Any info on Tamoxifen would be much appreciated
to taking this medication for FIVE YEARS. But then reality catches up with
me and says "Eey STUBID (yes it has a brooklyn accent), at least you get ay
fighding chance!"
I am reaching out to you for any advice on this medication. Hot flashes
and stuff. My biggest concern is joint pain, I already got it pretty bad
from chemo, will it get worse?
So guess what??? You will have to put up with me at least for another 5 years - B I G grin [:
Hugs,
Ayse
Comments
-
I just went back on Tamoxifen this month
I have been on tamoxifen since Aug 2008-I had no real side effects (I went @ 6mths for internal ultrasound followed by D & C to look for thickening of the uterus -which I did have) then Jan of this year- I started bleeding (post meno)-I was taken off the Tamoxifen to see if it helped and it did not. I had total hysterectomy (just returned to work 2 wks ago) and NOW back ON Tamoxifen. The only side effect I really notice NOW IS insommnia. I can fall asleep as soon as my head hits the pillow and then I wake up (for hours)
I have never had joint pain! So NOW I have 2 yrs to go...
Denise0 -
No Tamoxifen here, just a
No Tamoxifen here, just a hello and I'm super glad we get to put up with you for another 5 years.
Hugs
Kari0 -
Took it about 10 monthspinkkari09 said:No Tamoxifen here, just a
No Tamoxifen here, just a hello and I'm super glad we get to put up with you for another 5 years.
Hugs
Kari
I was on Tamoxifen about 10 months. I had the hot flashes and some fairly minor leg cramps. I did not have joint pain. I was moody for the first couple of weeks I was on it but it improved after that. My Onc suggested having my ovaries removed ( I did) and switching to Aromasin. I started it last week. Best of luck with tamoxifen. God Bless
(((hugs))) Janice0 -
Tamoxifen
Ayse... I have been on Tamoxifen since March 2010. Like you, I wasn't thrilled about having to take a drug for five years. I am not a pill taker and I was so NOT looking forward to the drug. But, in the end, I decided to do it because I want to do everything in my power to prevent the coward that is cancer from ever, ever coming back!
Just so that you know, Tamoxifen is supposed to be bone sparing. Some of the postmenopause drugs are not.
The symptoms I noticed were fatigue, leg cramps, and some joint pain. Hot flashes as well, but I was having those with chemo and those "personal summers" are still with me. The symptoms started to decrease after a spell. I think my body was acclimating to the new drug. My energy level is back and I continue to exercise 4-5 days a week. I am working on my weight, but I am STRONG!
I met with my onc last Tuesday and I have graduated to annual mammograms and will be seen semi-annually. June 1st marks my 2nd year Survivorship Anniversary!
Best of luck to you. I hope you have minimal side effects. Take care, God bless.
Ines0 -
Five Years of Tamoxifen
I was on Tamoxifen for the full five years, from 2004-2009. The first six months were the worst, because the hot flashes were unmanageable. Then they just stopped. I don't know whether it was because sometimes hot flashes do go away after six months or because I started taking Effexor. My advice is if you have hot flashes, try Effexor. If that doesn't work, wait six months.
I suffered from other side effects as well (osteopenia, DVT-3.5 years of coumadin), but compared to this year dealing with a new cancer (not a recurrence), mastectomy, chemo, and radiation, they weren't important. Plus, once the hot flashes were gone there was not much hassle day to day. Later this year I will start five years of Arimidex, and I plan to be grateful if that's the only treatment I need.
Tamoxifen is chemically similar to estrogen, and it binds itself to the cancer cell where estrogen would ordinarily attach. It keeps estrogen from getting to the cell, but it doesn't feed the cancer the way estrogen does. So the cancer cell doesn't get food. There is a boatload of research linking five years of Tamoxifen to reduced chance of recurrence. Don't stress out in advance. More likely than not you will be part of the majority that does just fine on Tamoxifen.0 -
Ayse,mollieb said:Five Years of Tamoxifen
I was on Tamoxifen for the full five years, from 2004-2009. The first six months were the worst, because the hot flashes were unmanageable. Then they just stopped. I don't know whether it was because sometimes hot flashes do go away after six months or because I started taking Effexor. My advice is if you have hot flashes, try Effexor. If that doesn't work, wait six months.
