Bottle 'o Tamoxifen

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  • Dizzybee
    Dizzybee Member Posts: 142
    edited July 2018

    I'll wait to see what the consultant says, he may have a different opinion I guess. And if this isn't tamoxifen toxicity then there's no need to stop it. I don't have an appointment yet, this only happened yesterday afternoon. But whatever the outcome, it's made me look at that pill in a different way.

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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited July 2018

    Dizzybee, yes, changes in the macula are a known potential side effect of Tamoxifen-- information which was included in that given me during the decision making process about which hormone blocker to take. Since my maculae are already roughed up from being extremely near sighted, I talked with my ophthalmologist about it. He gave me the full go ahead because he said in all his years of practice he has not seen macular changes from Tamoxifen. That is not to say you do not have such changes from Tamoxifen but that they are not among the more common SEs-- perhaps why others were not aware of the possibility.

    Best wishes for you on your follow-up on this and may you be able to see a consultant very soon if for nothing else than getting more information. I take a special vitamin formula for macular degeneration called Preservision. It was developed for age related macular degeneration but my ophthalmologist suggested I try it even though my changes are more due to structure than aging...Will be thinking of you.

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  • runor
    runor Member Posts: 1,798
    edited July 2018

    Scrafgal, I would NEVER take over your butterfly position!

    Veeder, my scalp is also itchy and my vacuum bag is full of my hair. The lint trap in the dryer is full of my hair. The seat of my truck is covered with my hair. Everything we eat comes with a side order of hair. So itchy. So fally outy.

    Dizzybee, I also have had astounding visual loss. Yesterday in the drugstore I actually asked the stock girl to read some package instructions to me. I can't see those little letters! Used to be able to read the tiniest printing. Now? It's all a blur. I could eat a cockroach that was crawling around my plate and not even see it. Dinner is a blur. This visual loss started years ago but in the past year the deterioration has been so much worse! I suppose I should get my eyes checked. I have cheater glasses in every room of the house! I hope you can get a definitve answer on if this is age related or tamoxifen related.

    Lovinggrouches ... good for you and your doc for tweaking the plan. Glad that it makes a difference to how you feel. I wish more docs would offer their patients and more flexible plan than 20mg a day, come hell or high water. I think some women quit in frustration and that might have been prevented if a doc was more creative and flexible.

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  • Vargadoll
    Vargadoll Member Posts: 2,028
    edited July 2018

    Ok ladies- I have no SE real SE from the Tamoxifen but I have had huge vision changes to! I have taken Tamoxifen for roughly 14 months and I now need readers for just about everything that requires me to read. If it's a dark print I do ok of its not to small but the sensitivity to light is off the hook! I always have my sunglasses on. I can hardly open my eyes if I'm outdoors without them on. I asked my oncologist about the Tamoxifen being the possible cause because I had read that it can make changes in my vision. I was told no it doesn't. Things that make you go hummmm

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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited July 2018

    Vargadoll, things that make you make an appointment to get your eyes/vision checked????


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  • sm627
    sm627 Member Posts: 298
    edited July 2018

    Hi Everyone,

    I met with a PS yesterday to discuss breast reconstruction he said I would need to stop taking tamoxifen 1 month prior to having the flap surgery. Has anyone else gone off Tamoxifen for that long before having surgery? My MO told me that I should stop taking T a week before surgery. I don't feel good about stopping it for that long. I think of Tamoxifen as my security blanket against the bad cancer monster under my bed.

    Thanks for listening

    Hugs to all,

    Sara

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  • Marymc86
    Marymc86 Member Posts: 102
    edited July 2018

    Tamoxifen is my next battle. I do not want to take it. Reading these posts makes me not want to take it even more. I will say this, I'm 55 years old. I'm older than some of you posting. To the person who wrote about the hot flashes happening more during your period, that was a natural phenomenon for me. I don't think that is due to Tamoxifen. I'm also wondering about the eyes and hair. I've also already experienced the rapid loss of eyesight due to normal aging and the thinning hair due to normal aging. Now, I'm having to go on a pill that will cause these issues to be even worse? Gee. Oncotype says take it and have an 82% chance of no recurrence in 10 years. Without it, 64%. I feel doomed either way.

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited July 2018

    I've had 2 plastic surgeries since starting tamoxifen and stopped 2 weeks before and 2 weeks after each surgery. Tamoxifen has a very long half life and doesn't leave your system in one month.


