Side Effects Cause Many Breast Cancer Patients to Stop Therapy

Dec 12, 2011 Full story: Science Library Pad 27

A group of widely heralded drugs used to treat breast cancer patients to prevent recurrence of tumors , is now proving troublesome for many women who have to take them.

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Maria

Manchester, UK

#1 Jun 12, 2012
I have been taking femara for 2 years with no bad side effects suddenly I develop a terrible cough, sore back, stomach ,head, exhaustion and weight loss. I have been taken off the tablets while I have scans in case it's a reaction to the tablets. Has anyone else had this?
Vick

East Rockaway, NY

#2 Jun 12, 2012
Go on tamoxifen, it's much safer and cheaper.
Gail Perry

Seminole, FL

#4 Jun 13, 2012
Vick, I did worse on Tamoxifen than I did on the armotase inhibitors, and that's saying something.

On the AI's I had such severe joint pains that my doctor did an MRI on my knee -- which showed *absolutely nothing wrong with it.* This happened over and over. My opinion (it's just my opinion and not an expert one) is that the AI's magnify pain we would otherwise ignore. A little twinge feels like we'ce done something awful.

I had so many side effects I can't keep track of them, but the final straw was the panic attacks, which I had never had before in my life. I ended up in the ER (with no health insurance, mind you)$8,000 later (including ambulance) I was now on Xanax.

It also cause terrible insomnia for me. I've been off the drug now for over two years but I still have the insomnia and have to take something every night to fall asleep, no matter how sleepy I am. I feel the AI's changed my brain forever.

It doesn't happen to everyone. I started on Femara. When I had all these side effects, the doctor changed me to Arimidex. Then I had headaches all the time. So he changed me to Tamoxifen. Within five days I was majorly depressed and would sit on the couch for three hours watching mindless TV debating whether it was worth the effort to get up and make a sandwich for lunch.

I know it increases the risk that the cancer will come back. As we can see here, these things do not happen to everyone. My reactions to them were extreme. But I urge parents to get an HONEST report from the doctor about what the side effects *may* be. Then try them. If there's ANY way you can find to tolerate them (including meds to manage the side effects) do everything you can to stay on them. They really do save lives.

For me, it was just intolerable, but I'm an extreme reaction. You can try them without signing a life contract and you might tolerate them pretty well. Don't expect NO side effects. That's not a reasonable expectation.

For the hot flashes, esp. in the summer time, put "cooling scarves" into Google. Get lots of them. Keep them in a cooler in your car if you have to (I soaked mine in ice water and wore them around my head as well as neck, but I live a very active, outdoor life in Florida. They really help.

If you have a water bed, turn down the temperature on your side. Look for "wicking" sports shirts for when you will be outside -- gardening, for instance.
Gail Perry

Seminole, FL

#5 Jun 13, 2012
PS -- I meant "patients," not parents! I hadn't had any caffeine. That's my excuse and I'm sticking to it.:)

Also, some people may tell you to take black cohash or some other alternative treatment for hot flashes. Be sure to check with your doctor before doing that. Some of the alternatives for hot flashes are a bad idea if you've had hormone-sensitive breast cancer.

Since: Mar 12

U.K

#6 Jun 14, 2012
i tried tamoxofen and arimidex and found both had equally unpleasant side-effects. i decided to stop messing about with my body's natural hormone levels and stopped taking them. post-menopausal due to chemo, i didn't see how i could have such an excess of hormones now to effect any hormone-sensitive cancer, and having had a radical mastectomy plus radiotherapy, i asked myself to what could the cancer possibly return. i'm not suggesting anyone stop their medication (i know everyone's circumstances are different), i'm just saying for me i believe the cancer has no reason to return and if i got cancer again it wouldn't be breast cancer so why put up with side-effects for something that is unlikely to happen.
Vick

East Rockaway, NY

#7 Jun 14, 2012
Anti estrogen therapy drugs do not cure cancer they may delay occurrence or recurrence of cancer in susceptible patients. Cure in Breast cancer is hard to define as breast cancer can return even after 20 years. Many side effects mentioned above are independent of these drugs as if they were caused by drugs they stop immediately after discontinuation of drugs. Arimedex and AI drugs are usually second line of drugs after Tamoxifen or in concurrence with it in case of recurrence. However drug companies are pushing AI drugs over Tamoxifen, which in use over 40 years and proved the test of time.
Gail Perry

Seminole, FL

#9 Jun 15, 2012
Pharma Maims Kills wrote:
Pharma strikes again. Faulty, fraudulent products and constant lawsuits are their business plan.
RUBBISH strikes again! Why don't you reveal your profit motive for putting down mainstream approaches so we can have an HONEST exchange here?

Chemo saves lives. Surgery saves lives. Herceptin saves lives. AI's save lives. Sorry if that cuts into your profit margin.

I've taken this issue seriously for a while, but now I have a friend who is going to die a premature death because he believed people like you.

He had a bad valve in his heart. His doctor prescribed medication for him. My friend refused to take them, and instead dosed himself with vitamins and alternatives.

He's had the valve surgery, but it's too late. Alternatives "experts" told him to walk more, and he walked up to 4 miles nearly every day -- again, against medical advice.

