Bottle o Tamoxifen
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Hello and welcome to the lively discussion on tamoxifen. I just joined the group about two months ago, having had a lumpectomy in late March and am now finishing up radiation treatment by end of this week. My oncologist put me on tamoxifen in April before radiation treatment was arranged since my radiation regimen was intentionally delayed due to Covid-19 threat.
I am an early stage uterine cancer survivor from 2014 (full hysterectomy, chemo, no radiation) so thought I could tackle about anything that came my way with early stage breast cancer (stage 1A, grade 2, no lymph node involvement). I had taken about 90 days of tamoxifen and the first early side effect was dry eye -- a problem I had years ago and I offset it using eye drops called Oasis single vial drops. OK, that seemed pretty benign. Then in the last month the hot flashes came with increasing intensity and stayed sometimes for 1/2 hour or more, such that I had to strip down to underwear and get cold packs and lie down on them. After two weeks of this debilitating side effect, I asked for relief, so oncologist took me off tamoxifen for a month. I will see her mid-August to ask what to do. I am 69 and long post menopausal but my tumor was 100% estrogen positive -- maybe that is why I have such intense side effects? What I do know is I will not survive 5 years of this heat intensity, so there has to be some compromise. When I first met with my oncologist, we had chosen to not prescribe an AI due to the osteoporosis issues, cholesterol impact and arthritis aggravations -- all of which I already deal with. I easily made it through the 'real menopause' in my late 50s so thought hot flashes would be simple to handle. Not so. So... we will see...
I truly appreciate everyone's description of your journeys so I understand just how different we all are in responses to drug regimens.
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CarolS-60532, I also went through a terrible menopause and I am going through it again on Tamoxifen. What seemed to help me was that I took 10mg for some time and recently increased to 20mg taking 10mg twice a day. That has helped. I still get some hot flashes, but the night sweats are infrequent. Insomnia on 20mg is an issue for me. I found fish oil/krill helps with my dry eyes, but it takes 4-6 weeks to work. I try to stay hydrated. Finally stopped tearing up at a drop of a hat. My mood is fine. I felt a little angry for the first few weeks, but that has improved. I recently took a break because I had a hysterectomy and even though I still had most of the aches and pains I felt like my old self. Better days ahead!! Best wishes!
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DUP43 - I had minimal SE from Tamoxifen when I took it 2009-2014. Occasional nasty, very painful cramping in calf muscle which could happen at any moment, doing anything from resting to stretching to hiking to swimming(that was the worst). Magnesium and staying hydrated seem to keep it at bay. I was already menapausal which might make a difference to those who get it as part of instant menapause. One time after mentioning various "how am I doing" to DR, he got concerned and checked for signs of endometrial cancer, came back negative. He had Rx'd Tamoxifen because he felt it had proven itself, and that AIs were still new. I met one woman who had never been warned about clots from Tamoxifen, and was in the imaging center for a check. She was very active and had just returned from an overseas trip for a tennis tournament and bike ridiing. I was guessing that she was old enough to be menapausal, but still prescribed Tamoxifen. At one of the last visits the Oncologist mentioned that studies were showing taking Tamoxifen for 10 years vs 5, might be beneficial, but did not recommend it for me. DId Tamoxifen work? I have no idea. I just wish there was a better way of monitoring. I now have BC for the third time. The oncologist I see thinks each is a "new" cancer rather than recurrence, but admits there is no way of knowing.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Long story short, Aug-Sept imaging and biopsy showed tumor in R-axilla, but no metastasis. 20+ BC markers checked in genetic profile, none found. Ibrance and Arimidex since Sept 2019. Tumor has shrunk from 2.5 cm to 7mm. Hoping August scan shows it has shrunk more or maybe is gone.
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CarolS if you have the access, I find that acupuncture really helps with the hot flashes. Off label use of low dose Efflexor (sp?) - an antidepressant - or Oxybutynin (helps with reducing that urgent need to tinkle) can also be used if the hot flashes get crazy bad. I am still finding that the 10 mg twice a day of Tamox is a better option for me but I have the Oxybutynin ready just in case.
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Thanks to everyone who has given me recommendations to deal with hot flashes, including fliashlight, Rah2464 and BlueGirlRed State. I had used acupuncture for neuropathy when undergoing chemo for uterine cancer in 2014 and it did help. Also reducing the taxo dose is a good idea and so are the antidepressant and other options. I will explore them all with my oncologist in August. This chat line is such a blessing. Right now I am 12 days off the drug and still suffering mightily from the hot flashes, lying on cold packs multiple times a day. This drug sure sticks around in my system! Carol
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I agree that logging what you eat and tracking activity is super helpful. I use a weight guru scale and their app to track weight and body composition, Apple Watch for my steps and calories burned, and MyFitnessPal app to log food.
