Fareston/Toremifene

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  • Lee7
    Lee7 Member Posts: 657
    edited July 2014

    I'm following this thread as I'm interested in asking my onc about switching off of the AI  Femara because of the bone loss I'm experiencing ( along with the bone pain ).  She had talked about Tamoxifen but I was worried about the SE s like uterine thickening and polyps since I had one in the past.  Does anyone know if Fareston carries those same SEs?

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  • Headeast
    Headeast Member Posts: 619
    edited July 2014

    Lee7, go to the home page of breastcancer.org and look for treatments, hormone therapy and you will find a table that compares the different medications amd their side effects.

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  • Headeast
    Headeast Member Posts: 619
    edited July 2014

    This is the link

    http://www.breastcancer.org/treatment/hormonal/com...

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  • Lee7
    Lee7 Member Posts: 657
    edited July 2014

    thanks!  I checked out the chart.  It does help to see them listed side by side to compare SE's. 

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  • Headeast
    Headeast Member Posts: 619
    edited July 2014

    :)

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  • Headeast
    Headeast Member Posts: 619
    edited July 2014

    i just started Fareston, my first day, wish me luck and no SE! 

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  • Lee7
    Lee7 Member Posts: 657
    edited July 2014

    Hope this one does the trick and keep us posted! 

    I plan on asking my onc about it next appt.

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  • Headeast
    Headeast Member Posts: 619
    edited July 2014

    thank you, Lee! I took it at 8pm and so far no SE! I am very worried but I have to try. 

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  • Headeast
    Headeast Member Posts: 619
    edited July 2014

    ok, it will be two weeks since  i started Fareston and so far no SE other than a little discomfort on my knees in the morning. I am so happy to have found this one. I didnt want to quit from the hormone therapy and this is so far a medicine I can handle with no issues!

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  • B123
    B123 Member Posts: 730
    edited August 2014

    headset so glad it's working for you! I may go back to it, arimidex is too much., I'm getting moody, headaches, nauseas and now osteoporosis in my spine! I think I may want to switch just afraid it will not be as effective as the others??

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  • Headeast
    Headeast Member Posts: 619
    edited August 2014

    B123, Fareston is as effective as  tamoxifen from what I read. I stopped it though. I am not taking anything until I see my MO in October. He is actually fine with that. The bad side effects started on week three. I could live with the joint pain, headache, nausea, etc etc but the memory and fatigue were not letting me work and I need to work. 

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  • B123
    B123 Member Posts: 730
    edited August 2014

    headeast, really? I'm so sorry! You were so excited about it. I know when I took it for almost a year, I had no SE and loved it!!  That's good your taking a break from it all, it stays in your system for a while,  

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  • Headeast
    Headeast Member Posts: 619
    edited August 2014

    hi B123! I know it stays for a while, I still van feel it :(.

    I am meeting a number of people who quit the hormone therapy treatment and they are fine. I hope this is my case as well.

    What are yoh taking now?

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  • B123
    B123 Member Posts: 730
    edited August 2014

    are you thinking not to take anything anymore? Sometimes you need to keep taking the meds and work thru the SE for them to pass and feel yourself again. I am on the dreaded arimidex, I hate it and I do have aches and pains.. But I was told to take it with Claritin, I did and it really does help with the pains and brain fog.. 

    Who knows maybe I can get back on Fareston again?

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  • Headeast
    Headeast Member Posts: 619
    edited September 2014

    hi B123! Sorry it took me so long to answer. I wasn't logging in these past weeks.

    I am feeling much better now without any hormone therapy. I have met a few ladies that stopped the medication and they are still doing great. A few over ten years after BC.

    Wishing you the best. Keep us posted!

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  • gemini4
    gemini4 Member Posts: 532
    edited September 2014

    B123 -- I see you're in Massachusetts, too.  I'm not sure if this a federal- or state-level mandate, but the ACA mandates that breast cancer rx drugs be fully covered. Last summer (2013) my copay for tamoxifen went from $18 to $0.  

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  • stabb
    stabb Member Posts: 1
    edited October 2014

    Hi,

    I am new to this site and wondered if anyone had SE from Fareston in which a total hysterectomy was needed? I was on Tomaxifin and had horrible SE and was changed to Fareston in May. I thought I was doing great but had an ultrasound in July and had ovarian cysts. They were normal and the Dr. suggested we wait and check again in 3 months. October and my cysts have become complex and there are uterine changes. I had a cancer blood test which was negative. My gyno said to have a total hysterectomy I am seeing a gyno oncologist for his opinion. My oncologist took me off the Farestone.

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  • Cyborg
    Cyborg Member Posts: 848
    edited October 2014

    I have been taking Fareston for 3 years. Side effects are hair loss, sleep problems.and Joint pain. 

    I am really upset about the hair loss. Will it grow back....I wonder.

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  • every8thwoman
    every8thwoman Member Posts: 147
    edited October 2014

    I took Fareston for approx 5 years.  I found SE were much fewer and less severe then when I was on Tamoxifen.  Weight gain was the worst SE on Fareston but also experienced some hair thinning. 

