ARIMIDEX

MsGebby

So I haven't posted in a while. For me, having finished with radiation treatments (march 1st TYVM) means never looking back. I don't think about cancer. It's over. At least, that's what I want to think.

Started the Arimidex poison and I am just so sick. It's only been 3 weeks and I want to stop taking this stuff. I get headaches, am achy, very depressed, sick to my stomach, sore throat, cough and just don't feel like me.

Cancer is not going kill me but this blasted arimidex just might! 5 Years??? Are these doctors crazy?!

I see the MO on April 17th and am going to try to stay the course until then. I read a blog about women taking this sh*t and most are stopping because the SE's are just too much to take. The one bit of advice I got from a few of the bloggers was to take this stuff at night. It makes some sense to me because, just maybe, the SE's will be active during my sleep time. I just started doing that.

Ya know ... I stopped taking Arimidex for 2 days and I cannot tell you what a difference that made. 2 days and I was feeling better already. I don't know how a doctor could tell someone that they have to take this for 5 years!

I am thinking it's important to continue because my ER/PR positivity is 98% for both. If I go off it, I don't know what the chances are that the hormones can act up again. Here's the thing though, my Oncotype test says the likelihood of recurrence is a mere 4%. Why do I need this stuff?

When I see this MO, I am going to have a PET scan scheduled (she told me this). The way I see it, if the lung nodules are responding to the Arimidex (don't know if 5 weeks is enough to tell if it is working), then I know I have to stay on it. If nothing is happening, I might want to stop it.

Please ... chime in. I need some guidance. Support...

Love you all

Mary

Double Whammy

Wow, you're having quite a reaction
My onc told me tht even tho all the AIs have the same side effects, not everyone has the same ones on a different AI (like Femara instead of Arimidex). And there's always Tamoxifen. Your recurrence rate on the Oncotype test is typically your recurrence rate if you're taking Tamoxifen or an AI. It's higher if you're not.(I think) Be sure to discuss this thoroughly with your oncologist. I was told that for me, an aromotase inhibitor is every bit as important as chemo was in preventing a recurrence.

Your side effects may get better. They did for a good friend of mine. She was on them for 7 years and was scared to death to stop taking them.

Stupid cancer.

Good luck. Why does everything that's supposed to help us have so many down sides?

Suzanne

sdukowitz

tamoxifin
I was very worried when I started on Tamoxifin in Dec . . . but the leg cramps at night went away after two weeks, thank God . . . the only real side effect I have is hot flashes, but am even getting used to those. I don't think about the long term SE they say could occur . . .I walk everyday for exercise after work and so far, it is going better than I thought . . .

So everyone is different . . check with Med. Oncologist and let him/her know all of this . . .good luck!! -- Sue D.

missrenee

sdukowitz said:

tamoxifin
I was very worried when I started on Tamoxifin in Dec . . . but the leg cramps at night went away after two weeks, thank God . . . the only real side effect I have is hot flashes, but am even getting used to those. I don't think about the long term SE they say could occur . . .I walk everyday for exercise after work and so far, it is going better than I thought . . .

So everyone is different . . check with Med. Oncologist and let him/her know all of this . . .good luck!! -- Sue D.

Obviously, you have to talk to your doctor about this
and the decision is yours to make. I took Arimidex for 18 months and did not have really bad side effects. I did have hot flashes and achy joints, but nothing so severe that would make me want to stop it. Unfortunately, I did have to stop it about 2 months ago when bone mets were detected. My tumor was also 98% estrogen/progesterone +, but for some reason, the Arimidex stopped working. So, as you can see, in my case--it's no guarantee either.

Anyway, my point is, discuss all options with your doctor. You being so hormone positive, it seems prudent to take a hormone suppressant to try to keep cancer at bay. Maybe another one would work better in terms of side effects.

I wish you luck on your journey.