I suffered from other side effects as well (osteopenia, DVT-3.5 years of coumadin), but compared to this year dealing with a new cancer (not a recurrence), mastectomy, chemo, and radiation, they weren't important. Plus, once the hot flashes were gone there was not much hassle day to day. Later this year I will start five years of Arimidex, and I plan to be grateful if that's the only treatment I need.
Tamoxifen is chemically similar to estrogen, and it binds itself to the cancer cell where estrogen would ordinarily attach. It keeps estrogen from getting to the cell, but it doesn't feed the cancer the way estrogen does. So the cancer cell doesn't get food. There is a boatload of research linking five years of Tamoxifen to reduced chance of recurrence. Don't stress out in advance. More likely than not you will be part of the majority that does just fine on Tamoxifen.
You and I can walk the next five years hand in hand. I started tamoxifen last week, as of today I have exactly one weeks worth of dosage in me. So far so good, I am not noticing any obvious side effects but how much can show up in a weeks time. I might have to ask my hubby though if he noticed any mood swings... LOL
My oncologist recommended "Evening Primrose" if I were to get hot flashes. She said you can find it in the vitamin isle at Walmart. I asked about vitamin E, because some of the girls were mentioning taking that for their flashes. She didn't recommend it for me, saying I need to stay away from estrogen products.
So all I can say girl.. Is let's sweat together, the contest is on...
Hugs,
Lorrie0 -
I am just reaching the endbutterflylvr said:Ayse,
You and I can walk the next five years hand in hand. I started tamoxifen last week, as of today I have exactly one weeks worth of dosage in me. So far so good, I am not noticing any obvious side effects but how much can show up in a weeks time. I might have to ask my hubby though if he noticed any mood swings... LOL
My oncologist recommended "Evening Primrose" if I were to get hot flashes. She said you can find it in the vitamin isle at Walmart. I asked about vitamin E, because some of the girls were mentioning taking that for their flashes. She didn't recommend it for me, saying I need to stay away from estrogen products.
So all I can say girl.. Is let's sweat together, the contest is on...
Hugs,
Lorrie
I am just reaching the end of month 2 on it. At first I didn't notice any changes. Around week 4 the tiredness showed up, but nothing unmanageable. Week 5 came the hot flashes. They aren't as bad as the natural ones I was having last year before all this! It sort of creeps from the chest to the face like you are blushing. I find if I concentrate real hard they go away quicker. The bone pain isn't horrid, it's just like it's aggravating what already hurts. Like I had knee surgery 18 months ago, so my knee aches a little more, or my shoulder feels stiff at times. So far no reasons to stop taking it. I'm just hoping this is as far as the side effects go. Good luck on them and hopefully you will be ok!
Angela0 -
tamoxifen
I didnt have chemo only radiation been taking this med since june 13 hot flashes yes i feel like it is just constant but tolerable still no so much joint pain sometimes cramping but could be from walking I think they say the benefits outweigh all of this so my way of doing all of this treatment is I say well you can do this or you can be like this so I make myself understand every day I take it im doing it so i can take it again tommorrow and the next day and etc. because it is one of our fighting chances to put the beast to sleep0 -
All things considered, doing well on Tamoxifensea60 said:You can do it!
I'm coming off this October after 5 years. Yes, hot flashes...some joint pain but tolerable. That's what I was told, if it gives you better chances, take it!
You'll do good.
Hugs,
Sylvia
Welcome to The Tamoxifen Club, Ayse!
(I say with tongue firmly planted in cheek)
I've been on Tamoxifen for about 18 months, and am doing pretty darn well on it. I've had no joint pain at all -- the only side effect has been hot flashes, which started almost immediately. Two things have helped me with the hot flashes:
- What time of day you take the pill(s) can really make a difference. If you get hot flashes at night, talk with your doctor about taking it in the morning instead. That helped me immensely.
- Vitamin E (400 IU twice a day) also helps a lot with the hot flashes for me. Of course, check with your doctor first -- I got both my oncologist's and gynecologist's blessing.
Lorrie, I don't understand your doctor's comment about Vitamin E and estrogen? I definitely would NOT take any of the hot flash remedies you see in drugstores that contain estrogen or estrogen-like compounds -- but I don't think Vitamin E is related to estrogen?