Now he has a badly enlarged heart because *his particular situation* made such exercise a BAD idea, not a good one. Didn't help that he stopped taking his blood pressure medicine.

He survived the surgery, but there is nothing to be done about the damage done to his heart while he was ignoring those "evil pharmas."

This kind of advice KILLS PEOPLE.
Gail Perry

Seminole, FL

#10 Jun 15, 2012
Dream Carousel wrote:
i tried tamoxofen and arimidex and found both had equally unpleasant side-effects. i decided to stop messing about with my body's natural hormone levels and stopped taking them. post-menopausal due to chemo, i didn't see how i could have such an excess of hormones now to effect any hormone-sensitive cancer, and having had a radical mastectomy plus radiotherapy, i asked myself to what could the cancer possibly return. i'm not suggesting anyone stop their medication (i know everyone's circumstances are different), i'm just saying for me i believe the cancer has no reason to return and if i got cancer again it wouldn't be breast cancer so why put up with side-effects for something that is unlikely to happen.
Well, I'll tell you how it returns. They think that cells escape very early in the tumor's development, and then hide in the bones. They believe that any bone weakness contributes to its re-emergence. They don't know why AI's help prevent the cancer coming back, but it really does.

I really sympathize with you, and you're obviously very smart and very logical. But the research on this, while difficult to read if you haven't had that training, is very clear. AI's clearly save lives in cases just like yours. If you get cancer again, it really could be breast cancer, and 20 years from now it could be a spin-off of the one you had treated.

It's a hard reality and I hate to say it, but it's better to know.

If you had a mastectomy plus radiation, that means it got into some lymph nodes. I know it's a tremendous relief to have all that stuff zapped, but radiation can't get to the ones that exited your breast via the blood stream, and that does happen.

I'm not saying you should take AI's. I know all of this and still could not tolerate them. But don't drop them just because you think it's unnecessary. They really do save lives.
Gail Perry

Seminole, FL

#11 Jun 15, 2012
No, Vic. AI's do not "cure" breast cancer ... unless you call having it never come back and eventually dying from something else a cure. In other words, you won't know for a long, long time.

It can come back 20 years later, but both AI's and Tamoxifen help prevent that.

I consider myself essentially cured because considering all I did to get rid of it and the fact that it's been six years, it is *unlikely* to come back. That's enough for me to get on with my life and not dwell on that 20 year thing. But if I'm alive with no breast cancer 20 years from now it would be reasonable to call me cured.

AI's are just another weapon in a doctor's arsenal. Like Herceptin, they only help certain people, but for those people they really do help.

I have no problem with people saying "I just can't tolerate them." I was the "poster child" for that. But no one should skip them because they think it's just not necessary. That's just not true.
Gail Perry

Seminole, FL

#13 Jun 15, 2012
Phrma Maims Kills wrote:
<quoted text> Your friend's illness is not caused by me. These illnesses happen. I'm no heart specialist. Was you friend over weight, a smoker, a former user of Merck's Vioxx (killed 88,000 by damaging their hearts). Get real about who you accuse. You have no evidence. I do. Search Merck Vioxx with the word lawsuit.
I never said you caused a darn thing.

So ... you didn't say yet what your financial interest is in tearing mainstream medicine down. Are you afraid to answer? I know there's a financial interest here. People who just choose to *use* alternatives have a live-and-let-live attitude.

No, DOCTOR. My friend was not overweight, never smoked, didn't take Vioxx (remember the part where I said he didn't like meds?????) His valve went bad.

EVERYONE dies eventually. Eventually, SOMETHING gives out. No one lives forever, even if they take every single thing you have to sell them. YOU will die.

Learn to read. I didn't accuse you of anything.
Gail Perry

Seminole, FL

#15 Jun 15, 2012
You Got To Be Kidding wrote:
<quoted text> You said your friend will die a premature death because of people like me. But I can see you're a looney, and I can't be bothered to deal with you.
Yes, Sparky. People LIKE you. Not you personally. But if you're leaving here, I'll be glad.

If you're not leaving here, I'll be glad to counter what you have to say. I notice you haven't yet denied being a huckster for alternatives. Well, of course not -- if you said that, no one would email you for orders! Your reluctance to reply on that question speaks volumes.

By the way, Dr. Kidding -- it's clear from your prior post that you are completely unfamiliar with the most common cause of mitral valve prolapse -- HEREDITY. Not cigarettes, not Vioxx, not being overweight, although of course all of those things could make it worse by compromising the heart in other ways.

