Anyone taking 5 mg Tamoxifen: Do you have side effects with 5 mg?

Hi
I take allergy meds already.

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Hi
I started tamoxifen 5 mg this week . I have had a very bad headache just feel off balance I did speak with my pharmacist he said this was normal . To take tylenol everyday. hopefully it eases off can anyone else share with me what they have gone through on this amount of medication. How long did tge side effects last.

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I had such a terrible time with Anastrozole that I took nothing for a full 9 months. Then, on the one-year anniversary of my lumpectomy, I paid out-of-pocket for a HerScan ultrasound here in Texas where we winter and it did not go well. I was sent for a diagnostic mammogram and they wanted to do a stereotactic biopsy. I had a stereotactic biopsy in 2018 and it was extremely painful and took months to heal. I had a second biopsy on Dec. 7, 2021 that found the 11 mm. tumor, but it was NOT a stereotactic biopsy. The needle used looked like a pig's curly tail and it was far easier on me. I also knew that they could gather all of my annual mammograms to see if there had been any changes from mammogram to mammogram, and I held out for that, which took a while, but did not involve plunging a 3-foot long needle into my right breast. (There is still calcification on both sides.) My new Texas oncologist went to war to get the oncotype I should have had back at the beginning, which my Illinois oncologist refused to order, saying simply, 'You don't need one." At that time, I knew so little about b.c. that I thought HE was the expert and certainly would do what was in my best interest(s), but I did not know that he had a reputation for never ordering anything expensive that might get him into trouble with Medicare. ("He doesn't want to get dinged by Medicare.") So, no oncotype for me, even though they have been standard of care since 2013. When my Texas oncologist got me the oncotype, in the spring of 2023, 17 months had passed and my score was 29, which is NOT a "good" score. (36% chance of a recurrence without 5 years on Tamoxifen; 18% chance of you take Tamoxifen for 5 years.) So, I agreed to begin taking Tamoxifen, but I told my Texas oncologist, honestly, that I had had such a bad experience on Anastrozole (crippled me and put me in a wheelchair for 6 months, among other side effects) that I would tip-toe into the Tamoxifen waters taking only 10 mg. And, on top of that, after reading about the half life, I took 10 mg. only every other day, for a grand total of 40 mg. weekly, versus the 140 that I was told I should be taking. For 2 months, in effect (April 23, 2023 to June 23, 2023) I was on 5 mg. daily. The biggest thing I noticed was that I had to pee ALL the time! I am a Type II diabetic, as well, and with these 2 diseases I spent every moment making sure a bathroom was nearby. Everything below the waist felt dry and itchy. But I was handling it fairly well until my Texas oncologist called me up on June 23 and said that the Italian Women's Study of 700 women that took a "BabyTam" dosage was comparing apples to oranges, as their tumors were in situ and mine had broken through. He said that the only clinical evidence of efficacy they had was for 20 mg. and I should move up to that dosage ASAP, which I did. So, from June 23 until Aug. 30 (2023) I took 20 mg. On 20 mg. I could not stay up for more than 3 hours. I had extreme fatigue and no amount of sleep alleviated it. (We were supposed to go floating down a river here in Texas in inner tubes, but