Also, some women say that Tamoxifen affects their periods -- in my case, it hasn't had any effect at all. Aunt Flo visits every month, regular like the moon, normal as can be.
Ayse dear -- we're HAPPY to put up with you and your beautiful, infectious craziness for another 5 years -- and long after that!
Traci0 -
Tamoxifindeeb111 said:tamoxifen
I didnt have chemo only radiation been taking this med since june 13 hot flashes yes i feel like it is just constant but tolerable still no so much joint pain sometimes cramping but could be from walking I think they say the benefits outweigh all of this so my way of doing all of this treatment is I say well you can do this or you can be like this so I make myself understand every day I take it im doing it so i can take it again tommorrow and the next day and etc. because it is one of our fighting chances to put the beast to sleep
I have been on it since Dec 2009. No problems but some thinning of my hair.It was fine and thin before though.Just more so now.
I just hope it is working.Another either cyst or tumor was found 2 weeks ago.I am waiting for a consultation and a lumpectomy and a clear margins procedure.I am told the tumor is very small.Doesn't mean that helps any. I have had 2 benign tumors since the cancer was found.All in the left breast.I am praying for another benign tumor.
Lynn Smith0 -
Traci,Lynn Smith said:Tamoxifin
I have been on it since Dec 2009. No problems but some thinning of my hair.It was fine and thin before though.Just more so now.
I just hope it is working.Another either cyst or tumor was found 2 weeks ago.I am waiting for a consultation and a lumpectomy and a clear margins procedure.I am told the tumor is very small.Doesn't mean that helps any. I have had 2 benign tumors since the cancer was found.All in the left breast.I am praying for another benign tumor.
Lynn Smith
We discussed a lot in that exam room and I might have some of my info crossed up, you know how that can go with the journey we've been on. She did tell me to stay away from estrogen based products and the mention of vitamin E came up as one to stay away from. She did go on to mention about some medical information regarding something and she was currently taking vitamin E herself, and after reading her journals decided to take herself off it too. So maybe it's not an estrogen tie in, but something in a clinical study made her discontinue use. Sorry I can't remember what she said exactly other then she discouraged me from it.
Sorry for the confusion...
Lorrie0 -
I've got the pills, but, ILynn Smith said:Tamoxifin
I have been on it since Dec 2009. No problems but some thinning of my hair.It was fine and thin before though.Just more so now.
I just hope it is working.Another either cyst or tumor was found 2 weeks ago.I am waiting for a consultation and a lumpectomy and a clear margins procedure.I am told the tumor is very small.Doesn't mean that helps any. I have had 2 benign tumors since the cancer was found.All in the left breast.I am praying for another benign tumor.
Lynn Smith
I've got the pills, but, I still haven't taken even one. I wish you good luck Ayse on tamox and hope you have absolutely NO side effects.
Sue 0 -
TamoxifenRitzy said:I've got the pills, but, I
I've got the pills, but, I still haven't taken even one. I wish you good luck Ayse on tamox and hope you have absolutely NO side effects.
Sue
Maybe I'm "different" ... or just OLD (67) ... but I've been on tamoxifen for about a year. I'd already gone through the menopause thing and had the hot flashes ... so I wasn't looking forward to them coming back ... or joint pain ... or any of the other side effects I'd heard about. So ... the first thing I did was have my anti-depressants changed from wellbutrin and zoloft to effexor. Then I asked my oncologist to PLEASE write my tamoxifen prescription for two 10 mg. pills a day (one in AM and one in PM) instead of one 20 mg.
Now I don't know if it's all my imagination ... or what ... but I have had almost zero hot flashes and only a few "warm" flashes which I could totally deal with... and NO joint pain or other side effects.
hugs.
teena0 -
Well yes, Teena...tgf said:Tamoxifen
Maybe I'm "different" ... or just OLD (67) ... but I've been on tamoxifen for about a year. I'd already gone through the menopause thing and had the hot flashes ... so I wasn't looking forward to them coming back ... or joint pain ... or any of the other side effects I'd heard about. So ... the first thing I did was have my anti-depressants changed from wellbutrin and zoloft to effexor. Then I asked my oncologist to PLEASE write my tamoxifen prescription for two 10 mg. pills a day (one in AM and one in PM) instead of one 20 mg.