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Not sure if this is the right thread or not to post - I had to start an anti-convulsant drug due to an acute episode of trigeminal neuralgia following dental surgery. I see that the drug my PCP gave me renders Tamoxifen less effective. If I'm on it short term, for a few weeks, I'm not concerned. The pharmacist suggested that I try taking the drugs at different times of the day. Would this really help? Does anyone else have this situation where they need to take a drug that interferes with Tamoxifen? It looks like I have alternative anti-convulsants that don't interact with Tamoxifen so I plan to discuss in a few weeks with my PCP.
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This is interesting. I have not had a period since July 2017. They stopped totally and abruptly when I started taking tamoxifen. I was not sorry to see them go.
Earlier this month doc suggested I go off tamox and see if I feel better. After about a week off I decided that I did not want to try other hormonals and started taking tamox again. So I was off tamox for maybe a week total? Now been back on for a week or more. AND I AM HAVING A PERIOD!!!
I have had NOTHING for 3 years and then I go off for a stinking week and this happens?
I take roughly 60% of the suggested dose. That was enough to make my periods stop dead in their tracks. My onc has made remarks that with another drug I might take the full dose. I have to think that even at 60% the effect tamox has on my body must be absolutely profound. If all it took was one week off for my body to say, whoopee, let's have a period! Then I think I am getting lots of bang for my buck with tamoxifen.Side note: if this period thing becomes a regular issue as I approach my 57th birthday, I will shoot myself ! I was NOT sorry to see the end of those blood,y messy, long, life-controlling things. And now this! This is bullshit!
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runor, Maybe it was because the Tamoxifen gave you a thickened uterine lining and your body decided to shed the extra lining? That would be a good one time thing!!
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Crosspost with Tamoxifen Road thread -- this thread looks more active!
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New here, hi!
I literally just took my first Tamoxifen pill one minute ago. Had to rip off the bandaid and just do it, because I've been so intimidated by it.
I had my lumpectomy in Feb, finished my radiation end of June, so it was time.
But any tips you can share or things to watch out for would be greatly appreciated. (And what's the deal with grapefruit juice? Forbidden??)
I don't have a signature figured out (or all of the abbreviations that go into it) but here are my basics if someone can help me translate it into a proper signature?:
- Diagnosis
- CHEK2 genetic variant diagnosed 3.5 years ago; breast MRIs every 6 months and colonoscopies every 3-5 years to monitor
- 12/13/2019 breast cancer diagnosed (age 45) in right breast (DCIS + microinvasive cancer (Stage 1?)) after MRI biopsy done on basis of screening MRI results
- Surgery in late Feb 2020: lumpectomy and sentinel node biopsy (0/8 lymph nodes), clean margins
- Radiation to right breast; finished end of June 2020
- Hormonal Therapy started TODAY, like just now TODAY (Tamoxifen)
0 - Diagnosis
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Hi, lumpykins!
Grapefruit can reduce the effectiveness of Tamoxifen as can Benadryl, so avoid those. However, I do take a generic form of Claritin each day to help decrease side effects. Be sure to keep your intake of fluids up as Tamoxifen is dehydrating.
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Hi Lumpykins I have very similar time frame and diagnosis as you -- DCIS and micro-invasive cancer, zero node involvement, stage 1A, My surgery was March. I delayed radiation that was supposed to begin in May due to Covid-19 concern here (numbers were ramping up here in Chicago-land) so oncologist put me on tamoxifen to 'tide me over' even though she would have preferred to wait to prescribe until after radiation was done as the normal course of treatment. After 60 days of tamoxifen, I could no longer endure the surging hot flashes -- very severe for me, so she halted me taking tamoxifen. I have since finished my radiation treatment on July 24. I meet with doctor later this week to discuss alternatives or lower does or something. Not sure why some of we ladies have such hot flashes and others not so much. My tumor was 100% ER+ positive so perhaps my severe reaction is due to the 100%. Will learn more.
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Hey CarolS,
My ER was also 100 or very close to it and I don't think I got a single hot flash. I got a couple of 'cold flashes', but then those stopped too. My big side effect was sedation, basically.
I don't think they understand or have ways to predict how these drugs impact individuals. It's the same like with hormonal birth control. You just got to keep trying until you find something that works for you.