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  • Scrafgal
    Scrafgal Member Posts: 631
    edited July 2018

    marymc86

    Everyone is different and with many the side effects change in nature and severity, over time. Don't give up before you try it. You might be okay and be able to manage. I am 52 and have been on it since last Fall. My alopecia was triggered by chemo-- not tamoxifen. The main thing for me is to drink 100 ounces of water each day because tamox is dehydrating...

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  • VL22
    VL22 Member Posts: 851
    edited July 2018

    Thanks runor for the graphic and hilarious pill splitting instructions! I’m doing the same as you - 10 mg most days, 20 on two days. I see my BS in 2 weeks and I’ll talk to him about it. Ive found the most success with my doctors by asking questions that aren’t their “specialty “. I also find I get more open mindedness from the Dr assistants.

    Don’t keep telling me these weird SEs aren’t from chemo or tamoxifen or whatever - I know how I felt before these treatments and how I feel now! Just because an SE is unusual doesn’t mean it doesn’t exist! It is beyond frustrating.

    And runor is right - sometimes they are so focused on protocol or being right that they completely discount how they may be responsible for women giving up on hormonal sin frustration

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  • TaRenee
    TaRenee Member Posts: 464
    edited July 2018

    I have been on Tamoxifen since September. (Don’t make me do the math, I was never good at it in the first place) I started noticing vision changes in the spring. My optometrist got me right in, did a thorough check and said that she didn’t see any damage but to stay in touch with her if I notice other changes. I am very newrsighted, wear multi focal contacts and still have to use reading glasses. Heck, I even broke down and got myself some bifocalish reader sunglasses. (Oh my gosh how I love them!). My MO said to make sure I let him and eye doc know if I have any issues.

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  • Trvler
    Trvler Member Posts: 3,159
    edited July 2018

    Sara: I had 3 stage 2 surgeries last year and went off Tamoxifen every time. They say it thins your blood but the seems odd to me since it also increases your chances of a blood clot. They gave me blood thinner injections in the hospital after each surgery.

    My ophthalmologist told me that it's normal to have declining close up vision between 45-55 and will level off about 55. I am 55 and have not noticed any change in my eyesight since starting T. I haven't been to the doctor for a while and probably should schedule a visit.

    I am wondering about all these people taking antidepressants that help with sleep. My doctor gave me Trazadone and I couldn't sleep and was miserable for three days with ONE pill and the lowest dosage. So I didn't take another one. I once tookZoloft for three days once and couldn't sleep a wink. Does anyone else have issues tolerating antidepressants? Do the side effects start bad and lessen over time?

    I had neo adjuvant chemo so I didn't do the oncotype test but it can't get some sleep, I am going to have to start scaling back on Tamoxifen.

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  • PrincessButtercup
    PrincessButtercup Member Posts: 200
    edited July 2018

    I have not had hair loss from tamoxifen, but I do have constant joint pain. I can't take ibuprofen, and the only thing that seems to help me with the pain and sleep is Gabapentin, which was prescribed to me by my RO for chemo-related neuropathy. It does help with pain, and it also makes me sleepy. So I take it only at night.

    I had an eye exam two weeks after starting tamoxifen, and my eye dr said that while I had early cataracts it wouldn't yet be from the tamoxifen. Since I'm 57 she was calling it age-related and just something to watch.

    The other thing that's new during the last two weeks is a return to itchy skin from radiation. Between the joint pain and the itchy skin, I'm fairly miserable most of the day. I read on another thread that refrigerating the aloe gel is helpful, so I'm now doing that and it does help. But I keep telling myself that this is all to keep the cancer away.

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  • Vargadoll
    Vargadoll Member Posts: 2,028
    edited July 2018

    I have a colonoscopy scheduled next week. Is that a procedure that we should stop taking Tamoxifen? The gastro has had my mediation list since May and no one has said anything about the Tamoxifen.

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  • Trvler
    Trvler Member Posts: 3,159
    edited July 2018

    I didn't stop it for a colonoscopy.

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited July 2018

    I just had a colonoscopy yesterday. I did not stop my tamoxifen.

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  • Vargadoll
    Vargadoll Member Posts: 2,028
    edited July 2018

    Thank you! I'm not looking foward to next Tuesday. I have "test" anxiety now!

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  • Trvler
    Trvler Member Posts: 3,159
    edited July 2018

    The colonoscopy wasn't bad. Don't worry. I took a bunch of magnesium on the days leading up to it so I was pretty cleaned out before I started. Made the prep much more tolerable.