Now I don't know if it's all my imagination ... or what ... but I have had almost zero hot flashes and only a few "warm" flashes which I could totally deal with... and NO joint pain or other side effects.
hugs.
teena
...you ARE old...:-o
...but Tamoxifen really does affect every woman differently, which is great for some, incredibly frustrating for others!
The author of After Breast Cancer talks about only having "warm" flashes herself on Tamoxifen. I would say mine are "warmer," but only "hot" when I'm sick. And I've seen myself one poor woman whose hot flashes left her drenched in sweat.
Effexor helps a lot of women on Tamoxifen keep their hot flashes under control (my gynecologist said it would be the next step for me if the Vitamin E ever stops working), so that may be keeping them at bay for you. Let's hope it stays that way!
Traci0 -
I took tamoxifen for not
I took tamoxifen for not just 5 years, but a total of 7. Back then, no one knew how long I should be on it.
Here is the great news: I am still here! 24 years later after a large tumor, 4 nodes, here I am--yay! I credit tamoxifen with a great deal there as, before tamoxifen, my odds were not great in 1987.
As to what to expect, I am sure everyone is different, but here is my honest analysis of my experience. I was 33 when I started tamoxifen, so it was pretty obvious to me (and my husband) that it decreased my libido. I still had some interest but way less.
Over 7 years, I gained about 10-20 lbs. The good news is that my weight came off pretty quickly when I stopped the drug.
I never had any joint pain, but I do remember some fatigue in the last couple of years.
I did have hot flashes and some night sweats, but I managed them conservatively: all cotton, all of the time and I kept a spare nightie by my bedside in case I woke up sweaty. Most of that got better with time.
Mostly, I did not notice much of anything terrible and, most important, I am still here! If you are ER+, I think tamoxifen is valuable tool.0 -
Hey AyseTraciInLA said:Well yes, Teena...
...you ARE old...:-o
...but Tamoxifen really does affect every woman differently, which is great for some, incredibly frustrating for others!
The author of After Breast Cancer talks about only having "warm" flashes herself on Tamoxifen. I would say mine are "warmer," but only "hot" when I'm sick. And I've seen myself one poor woman whose hot flashes left her drenched in sweat.
Effexor helps a lot of women on Tamoxifen keep their hot flashes under control (my gynecologist said it would be the next step for me if the Vitamin E ever stops working), so that may be keeping them at bay for you. Let's hope it stays that way!
Traci
I've been on Tamox
Hey Ayse
I've been on Tamox for a year now. I sweat like crazy in this heat which I never used to do
but no joint pain. However I take meds for severe arthritis in my right knee so that may be curbing any joint pain I would would otherwise have from the Tamox.Good luck with it.
Dee0 -
Tamoxifen notes
I've already finished 3 years on Tamoxifen and then 5 on Aromasin. The first two days were the worst. Then I got a headache that Tylenol took care of quickly once I decided I should take a pill besides what my doctor had given me(I was very cautious about taking anything!). The headache was gone after the first few days and never returned. My good cholesterol (the HDL) rose, my bones stayed healthy, and lubrication (you can use your imagination) increased. Unfortunately, my ovaries also responded to Tamoxifen and created a few stubborn cysts the doctors picked up on. My periods were short but heavy too. I wasn't in pain, but they wanted things out just in case. Everything turned out to be normal, but then I qualified for Aromasin and stopped the Tamoxifen. That drug is even better at preventing cancer, but side effects are definately not as kind.
By the way, if you get hot flashes on Tamoxifen it is supposed to be working better for you than it does for folks on Tamoxifen who fail to get flashes. So keep on smiling as you fan yourself. Cold drinks, wet washclothes, and clothes that layer and come off fast work well for flashing concerns. Good luck!0 -
I have two years from nextsea60 said:You can do it!
I'm coming off this October after 5 years. Yes, hot flashes...some joint pain but tolerable. That's what I was told, if it gives you better chances, take it!
You'll do good.
Hugs,
Sylvia
I have two years from next week and then off...countdown...lessens0 -
No tamox here either, but,pinkkari09 said:No Tamoxifen here, just a
No Tamoxifen here, just a hello and I'm super glad we get to put up with you for another 5 years.
Hugs
Kari
No tamox here either, but, good luck to you Ayse!0
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