Bottle o Tamoxifen
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brigid_TO - Hi. I also think that Tamoxifen causes anxiety (also less able to cope with stress) and sometimes heavy dark gloom for me. You have my sympathy, it is a horrible feeling. It does not come on suddenly after taking the pill but is there all the time. Some days are better some worse, maybe depending on my hormones going up and down in the background (tamoxifen has made the periods very infrequent) or if something stressful is happening. Having said that I had started having anxiety during radiation and before the Tamoxifen, which I think was due to perimenopause (I am 50) and circumstances (my husband was ill too, better now).
However, I am almost sure the tamoxifen is keeping me in the anxious /down state. I have not dared to stop taking it to see if it is the drug (I take Wockhardt). I have been taking it for a year and a third (should take for 5 years) and looking back I am overall better than a year ago, but then my husband was more ill then so it may be that, rather than adjusting to the drug. I had some heart racing issues, I think that has gone, no hot flushes- weird! I was not anxious/ depressed before I got the cancer so it is not my usual state, though I am a worrying type person.
That is good that you will try other brands (I have no idea if that works) or maybe switch to an AI, being post-menopausal.
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Hello everyone. I hope your all fine. I am new to this tamoxifen thread and please pardon me for butting in but i just want to ask some questions and hope someone here might have the answers.
I had a right BMX last Sept. 21, 2016 and I just finished my chemotherapy treatment last February 22, 2017. My actual hormonal assay is only 5% ER, 3% PR and HER2 negative hence, I consider myself a Triple Negative cancer patient.
Yesterday, i was cleared by my MO after seeing my follow up PET scan and blood test results, although she pointed out that I have a left breast parenchyma (which is even older than my right breast cancer tumor) which stayed the same in size at .7cm even after the chemo treatment. My MO said that since I am actually ER/PR positive, eventhough weak, I still have to take Tamoxifen 20mg daily for 300 days and she already gave me a prescription for it right after my last chemo session. However, I delayed taking the Tamoxifen until I got my PET scan and blood tests results which turned out to be both clear.
My question Is if it is really necessary and correct for me to take the Tamoxifen 20mg pills?
and ...
If my old left breast parenchyma stayed the same in size after my chemo treatment, should it be considered benign as it was diagnosed before?
Please help.
Thank you all for this chance to ask my questions and may the Good Lord be with us all.
Warmest Regards,
Gina
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Gina: I am not giving medical advice. You should talk to your doctor but I have to tell you if my numbers were that low, there is no way I would take Tamoxifen.
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Gina, you should update your profile. I was going to say why a trip neg would take Tamox but saw you said you are actually ER+. Of course it's up to you but with your stats I would. 2 cm, grade 3, 1 node, no rads (?).. But you have to be at peace and comfortable with no looking back if you decide not to take Tamox and you recurr. Talk to your onc.
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I am really suffering the last week with hot flushes, the pharmacist gave me a different brand this month im hoping that's the reason, I really can't continue like this I was thinking of getting those magnets you put in your underwear, before this all started I had had the odd hot flush I was taking Red Clover andd it was great but when I asked my DR he said I can't take it I'm strongly thinking of stopping the Tamixofen, my oncologist had said it was up to me if I took it, I'd decided I'd no reason not to take it and I'd said to myself I wouldtake it for 6 months no matter what then if I'd no SE I'd continue.Any advise please I'm dreading the summer
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I started Tamoxifen back in October of 2016 with the only real side effect being hot flashes and night sweats. However, as of January I began having serious stomach problems. Nausea, vomiting and diarrhea for over six week. Although changing my diet I was able to get the vomiting and diarrhea under control, the nausea is still a constant when I eat anything. My daily diet consists mostly of brown rice, vegetables, fruits and very small amounts of protein, Chicken or Fish in very small portions 2-3 oz. as it frankly is all I can stomach. I have lost about 25 lbs since January which believe you me I could afford, but am terribly fatigued, nauseated and light headed most days.