Hugs, Renee

MsGebby

thanks everyone
I am thinking with my hormones positivity so high, I will most likely be told to stay on them. I never thought about the fact that these things can stop working. Yikes! IDK just yet. Day 3 taking them at night and the side effects are minimal now. The one thing that is not going well is that I don't sleep. I get 4-5 hours and that's it. AND that's with taking Ambien to put me out.

Not sure what to do now. Maybe I will change up the time I take it (again) Maybe after supper instead of waiting til 11 PM when I hit the sack. I need to get my sleep.

I read that most women do not have a mountain of side effects on this stuff. I guess "I'm special". LOL!

Love you all .........

Mary

SIROD

MsGebby said:

thanks everyone
I am thinking with my hormones positivity so high, I will most likely be told to stay on them. I never thought about the fact that these things can stop working. Yikes! IDK just yet. Day 3 taking them at night and the side effects are minimal now. The one thing that is not going well is that I don't sleep. I get 4-5 hours and that's it. AND that's with taking Ambien to put me out.

Not sure what to do now. Maybe I will change up the time I take it (again) Maybe after supper instead of waiting til 11 PM when I hit the sack. I need to get my sleep.

I read that most women do not have a mountain of side effects on this stuff. I guess "I'm special". LOL!

Love you all .........

Mary </p>

State of Mind
All drugs have side effects and if we need them we learn to work with them. Arimidex is an excellent drug. If it will keep you from having a recurrence it might be worth not thinking of it as a "Poison" but a pill that might allow you to become octogenarian and then some.

In my many years using aromatase inhibitors it's take around 2-3 weeks to feel the full effects and about the same to be relieved of the side effects of the drug.

You have some excellent advise from other women here Mary, so I am just going to wish you luck on this journey too.

Best,

Doris

cctiz

same side effects
Mary i had the same side effects when i took this pill, one morning my legs didn't respond and i fell down that was the last time i took it! it gave me also high blood pressure i felt me so bad i rather died, talked to my onco she switched me to femara, it has side effects as well but not as bad as arimidex, you have to find the pill with the right formula your body takes, tell your onc you want to try different formulas and see which one suits you best since you have to take it 5 years, i couldn't take tamoxifen either, femara is not THAT bad, take it with tons of vitamin B12 and complex B (large amounts) each day and make the effort to exercise every day to ease the joint/muscular/bone pains and to keep low the extra pounds we gain too, hang in there for a while, the body has to get use to it, i know what are you going trough, be patient because by far this is the worst stage since we started the cancer journey - good luck and hugs
cecilia

sea60

Mary, I'm sorry the drug is
Mary, I'm sorry the drug is making you feel so bad. I've commented several times that I just could NOT tolerate Arimidex. Not that Tamoxifen is much better but I felt WORSE with Arimidex. Super bad joint pain, depression and inability to swallow. I had to stop it. Went back on Tamoxifen (which I completed).

You know your body better than anyone. If you feel that bad, talk to your doctor. Some people can tolerate it, others can't.

I hope you feel better soon. Praying for you.

Hugs,

Sylvia

Angie2U

SIROD said:

State of Mind
All drugs have side effects and if we need them we learn to work with them. Arimidex is an excellent drug. If it will keep you from having a recurrence it might be worth not thinking of it as a "Poison" but a pill that might allow you to become octogenarian and then some.

In my many years using aromatase inhibitors it's take around 2-3 weeks to feel the full effects and about the same to be relieved of the side effects of the drug.

You have some excellent advise from other women here Mary, so I am just going to wish you luck on this journey too.

Best,

Doris

I really hope that by your
I really hope that by your changing the time you take it that you will have fewer side effects.

Hugs,

Angie

MsGebby

THANKS
I did change up the timing of taking this drug (thanks Doris). I am taking at 8:30Pm and it seems to be doing the trick. I actually got 7 hours of sleep last night.

I am sorry because I was complaining. It's just that I, like the rest of you, have gone through the hardest part and it seems WRONG to have to feel this bad on "aftercare".

I am aware that this is the best course for me but I am still going to talk with the MO and see if she thinks this is something that I might be able to skip. Honestly, I've read that this drug is for advances BC and/or recurrence BC and/or mets. Since I am not in either one of these categories, I have to ask if this is a bit of an overkill.

