Bottle o Tamoxifen
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bethq,
I am one who does not have any side effects. The first few months I had spotting and irregular periods, but now everything is back to normal. I walk 4 miles a day (that is a lot, I know, but it love to walk). I have been eating healthier, and I have lost 18 lbs since I started taking tamoxifen in January, so I am about back where I wanted to be with my weight. (I have heard people say you can't lose weight on tamoxifen, but that is not true in my case, so there is hope if anyone is wondering.) I am also a positive thinker, and believed from the beginning that I would not have side effects. Not sure if all those things helped, or if I just got lucky. I will not question it, though!
So, don't despair! There are those with no side effects, or in my case the minor side effects I had went away after a few months. Maybe it will just take awhile to adjust. Good luck
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It s good to hear from folks who have no or minimal side effects, and of course diet, exercise, and positive outlook can all be helpful in this regard (I concur that it is quite possible to lose weight on Tamox, as I follow a healthy diet and daily exercise regimen and have lost over 30 lbs in a year and a half), but I have to say that my positive outlook was trumped by my body's physiological response to the estrogen shifts. I had only known women who had good experiences on Tamox, and had not even read about the range of side effects, so expected that I too was home free. Sadly, not so, and was I surprised.
After two plus years trying to manage a deteriorated q of l, (sleep issues, fatigue, significant cognitive fog, severe allergies) my MO agreed that it is not the drug for me. I am no longer taking it, feel "back to normal" and will revisit the idea of taking an AI when I see her in the fall. Wish my positive thinking had been a more operative factor!
I do agree, however, that there are shifts in SEs over time.....it is a rather capricious journey for many.
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Lacey, how long did it take to get your energy back? I stopped taking it yesterday. I still feel tired and just stay in bed. I have to go to work now and I am dragging my feet.
For the Tamox users, if you can do it, then do it. In my case I am jeopardizing my job and I need the income. I am not productive and memory loss is another issue I have that I can't have in the type of job I do. My calculator showed 15% recurrence without Tamox and 10% with Tamox. For 5% I think I am taking the risk but live life and be able to work.
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Thanks everyone for the advice. I do not understand doctors who think they know our bodies better than we do and I am to trust him to know this. NOT gonna happen. This is my life, the only one I have and I need to be proactive. I may have had to break down and cry to get an MRI but I will be getting one FINALLY( first one ever) In Sept and I see the breast surgeon in a couple weeks. Not looking forward to having to argue with him too why I want a biopsy. They should have given me one a year ago or taken this out with my cancer as its located right there!!
My cyst is called a complex cyst so I have been having 6 months ultrasounds. My sister had one also beside her IDC and it turned out to be in situ cancer. That is what has gotten me so concerned. Mine was never checked. Mammo didn't fine hers either- it was found by fluke when they biopsied the cancer they hit her cyst by mistake. She was diagnosed with breast cancer 2 months after I was - her cancer was in the same exact spot- same depth and same exact size. Kind of scarey
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Headeast, it took me two- three weeks to regain my energy....but that was after 2+ years on Tamox! It just gradually kept getting better, and probably in no small part because my sleep improved so much!
ndgrrl, you are wise to advocate for yourself in this very unique, worrisome situation. Best of luck going forward!
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Do a lot of women lose their periods on Tamoxifen? It's been 37 days since my last one. I started it on 4/4. I even took a pregnancy test yesterday and it was negative. My partner and I have been using condoms since his vasectomy on 4/4. He isn't clear yet so I freaked out a little despite the condoms. My periods since December had been 25-30 days apart. My last one on May 10th was only 22 days after the previous one. I wouldn't mind losing the periods.
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thank you, Lacey. I feel more awake ow. Still tired though.
Juliecc, My period stopped with the first chemo.
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Headeast, I was lucky enough to not have chemo but I think Tamoxifen can stop it too?
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Beth, I am another gal on tamoxifen with no side effects, not a one. I do work out, walk and lift weights, five days a week. I started two weeks after my MX, very light, and believe it has helped with everything. I even had 12 nodes removed and still lifted the weights. I am not pain free yet, but not enough that it hinders anything I do. Mine is mostly nerve pain and some pectoral muscle tightness. Tamoxifen is the only drug I take. I also drink a glass of soy milk a day. I have no problems with mood. If anything, my mood is more stable since starting tamoxifen. My husband agrees. Not that I was a beast before, but I did get a little chippy right before my period, which is no more.
Julie, I have not had a period since starting tamoxifen in January. That's a good side effect, in my opinion. Kim
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ndgrrl,
I was horrified and saddened to read about your terrible doctor! You are right, this is your body and your health. I am so glad you are taking charge, and you will finally get your MRI. I agree, it makes no sense why they didn't just deal with that cyst at the time of your surgery. And I think it is just natural for any of us who have gone through breast cancer to be fixated on our breasts!
