Bottle o Tamoxifen
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TaRenee, I find all the symptoms are becoming cyclical. I'll go for a few weeks when I'm flashing all the time. Then it will ease off. Then I'll have a bout of constipation for a week or so, and then it will ease off. Then all of a sudden after a couple weeks of no leg cramps, I'll have a few weeks of several a night. It has taken over a year to see this pattern, but there it is. Things get bad, then ease off, rinse, repeat. The only thing that is unrelentingly constant is my hair falling out and bad memory. It is not funny how little I remember.
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Anyone started talking funny? I don't know if I am trying to talk to fast but I keep messing up on talking. For example I ordered my son a "pooberry pomegranate fruit chill" instead of a blueberry, when saying rain, it came out Rhannon, these are just a couple examples. I don't want to talk anymore it's embarrassing how stupid I sound and then feel.
TaRenne - you are not alone with the foot pain, I have to really watch it or they get stuck in painful positions! I am trying a new magnesium from my natralopath. Can't wait to here if pickles are my answer!
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vampeyes- I find it harder to say some words. Sometimes it’s just a more complicated/multiple syllable word or phrase and sometimes it’s finding the right word/getting my mind to make the right word to come out of my mouth, and sometimes it just happens. I’ve done similar to the poohberry incident before but not the rhannon. Wish I could say it gets better and maybe it does and I’m just not there yet. And this still happens after making the switch to an AI.
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Lula & vampeyes, my tongue stumbles over words sometimes too! I've said some strange things at times but thanks to another SE I can't remember an example just now😀
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A few people have asked about benefits of acupuncture. I have found it very helpful for relaxing/calming/stress reducing, and sometimes helpful with specific issues such as finger joint stiffness/trigger finger (brought on by anastrozole, which I quit after several months). Your clinic may or may not offer acupuncture as part of integrated therapy. Your insurance may or may not cover acupuncture, and since most acupuncturists are probably "not in the network", insurance might only pay a percentage. Chiropractors in some states can get a "acupuncture light" license, but are not required to take as much classroom/apprentice training as a fully licensed acupuncturist. I tried it in 2009 with the first round of cancer, the clinic I was going to offered it as part of integrated therapy. I continued with the acupuncturist for a year or so after wards in her private practice, then she moved. Years later I tried it for relief from the SEs of Anastrozole.. You might want to check into Yamasoto scalp acupuncture, I read an article in an oncology magazine, that many women found relief from the SEs brought on by Anastrozole. Nobody in this area practiced it, but one person said it was included as part of her training., but she had not practiced it We tried it for a while, but went back to "regular" acupuncture where we discuss what is going on with my health/how I feel, and she decides on how to place the needles. It took months for my fingers to feel better after I quit the anastrozole.
2009 ER+ left breast. 52 yrs. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in hands. Started tamoxifen March 2018.
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Wow. Into year 2 of tamoxifen and in the last 2 weeks it's like my body has seized up. I'm the Tin Man in need of oil. Everything hurts. It took a while to clue in how stiff I was but yesterday I realized I was avoiding bending over because it hurts my hips to articulate like that. Squatting is just as painful. So if I drop something ... well shit. There it is. Down there. On the floor. And here I am. Up here. And my bendy parts aren't bendy anymore.
I have had joint pain and general stiffness in bed, at night, when I'm not moving much, but up until very recently had no stiffness issues during the day. Now? Holy crackers! It's like my body is crinkling and creasing and folding in on itself like a lawn chair. Extension and flexion of all joints has become slow and painful. Yoga, here I come (laying flat on face and moaning).
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vampeyes, yes some days I sound like I am drunk.
I have not had a period since I started Chemo in February of 2017. Not even spotting.
I do agree some days I wake up so sore I can hardly walk.
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I started Tamoxifen on June 30th (my 50th birthday, what a gift) and I had to stop for two weeks for a surgery I had Sept 4. I haven't had my period since August and I'm wondering if going off Tamo for a few weeks has thrown me off or if I just won't have periods now. I was like clockwork before this. Missing a period is like a slacker boyfriend - I don't really want to deal with it on a regular basis but I kind of wonder where it is when I haven't heard from it.
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My period stopped my second round of chemo in october. Has yet to return. Started T in March. I have all the menopause symptoms...oh joy.
Question. Constipation on T? If I get out of my schedule, like if I’m travelling, boy am I in trouble. A real challenge to get things moving again. Anyone similar?
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Hi, Joyseeker 43,
I take Effexor for the menopause symptoms (prescription).
