Bottle o Tamoxifen
Comments
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Hi Karen -- I was dx'd the same week as the study results were published about the advantage of the extra five years, so I've always had the mindset of looking at ten years of meds. I'm dreading AIs from what I've read. Like you, I'm experiencing hot flashes and night sweats on tamoxifen, and my weight is higher than I'd like it to be (though I have not made an honest effort to lose weight just yet, so I carry a good bit of the blame). I told my MO I was not looking forward to AIs, and she said we would cross the bridge when we get to it since I'm still having regular periods -- not yet in menopause. My MO did say that the research is constantly evolving and that ten years might not end up being necessary. But my feeling is I will take the hormone therapy as long as it is recommended since I'm fortunately tolerating it ok, and it feels proactive to be doing something to prevent recurrence or new primary.
Just a question for others here -- is an AI always necessary, or can tamoxifen be used for the post-menopausal years? I've researched and read a lot, but I am not clear about the disadvantage of tamoxifen for post-menopausal women vs using AIs at that point. (I get why aromatase needs to be blocked after the ovaries no longer produce estrogen -- my question is why not just continue with tamoxifen at that point?)0 -
gemini - I'm 20 years post menopause and over 2 1/2 years on tamoxifen. Tried the Al's but the pain was horrendous for me. MO switched me to Tammoxifen. At 71 don't know if I'll do another 5 years. I don't know how much of my symptoms are due to tamoxifen and how much is age. Primary effects are severe fatigue, poor balance and weight loss.
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Glad to be of help RunFree...
As I work for a cancer research unit founded with money from the NHMRC I knew that information attributed to it was likely wrong. Didn't take much to check.
My onc has just had me have bloods to check my hormone levels and a bone density scan prior to our appt in a couple of weeks. He wants to talk about swapping to an AI now that I've done a year of tamox. There is some research showing that this can give even better outcomes.
Jenn0 -
Jo1955
I think she did not refer me to an oncologist because my tumor was so small and I was very negative about doing Tamoxifen. During their multidiplinary team meeting when discussing my case they actually gave me four options:
1. To do nothing after the lumpectomy.
2. To do radiation only.
3. To do Tamoxifen only.
4. To do both.
So I did the radiation but I really did not want to do Tamoxifen since I have such a reaction to medications. You are probably right about going to an Oncologist. I will bring that up.
Thank you for your advise.
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gemini - I am 5 years post menopausal and like Chabba could not take the AIs. I really didn't want to deal with the bone loss and joint pain. Have enough of those already. So Tamoxifen it is for me. Less than 3 years left.
Ivano02 - You are so welcome. My tumor was also small and grade 2. I did rads and then Tammi. As far as I know, no family history. My mom passed away in 1995 from pancreatic cancer so I have no one to ask. I figured I would do all I could - within reason - to not have to do this again. I have had quite an eventful journey so far and just want some sense of normalcy one of these days.
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as Jent28, being in cancer research, will probably agree with, there are new ideas and medications coming along all the time. We are each a bit different, so may react a bit differently to the same drug.
In fighting breast cancer, the same, we are all a bit different and each drug, even in the same category is a bit different. Originally I was started on Femara, oncologist said it was the best. Then just shy of three years from my original bc, we stumbled by accident onto my lung mets. My tumour score was 80. Right away my oncologist switched me to Tamoxifen and in 6 weeks my number was down to 56 and in 12 weeks down to 26. Now another 12 weeks later and it's 30, but for some reason, Tamoxifen is doing it for me but what Jent28 was the Femara doing all that time I dealt with the side effects?
I will take any kind of 'uncomfortable' side effects to live longer but wish they would get more into the genetic study of matching us that way to the best drug possible.
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I am also post menopausal, and my MO prescribed Tamox for me as soon as I completed radiation based (I believe) on the fact that my oncotype score was 4... As she explained, a four percent chance of recurrence given five years on Tamoxifen. She did say that there would be a possibility of switching to an AI after two years on Tamox, but after listening to my very real concerns about the arthritis I struggle with, she has agreed that we will stay with the Tamox.
Good luck to everyone ...these are tough decisions we all face.0 -
Post menopausal and also presrcibed Tamox for 2 years by two different MO's. I will be switching to an AI , but not sure which one. I have a mixed tumor ( lobular, ductal and micropapillary) and there is ongoing research determining which AI is best. I opted out of chemo with stage 2/ grade 2 so have been told by my MO that I have to stay on something for at least 5 years.
On the subject that Tam only works in the breast. I too was under the impression that it worked on breast cancer cells throughout the body.0 -
Earlier on this page justagirl spoke of being switched TO tamoxifen when her mets were discovered and the positive results she is getting. Breast cancer can migrate and occur in other parts of the body.
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TAMOXIFEN AND MIGRAINES,,,,,,AND HEADACHES
I HAVE HAD MIGRAINES SINCE 14 AND AM NOW 61. WAS ON FEMARA FOR 2 1/2 YEARS AND THEY MADE THEM WORSE BUT MANAGEABLE.
