hi Ladies I was wondering if anyone has been prescribed Tamoxifen for a second time . I was on it it for 5 years after initial diagnosis . Fast forward 15 years and the cancer has returned,I have been on treatment for 5 1/2 years & I have taken most of the Estrogen blockers available . My oncologist has mentioned about re introducing the Tomoxifen .
Any experience would be appreciated .
Thank you Luann
Yes My Oncologist started me on Tamoxifen for reoccurance of Metastaric Cancer Diagnosed again 3 yes . ago. Pet Scan showed no improvement. Cancer continues to spread with no improvement just usual, awful Side effects. Wish I had better news but in my case it did not work. Praying for you and hoping the best. Thank you for sharing. This site is a breath of fresh air and Knowledge. 🥰
This site is a group of amazing people . Can I ask what they switched you to ?
Thank you for sharing . I appreciate it
Luann
Have not started me on anything new yet. Did receive information re. Piercy and have read all comments regarding g it on site. I am afraid to try this one as have had frequent bed side effects from most. Ibrance kept Cancer in control with minor Side effects for a year, then 15 months on Versinio, sorry if mis-spelled, before Cancer spread again. Those 2 worked well when they did, however like others I've tried they only worked for a certain amount of time. Keeping as upbeat as I can, you do the same. Miracles do happen and I will pray for all . 😇
Amen
I am on Ibrance but I'm working hard toIgnore the side effects. I wanted to ask if the Ibrance was working well, why did you switch to Versinio? Did the Ibrance only work for a year?
The last scans I had, they said everything was clear. I go back in November with the hope I hear the same news. Were your scans ever clear if you don't mind if I ask you that?
I am supposed to start ibrance some weeks ago- but worried about side effects - as you mentioned- it’s a lower dose of .75 - what are your side effects like- hopefully they are temporary as many women seem to do ok- I also take anastrozole
Hi Tantalon, I was on Ibrance for 15 months and had no side effects except for low white blood cell count (even after they reduced my dose to 100mg) and a tiny bit of hair thinning. I was a bot low-energy bit that may have been due to other factors. Otherwise I felt totally normal, and it worked very well for a while in reducing my cancer. Wishing you best of luck 🙏🏼
Ibrance was a piece of cake for me and worked for nearly 3 years. I think it is a fabulously effective drug for many! Just drink lots of water to keep very well hydrated
Hi Luann,
I was diagnosed with MBC 13 years after my first BC diagnosis. Since I had found 5 years of tamoxifen very easy to take, I suggested that I be started first on tamoxifen, and my oncologist complied. After I read several early research studies which indicated that more patients improved on the higher dosage, I decided to take double tamoxifen (40 mg rather than 20 mg). My cancer markers for the year (Oct. 2019 to Oct. 2020) I was on 40 mg. decreased from 67 to 49.
Saskatchewan is the only province which has not approved 40 mg of tamixifen so my oncologist insisted after the first year that I revert to taking only 20 mg. My cancer markers then steadily increased to 125 by June, 2021, and my oncologist decided that tamoxifen wasn't working. It certainly was the case for me that 20 mg. of tamoxifen did not control my cancer. However, 40 mg. seemed to be doing well at the time.
I am currently taking letrozole with 600 mg. ribociclib, and my cancer markers are again as low as they were on 40 mg. of tamoxifen. Unfortunately, I have more side effects with this regime, but my cancer does seem to be under control. It was not under control when I was taking lower dosages of ribociclib.
We are all different. I finally decided (with my oncologist's agreement) that I had to take the maximum dosage of ribociclib as I weigh 180 lbs. It made sense to me that heavier bodies may well require stronger doses. I wish cancer researchers would start studying individual differences that may affect medication levels. Anyway, if I were you, I'd be happy to try tamoxifen again, especially if my oncologist was open to the possibility that I might require a higher dosage.
Regards,
Cindy
I always wonder about that. I am quite small, and I find with psychotropic meds, I have to take a half dose so I don't fall into a deep sleep for a couple of days. It seems that I must have a higher concentration of meds in my bloodstream, or other system, and could do with a lower dose. (At least breast cancer meds are not normed on men, as so many are.) I always suggest it but usually get nowhere. Like my question doesn't make sense to doctors. I wonder if you have found research on this.
Hi Luann: Certainly you can try Tamoxifen twice. Even the lowest dose. I take 5mgs twice a day with Verzenio. At the larger doses I had thickening of the uterus but no side effects now. I have never heard of Tamoxifen alone. I am in Ontario, Canada also. Thankfully, it is working now. Scans show stable.
Cheers, June S.
The first time I took the tamoxifen was after initial diagnosis and treatment and I took it for 5 years. This time it will be with another medication , if that is what is decided on . Thank you
Luann
Hi. I was taking it for two and a half month for mbc. No help, progression I hope you will have a better luck. Best
Different med, same principle. I was on arimidex (anastrazole) for five years after my initial breast cancer. Fast forward another 8 years, 13 years after my lumpectomy, etc., onto metastatic, starting with Fulvestrant and Ibrance.
When I needed a new AI, my oncologist put me on Letrozole. Bad reaction. Then she said that, since I was off arimidex for 8 years without recurrence, there is no evidence that it failed to suppress my cancer and since I tolerated it well, I could go back on it. That is what we are doing. Tumor markers are headed down in the right direction. No scan yet; too soon. I just re-started Verzenio at a lower dose, 100 mg twice a day.
Point is, whatever AI you had with the initial cancer is okay to use again if there was a delay before the mbc struck.
Thank you !
Every time I went back on Tamoxifen I got migraine headaches. I’ve been taking Letrozole with Ibrance, scans clear the last 4 years. I was good for 20 years just on Letrozole after radiation treatment. Been dealing with MBC for the past 35 years, They know so much more now on how to treat. Be positive.
You are an inspiration 35 years is incredible ! I will hear this week what treatment options I have . It has been so long since I was on tamoxifen the only side effect I can remember is the sore , stiff joints & hot flashes.
Thank you for sharing your experience.
Luann
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