I had a similar situation years ago with a terrible gastroenterologist. I had been suffering terribly with pain in my upper middle back and occasionally what felt like someone was reaching through my chest and grabbing my spine, I thought I was having a heart attack! The doctors couldn't find anything wrong. It had gotten so bad that I brought a yoga mat to work, and I spent most of the day on the floor beside my desk, due to the pain. Well, long story short, they sent me for a cat scan which found that my gallbladder was completely packed with stones, and was very inflamed. My PCP called to give me the results, and said I should make an appt. with the gastroenterologist, and he would refer me to a surgeon. When I got there he just tried to rush me out the door telling me it was only irritable bowel syndrome. Then he told me it couldn't possibly be my gallbladder, because gallstones don't cause pain, that people have them all the time and don't know it. I asked about my cat scan, which he apparently hadn't even looked at, and asked about surgery. He said, "well, if you insist on me giving you a referral to a surgeon, I will. But you will just be wasting everyone's time!" So, scared and intimidated as I was, I had to say, "yes, I insist" and he begrudgingly gave me the card. Thank God, the surgeon was wonderful, and said even though it is very unusual for gallbladder pain to present in the upper middle back, it did occasionally happen. After gallbladder surgery, I felt like a million dollars!
So, I feel for you. Stay strong!
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Julie, my MO explained to me that tamoxifen doesn't necessarily stop periods; she said that in most cases, women are already in perimenopause when they start tamoxifen, so it's often coincidental.
I started tamoxifen a few months before my 49th birthday, and I've been on it for a little over 14 months at this point. My cycles got longer for the first seven months, and I now haven't had a period at all in the last seven months. It was an abrupt ending -- no spotting or every-two-weeks menses like I've heard happens in "normal" menopause. But I'm also half-expecting that I could still have a period. My MO said my hormone levels will be checked after one full year of no periods to see if I'm truly in menopause. Not sure if the tamoxifen is a contributor or the fact that I'm now 50 and probably in natural menopause.
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Julie,
I started tamoxifen last October and did not have a period for 7 months (I was very regular before), then I got a very heavy period, and 28 days later another one. I did not do chemo. I was very suprised that my period returned - I thought I was done. Many of my side-effects have gotten better. I think my body is just adjusting to being on tamoxifen.
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Juliecc---I am on Tamoxifen, no chemo or rads. Started it Feb 2013 so been on it for 16 months. Totally regular periods for the first 12, then had last regular one Jan 2013 then not another till March. Now I haven't had one since. Alot of my issues could be related to the Tamoxifen but alot could be related to perimenopause also. I've got nausea, dizziness, weight gain, bloating, insomnia, night sweats (but not hot flashes), difficulty concentrating and remembering things, muscle/joint pain, headaches, zapping feelings in my head, etc. I figured I was well into menopause since I'm about to be 51. Had my gyn run hormone levels and I am NOT in menopause. He said I'm probably in perimenopause despite my estradiol levels being sky high. He said Tamoxifen does that. I am now looking at a hysterectomy cause the Tamoxifen has thickened my endometrial lining, enlarged my uterus, given me fibroids as well as a few ovarian cysts. All of those things can also contribute to some of my issues as well. My gyn said Tamoxifen can mess with your periods but most important is to keep an eye on your lady bits
I asked for a transvaginal ultrasound even though I wasn't having any issues and found a bit of a mess! So, yippee for no more periods....maybe not so yippee for reasons why!0 -
hi all - I'm always interested to hear how others are doing on this drug, and though in would share my experience. I've now been on tamox for about 6 months. I had fairly significant hair thinning that seems to have subsided now (crossing fingers that it does not return.). I had one period after starting and a little spotting and that's it. I was also feeling just generally "blah" and tired. Saw my onc, and he tested my thyroid (waiting for results) and suggested I move to taking tamox in the morning to see if that helps with hot flashes at night. He said to give it six weeks. So far, I think I'm generally sleeping better and not feeling as tired/blah. I also walk quite a bit (try for 70,000 steps each week), do an hour of yoga a week and a tiny bit of meditation. My onc suggested meditating at night before going to bed, as he said it can sometimes help move you to a deeper sleep. I have to out some more effort into trying that. Hopefully it helps.
Ridley
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Thanks, Ladies.
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So for the last few days me and darlin hubby have REALLY been getting on each others nerves. He calls me a little while ago and ask if I'm taking any new medication, my response no same old shit Tamoxifen, blood pressure pills, Vitamins, potassium and my Bio-flex, what that's not enough for ya, think I need to take more. He says no you just been real edging and moody, told him I'm sorry if you think this just all mysterious goes away it doesn't, sorry I'm crashing. Thank goodness he's not awake when I'm having my crying fits! Believe I try not to bother him or anyone else with how I really feel. But dang a person can slip every now and then!