I have been prone to G.I. issues my entire life (no joke starting at birth if you listen to what my mom had to say) so I went to my Gastroenteritis at first and he could find nothing that was causing my symptoms. He ran every test you could think of short of a "procedure" (being pleasant). I saw him 3 times, once in Jan, Feb and March. He prescribed something for my IBS but other than that thought it would work itself out.
Still a month later and I am still continually nauseated. I reached out to my medical oncologist last week to see if perhaps the tamoxifen was the culprit. He indicated it was not normal but just ran some new blood work and my triglycerides are elevated - Not extreme but in the 222 range. No sign it's causing issues with my pancreas which is what he suspected. The high triglycerides are strange as I can assure you I am eating a low to virtually no fat diet. The higher the fat, the more nauseated I am.
Has anyone else ever had issues with Tamoxifen causing extreme weight loss and stomach problems 3 months after taking it regularly.
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Jilled--I've had stomach problems with Tamoxifen but not to the extreme that you do. And mine started almost a year after I started taking it!! I would get dizzy and nauseous, not enough to keep me from eating, but enough to bother me in my daily activities. I went to an ENT who did the procedure where they adjust the crystals in your ear which did help alot. Then my massage therapist suggested I try a probiotic, specifically Optimus Primadolphus that has something like 14 strains and 35billion units and it was almost like a miracle for me. She feels that surgeries (and the accompanying anesthesia) as well as the hormone meds (like Tamoxifen) really mess with one's gut. Maybe she's right. Who knows? But I can say that after going through about 6 months of feeling like crap off and on, the probiotics were amazing. And I don't know that you have to take that brand. She did suggest buying "good" ones that came refrigerated. So I buy mine at Vitamin Shoppe out of the fridge and take them home in a cooler just to be safe. Anyway, just thought I'd share my story. If you look at the Tamoxifen insert nausea and dizziness are listed as SEs (along with about 3 billion others!!).
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I agree about the gut. Mine has been messed up since chemo, and the T affects it as well. I am drinking Kombucha amd Kefir every day. I also try to work in some acidophilus and sauerkraut.
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hi there! I have been on tamoxifen since the beginning of March. I have lost 8 pounds because food just does not taste good and I can't figure out what to eat. I am still exercising every day and I think that helps with the other side effects. I get very wiped out feeling but if I can go for A short walk then I feel better and can continue the day. I am still very new to this journey but exercise really helps my brain fog
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I'm almost finished my 2nd month of Tamixofen, and for about 3 days I can feel like a buzzing sensation in my stomach right under my navel to my right side does anyone else have this or know what it might be not sore or anything just wondering what it is
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Wow, that's one I have never heard of. Sorry I can't help.
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On such meds I'm sure there are se's that aren't documented. If it bothers you check with your pcp or mo and see what they say.
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dsteaparty~ That wiped-out feeling gets better. Your body needs time and care right now. Good work on the exercise. Look for the most whole food/healthy food you can find. I find that easy foods are best for me.Snack a lot on things like nuts (fattening and nutritious). If you can afford it, try organic.
Artista~ How is the T working out for ya? Are you still glad you switched back? I am good with my decision.
Lorri~ Goodness. Hope it stops.
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Hi gardengypsy- Other than what I believe Tamox is irritating my uterine fibroids and causing some lower abdominal discomfort from time to time, much much better than Letro. I do pelvic u/s on Mon to see if that's what it is. If it is, uterus will come out at some point. I was tempted to try generic Aromasin just to see but saw the price with my Medicare part D or goodrx and fainted. No can do $600 a mo. But that's the least of my worries right now. I'm battling infection in my left foob I started 2 strong abx yesterday and noticed it's heading to the right. Put a call in to my ps 2 hours ago. Still waiting for him to call to say it's normal for it to get a little worse before better or if I would be admitted in the am for IV abx. sigh. I have a guinea pig on abx 2 x a day too so I'd have to drive her to her vet 1 hour away (each way) to board her so her abx won't get interrupted. Other than that, Tamox is great! lol
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Artista, Your little friend is just totally emphasizing with you.
Hope ya don't have to go to the hospital.
"Other than that Mrs. Lincoln, how was the play?"