You have buzz words and sound bytes but no real information.
Vick

East Rockaway, NY

#16 Jun 15, 2012
Vioxx was a wonderful drug, it helped millions. Side effects of vioxx are no different from Aspirin or NSAIDs or other cox2 inhibitors. If Aspirin was introduced today it will be never approved by FDA. Celebrex a similar drug still on market. Vioxx was made a scapegoat. Vioxx like any other drug taken in large amount will cause heart problem in patient who have preexisting coronary artery disease but not in normal patients without coronary artery disease. It only helped lawyers to get rich.
Minnie

Seattle, WA

#18 Oct 3, 2012
I have been taking Femara (Brand name and not generic) and have had no side effects. My doctor though has asked me to take a bone density test twice now to make sure that I don't develop osteoporosis which is the most common side effect of taking Femara. Last year, I was switched by my insurance to the generic Femara and that did not work for me. The generic Femara gave me all kinds of feelings of anxiety and mood swings. I thought I was going crazy. My moods were up and down like a roller coaster. I switched back to the Brand name Femara and I felt myself again. I had to appeal to my insurance to pay for it which they fortunately granted but whether or not they paid for it, I will not take the generic brand even if I have to pay for the brand name myself. There really is a big difference.
I am thankful that I only have one and half years to take Femara then I will definitely feel to be out of the woods.
Gail Perry

Tampa, FL

#19 Oct 3, 2012
Minnie wrote:
I have been taking Femara (Brand name and not generic) and have had no side effects. My doctor though has asked me to take a bone density test twice now to make sure that I don't develop osteoporosis which is the most common side effect of taking Femara. Last year, I was switched by my insurance to the generic Femara and that did not work for me. The generic Femara gave me all kinds of feelings of anxiety and mood swings. I thought I was going crazy. My moods were up and down like a roller coaster. I switched back to the Brand name Femara and I felt myself again. I had to appeal to my insurance to pay for it which they fortunately granted but whether or not they paid for it, I will not take the generic brand even if I have to pay for the brand name myself. There really is a big difference.
I am thankful that I only have one and half years to take Femara then I will definitely feel to be out of the woods.
It just shows you how much people can vary on the same drugs. I'm glad you spoke up (do get that bone scan; if you're on Femara you had the type of cancer where it's very important to keep your bones strong, but I bet you already knew that.)

I took Femara and had *awful* side effects. Especially the anxiety was a surprise, because I had never had anxiety before. I switched to the generic, which at the time I had to get from Canada. I still had all the same side effects, so I think it was as good *for me* as the Femara.

But I did have to stop it. I just couldn't take the many side effects I had. I'm so glad you didn't! This is why I've said that women who are candidates should at least give it a try.

I'm so glad your insurance company was reasonable.
Vic

East Rockaway, NY

#21 Oct 3, 2012
Arimedex has less side effects than Femara.
Gail Perry

Saint Petersburg, FL

#22 Oct 3, 2012
Vic wrote:
Arimedex has less side effects than Femara.
It's all very individual. I had more side effects on both Arimidex and Tamoxifen. I just didn't tolerate any of them, but on Arimidex I had a constant dull headache that I didn't have with Femara.

Even though it didn't work for me, I urge women to try all the hormone-suppressing drugs before giving up on them. They really do save lives, and like the woman above me, some people do extremely well on them. I wish I had been one of them; it feels like Russian roulette to not be taking it.
Meridith

Torrance, CA

#24 Oct 9, 2012
I have been on Femara now for 7 months, after I stopped it and then restarted agan. I had already been on Tamoxifen and Arimidex unsuccessfully. I have been gaining weight, due to my inability to exercise from severe bone pain and tiredness. I'm taking a multivitamin and glucosamine, but I'm just tired. I was walking daily for exercise, but the next day, the bone pain was so severe I couldn't walk on my feet, to get to the restroom. The hot flashes are there, as well as bad brain fog. All I can say is I'm seriously thinking of getting off the Letrozole, all AI's period, because my quality of life is just not good anymore. I'm tired of existing with all these pains, living in a fog and just merely existing. Really. I'm now ready to take my chances and get back to feeling normal, as opposed to lethargy and fogginess all day long. My wondering how everyone else is doing on Letrozole has brought me to this site. I see that I'm not imagining these symptoms, but I still am fed up and ready to take my chances.
Vic

East Rockaway, NY

#25 Oct 9, 2012
All these medications are not chemotherapy, they do not cure cancer but may slow the growth or delay the onset of reccurrence.
Gail Perry

Saint Petersburg, FL

#26 Oct 9, 2012
Vic wrote:
All these medications are not chemotherapy, they do not cure cancer but may slow the growth or delay the onset of reccurrence.
Of course they're not chemotherapy, but they CAN prevent a spread to the bones, which would be life-saving.

Like I say, I really wish I could have tolerated them. It feels like Russian roulette to not be taking them.
Barbara

Phoenix, AZ

#27 Oct 11, 2012
I am wondering if anyone has tried the letrozole made by by accord labs-or any other ( there are quite a few labs that make the generic).

I took Femara for about a year with few side effects ( I did gain 5 lbs, got osteoporosis and high cholesterol, but no bone or joint pains :). Then I had to switch to the generic, took the one made by Mylan and saw no change, no joint pain.

I tried a mailorder pharmacy and was sent the generic from Accord labs. Afetr a few weeks I began to get knee pain, insomnia, depression. So I located the Mylan one again from Walgreens and felt fine. Now Walgreens switched to Accord and I have taken them for 3 weeks, back to feeling bad.

Mylan seems to not be available anywhere now- I just called 10 pharmacies.

I'm kind of at my wits end. I don't want to stop ( and have 3 more years to go on it.

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