NOW HAVE BEEN ON TAMOXIFEN SINCE JANUARY DUE TO METS AND MY MIGRAINES HAVE BLOSSOMED - THE AURA'S ARE BACK, THE NAUSEA, AND THEY CAN LAST TWO TO THREE DAYS IF I DON'T GET AN INJECTION FOR PAIN RELIEF.
HOW MANY OF YOU SUFFER FROM MIGRAINES AND HEADACHES WHICH YOU ATTRIBUTE TO TAMOXIFEN?
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Took a deep breath and took my first tamixofen tonight. I am so worried about side effects I am nearly making myself sick. I read about FLASH side effects at first
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ndgrrl - what are FLASH side effects?
I so understand how you feel.
I know its easier said than done but try to stay calm - making yourself sick won't help!
Consider the start of Tamoxifen like any other stage of treatment - be kind to yourself - eat healthy, exercise moderately - you have coped with everything else up to now - you will cope with this too.
Very often what we expect is what we get.
When I began reading the SEs of Tamoxifen I got freaked out and some very kind ladies wrote to assure me that they are managing fine with Tamoxifen.
Its the uterine problems and cataracts that scare me silly at the moment - but I guess we will be told what to look for and what tests to do as check-ups.
Give your body some time to adjust to the Tamoxifen and settle down.
Write out all your fears and emotions here - it helps to verbalise them and put them down on paper. Often its easier to move on once you have expressed how you feel - especially to people who understand what you are going through.
Sending you hugs and calming thoughts.
Bounce
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Bounce - I totally agree with everything you said. I have been on Tammi since Jan 2011 and I don't really have any SEs other than all the uterine issues. I have said it time and time again, my case is not normal and most ladies I have talked to haven't had any uterine problems. It does take our bodies time to adjust and most of us find it doeable.
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Hi,
I had the word wrong it is called "Flare reaction"- I read about it on the American Cancer Society web site and when talking to my nurse cordinator (Thur)about having not started to take Tamoxifen she also warned me about the "flare" reactions. I had not heard of it previously
Did any one have any trouble with this?
Precautions
When you start taking tamoxifen for cancer treatment, you may get a "flare" reaction -- worsened symptoms that usually improve on their own. You may have increased bone pain and/or tumor pain. Talk to your doctor or nurse if you need extra pain medicines during this time. Tell your doctor if this does not go away within 2 weeks
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ndgrrl, I think a flare reaction is more relevant to people who have mets that are already painful or otherwise symptomatic. In your case, there's nothing left to flare. Does anyone know if I'm right about that?
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Arent we supposed to have uterine US on tamox? I was under the impression we needed to do this. My gyn said we would do one at one year mark, then she said notneeded. My new mo said same thing. Been on it over year now.
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fredntan, my MO said US (chest and abdomen) every three months for three years. I'm sure different doctors have different protocols, but none at all sounds odd to me.
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I wonder if different cancer centers have varying protocols for this. I know that many folks on this thread have had uterine USs, but I'm not sure if that was due to symptoms of bleeding (or like Jo's experiences) or just standard procedure. I asked my gyn about it at my yearly exam this past Spring and she said that given that I have had no symptoms at all, she did not think it necessary. She did say that I should call her immediately in the case of ANY bleeding. I've been on Tamox for 20 months now.
On a lighter note, have any of our new contributors noticed that some of your dreams are exceptionally vivid? I don't mean nightmare issues....just a very lifelike experience, but it was just a dream. That was something I noticed shortly after starting Tamox, which was really odd and fascinating.0 -
Very vivid dreams! I used to be able to wake myself up from dreams, but with T it all seems real. Generally they are not scary, but the one the other night with all the snakes was not fun!
I went to a new obgyn just to make sure I had good followup re: T and uterine issues. She did a Trans Vag ulstrasound and a uterine biopsy and said I would have one every year ( she did see some simple cysts on my ovaries, but said it was probably my own estrogen causing that - it was about a month after I started T) however my pap showed abnormal cells so I had another test which was fine. Now I go back in six mo for another US. It is funny, but my fear of uterine cancer is not that great.
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I would recommend anyone on Tammi ask their GYN for at least a baseline transvaginal US. I did it on the advice of several ladies here and I'm sure glad I did. I had one after being on Tammi for 6 months and ended up needing a uterine biopsy and a D&C. The next year I asked for another one. My GYN had not planned on doing one but went ahead and did it at my request. Once again, I needed another uterine biopy and a D&C plus he removed a 3 cm polyp. Third year, I had postmenopausal bleeding which lead to a complete hysterectomy. Is this all normal? Most likely not. I'm glad I pushed the issue and had that first one done.
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I think docs all have different protocols. My gyn said because I am definitely pre-menopausal, I don't need routine transvaginal ultrasound while on Tami unless I have symptoms. I happened to have had one (and a D&C for a uterine biopsy - thankfully negative) a year before being diagnosed with BC, so at least they have that on file as a baseline if necessary.
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I've decided to take a break from tamoxifen. I've been taking it for almost 2 years now and I hate the aches and pains in my joints and hot flushes. I take Effexor and Gabapentin to help me tolerate the hot flushes but these have had limited effect.