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Has anyone tried taking "Estroven" products for hot flashes and other menopause? If yes, did it work
Estroven® Sleep Cool™ is a safe and effective dietary supplement that is both drug-free and estrogen-free.*** It contains naturally-sourced Black Cohosh, plus clinically proven Soy Isoflavones, to help reduce the frequency & severity of hot flashes and night sweats.* It also includes clinically proven melatonin to help you fall asleep & stay asleep.*
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Hi Tiny Dancer I have not tried Estroven myself but I like to check the Sloan Kettering website when I am considering new things to try. They are pretty comprehensive and not too judgey.
https://www.mskcc.org/cancer-care/integrative-medi...Because it is still unclear whether black cohosh has estrogenic effects, women with estrogen receptor-positive (ER+) cancers should avoid this supplement.
Hope that helps.
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I tried Estroven long before cancer since I've always ran warm and it didn't do anything. If I recall correctly, pcp said it has estrogen like substance in it. I wasn't concerned about that at that time.
I'd just look at what has the most raves from the people here. For me, tumeric-curcumin with black pepper (by Sports Research) seems to work. I don't have many warm flushes or even some days, none. Weird for me. I have rx Gabapentin which works for some here but haven't felt the need to pop it. This one you take daily and if you want to stop it, you have to slowly wean off of it. It's really a seizure med and is like anti-depressants (like Effexor) in that it builds in your system so you can't just stop it cold or you'll get not so great side effects. Speaking of Effexor, many like this. I was on it for many years and even with slowly weaning off, I had the worse se's. If I didn't take the pill by 3 pm, I'd feel like I had the flu. Then when I was going to wean off of it and onto another AD, I felt fluish crappy for a long while. That's why do to my own personal experience with Effexor, I'll never recommend it to someone. It's pretty common feel with this med in the depression/anxiety community (which I've been in since '95) so heads up before you proceed with this one.
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I think that the Gabapentin and Lexapro are helping a lot with SEs. Just tired of popping pills.0
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Brigid, thanks for letting me know about the black cohosh. I'll keep searching for something that will help.
I'm also looking for a clean sunscreen that is free of toxins. Anyone found one they like that is not too thick, greasy, etc? I have read that Alba and Badger are good but leave your skin white because they are harder to rub in.
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I love Alba. Not a problem with whiteness
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Gardengypsy, can I ask which Alba? Alba Botanica Very Emollient Mineral Sunscreen or Alba Botanica Very Emollient Mineral Sport Sunscreen, or Alba Botanica Hawaiian Sunscreen?
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My sister bought me a bottle of Alba, Very Emollient Lotion with SPF 15 during Chemo, it's very thick! I found the regular lotions at Trader's Joe that are paraben-free, similar to Olay that I used.
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I joined you all today, taking my first little pill this morning. If you are one of the people that had side effects from it, how long did they take to kick in? Did you notice in a day or two, or did it take a week or two to build up in your system for side effects to start?
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for me, side effects within a week. intolerable after a month. took a month after stopping to recover from it.
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My worst SE is arm cramps and it took a while for them to get really bad. Like a year.
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Tiny
I have used Hawaiian Botanica for a few years now. Went to Mexico in February and barely got a tan. Lol.
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Thanks Gardengypsy
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Hi everyone:
I've been taking Tamoxifen for about three months with limited side effects, mostly hot flashes, joint pain and insomnia. In the past month or so my eyes and face seem puffier than normal . I'm also getting intermittent swelling in my calves. Has anybody had this? I'm still receiving herceptin infusions through August. My onc seems to think that herceptin when administered by itself doesn't have side effects, but that's not what I've read here.
I'm getting a lot more depressed, but I guess it's hard to know why exactly.... I take Actavis Tamoxifen (distributed by Mayne).
Thanks so much. Best wishes to all.
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Willa- Do you think the insomnia/lack of sleep creates puffiness in your face?
Hot flashes, joint pain amd insomnia are considered "limited" side effects, but they are very difficult to live with!! Are you getting good survivorship care to help you through all this?
Artista-Is the infection under control??
Leslie- Welcome! I guess they came on for me within a month. Everyone's different, probably.
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