it took 3 and 1/2 hours, and I would have probably been at the bottom of that river if I had attempted to joint the family reunion group that made that trek.) I then started getting UTIs and the worst one was right before New Year's Eve. Nothing in my normal arsenal of meds touched it. I took Amoxicillin. Nothing. I was given another strong antibiotic (started with the letter "N") and nothing. I suffered with the itchiness and discomfort that a UTI brings with it for over 2 weeks and finally had to throw myself on the mercy of my oncologist and go in, in person. They got the UTI under control, but the strong antibiotic left me with a fungal infection which required ANOTHER medication. Bloodwork was done, and the bloodwork done on March 7, 2023, which had been fine, was now, on Aug. 30, 2023, after 5 months on Tamoxifen, was not fine. Ten (10) things were "off" and the fatigue and itchiness and dryness and discomfort and constant nagging urge to urinate were all part and parcel of the experience. I went off everything on Aug. 30, 2023. Of course I am apprehensive about not taking anything, with the onco score of 29 and a 95% estrogen positive tumor, but I'm 78 years old (79 in July). While I don't doubt that the "clinical evidence" says you have to take 20 mg., there are so few women in their 70s even IN those studies that I question whether it wouldn't have been a better idea to have let me struggle along on the 10 mg. every other day (or 5 mg. daily). As it is, I quit everything and am concerned about finding a good test to keep track of some spread. There don't seem to be any until you experience symptoms of the cancer having spread, which is not encouraging. I've asked about the C-27 or whatever it is and the Signaterra and I have had mammograms every 6 months (although my Texas oncologist said, "I'm not worried about it coming back in your breast; I'm worried about it going somewhere else." So am I, but what are my options? I cannot tolerate A.I.'s and should never have been put on them, as I was an over 20 year participant in a study for people with a strong family history of arthritis and damaged joints. Anastrozole crippled me and my left knee will never be 'right' again. It also gave me excruciating joint pain (actually had to have shots in my left knee and Tramadol for pain), brain fog, blurry vision from dry eyes, dry skin, teariness, mood swings, insomnia and vivid violent nightmares. Two doctors here in Texas have told me I should never have been put on A.I. drugs with my well-documented over 20 year history in the MOST study and I believe them. So, that leaves Tamoxifen, and on 20 mg. of that I cannot function and face serious consequences from UTIs run amok. One of "Charlie's Angels" (Tonya somebody) died from a UTI infection at the age of 62 and she was an athlete and a runner, plus my best friend Nelson Peterson died from a UTI infection, the result of cancer that left him dependent on a colostomy bag and, subsequently, he had repeated UTIs and was hospitalized for same many times. If anyone knows of a test that will "track" cancer in our bodies (beyond the annual mammogram) please share that information. I need "protection" from the drugs we have been told will "protect" us and I can't see spending my last couple (hopefully) decades of life crippled and uncomfortable and laid up with excruciating bone and joint pain and/or extreme fatigue, on the off chance it might prevent the universally dreaded recurrence. I would really like to get into one of the studies now ongoing to find errant cancer cells in our survivors' bodies and stomp them out.