If it weren't for the fact that the cancer MAY have found a new home in my lungs, I would've stopped already.

It is comforting to read that others were able to get through this. I feel better just knowing that.

Thanks again for chiming in. Sometimes I need a good kick in the azzzzzzzzzzz

Mary

MsGebby

sea60 said:

Mary, I'm sorry the drug is
Mary, I'm sorry the drug is making you feel so bad. I've commented several times that I just could NOT tolerate Arimidex. Not that Tamoxifen is much better but I felt WORSE with Arimidex. Super bad joint pain, depression and inability to swallow. I had to stop it. Went back on Tamoxifen (which I completed).

You know your body better than anyone. If you feel that bad, talk to your doctor. Some people can tolerate it, others can't.

I hope you feel better soon. Praying for you.

Hugs,

Sylvia

thanks
Sylvia. At least I know it's not just in head (that I feel this way) How long have you been taking this? Does it get better?

MsGebby

cctiz said:

same side effects
Mary i had the same side effects when i took this pill, one morning my legs didn't respond and i fell down that was the last time i took it! it gave me also high blood pressure i felt me so bad i rather died, talked to my onco she switched me to femara, it has side effects as well but not as bad as arimidex, you have to find the pill with the right formula your body takes, tell your onc you want to try different formulas and see which one suits you best since you have to take it 5 years, i couldn't take tamoxifen either, femara is not THAT bad, take it with tons of vitamin B12 and complex B (large amounts) each day and make the effort to exercise every day to ease the joint/muscular/bone pains and to keep low the extra pounds we gain too, hang in there for a while, the body has to get use to it, i know what are you going trough, be patient because by far this is the worst stage since we started the cancer journey - good luck and hugs
cecilia

Hi cctiz
There is a concern for me too about taking this drug. My cholesterol is through the roof and this drug can make it go up higher. I don't need that. Plus I am now being told I am diabetic. One thing after the other. *sigh* I've read too that there is potential for organ damage in the long run.

Not sure what to think at this point. You've seen those commercials for medicines where the side effects are worse than the benefits, right? I have to wonder about this Arimidex.

Stay tuned. I will get answers. Count on it.

I do hope that your symptoms have subsided a bit if not all together. It sounds like you really are sensitive to Arimidex. Please keep in touch. We seem to be in the same car on the information highway.

xoxo
Mary

Minka

MsGebby said:

thanks everyone
I am thinking with my hormones positivity so high, I will most likely be told to stay on them. I never thought about the fact that these things can stop working. Yikes! IDK just yet. Day 3 taking them at night and the side effects are minimal now. The one thing that is not going well is that I don't sleep. I get 4-5 hours and that's it. AND that's with taking Ambien to put me out.

Not sure what to do now. Maybe I will change up the time I take it (again) Maybe after supper instead of waiting til 11 PM when I hit the sack. I need to get my sleep.

I read that most women do not have a mountain of side effects on this stuff. I guess "I'm special". LOL!

Love you all .........

Mary </p>

Arimidex..and ambien
Hiya...
I was on Arimidex.....could NOT function and switched to Tamoxifen...much better. I am concerned about the ambien though. I'm a clinical social worker...work with lots of people who can't sleep well, including me. I've had horror stories about SE's of Ambien, including my most recent client who got into his daughter's car sleepwalking and wrecked, almost killing himself. My son was on it and found the TV on in the morning set to CMT (he thinks he was watching Dukes of Hazzard in his sleep...and eating tons of food)....good friend found 2 blocks from home walking down the middle of the street and didn't know how she got there.....and on and on. This is one med I think should be pulled off the market. I take Melatonin. Natural, no side effects for me and they now make time released. I'm on 5 mg sublingual (works faster, tastes good). It takes some folks a week or two for it to work, and I started low (1mg) and titrated up. Talk to your Onco...mine said the melatonin was fine....and at least I can move on the Tamoxifen.
Minka

MsGebby

SIROD said:

State of Mind
All drugs have side effects and if we need them we learn to work with them. Arimidex is an excellent drug. If it will keep you from having a recurrence it might be worth not thinking of it as a "Poison" but a pill that might allow you to become octogenarian and then some.