Yes, tamoxifen made me constipated! I take Magnesium glycinate (OTC - I get from Amazon - Pure??? Brand) for the constipation, 250 - 400 mg. I take the magnesium in the evening. Do not get magnesium oxide, it will make you more constipated. (I’d been taking magnesium on orders of my cardiologist for years, never had a problem until I started tamoxifen.). If you like dates or figs, I also eat one before bedtime with a few nuts - just my routine.
Good luck!
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Joyseeker, constipation was also an effect I noticed. That seemed to resolve as the months went by. But at first, it was a nasty surprise issue.
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This is just a quick note to let anyone know that forgetfulness on Tamoxifen is a real symptom as far as I'm concerned.
Recently I forgot to go to sing in a folk choir at church then I forgot again at the next session 2 weeks later despite having practises in between. They were there in church merrily singing whilst I was sat at home oblivious. Unbelievable. I felt terrible and said sorry on Whatsapp to the choir members and also sent them a link about Tamoxifen and forgetfulness.
https://www.answersbeyond5.com/blog/5-tips-tamoxifen-brain-fog/
Even so I can't believe I've been that forgetful. I've set a mobile phone alarm for every Saturday night to beep and say 'folk choir tomorrow ?' I hope it works
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On Saturday I started having lower left abdominal pain that extended to my back. I blew it off thinking it was gas or something non urgent. The pain became worse throughout the evening, and it was difficult to sleep. I woke up with the same pain, bloating and now the pain had extended to the center of my abdomen. I thought I may have a UTI, so I decided at that point to go to the walk in clinic yesterday. The doctor then sent me to the urgent care center for a CT Scan as they thought it could either be kidney stones or diverticulitis. Results were no stones, no diverticulitis, there was a small amount of free fluid in my pelvis, no visible masses or issues with my organs, and I had a trace of blood in my urine. The urine sample did not show bacteria so they will send it off for further testing. They are treating me with Cipro for now, assuming that it may be a UTI. Today still no improvement, and my stomach is still painful to touch as it was yesterday. Has anyone had an issue like this??
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"Missing a period is like a slacker boyfriend - I don't really want to deal with it on a regular basis but I kind of wonder where it is when I haven't heard from it."
OMG, this is hilarious. And true!
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Paco....I love that! Thanks for the constipation advice ladies. Another odd thing....the arches of my feet are sore? WTH? Tamoxifen you are a wicked drug. I hope for all this trouble you cause you keep my cancer away!
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Joyseeker, I have foot pain as well, only mine in the tops of the arches to the toes. Magnesium was working, but not so much lately.
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I have foot pain also- usually first thing in the morning so that I hobble like an old lady to the bathroom.
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I have flat feet like a duck and have lived with foot pain all my life. I wear custom arch supports 24/7 or the pain in my feet would literally have me crawling around on hands and knees. When my weight changes, at all, upwards (what other stinking direction does it go?!) my feet are the FIRST to notice. If some of you are walking ever so slightly differently because the tamoxifen makes you a wee bit stiff in the hips and knees, that can translate into foot pain. If there's a way to have foot pain, I've had it. And that feeling in the morning, that sitting on the edge of the bed not wanting to put your feet down and stand because it feels like the bones are made of glass and are going to shatter ... I've had that for years prior to tamoxifen. Weight gain, change of stance or way of walking, all of it can make feet hurt. All of it can also be caused, directly or indirectly, by tamoxifen too.
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Joy Seeker... I have sore feet sometimes too. Particularly first thing in the morning, then on and off during the day. It is usually in the arch or along the outer edge of the foot from the little toe. It is not too bad. I take magnesium every third day and massage them a bit.
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I sit here in my 66 degree house in a sleeveless shirt sweating:(. I just spent a few days in the hospital and they decided to give me my evening meds in the morning, skip doses etc. And now the side effects have gotten worse, they decided venlaxifine should be in the am instead of a PM dose, then missed another dose when I convinced them I needed it to be at night. I was so sick I couldn't even argue a couple of days. Of course in the end I also lost my new silicone implant due to infection so now I am flat on one side...I have yet to see how it looks as there are lots of bandages covering it taped tightly. I have to go back to work on Monday, I have to figure out how to make things look normal by then as I work in a doctor's office and do not want the patients to notice .
It is funny how last November after a year of 1 medical issue after another, my coworkers kept telling me "next year will be better, it certainly can't be worse.," Of course then I got diagnosed with cancer and this year has not been better, but I swear I will punch anyone who tells me that next year can't be worse than this year as it almost feels like it is a challenge that the universe will try to win. Anyone else have one side flat? I am still sore, wondering what to do until it is more healed to look normal.