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Hi all,
I started tamoxifen on 6/24 - lumpectomy Feb 25th and finished 30 radiation treatments on 6/9. My tumor was 95% ER and 95% PR positive. I am on 20mg daily that I take around 8:30 am. I have added tumeric/curcumin (500 mg) to my supplements. I take Co-Enzyme Q-10, Fish oil, Vitamins B, C, D - thyroid medicine, blood pressure medicine and an allergy pill daily. I have also been on low dose Effexor for years for anxiety. So far, I don't think I have had horrible SEs. I have noticed some intermittent hot flashes - kind of feel like I am on fire when they happen- these are much worse if I have had some wine. (Although, i will say my radiated breast is still very warm to the touch and still slightly pink) At first, I had joint pain in my right hand, but that seems to have subsided. I have also had a mild headache off and on - but that could be from many things, I guess. Anyhow, I refer to Tamoxifen as my "anti-cancer" pill and have embraced it as opposed to fearing it. Hope that helps someone a little - hang in there girls - this sure is a life altering process, isn't it?
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Beaverntx, oh, wow, I didn't know that about Benadryl (not that I typically take it) so thanks for that heads up. LIkewise about the dehydration. I need to step up my water intake anyway, so this is a good reminder. Which side effects does Claritin help you with?
CarolS, that's extremely similar dx/timing. I also delayed radiation due to the pandemic (and in fact, realized that the pandemic made the other option of bilateral mastectomy a practical impossibility). And likewise my oncologist offered to put me on tamoxifen before radiation but didn't push it, so I opted to wait and have a break. How early on did you start experiencing the side effects of tamoxifen.
LB13, we are also on similar timing.
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About timing of my tamoxifen side effects. The first month, from mid April to mid May, I got dry eye which I had suffered years before and knew what eye drops to take to help. (fyi -- try Oasis single serve drop vials, purchased through Amazon...). So I thought this is pretty reasonable so far. Some minor joint pain and some vaginal dryness, but nothing I could not work through with ease. Then starting about the 60th day, the hot flashes started. And they got worse and worse until the first week of July I could not take it anymore. I would have to strip off my shirt and lie on a large therapy cold pack against my upper back and neck for 15 minutes on the floor about 4 times a day. Not something I could even think about doing while having Zoom meetings with my clients. I stopped taking the drug about 24 days ago and just in the last two days, I have had much lesser surging. Has taken a long time to work out of my system. I still have some minor flashes but they are bearable and I do not have to strip down and ice up to survive. Will work with oncologist this thursday on some alternatives.
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Lumpykins, can't really say which SEs the antihistamine helps with. I have seasonal allergies and was already taking it when I started Tamoxifen and was advised to continue doing so.
CarolS, Tamoxifen has a very long half life. I took a 30 day respite from it earlier this year and calculated that there was probably some still in my system when I started back on it. Hope you find something that works for you; being able to function is important.
Can't really speak to hot flashes as I have had only occasional mild ones, similar to my menopause experience. However, like Salamandra, I have had cold flashes when I literally felt chilled to the bone. Also highly ER and PR positive.
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Lumpykins - I was already menopausal when I took Tamoxifen for 5 years (2009-2014) after lumpectomy and radiation. As I read other posts, there does seem to be a difference in SEs for those already menopausal and those who had "instant" menopause with Tamoxifen. I had occasional very painful cramps in calf. Could happen anytime, relaxing, stretching, hiking, swiming (the lifeguard almost jumped in when he saw me suddenly grab the lane dividers and "crawl" back to the pool edge). Magnesium and staying hydrated really helped. I talked to one woman recently who said she had never been warned about blood clots - some women get them, others not. She was in for imaging after returning from Europe for a tennis tournament and bike trip.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Turned out to be tumor in R-axilla. Pet scan showed no metastasis. Started Ibrance and Arimidex Sept 2019. Tumor has shrunk from 2.5 cm to 7 mm (April 2020). Hoping CT this week shows more shrinking.
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Hi, I joined the tamoxifen club about a week ago. Thanks for all of the posts on SEs. I'm waiting for them to start. I'm taking 200 mg of gabapentin so I'm hoping it might mitigate the hot flashes and I've been going to acupuncture. Does anyone have any insight on how long it takes for periods to stop?
Thanks in advance!
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Hi Everyone, I started Tamoxifen 4 months ago and planned to join the conversation on this forum. Posted my first message and just realized that I posted it on the other forum, Tamoxifen Road....guess brain fog is a side effect that I can add to my list 🙂. As this appears to be a more active group, I thought that it would be a better place for me as I have not been on this journey very long. I have found the input that others have left to be very helpful and hope that I will be able to make a few meaningful contributions along the way.
