Tamoxifen - starting to get a little fearful of taking this
I've spent the past two days reading online about this and I keep reading about the weight gain, which I admit scares me. Does it happen to everyone? Can it be avoided with daily exercise and a clean diet? Strangely enough, it doesn't seem to be one of the side effects listed, yet it seems to be mentioned a lot.
Also, the risk of uterine cancer scares me. Should I see about having a hysterectomy first?
And since my hair has *barely* begun to grow back the hair thinning/loss isn't exactly what I wanted to read either!
Anyone else have the same fears? If you have any encouraging words I would really appreciate them!
Thanks,
Julie
Comments
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My doctor warned me about
My doctor warned me about the weight gain. I think because of his stern warning I did well with that. I was on tamoxifen for 7 years because, in 1987, we weren't sure how long I should take it. The most important thing was that it bought me a 22 year remission. I had Stage 3a ( large tumor with 4 nodes) and my prognosis was not good in 1987. Tamoxifen was the new kid on the block that saved my life. After 7 years, I had gained about 15 pounds (mainly at the end), but I lost the weight pretty easily when I came off of the drug. Good luck with whatever you decide!0 -
I did!
Hi Julie -- I am so happy you're almost done with treatments. YAY!
Tamoxifen was the scariest thing to me. Scarier than Chemo - YES. Because it's a long treatment. Five years is a long time, and the drug needs to be taken daily. The way I viewed this to make myself take it, and feel OK about it was remembering when I read about chemo. I was so scared! I had no idea what would happen to me. The statistics scare people. The fact is: everyone is different. Thee are side effects to tamoxifen, but not everyone experiences them. When I listen to commercials about other drugs, they scare me too! (e.g. feelings of suicide, stroke, depression, etc..). All chemicals have side effects, because they react to our own body chemestry differently. This is the one thing I made myself believe to proceed with taking the pill.
The other thing that helped me was having some control. I feel by taking a pill daily, I'm doing something to stop the cancer. It gives me hope. And I believe it's helping me, as it had helped many others.
The one thing that bothers me is the side effect about uterine cancer. Why? I have no children and harvested my eggs! I need my uterus. I need my health too. What I will start doing is seeing a GYN under "oncology". Yes, there are many GYN's docs out there, but they don't all understand about tamoxifen as it's a drug related to oncology. Next month is my first appt. to see my Dr. at my hospital, Sloan. They will check me every 3 months to make sure everything looks normal while taking the pill.
As far as side effects, I've had discharge, hot flashes, and a level of depression. But I hear it gets better with time. I think my depression level has improved. I've been on it over one month on it already.
I say, try it! And be sure to see a GYN to check you. It's up to you if you'd like to remove everything. But you might still need to take it even after you have the surgery - know some women who do. Also, I believe this develops after time so maybe try it for 6 months and see how your body reacts to it? So far, I'm doing OK. I will give an update after seeing my GYN.
My radiation advised I see a GNY under oncology because they have a great understanding of tamoxifen. And in many cases, there are a few unnecesary biopsies ordered by general GYN's. So, this is what I'll do for now. What happens later, only God knows. But it's important to take it with faith. Right before you take the first pill, pray and say "in the name of Jesus, this treatment will work and will have little to no side effects on my body". Say it with faith.
Good luck making your decision. I think you'll do great.0 -
Julie,LoveBabyJesus said:I did!
Hi Julie -- I am so happy you're almost done with treatments. YAY!
Tamoxifen was the scariest thing to me. Scarier than Chemo - YES. Because it's a long treatment. Five years is a long time, and the drug needs to be taken daily. The way I viewed this to make myself take it, and feel OK about it was remembering when I read about chemo. I was so scared! I had no idea what would happen to me. The statistics scare people. The fact is: everyone is different. Thee are side effects to tamoxifen, but not everyone experiences them. When I listen to commercials about other drugs, they scare me too! (e.g. feelings of suicide, stroke, depression, etc..). All chemicals have side effects, because they react to our own body chemestry differently. This is the one thing I made myself believe to proceed with taking the pill.
The other thing that helped me was having some control. I feel by taking a pill daily, I'm doing something to stop the cancer. It gives me hope. And I believe it's helping me, as it had helped many others.