Sometimes it's difficult for me to tell whether my aches and pains are from my BMX and reconstruction (I have neuropathy) or the tamoxifen.
I still have aches and pains. So maybe the tamoxifen isn't so awful on me afterall. Maybe it's the surgery that's affected my nerves with the result of muscular aches and pains.
Anyway, I know others have taken a break and so I am going to give it a few weeks before resuming. If I do resume.
This is all very difficult sometimes and sometimes I think, well, I'm 52, I survived cancer twice now . . . can I just have some quality of life for the next few years??? Maybe this is as good as I'm going to feel. I just don't know.
I'm exhausted from it all and wish I could be like those of you who soldier on.
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Lifelover, wishing you the best as you sort out what to do about the Tamox.
I found that during my almost four week respite from it last spring, I was able to determine what were related SEs.......because most that I had suspected: increased hand pain, nightly sleep interruption, cognitive fog, hair thinning, and general fatigue, left after about a week. I slept, my former level of energy returned, and I was happily productive. The other good news is that when I resumed taking it, the side effects were less intense. However, some new ones appeared...seems Tamox can be capricious like that. If you decide to resume, I hope you experience softened SEs. You have been through a lot, and living in pain takes such a toll. I did find that starting a good daily exercise regimen with the guidance of a trainer familiar with survivorship has been a great help in terms of energy and joint pain reduction.
Hugs and best wishes to you as you sort out your new plan.0 -
Hi,
I started taking Tamoxifen on Sept 27th. Took all I could do to put that tablet in my mouth. I read the side effects and that was enough to want me to run for the hills, but at the same time I know that it will decrease my chance of this monster returing.
How long did it take for you to feel side effects. I take the Tamoxifen a bit before I go to bed and finding I can not go to sleep and when I do I wake up hot, so I uncover, then I am cold , so I cover back up then hot again.. GRRRRR ,, This has been happening for a few days now and I am in need of sleep!! I was told there is something like a "flash" or something like that- effect for the first couple weeks? Where symptoms get worse, my breast pain sure was worse last night as well. Wondering if anyone else has had these problems?
Thanks so much!0 -
ndgrrl - Tamoxifen se's vary a lot. Some find taking it in the am helps with sleep issues, taking melatonin, an over the counter sleep aid works well for me. Fatigue and joint pain are also common. I was 20 years post menopause when I started Tami so have not had hot flashes but younger women often do. Younger women are sometimes pushed into early menopause.0
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ndgrrl, as Chabba, I was also postmenopausal when I started Tamox, but do still occasionally get the "heat flushes", something I rarely experienced during menopause. My guess is that I mantained a pretty high estrogen level back in those days, so had minimal menopausal symptoms. And that estrogen just fed the cancer like mad....my cancer was 100% estrogen positive. So now, with Tamox, I am paying the price with the all night body temp dysregulation. Some folks use gabapentin (neurontin) for that and some use Effexor. Gabapentin was too strong for me, and It was never recommended that I try Effexor, maybe because I don't have much of a heat flush problem during the day. I did change my time for taking the meds to AM, and that may have helped a little...e.g., I did not get noticeable heat flushes a half hour after I took the pill, just when I was trying to get to sleep.
I have yet to find a magic bullet to deal with the sleep problem, and it is discouraging to never have a good night's sleep especially since I never had a problem with that before cancer. I wish you better luck!
Does anyone take Ambien for this problem? I think that seems extreme for me, but DH keeps wondering if I should ask the doc for a trial of that.0 -
I take tamoxifen in the a.m. and Effexor (75mg) at night. The Effexor knocks me out. In fact I think I may be sleeping a little too much. That is a real change for me since I have had sleep issues for years due to perimenopause.
The hot flashes were crazy a couple weeks ago. I cut back on caffeine, increased my exercise, and basically cut out sugar. Things seem better now. OR it may have been a menopause thing. Other ladies have mentioned that the HF come and go.0 -
Am well into my 2nd bottle of Tami and I guess I'm fortunate with the SE's. Excruciating pain in my toes of all places just after I started taking but that lasted only a couple days (knock wood). For sleep issues, I take liquid melatonin which helps me stay asleep, having difficulty getting tired enough to sleep as my mind feels so charged up. For the hot flashes, I got a Frogg Togg towel (from Bed, Bath & Beyond - if you go this route, call around, some local stores were completely out) which holds in moisture, I wear it around my neck at home and to sleep. Don't keep it too wet but it's still damp in the morning. That seems to be helping.0 -
I need to try to Frogg Togg. My feet and knees hurt quite a bit about a month ago. May have been T or from painting on a ladder. In any case someone suggested diet tonic water (has quinine in it). I've been drinking it. No pain now, but also I've been stretching more. Who knows!0
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Lucy, you can probably get it online but B3 has 20% off coupon so if I remember, it's around $12 for the smaller one which is like a small scarf size and does the trick. Hope this helps! Between the melatonin and Frogg Togg I get a good night's sleep, just not enough of it0