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runor--I just wanted to mention to you that when I was about half way through my 5 years on Tamoxifen I had to have a total hysterectomy due to thickened lining, cysts and enlarged uterus caused by the Tamoxifen. Afterwards I was told I had the option of swapping to an AI. So I went to my BS and asked his opinion. He said he actually recommended that I stay on Tamoxifen. He felt that out of his thousands of BC patients, most found AI to be more difficult than Tamoxifen. And he said that since I was able to more or less live my life on T that I shouldn't "rock the boat". And he said if you calculate the difference in recurrence risk of the two, that it probably wasn't worth the increased SEs of an AI. So I stuck out my 5 years.
As to taking a month off of the med, when I stopped my Tamoxifen I swear it was months before I saw a difference! It probably took about 3 or 4 months before the joint pain went away. And it was damn close to a year before I started to actually lose weight again. I'd lost 20 pounds right before diagnosis and gained back about 12 during my 5 years on T. I joined a gym right after treatment but never could lose any weight. I really just managed to keep from gaining a LOT of weight! And it took a long time to see my hair thicken back up too! So I just wanted to say that I don't really think you'd see much of a difference taking just a month off. Anyway, don't know what you've decided to do but just thought I'd share my experiences with you.
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lala, thank you for the information about your hair thickening again post Tamoxifen! I have been wondering, especially since my hair has started to thin again after several months of having the thinning slowed. It is now thin enough on the top that I must wear a hat if out on the sun for any length of time. You have given me hope ☺
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Lala1, thank you. I think we see things the same way. I decided not to change. I like the idea that I get a bit of protection from bone density loss with tamoxifen. I am not having a great time on tamox but I realize it could be worse and I am just not willing to go there. I mean, it might be better too but... I rolled the dice and decided to stay the course on tamox. My doc also feels any gains in survival I might get are almost non existent.
This weight gain - oh my god - all in the middle! I'm shaped like a rain barrel. Can't keep my pants on cause my gut is bigger than my ass and my pants literally slide off. Or I have to wear them so tight they cut me in half and a blub over the top and blub under the waistband. Oh my lord, the sexy is off the scale! I can't, I just can't.
I struggled going on tamox. I worry now that when the 5 years are up I'll feel utterly exposed and vulnerable, Like a big cancer cell waiting to spring into life. Damn this disease.
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Do any of you take tamoxifen and tumeric? I recently had my ovaries removed and I think the lack of estrogen is really doing a number on my joints. I've read that tumeric may affect the potency of tamoxifen was wondering what you guys have heard.
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Oh I would like to hear about turmeric implications as well. I have taken it since uterine cancer back in 2014 and never even thought it might interfere with tamoxifen...
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Lala, you are so right The month off has not made much of an improvement in the hot flashes. I was given a prescription, maybe a smidgen and less frequent.... two days ago to offset the hot flashes (Effexor? something like that...) and it is too soon to see if it will work....Still want to complete the 5 years of tamoxifen if I can. The AI sound like too many other types of SEs that will impact me. Since I already broke my leg in a freak fall after my chemo egimen for uteirne cancer, I want to avoid bone issues if at all possible....
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CarolS--I just posted a whole thing about turmeric in the "Doing Well on Aromatase Inhibitors" thread (I think this is it.... https://community.breastcancer.org/forum/78/topics/854403?page=50#idx_1497 ). I posted yesterday. At first my MO was against me taking it, but I told him I'd found some new studies showing it's ok to take with Tamoxifen. He's a "research" guy like myself and once he did his own research, he told me he was totally ok with me taking it. He said it's much like soy....newer studies show it's actually ok to take in certain forms and certain amounts. Let me know if you can't find the post and I'll repost it here.
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lala1 - could you repost what you said about hair thickening? Oncologist says it is the Arimidex, not the Ibrance. I had been taking Tamoxifen before the AI. I can't blame all the hair I find around the house on the dog and cat. Hair definitley getting a lot thinnner, seems to have ebbed slightly, but does not seem to be coming back.
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BlueGirlRedState--Not really sure what I said about hair thickening. I know about a year into Tamoxifen my totally straight, baby fine hair suddenly developed a "swirl/curl" on one side! No chemo or rads for me so pretty sure it was the Tamoxifen. And my hairdresser noted that is was also thinning a bit. Once I finished Tamoxifen it took a long time for it to thicken back up, if you can call my baby fine hair actually thick. LOL. I would say it was at least 9 months before I started to see a difference. And I'm now about a year and a half from finishing and I still have the damn swirl!!
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I have been taking Tamoxifen for about three weeks now, after trying Letrozale and Anastrozale. The joint pain grew to be too much. I've started Biotin shampoo for my hair, but I've had a lot of insomnia the past couple of weeks and wondered if the Tam could be causing it? Also having Irritable Bowel Symptoms too. Is Tam the problem or could it be something else, because I don't remember seeing the things I've listed as SEs. Thanks, T
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