The one thing that bothers me is the side effect about uterine cancer. Why? I have no children and harvested my eggs! I need my uterus. I need my health too. What I will start doing is seeing a GYN under "oncology". Yes, there are many GYN's docs out there, but they don't all understand about tamoxifen as it's a drug related to oncology. Next month is my first appt. to see my Dr. at my hospital, Sloan. They will check me every 3 months to make sure everything looks normal while taking the pill.
As far as side effects, I've had discharge, hot flashes, and a level of depression. But I hear it gets better with time. I think my depression level has improved. I've been on it over one month on it already.
I say, try it! And be sure to see a GYN to check you. It's up to you if you'd like to remove everything. But you might still need to take it even after you have the surgery - know some women who do. Also, I believe this develops after time so maybe try it for 6 months and see how your body reacts to it? So far, I'm doing OK. I will give an update after seeing my GYN.
My radiation advised I see a GNY under oncology because they have a great understanding of tamoxifen. And in many cases, there are a few unnecesary biopsies ordered by general GYN's. So, this is what I'll do for now. What happens later, only God knows. But it's important to take it with faith. Right before you take the first pill, pray and say "in the name of Jesus, this treatment will work and will have little to no side effects on my body". Say it with faith.
Good luck making your decision. I think you'll do great.
I've been on tamoxifen for a little over two months now. So far my weight has maintained with exercise. My only side effect that I am noticing at the moment is I can become moody. I am aware of this and I always stop and think before I speak. Nothing real serious but it just seems my patience is shorter... I know it's because of the hormone change and maybe my body will eventually readjust itself.
I've also read that tamoxifen can cause weightloss too... So what do you believe?? LOL
You will probably do fine... so far it's been a breeze for me. Even my "hot flashes" are quick spurts.
Hugs,
Lorrie0 -
LadiesLoveBabyJesus said:I did!
Hi Julie -- I am so happy you're almost done with treatments. YAY!
Tamoxifen was the scariest thing to me. Scarier than Chemo - YES. Because it's a long treatment. Five years is a long time, and the drug needs to be taken daily. The way I viewed this to make myself take it, and feel OK about it was remembering when I read about chemo. I was so scared! I had no idea what would happen to me. The statistics scare people. The fact is: everyone is different. Thee are side effects to tamoxifen, but not everyone experiences them. When I listen to commercials about other drugs, they scare me too! (e.g. feelings of suicide, stroke, depression, etc..). All chemicals have side effects, because they react to our own body chemestry differently. This is the one thing I made myself believe to proceed with taking the pill.
The other thing that helped me was having some control. I feel by taking a pill daily, I'm doing something to stop the cancer. It gives me hope. And I believe it's helping me, as it had helped many others.
The one thing that bothers me is the side effect about uterine cancer. Why? I have no children and harvested my eggs! I need my uterus. I need my health too. What I will start doing is seeing a GYN under "oncology". Yes, there are many GYN's docs out there, but they don't all understand about tamoxifen as it's a drug related to oncology. Next month is my first appt. to see my Dr. at my hospital, Sloan. They will check me every 3 months to make sure everything looks normal while taking the pill.
As far as side effects, I've had discharge, hot flashes, and a level of depression. But I hear it gets better with time. I think my depression level has improved. I've been on it over one month on it already.
I say, try it! And be sure to see a GYN to check you. It's up to you if you'd like to remove everything. But you might still need to take it even after you have the surgery - know some women who do. Also, I believe this develops after time so maybe try it for 6 months and see how your body reacts to it? So far, I'm doing OK. I will give an update after seeing my GYN.
My radiation advised I see a GNY under oncology because they have a great understanding of tamoxifen. And in many cases, there are a few unnecesary biopsies ordered by general GYN's. So, this is what I'll do for now. What happens later, only God knows. But it's important to take it with faith. Right before you take the first pill, pray and say "in the name of Jesus, this treatment will work and will have little to no side effects on my body". Say it with faith.
Good luck making your decision. I think you'll do great.
I am glad that you have been doing check ups and found a good doctor, who understand Tamoxifen I am also a lucky one who changed gynecologist to be under care of gynecologist /oncologist. Yes, every three months I am having a vaginal ultrasound.