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  • B123
    B123 Member Posts: 730
    edited October 2014

    I have to say, I loved Fareston..I felt great with no SE at all. The reason I stopped was because my onc said she feels that an AI is stronger and has been around more. Plus was expensive with ins I had at the time.  It's killing me and my bones though.. Thinking to go back to Fareston. I had tamoxifen and was sick sick! I had a hyster just for safety reasons. No regret, I feel better knowing I don't have to worry about it.  So many hard decisions!! 

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  • NWArtLady
    NWArtLady Member Posts: 360
    edited August 2015

    Is anyone still on this thread? I'm on Fateston after being on tamoxifen and no longer have the joint pain and overall body aches (yay!) But I'm now having spotting more and more frequently. I know that bleeding is an SE of Fareston, but I just wanted to check in with others who are taking it. Do you have bleeding while on Fareston?

    I've had a uterine biopsy and a sonogram and both came back just fine (whew!).

    I'd love to hear from others on Fareston! This bleeding makes me nervous...

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  • Headeast
    Headeast Member Posts: 619
    edited December 2015

    I stopped taking Fareston a while ago. Sorry I cannot help

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  • B123
    B123 Member Posts: 730
    edited June 2016

    would love to know if anyone is still taking Fareston and how long??


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  • VioletKali
    VioletKali Member Posts: 243
    edited June 2016

    I cannot take tamoxifen because I am unable to switch psychiatric meds. I have been taking Fareston for one and a half months, and I do not have any side effects.

    As a side note, my ovaries decided to begin working again in April, so I really feel good now. I missed my estrogen!

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  • VioletKali
    VioletKali Member Posts: 243
    edited June 2016

    I cannot take tamoxifen because I am unable to switch psychiatric meds. I have been taking Fareston for one and a half months, and I do not have any side effects.

    As a side note, my ovaries decided to begin working again in April, so I really feel good now. I missed my estrogen!

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  • YoungCiaoBella
    YoungCiaoBella Member Posts: 3
    edited July 2016

    I have been on fareston for about a year and feel dizzy all the time. Has anyone else experienced dizziness while on fareston?

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  • Tinyfrog
    Tinyfrog Member Posts: 91
    edited August 2017

    I am a CYP2D6 poor-intermediate metabolizer. I have taken several CYP2D6 drugs in the past with either no effect (pro-drugs) or serious side effects (active drugs), so I feel as though my experience validates this pharmacogenomics theory. I met with my MO, who is young and pretty much by the book when it comes to treatment. Every other patient (who has a different doctor) I've met in the waiting room with a lesser stage or less treatment (no chemo) has gotten a CT/PET scan, but I haven't because by the book early stagers are not suppose to get scans. My MO absolutely refused to prescribe fareston because of the black box warning of sudden death from QT Prolongation. Perhaps that is why it's not prescribed often in the US. My options according to her are tamoxifen, lupron + AI, or nothing. Right now the by the book guidelines are not putting any value into pharmacogenomics, so she expects if I take the tamoxifen it will work. I have doubts. She also dismissed Evista because it does not protect against DCIS. Strangely, she's ok with taking nothing over Evista. I'm not good with taking lupron with AI because I've heard that is really harsh. I'm stuck.

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  • crabbycamper
    crabbycamper Member Posts: 20
    edited August 2018

    Hi! Read the posts on Fareston. Any additional input/feedback on Fareston would be appreciated. Started tamoxifen Feb 3, 2015 but have had a very difficult time with SE: FATIGUE, headaches, insomnia, migratory joint pains, depression, abnormal uterine bleeding (resulting in D&C March 2018). Tamoxifen rendered me near non-functional. So my MO prescribed Fareston. Picked it up today but am now afraid to try it. Has anyone found Fareston to be worse than tamoxifen? Thanks!

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  • NWArtLady
    NWArtLady Member Posts: 360
    edited October 2019

    I’ve now been on Fareston (now Torimefene) for at least 4 years and am doing well on it. Fingers crossed!

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited December 2019

    I just started on toremifene. I’m premenopausal but I couldn’t tolerate tamoxifen (could only stay awake for about 9-10 hours at a time - struggled through many different brands, tried for about 9 months).

    I went off meds for about two months. I was finally feeling like a normal person again. My doc wanted me to try OS + AI next but I was balking. I did some research and found that even though it’s not FDA approved, there’s decent evidence that toremifene should be just as effective as tamoxifen for preventing recurrence in premenopausal women. OTOH, even though it is approved, there’s actually only two really good studies on OS+AI for premenopausal women, and there’s reason to think that higher BMIs (even 26+) have a substantial negative impact on efficacy.

    It took about three conversations with my oncologist - and her finally checking in with a senior oncologist who completely validated my understanding of the evidence about toremifene - but she finally agreed to let me try it. I’m only on my third day now - but tamoxifen was instantly devastating so it’s all already off to a better start. I’m really hopeful it will work out.

    It’s been a bit since I was active here but I came back hoping to read about others’ experiences

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