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I had such a terrible time with Anastrozole that I took nothing for a full 9 months. Then, on the one-year anniversary of my lumpectomy, I paid out-of-pocket for a HerScan ultrasound here in Texas where we winter and it did not go well. I was sent for a diagnostic mammogram and they wanted to do a stereotactic biopsy. I had a stereotactic biopsy in 2018 and it was extremely painful and took months to heal. I had a second biopsy on Dec. 7, 2021 that found the 11 mm. tumor, but it was NOT a stereotactic biopsy. The needle used looked like a pig's curly tail and it was far easier on me. I also knew that they could gather all of my annual mammograms to see if there had been any changes from mammogram to mammogram, and I held out for that, which took a while, but did not involve plunging a 3-foot long needle into my right breast. (There is still calcification on both sides.) My new Texas oncologist went to war to get the oncotype I should have had back at the beginning, which my Illinois oncologist refused to order, saying simply, 'You don't need one." At that time, I knew so little about b.c. that I thought HE was the expert and certainly would do what was in my best interest(s), but I did not know that he had a reputation for never ordering anything expensive that might get him into trouble with Medicare. ("He doesn't want to get dinged by Medicare.") So, no oncotype for me, even though they have been standard of care since 2013. When my Texas oncologist got me the oncotype, in the spring of 2023, 17 months had passed and my score was 29, which is NOT a "good" score. (36% chance of a recurrence without 5 years on Tamoxifen; 18% chance of you take Tamoxifen for 5 years.) So, I agreed to begin taking Tamoxifen, but I told my Texas oncologist, honestly, that I had had such a bad experience on Anastrozole (crippled me and put me in a wheelchair for 6 months, among other side effects) that I would tip-toe into the Tamoxifen waters taking only 10 mg. And, on top of that, after reading about the half life, I took 10 mg. only every other day, for a grand total of 40 mg. weekly, versus the 140 that I was told I should be taking. For 2 months, in effect (April 23, 2023 to June 23, 2023) I was on 5 mg. daily. The biggest thing I noticed was that I had to pee ALL the time! I am a Type II diabetic, as well, and with these 2 diseases I spent every moment making sure a bathroom was nearby. Everything below the waist felt dry and itchy. But I was handling it fairly well until my Texas oncologist called me up on June 23 and said that the Italian Women's Study of 700 women that took a "BabyTam" dosage was comparing apples to oranges, as their tumors were in situ and mine had broken through. He said that the only clinical evidence of efficacy they had was for 20 mg. and I should move up to that dosage ASAP, which I did. So, from June 23 until Aug. 30 (2023) I took 20 mg. On 20 mg. I could not stay up for more than 3 hours. I had extreme fatigue and no amount of sleep alleviated it. (We were supposed to go floating down a river here in Texas in inner tubes, but it took 3 and 1/2 hours, and I would have probably been at the bottom of that river if I had attempted to joint the family reunion group that made that trek.) I then started getting UTIs and the worst one was right before New Year's Eve. Nothing in my normal arsenal of meds touched it. I took Amoxicillin. Nothing. I was given another strong antibiotic (started with the letter "N") and nothing. I suffered with the itchiness and discomfort that a UTI brings with it for over 2 weeks and finally had to throw myself on the mercy of my oncologist and go in, in person. They got the UTI under control, but the strong antibiotic left me with a fungal infection which required ANOTHER medication. Bloodwork was done, and the bloodwork done on March 7, 2023, which had been fine, was now, on Aug. 30, 2023, after 5 months on Tamoxifen, was not fine. Ten (10) things were "off" and the fatigue and itchiness and dryness and discomfort and constant nagging urge to urinate were all part and parcel of the experience. I went off everything on Aug. 30, 2023. Of course I am apprehensive about not taking anything, with the onco score of 29 and a 95% estrogen positive tumor, but I'm 78 years old (79 in July). While I don't doubt that the "clinical evidence" says you have to take 20 mg., there are so few women in their 70s even IN those studies that I question whether it wouldn't have been a better idea to have let me struggle along on the 10 mg. every other day (or 5 mg. daily). As it is, I quit everything and am concerned about finding a good test to keep track of some spread. There don't seem to be any until you experience symptoms of the cancer having spread, which is not encouraging. I've asked about the C-27 or whatever it is and the Signaterra and I have had mammograms every 6 months (although my Texas oncologist said, "I'm not worried about it coming back in your breast; I'm worried about it going somewhere else." So am I, but what are my options? I cannot tolerate A.I.'s and should never have been put on them, as I was an over 20 year participant in a study for people with a strong family history of arthritis and damaged joints. Anastrozole crippled me and my left knee will never be 'right' again. It also gave me excruciating joint pain (actually had to have shots in my left knee and Tramadol for pain), brain fog, blurry vision from dry eyes, dry skin, teariness, mood swings, insomnia and vivid violent nightmares. Two doctors here in Texas have told me I should never have been put on A.I. drugs with my well-documented over 20 year history in the MOST study and I believe them. So, that leaves Tamoxifen, and on 20 mg. of that I cannot function and face serious consequences from UTIs run amok. One of "Charlie's Angels" (Tonya somebody) died from a UTI infection at the age of 62 and she was an athlete and a runner, plus my best friend Nelson Peterson died from a UTI infection, the result of cancer that left him dependent on a colostomy bag and, subsequently, he had repeated UTIs and was hospitalized for same many times. If anyone knows of a test that will "track" cancer in our bodies (beyond the annual mammogram) please share that information. I need "protection" from the drugs we have been told will "protect" us and I can't see spending my last couple (hopefully) decades of life crippled and uncomfortable and laid up with excruciating bone and joint pain and/or extreme fatigue, on the off chance it might prevent the universally dreaded recurrence. I would really like to get into one of the studies now ongoing to find errant cancer cells in our survivors' bodies and stomp them out.