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so today is my one year anniversary of taking tamoxifen. Yay only 4 more years to go! This is how I celebrated with a nice ice cream sundae. Hope to run off all the calories tomorrow at work with my preschool children.
Send you all lots of sweet Love and Hugs, Sara
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Yum! I love ice cream!
I took Tamoxifen for 4 years. Started out on Arimidex. No unmanageable issues. I did have joint pain and difficulty concentrating at times. I was blessed because lots of women suffer with debilitating side effects from the drug.
Diane
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I like your celebration choice sm627!
I wanted to post here because Iswitched to Aromasin (extemestane) this week. I really thought I was tolerating tamoxifen well. I had no side effects that I noticed. What I couldn't see, however, was my endometrium thickening. I went into “chemopause" in Feb '17. I was regular until that time and have had no periods since. I had a baseline vaginal ultrasound last December and it showed my endometrium at 9mm. I think normal is 5mm. My gyn did a D&C March 1st to check things out -all was fine- and we thought that would just monitor annually. I had a ct scan because of some rib pain last month and it noted a “prominent mass" in my uterus. Not something anyone wants to see in their report. Had a follow up vag US and no mass was found but endometrium was 19mm thick. So now I will have another D&C in October. MO once again tested to make sure was in menopause and we changed to Aromasin which should not cause endometrium thickening. I had no symptoms of this, no pain, no spotting, nothing. So far no issues with Aromasin (that I notice). Getting a baseline bonescan next week.
I just wanted to share this in case it helps someone. Pelvic ultrasounds are a good tool for monitoring the possible effects of tamoxifen.
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Hello! I've been reading through some of the posts here and haven't found quite what I've been looking for.
My breast cancer story is pretty much I think my bio at the end of each of my posts. I am POST menopausal.
I have cycled through ALL of the AIs, doing letrozole twice. All have had side effects that have changed my quality of life without giving me a lot of extended quantity projected.
I was off all AIs for a month until all the side effects lessened or completely went away.
I just started tamoxifen a week ago at the urging of my MO. He claimed less bone pain and loss and a lowering of my high cholesterol.
Within 5 days, I started having menstrual-like cramps and a yellow discharge. This is day 3. I decided to give it at least a week before contacting the MO. His nurse never mentioned this kind of SE but encouraged me to try it for several weeks before calling back about SEs.
I'm wondering if anyone else here is post menopausal and taken tamoxifen and experienced these symptoms and if they went away after first starting.
I'm really not digging the constant pain nor having to wear Pantiliners again! This is not quality of life. I'd rather go back on Letrozole and deal with the aches and pains.
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Legomaster225,
I agree that pelvic US are a good tool. My pre Tamoxifen pelvic US showed endometrial thickening which led to a biopsy (which found polyps) and then a total hysterectomy -- basically at my request. I'm well into menopause, have a more than ten year history of osteopenia and did not want to risk the bone loss associated with AIs so am trying to do everything I can to be successful with Tamoxifen. The path report on the uterus showed some premalignant cell changes, with about a 10% chance of becoming malignant. The surgeon said I made the right decision to have the hysterectomy. Between that, my BC, and a history of premalignant polyps in my colon some days I feel like a walking, talking cancer factory-- and then I'm grateful for all the options we have for prevention, diagnosis and treatment!
Thank goodness for all of those options since each of our stories involves a unique combination of them. May all go well for you.
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sm627 I like your celebratory sundae! Congrats on one year in!
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One year ago today I took my first pill. I’m still making it! I’m tired of the ever rotating side effects, but I’m making it!!
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I started Tamoxifen one week ago and have been so frightened to start it reading all the horror stories on here. Yesterday I realized that estrogen and progesterone are what grew the cancer in me and this drug is what will stop it so I'm going to take each pill believing that it's good for me. That doesn't mean I won't be open eyed and address each SE as it arises. This thread will be a great resource for that. I've spent 5 months afraid: first of double mastectomies, then chemo, then exchange surgery.... now this.
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Rachel, A positive attitude that I am doing what I can to prevent a recurrence is what keeps me going. Glad to see you are moving along that path too.
Also, the horror stories are reported when folks need support, we don't hear as much from folks who are doing well and focusing on getting on with their lives-- don't we all wish to be as "normal" as possible? ( Whatever normal is 😀)...
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Rachel, A positive attitude that I am doing what I can to prevent a recurrence is what keeps me going. Glad to see you are moving along that path too.
Also, the horror stories are reported when folks need support, we don't hear as much from folks who are doing well and focusing on getting on with their lives-- don't we all wish to be as "normal" as possible? ( Whatever normal is 😀)...
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