What problems have you had with Tamoxifen?

In mid-2000, I was diagnosed with an estrogen-positive breast cancer. I had a lumpectomy for a very small tumor, chemotherapy (my oncologist recommended because I was "young"—only 45 and he thought it would be in my best interest) and in 2001, started Tamoxifen and 6.5 weeks of radiation. About 10 weeks into taking Tamoxifen, I started having minute-to-minute, intense sensations of freezing, then burning up—the Tamoxifen was doing its job and binding to the estrogen in my system and putting me into a chemically induced menopause. I was put on 25mg, regular-release Effexor (venlafaxine) to control these "hot flashes."

In late March 2004, I woke up on a Sunday thinking I had a "charlie horse" in my right calf. Nothing eased it and by Wednesday noon, I was at my regular doctor's for muscle relaxers. He knew I was on Tamoxifen and even though my leg was NOT red, NOT hot, NOT swollen, he sent me to the local hospital for a sonagram. Within minutes of the test, I was whisked to the ER and was given several shots of Lovenox (a blood-thinner) and admitted. I spent 8.5 days in the hospital, getting Lovenox shots twice a day as well as oral warfarin (another blood thinner). ). I was on warfarin for a year and had blood taken weekly to monitor and adjust the dose.

While there, they discovered that I had anemia—I had been having HEAVY periods for several months with little, or no pause between. I had a vaginal exam and some uterine biopsies taken. I had developed uterine cancer and needed a hysterectomy. Fortunately, all cancer was contained within the uterus.

Both the leg blood clot and uterine cancer were attributed to my Tamoxifen use. As soon as I was admitted to the hospital for the DVT, my oncologist took me off Tamoxifen.

Sometime after the hysterectomy, I was put on Aromasin (after all, I was now post-menopausal). I stayed on that for another 5 years until my oncologist said no further benefit would come from taking it any longer. The only real problem I had on Aromasin was that from the VERY FIRST dose, I would "urp, urp, urp" all night long after going to bed—no acid reflux, or burning in the throat, just "urp." Careful reading of the teeny print on the multi-page drug info sheet that came with the Aromasin did show “dyspepsia” as a possible side effect. That side effect went away about three months after discontinuing Aromasin.

I so understand your fears. I had a lumpectomy last Friday and my surgeon breezily told me next is radiation five days a week for six weeks and then anti-hormone meds for 7-10 years. I’m 67! I don’t want the next ten years of my life to be miserable. I have degenerative disk disease and had a fusion 10 months ago. I really don’t know what to do.

It really has to be a personal decision about what you want to do for yourself. I would suggest doing as much research as you can, including asking questions of your health care team. Then put it all together and decide what you think you can live with. My problem is that my husband and children are scared of losing me and are mostly focused on the cancer. But it will in the end be my body that suffers the consequences of whatever treatment I do. It is just a really hard place to be in. Good luck with everything!

It's a lot easier if one had any of the genetic tests that use analysis of genes (including looking for well- and lesser-known genetic mutations that signify possible quixotic reactions to cancer) that yield a risk score for recurrence. I had the OncotypeDX done and it changed the breast surgeon's and oncologists outlook for treatment as the risk score was low.

Oncotype's website shows a few examples where clinicians might have predicted differently: a client with Stage 0 non-invasive DCIS but a genetically-based recurrence risk of over 50% and a Stage 4 invasive DCIS with lymph node involvement but yielded a low risk from genetic testing. So, what might sound bad using the usual statistical models, might not have a negative outlook and vice versa.

But people can try the anti-hormone drugs and monitor side effects, if any. Just be aware of the drug's risk profile and which side effects might actually be symptoms of a problem. Every drug has a risk profile. The newest drugs have the least data so my preference is to not take any or proceed either care if one is necessary. Be extra body-attentive in a sense.

I have a telephone appointment for genetic testing on May 16 (to get the ball rolling). My sister had the genetic testing done - it cost her over $6000.00 and they suggested two drugs that would work with her type of cancer. One was only available in the US and we live in Canada. The other had to be on a recommendation of the oncologist. Her oncologist kept making up excuses about why she would not apply for it - I think it was because she was 77 years old and was discriminated against. But is is a moot point now because she died last Friday - one week ago today! So I'll see what the genetic testing says, but I am a bit jaded at the moment!