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Hi
I would not get too worried about forgetting things stress does a lot to people. I have a stomach medication I have been on for years so I haven't had any issues with my stomach. As far as the getting up a lot at night I think that's a normal part of aging but my doctor just put me on vagifem. It is helping you can also try vaginal moisturizers I think replens is one. As we age we lose estrogen and then to have an estrogen blocker It does cause more issues with going to the washroom Maybe talk to your doctor about it

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Hi
Wow, you have been through the wringer. I am so sorry you have suffered so bad. Did the doctors never address your vaginal issues. I recently went through chronic UTIs my GP who I no longer go to was an idiot would just yell at me. My oncologist put me on vagifem and it works. It is a tiny tablet that you insert into your vagina to get the estrogen back in that area and it is safe to take if you've had breast cancer I can say that since I started it I do not have as much frequency I don't have pain anymore. Just wondering what your original breast cancer diagnosis was. I am 66. Just finished radiation I had a lumpectomy in December second surgery in February Sentinel nodes clear. I started 5 mg of tamoxifen first week was rough this week it feels like it's leveling out. I had a microscopic break
in one wall in the pathology but my oncologist said 5 mg is fine for dcis with a slight break he actually showed me studies that have been done in France. I hope that you find the relief you need for your bladder and vaginal issues. I cannot take AI because I have osteopenia and a compression fracture in my spine.

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The French studies you mention sound like the "baby tam" study of 700 Italian women that I, too, was aware of. I dropped back to 10 mg. every other day (baby Tam) because of the Italian study and then was told, 2 months in, that their tumors were "in situ" (had not broken out of the milk ducts) and mine, having been an invasive ductal carcinoma, was not the same. That is why he wanted me to step up the dosage from 5 daily (10 every other day) to 20 daily. And it was the "stepping up" that did me in. I could not tolerate 20 mg. a day, as described. My original presentation appeared to be positive. I think the stage grade was 1A and it was an 11 mm. tumor found early via mammogram. It was 95% estrogen positive and the surgeon got good margins and a seminal lymph node biopsy was done and showed no spread to the one I know of that they removed and studied. (Don't know if more should have been taken.) And I began taking 20 mg. of Anastrozole on Feb. 1, 2022, when my surgery had been on January 27, 2022, so that was less than a week out of surgery and I was battling a bad seroma (infection) with 500 mg,. of Cephalexan taken every 4 hours for weeks. (My radiation did not start until about May 22nd and the bone scan was very late in the game, also, and he refused to order an oncotype at all. I've now been reading up on late recurrence, and I am the perfect example of someone who might well have a late recurrence, because of the seroma (one of the indicators), being overweight, etc. My bones are now in to osteoporosis (probably thanks to Anastrozole and who knows if the radiation also contributed?) and I know, for a fact, that I was at -2.4T at my last endocrinologist appointment. I go in again in May (2 years since the last bone scan) to see if the 1200 mg. of calcium I take daily has helped or hurt. There are so many things I now question. My treatment by the Illinois oncologist has destroyed much of my faith in the medical system. He just didn't seem to care and was either woefully uninformed or simply neglectful and dismissive. I am unwilling to completely destroy my previous quality of life by taking a pill that is guaranteed to give me the worst pain I have ever experienced and might, also, cripple me again. I am not willing to suffer from UTIs needlessly, eother, and the constant feeling that you have to urinate (whether valid or not) is also not a good way to go through life. I was already dealing with what all diabetics deal with in that regard, and the Tamoxifen just took that up to another insufferable level. I don't have bladder and vaginal issues, unless I take Tamoxifen, and, like you, I cannot take A.I. adjuvant therapy because I have osteoporosis now, which is the gift that keeps on giving and one that should not have been given me at all.

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I had atypical ductal hyperplasia so my doc put me on 10mg of Tamoxifen every other day. Joint pain, acne, weight gain started pretty quickly. Additionally my liver became "fatty". I was going to keep taking it hoping symptoms would calm down but had to go off of it for a surgery. I was on Tamoxifen for 6 months. A few months after my surgery I had a pelvic MRI. My left ovary was enlarged and I had a spot on my uterus. That ended up being a spot on a polyp on my uterus and luckily the enlarged ovary was a result of that polyp and not ovarian cancer. The spot was hyperplasia but nothing had turned into full blown cancer yet. I had a hysterectomy. These issues are possible side effects of Tamoxifen. My breast oncologist wants me to go back on Tamoxifen stating she thinks this was all a coincidence but I'm not convinced and not sure what to do.

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