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited August 2018

    I agree Trvler. It really wasn’t as bad as others had said it was. The procedure itself is nothing compared to what we’ve been through. I didn’t think the prep was bad either. No pain or discomfort just many trips to the bathroom. Treat yourself to the “fancy” soft toilet paper with lotion and vitamin E and maybe some flushable wipes and you should be all set. I really don’t like Gatorade (especially 64 oz of it). I mixed my Miralax with Smart water instead. It has electrolytes.
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  • Vargadoll
    Vargadoll Member Posts: 2,028
    edited August 2018

    I have had two or three colonoscopies already colon cancer runs in my family. I figured that's what I would end up with not breast cancer! I'm hoping I can do the Miralax prep instead of the other. The golytely stuff I can hardly keep down I throw up more than I poop!

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  • cev20
    cev20 Member Posts: 41
    edited August 2018

    Hello Ladies.

    I've been lurking for a few days to get myself educated. Today is my day 1 on Tamoxifen. I just wanted to introduce myself as I'm sure I'll have questions along this journey.

    🙂

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  • runor
    runor Member Posts: 1,798
    edited August 2018

    Hello and smooth sailing on tamox. I am a year in and looking back, I think it either got easier or I got used to the effects. Not sure. Except for the moments when I break out in head to toe sweating, or when I get some epic leg cramp, life has settled back to normal. Sort of. It has taken a year but I have moments where I don't think about cancer. And I think, oh it's so nice not to think about cancer. Wait! WHAT? Who said cancer! Holy shit! ... and then I'm all bummed out that I thought about it after not thinking about it. If you know what I mean. I hope you find some level footing in time. Keep reading. So much to learn on this site!

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  • cev20
    cev20 Member Posts: 41
    edited August 2018

    Thanks, runor! Here's to a return to normalcy! 🥂

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited August 2018

    Welcome cev20!

    I wish you well on your Tamox journey!


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  • Skiboots42
    Skiboots42 Member Posts: 21
    edited August 2018

    I have been tamoxifen for about two months. I have been lucky and tolerating it pretty well. Having a little trouble with constipation, but other than a little moodiness doing fine. Good luck to all and hope your journey is uneventful

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  • SLN22
    SLN22 Member Posts: 6
    edited August 2018

    Anyone have issues with being dizzy headed on Tamoxifen? I have been taking it for 5 months now with the typical side effects (hot flashes, vaginal dryness etc.) but over the past few days I have been fighting with dizziness. I have sent a message to my doctor but was wondering if anyone else has ever had this same effect from taking tamoxifen.

    Sometimes I wonder if it's worth taking, if the benefits really out weigh the side effects....:(

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  • Lew
    Lew Member Posts: 5
    edited August 2018

    Hi! I have been on Tamoxifen for about 3 months. The main side effects I had presented in the first 2 months. My oncologist recommended that I take it in the evening to reduce side effects, which I think has been a good idea. In the beginning, I was a little nauseous in the morning and would get tired every afternoon. It actually helped me sleep when I firsted started. Now, I think there is no effects on sleep.

    Other side effects I have: hard to lose weight- I really stepped up my exercise routine, but would not lose weight. I feel that the weight is concentrated more around my mid-section (even more than before starting the Tamoxifen). My hair became thinner (hairdresser confirmed that), and my fingernails are softer.

    I am post-menopausal, so have not been bothered with many side effects that pre-menopausal women have experienced. I was recently diagnosed with lymphocytic colitis and wondering if it is related. I started with symptoms about 2 months into my Tamoxifen treatment. Not much evidence of cause for that, but I would like to hear if others have developed colitis or an autoimmune disease since starting hormone treatment.

    I hope it all goes well for you

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  • ChelseaSculler
    ChelseaSculler Member Posts: 73
    edited August 2018

    cev20, my Tam buddy! I started yesterday too. 36 hours in, doing great!

    Did anyone else do any of their own notes on 'State of the Body' before starting and if so, what? I did it last night when I realized my knees ached a bit after my run—but they'd hurt the day before I started too, so I made a note that in this case at least, the two definitely aren't related!

    I did weight, general aches/pains, mood, sleep habits... What am I not thinking of? Measurements, maybe?

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited August 2018

    yes to dizziness...once I started drinking 100 ounces of water each day, the dizziness stopped. Tamoxifen is very dehydrating....joint pain went away too...

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  • SLN22
    SLN22 Member Posts: 6
    edited August 2018

    Good to know! Thanks for sharing. I try to drink as much water as possible but I'm no where close to 100 ounces a day. I will try to drink more and see if that helps.

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