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A few weeks ago I wrote how I had pretty much made up my mind to quit tamoxifen. I forgot to add a biggie! I developed macular degeneration in one eye and my MO said yes, that tamoxifen has been known to cause that as well as cataracts. I may lose vision in the eye and I can't risk it happening to the other one as well.
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Corky, will you be taking anything else instead?
I went to see my MO for my six month follow up and stopped taking Tamox two days before that, because of extreme fatigue and brain fog. He was ok and did estradiol tests and once tests come up I might start Anastrazole or another drug. I read good things about Fareston. Does anybody take it?
Still in fog for the next two weeks.
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I doubt very much I will be taking anything else instead. I tried Aromasin and that had too many SEs. My MO said that since I have fibromyalgia that would be the best for me. The other AIs would be worse. Between Aromasin and Tamoxifen I now have macular degeneration, neuropathy, reflux, carpal tunnel, ringing in my ears and arthritis in my knees. These are in less than a year, mind you. For the extra 5% "insurance" that a hormonal would give me I am really going to have to be talked into trying another one.
There are no guarantees with this disease. There are women on these boards who did their five years on a hormonal and still ended up at Stage IV. There are those who didn't take anything and the disease hasn't progressed. There is no telling and no easy answer. Sigh.
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Corky, sigh indeed... Hugs to you and hoping that with good care and time some of those painful conditions can remit.
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Hi ladies!
I literally just received a call from Mylan Pharmaceuticals that their tamoxifen is back on the market. I had called and emailed them when they initially took it off and apparently my name and phone number remained on their call list. I think I may be a little giddy right now!
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They called me also. They did tell me it was because of "all" the calls they received to bring back the medication. All of our time was worth it!
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if you are not taking any medicine, Corky, have you thought about any alternative medicine instead?
I am seeing a doctor on Monday who now practices alternative medicine with cancer patients.
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I will talk to my MO about this at the end of the month. I eat healthy and see a naturopath as well as my PCP. I just have to weigh the cost benefit of hormonals. I am in my early 60's and don't want to do any more damage to this body. My family is against hormonals too because they see the toll they've taken on me. So there is that to contend with.
I appreciate your input, Headeast.
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Corky, my family is also against the Tamoxifen. I see my dad suffering because he comes to visit and I just can't stay awake. I fall asleep and I have never been that way. I was a very active person.
For me taking Tamoxifen the risk of recurrence is 10% instead of 15%. For just 5% and not being able to enjoy the rest of my life, short or long, doesn't make sense.
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Zyrtek does not help. I take regularly. Will be trying claritan to hopefully get some relief.
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Hi Ladies!
I'm trying to figure out what the general time frame is for SE's with Tami?Started Tami a week ago, and so far no SE's. But I have searched and can't really figure out when they seem to hit? My MO called it in, so I couldn't drag my feet if I wanted to on starting it. Then a F/U is scheduled for a month later to check on SE's. I have my ovaries, but had a partial hyst, so no period. I've never had a hot flash in my life, I just turned 47 and know I'm still ovulating as I still get the tender breasts etc.
I was very high ER+ 92%, but weak positive PR+ with 9% at biopsy. My lumpectomy showed ER+ 92% PR- with 1% and I was told this doesn't happen that often, usually they are more balanced and the PR would be negative at many labs. My MO said for all intent purposes I was ER+ PR- but treatment is the same.
I have really tried to keep my attitude in check, eat healthy, maintain my weight and exercise. I'm not at 100% in terms of stamina, but ready to be healthy in body, soul and mind. This chapter really put a lot of stuff in perspective. Hoping that maybe I'm lucky at the SE's will be minimal, but am not sure if they are suddenly going to hit me out of left field soon?Thank You!
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Mommyto3, I started Tamoxifen on April 4th. During the first 3 weeks I had fatigue, trouble sleeping, vertigo (which I had months before diagnosis), but no hot flashes. The fatigue and vertigo mostly went away after a month and the hot flashes started around 5 weeks. They aren't too bad, though. They are more like warm flushes that last a couple of minutes. When I was taking it at night, I felt like I woke up several times to throw my blanket off of me and pull it back on. I switched to taking it in the morning and it is much better. I had 2 periods since starting and my last one was May 10th, so they might have stopped. I see my gyn and onc tomorrow.
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momof3boys. Good question. I'm doing the waiting game too and started tamoxifen 5 days ago. So far no SE. I am ER+ and Pr - just like you. It seems people,are saying the SE don't show till 3 weeks. I have a gyn appointment today. This is a good question to ask her. Keep ya posted.
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Ok, so I just call Mylan myself YES they are back in production with immediate availablity!!!
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