I have not gained any weight while on anti-estrogen therapy 2 1/2 years. I know several sisters from this board who also have been keeping weight pretty stable0 -
The worse that can happen is you would have to switch
to another pill. I took it on two occasions and it was toxic to my system, so I had to stop taking it. But I have been on Evista which is another hormone inhibitor, and this one is working for me.
I wish that tamoxifen would have worked because the benefits sure outweigh the standard side effects, and I was willing to try it a second time as I wanted it to work.
Good luck to you,
Carol0 -
Been on 4 months
Have not gained any weight unless I have eaten like a crazy woman, which I sometimes do. Lost weight at first while still doing radiation and running around so busy. Hot flashes have been my biggest issue, and as I have seen mentioned already you might want to ask for a pelvic ultrasound just to be able to gauge what is going on there. I had one but not until after I was on 3 months so not a true baseline.
To me the benefits are outweighing the SEs and I am all for fighting any recurrance as hard as I can.
Please don't be too worried, give it a try, we all react differently,
Jennifer0 -
I took Tamoxifen for five years.
And I had side effects. I don't know about weight gain, because I have always been fat, but I don't think it depresses your metabolism or causes you to retain water. Diet and exercise are probably the answer to almost any weight gain.
Other than that, I had horrible hot flashes, which were controlled either by 75 mg. daily of Effexor, or by the passage of time - I don't know which one was responsible for the improvement, but I would recommend talking to your doctor about Effexor if you are having bad hot flashes.
I also had some more exotic side effects. My doctor was concerned about bone thinning. I had mild osteopenia (less than osteoporosis) and he put me on Fosamax. In retrospect, I think that was overkill. I also had a blood clot, but that may have been caused more by my sedentary lifestyle than by Tamoxifen. I had another one when I was not taking Tamoxifen! Every night when you are getting ready for bed, look at your feet. If one ankle is significantly bigger than the other one, call your doctor.
I didn't get uterine cancer, or any indications of it. I was concerned at first, too, but I realized the "ten-fold" increase in the incidence of uterine cancer took my chances from 1 in 10,000 to 1 in 1,000. A small risk either way. But Tamoxifen decreases the chances of recurrence of breast cancer by at least several percentage points (ask your doctor to figure it out for you), resulting in a reduction in your chance of breast cancer thirty or forty times the new chance of uterine cancer. Worth the trade-off to me.
The bottom line is that Tamoxifen binds to the cancer cell at the site of the estrogen receptor. Estrogen can't get in the cell, which then starves and dies. I wanted that to be happening in my body! Tamoxifen is much less toxic than chemo and radiation, and you have already made it through those. You will handle Tamoxifen, too!0 -
Thanks everyone!mollieb said:I took Tamoxifen for five years.
And I had side effects. I don't know about weight gain, because I have always been fat, but I don't think it depresses your metabolism or causes you to retain water. Diet and exercise are probably the answer to almost any weight gain.
Other than that, I had horrible hot flashes, which were controlled either by 75 mg. daily of Effexor, or by the passage of time - I don't know which one was responsible for the improvement, but I would recommend talking to your doctor about Effexor if you are having bad hot flashes.
I also had some more exotic side effects. My doctor was concerned about bone thinning. I had mild osteopenia (less than osteoporosis) and he put me on Fosamax. In retrospect, I think that was overkill. I also had a blood clot, but that may have been caused more by my sedentary lifestyle than by Tamoxifen. I had another one when I was not taking Tamoxifen! Every night when you are getting ready for bed, look at your feet. If one ankle is significantly bigger than the other one, call your doctor.
I didn't get uterine cancer, or any indications of it. I was concerned at first, too, but I realized the "ten-fold" increase in the incidence of uterine cancer took my chances from 1 in 10,000 to 1 in 1,000. A small risk either way. But Tamoxifen decreases the chances of recurrence of breast cancer by at least several percentage points (ask your doctor to figure it out for you), resulting in a reduction in your chance of breast cancer thirty or forty times the new chance of uterine cancer. Worth the trade-off to me.
The bottom line is that Tamoxifen binds to the cancer cell at the site of the estrogen receptor. Estrogen can't get in the cell, which then starves and dies. I wanted that to be happening in my body! Tamoxifen is much less toxic than chemo and radiation, and you have already made it through those. You will handle Tamoxifen, too!
