Bottle 'o Tamoxifen

I have not read through all of the posts as this is a very long thread. I started taking Tamoxifen 7 months ago. I had a pelvic ultrasound a couple months ago and discovered a few fibroids, cyst on my ovary & thickening of the uterine lining. My question is, has anyone been successful in shrinking or reversing these uterine issues by switching to an AI instead of continuing on T? I started taking ovary suppression shots a few months ago to stop my period. I am trying to avoid a hysterectomy.

Dup403, it is likely that most of the folks who had minimal side effects are not hanging around here. I find the SEs tend to be cyclical so not all of them occur at one time. After 18 months on Tamoxifen (complicated by having house guests varying in number from 3 to 22 from before Thanksgiving until after the new year) I was so fatigued and foggy brained that I took a month off. Started back just as Covid hit but I feel much better. That may be partly because, since stay at home orders, I've been able to sleep most mornings until I wake up naturally instead of setting an alarm.

Haven't had the discussion yet about whether or not that month will need to be tacked on to the end!

Dup403, just as Beaverntx said, I also find the side effects come in waves. Cycles. While I find it all quite miserable, it's not intolerable. But having that many house guests for any length of time WOULD be intolerable! How did you survive, Bvrntx? I would have lost my mind!

GoKale, I have asked my doc if there is a benefit to me switching and he says there won't be much, negligible at best. He is quite comfortable having me stay on tamox for 5 years. He suggested a break and change to an AI because I am having quite a lot of joint pain. The date on that study was 2004. Now tamoxifen is the drug of choice for PRE-menopausal women and other AIs for POST-menopausal women. At the time of my diagnosis I was not even perimenopausal, with not one single symptom of menopause coming on. Periods rolling along like a freight train at 53. Stupid periods. I do not miss them. But the tamoxifen, with the first dose, stopped them abruptly and completely. I worry that if I go off I will spring forth in a gushing horror of joyful menstruation. I would shoot myself. Seriously. 

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.

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.

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

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.

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!!

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.

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.

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.

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.

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!

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.

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.