I have a telephone appointment for genetic testing on May 16 (to get the ball rolling). My sister had the genetic testing done - it cost her over $6000.00 and they suggested two drugs that would work with her type of cancer. One was only available in the US and we live in Canada. The other had to be on a recommendation of the oncologist. Her oncologist kept making up excuses about why she would not apply for it - I think it was because she was 77 years old and was discriminated against. But is is a moot point now because she died last Friday - one week ago today! So I'll see what the genetic testing says, but I am a bit jaded at the moment!

In mid-2000, I was diagnosed with an estrogen-positive breast cancer. I had a lumpectomy for a very small tumor, chemotherapy (my oncologist recommended because I was "young"—only 45 and he thought it would be in my best interest) and in 2001, started Tamoxifen and 6.5 weeks of radiation. About 10 weeks into taking Tamoxifen, I started having minute-to-minute, intense sensations of freezing, then burning up—the Tamoxifen was doing its job and binding to the estrogen in my system and putting me into a chemically induced menopause. I was put on 25mg, regular-release Effexor (venlafaxine) to control these "hot flashes."

In late March 2004, I woke up on a Sunday thinking I had a "charlie horse" in my right calf. Nothing eased it and by Wednesday noon, I was at my regular doctor's for muscle relaxers. He knew I was on Tamoxifen and even though my leg was NOT red, NOT hot, NOT swollen, he sent me to the local hospital for a sonagram. Within minutes of the test, I was whisked to the ER and was given several shots of Lovenox (a blood-thinner) and admitted. I spent 8.5 days in the hospital, getting Lovenox shots twice a day as well as oral warfarin (another blood thinner). ). I was on warfarin for a year and had blood taken weekly to monitor and adjust the dose.

While there, they discovered that I had anemia—I had been having HEAVY periods for several months with little, or no pause between. I had a vaginal exam and some uterine biopsies taken. I had developed uterine cancer and needed a hysterectomy. Fortunately, all cancer was contained within the uterus.

Both the leg blood clot and uterine cancer were attributed to my Tamoxifen use. As soon as I was admitted to the hospital for the DVT, my oncologist took me off Tamoxifen.

Sometime after the hysterectomy, I was put on Aromasin (after all, I was now post-menopausal). I stayed on that for another 5 years until my oncologist said no further benefit would come from taking it any longer. The only real problem I had on Aromasin was that from the VERY FIRST dose, I would "urp, urp, urp" all night long after going to bed—no acid reflux, or burning in the throat, just "urp." Careful reading of the teeny print on the multi-page drug info sheet that came with the Aromasin did show “dyspepsia” as a possible side effect. That side effect went away about three months after discontinuing Aromasin.

There are several companies doing genetic testing. The one I used Oncotype, doesn't male drug treatment suggestions. So maybe the company your sister worked with used genetic analysis specifically for that purpose?

I have a telephone appointment for genetic testing on May 16 (to get the ball rolling). My sister had the genetic testing done - it cost her over $6000.00 and they suggested two drugs that would work with her type of cancer. One was only available in the US and we live in Canada. The other had to be on a recommendation of the oncologist. Her oncologist kept making up excuses about why she would not apply for it - I think it was because she was 77 years old and was discriminated against. But is is a moot point now because she died last Friday - one week ago today! So I'll see what the genetic testing says, but I am a bit jaded at the moment!

I am going to be 72 this coming June. My sister just died last Friday of triple negative breast cancer. Monday would be the one year anniversary of when she was diagnosed. My mom died of breast cancer at the age of 77. My sister was 77. If I am only slated to live another 5 years, which would make me 77, I don't want to spend my time in pain and being a sick person trying to fight side effects from drugs. So, I will likely take the radiation, but I am going to probably skip the Anastrozole or the Tamoxifen because I don't need to be fighting against the side effects. I am still thinking about, and am going to explore Artemisinin to see if it has less side effects. I don't really care if it is not yet proven by a whole pile of studies - at some point Tamoxifen and all the AI's were in the testing phase also. I guess my outlook is different than a lot of younger people - If I were 20 years younger I might feel differently.