I really appreciate you all sharing your experiences with Tamoxifen. I do feel better after reading them. It sounds like the weight gain can be controlled, thank goodness. I am already experiencing hot flashes from the chemo, not fun, but at least I kind of know what to expect! And thanks for the tip on seeing the GYN/ONC, great idea. And I will give my kiddos a fair warning on the mood swings, just in case, LOL!
Thank you all again. I spoke with one of my nurses this morning and that helped too. She said most people she knows do really well on this. I'm feeling a little more at peace with this today than I was over the weekend. I know prayer plays a big part too.
Hugs to all of you and I wish you all the best!
Julie0 -
Julie,
My concern was that
Julie,
My concern was that there seemed to be a lot of side effects for Tamoxifen and not as many for the AI's. I opted to have my ovary out so I could go straight to the AI. (the generic for Arimidex)
The one good thing about the Tamoxifen is the bone loss. With the AI's you have to worry about osteoperosis, that is not the case with Tamoxifen.
Really hash this out with your doctor while you are waiting. See what will be to your advantage.
As to the weight gain, that is part of menopause. (Same thing with the moodiness Lorrie) That is probably why it is not listed as a side effect. It is different for all women, you don't look like you have issues with weight anyway so you may luck out.
All the best!
Cindy0 -
Himamolady said:Julie,
My concern was that
Julie,
My concern was that there seemed to be a lot of side effects for Tamoxifen and not as many for the AI's. I opted to have my ovary out so I could go straight to the AI. (the generic for Arimidex)
The one good thing about the Tamoxifen is the bone loss. With the AI's you have to worry about osteoperosis, that is not the case with Tamoxifen.
Really hash this out with your doctor while you are waiting. See what will be to your advantage.
As to the weight gain, that is part of menopause. (Same thing with the moodiness Lorrie) That is probably why it is not listed as a side effect. It is different for all women, you don't look like you have issues with weight anyway so you may luck out.
All the best!
Cindy
I've been on Tamoxifen
Hi
I've been on Tamoxifen for about 6 weeks and I noticed some hot flashes more the first few weeks.....better now, I felt a bit nauseous but started taking my pills earlier in the morning...seemed to help me. Chemo stopped my periods & if they havent resumed by the time I go back for 3 mth check up, I will be put on something else...I would rather stay on this since I'm used to it but I'm not the Dr! Good luck!!
Renee0 -
I had fearsrenee616 said:Hi
I've been on Tamoxifen
Hi
I've been on Tamoxifen for about 6 weeks and I noticed some hot flashes more the first few weeks.....better now, I felt a bit nauseous but started taking my pills earlier in the morning...seemed to help me. Chemo stopped my periods & if they havent resumed by the time I go back for 3 mth check up, I will be put on something else...I would rather stay on this since I'm used to it but I'm not the Dr! Good luck!!
Renee
I had fears so bad it took me almost a month to start. Finally thought I must do this. I waited for my husband to come home in case of any reaction. I am allergic to lots of things.I even went online to check the reaction/side effects that can happen.Some serious things.Been taking it for almost 2 years in(Dec). No weight gain, no hot flashes but do have a cataract.Eye doctor said it was fine for now.Not large enough to operate. I watch for blood clots because I have varicose veins.So far fine but I am having laser surgery for my veins soon.
It is a precaution.Just hoping it keeps the cancer from coming back.
Lynn Smith0 -
aug was 3 yrs on tamoxifenLynn Smith said:I had fears
I had fears so bad it took me almost a month to start. Finally thought I must do this. I waited for my husband to come home in case of any reaction. I am allergic to lots of things.I even went online to check the reaction/side effects that can happen.Some serious things.Been taking it for almost 2 years in(Dec). No weight gain, no hot flashes but do have a cataract.Eye doctor said it was fine for now.Not large enough to operate. I watch for blood clots because I have varicose veins.So far fine but I am having laser surgery for my veins soon.
It is a precaution.Just hoping it keeps the cancer from coming back.
Lynn Smith
for about 2 1/2 yrs no side effects to speak of...hot flashes, (not bad) painful leg craps at night.(post menopausal bye 3-4 yrs) I did go every 6mths for internal ultrasound follwed by D & C due to thickening of uterus. May of this year I had total hysterectomy due to thickening and bleeding..
Denise0
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