In my many years using aromatase inhibitors it's take around 2-3 weeks to feel the full effects and about the same to be relieved of the side effects of the drug.

You have some excellent advise from other women here Mary, so I am just going to wish you luck on this journey too.

Best,

Doris

Hi Doris
I've been thinking about you. How are you doing?

Thanks for the kick in the azzzzzzzzzz. I call it poison cuz it feels like it's going to kill me. Seriously! But .... I did change the timing again. It seems to be helping quite a bit. I might be able to deal with it after all.

It is crazy to think that one goes through so much to get better and then the aftercare seems to be much worse. I am still new to this and still learning what my body (and mind) can take and accept. I am stubborn and sometimes it gets me into trouble. At the moment, I don't think I am being stubborn. I think I am trying to put this whole thing behind me and never look back. Taking Arimidex does not let me do that. It's just a reminder of what I wish didn't happen.

*sigh*

MsGebby

missrenee said:

Obviously, you have to talk to your doctor about this
and the decision is yours to make. I took Arimidex for 18 months and did not have really bad side effects. I did have hot flashes and achy joints, but nothing so severe that would make me want to stop it. Unfortunately, I did have to stop it about 2 months ago when bone mets were detected. My tumor was also 98% estrogen/progesterone +, but for some reason, the Arimidex stopped working. So, as you can see, in my case--it's no guarantee either.

Anyway, my point is, discuss all options with your doctor. You being so hormone positive, it seems prudent to take a hormone suppressant to try to keep cancer at bay. Maybe another one would work better in terms of side effects.

I wish you luck on your journey.

Hugs, Renee

That scares me
Maybe it shouldn't since we are all different. I just don't understand any of this. I mean, I fought not to have chemo, opted for radiation, got 2nd and 3rd degree burns, went through 38 treatments (PET scan lit up around the breast that had the lumpectomy). I wonder if the Arimidex stops working more often than we know.

Either way, I still have to wonder why I would be taking this drug KNOWING my recurrence risk is a mere 4%. It seems like it is a bit much.

I feel like I am in a "gray area" and I don't know which way to step.

I thank you for your words and input because, God knows, I need some guidance.

Are you doing better? I certainly hope so. What options were presented to you after Arimidex stopped working?

Please stay positive and happy and HEALTHY!

xoxo
Mary

cctiz

MsGebby said:

Hi cctiz
There is a concern for me too about taking this drug. My cholesterol is through the roof and this drug can make it go up higher. I don't need that. Plus I am now being told I am diabetic. One thing after the other. *sigh* I've read too that there is potential for organ damage in the long run.

Not sure what to think at this point. You've seen those commercials for medicines where the side effects are worse than the benefits, right? I have to wonder about this Arimidex.

Stay tuned. I will get answers. Count on it.

I do hope that your symptoms have subsided a bit if not all together. It sounds like you really are sensitive to Arimidex. Please keep in touch. We seem to be in the same car on the information highway.

xoxo
Mary

natural supplements
Hi Mary I have high cholesterol levels as well, i take tons of herbal supplements each day and they seem to work wonders, for my cholesterol i take red rice yeast with chitosan twice a day, i have to agree that the pill is worst than anything else we went trough, i heard people being crippled and since the symptoms are progressive many of them quit and i dont blame them, is such the missery we rather die than live like that - i met this pharmaceutical lady at a social event and she mentioned doctors dont tell patients the tremendous side effects of these pills, she gave me tips i shared and although life is not the same is a different one i already embraced, humbly and grateful i keep on with a "normal" life by the way the pharmaceutical lady made me promise NOT to quit it, I will take it 3 years and will keep the vitamins and supplements.
Talk to your onco for another formula, wish you the best xoxo cecilia