together)...a lovely, kind and generous soul. Thanks sistahs!
As for my news, I feel great! Started choir last month and karate last week...so crazy for me to be doing that right now but what a great way to get my cardio up for the singing! Doin ga ton of walking...to the Souq (Market) and back is 7or 8 kms ...ditto for the choir practice. then walking around the neighbourhood for an hour or so and th esouq itself. Should have had that pedometer on today. Whoo!! Still dancing most Thursday nights...My cholesterol is under check and I do not have to have it checked again for 4 months!...will have my mammogram and surgeon appointment in July when I return to NS....will make a cardiologist appointment for the same time. I will also be in Philadelphia mid-July for an extended weekend if any of you are there ..it would be fun to hook up and say hi! Teaching the same level this term and still doing examiner training so I can be as busy as I want to be..a conference in Qatar in two weeks...first workshop at a conference since breast cancer so three years... so I will be nervous I suspect...and then going to a conference in Greece at the end of March for 5 days...whooo!!! I will have a couple of days to poke around as well so plan on exploring places I went with my sister 20 years ago and then will wander with my camera down little cobbled streets and relax in some coffee shops...perfect....but it is also Easter Weekend..same as last time I was there so...the streets will be crazy busy...had not factored that in on the whole equation....ah well.How crazy can it be hmm?
I am sending love and thoughts to you all...to those of us still having hair issues...it fell out the few months I was on tamoxifen and since I have arrived here...so i bought a water filter for my shower head and it is MUCH better..biotin was just one more pill for me to take..but I may try it again. I got rid of mine befor eI cam here but might see if I can find it here anyhow.
hugs and love ladies
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EmmaC...I am also trying to lose ten pounds. Just break it down into weekly goals. Im trying to do 15 minutes of wii active per day...then Im going to bump that up each week. Its just a mixture of jogging on the spot, lunges, squats, and some arm exercises. Im starting small so that its easier to stick with it. Dr Oz says to eat a greek yogurt before each meal...Im trying that too.
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Sandee, good to hear from you, glad you are doing well. Sorry about the friend. You will be glad you are not in NS this evening, predicting up to 3 feet of snow.... I'm sure your weather is better. Take care of yourself.
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Sandee, As usual, so glad to hear from you. Sounds like you are staying active and busy. On the other hand, I am so sorry to hear about Anita. Any kind of cancer is a bitch. Sending lots of prayers. You definitely don't want to be in NS right now. One very nasty storm is hitting that area. Stay safe and keep in touch.
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Jane/Jo,
Yes...not being in Nova Scotia this winter was good fortune..not a big snow or cold fan! and thanks for the thoughts for Anita. Wish there was a group like this for uterine cancer...it is so good knowing there is a support group and friends waiting to love you up. Think our thoughts will help.
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Love74....Thank you!
What does greek yogurt do for you and how much. I exercise 2-3times a week.
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emmac...dr oz says it stops fat from entering cells. I say its yummy so why not?!
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