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Fareston/Toremifene

judyfams
judyfams Member Posts: 11

I am post menopausal and in addition to BC, I also have Rheumatoid Arthritis.  I've had the arthritis for over 30 years.  The RA is under control so I did not want to go on any of the aromatase inhibitors due to the side effects of joint and muscle pain.  My oncologist was really pushing one of the AI's.  We had many discussions and I have been on Fareston for almost one month and feel fine.

Fareston is a SERM like Tamoixifen that is mainly used for metastatic breast cancer which I do not have.  My BC was IDC, stage 1 - lumpectomy, chemo and radiation.  Fareston is an antiestrogen, that is also known as Tamoxifen for post menopausal women.  I had a hysterectomy so I do not have to worry about the possibility of uterine cancer.  

Is anybody else using Fareston also called Toremifene for early stage hormone positive breast cancer? And if so what have your experiences been with this drug? 

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Comments

  • Glad2BHere
    Glad2BHere Member Posts: 9
    edited April 2011

    Judyfams  My Oncologist just switched me to Fareston a few days ago.  I ended up with a blood clot on Tamoxifen and was having to take blood thinners.  My blood clot has finally cleared up and I can finally have reconstruction done.  My plan was to take the Cumiden along with Tamoxifen for another 4 years,so the surgery thing was going to be tricky.  I just had my 3 month check-up and my doctor switched me to the Fareston -no more cumiden (blood thinnners)  Yeah!!!! He said results are as good as Tamoxifen and will probably help me with some of my hormonal issues.  He still considers me pre menopausal even though I have had chemopause for a year and a half. I don't have a metastis either. (konock on wood). I have only been taking it for 2 days so far.  Had some night sweats last night, but besides that, no other side effects.  Keep in touch and let me know how you are tolerating it too.

  • every8thwoman
    every8thwoman Member Posts: 14
    edited April 2011

    Judyfams,

    I too have been on Fareston going on 2 years.  I am pre-menopausal and was a poor metabolizer of Tamoxifen.  I found the SE of Fareston to be much less than Tamoxifen altho I'm still struggling to drop the weight I put on while I was initially put on Tamox.  I am non-metastatic (knock wood too).   Please see the other posts I have on Fareston.  There are not many women on these boards taking Fareston (premenopausally) but I think the numbers are growing.   I am also IDC stage 1, no nodes involved ER+/PR+, Her2 -.  You and Glad2Be Here can PM me anytime. 

  • judyfams
    judyfams Member Posts: 11
    edited April 2011

    Ladies,

    Thanks for getting back to me about Fareston.  Thus far I have had no bad side effects.  I thought it might be making me extra tired in the afternoons as I felt more tired than before.  So I switched the time I take it from with breakfast to taking it with dinner.  Will let you know how that works out. 

    I don't know why more women aren't told about Fareston.  I think it might have to do with 2 things first being it is a newer drug (1995) and does not have 30 years of statistics behind it and secondly the drug companies are pushing the AI's for post menopausal women.  I asked my onco for some samples - and lo and behold he had them all except Fareston!

    That is why we women must educate ourselves about what kind of treatments we want - instead of being led by what the pharmecutical companies want to push on us.

    Let's all keep in touch to follow this "new" drug!

    Judy

    I

  • every8thwoman
    every8thwoman Member Posts: 14
    edited April 2011

    bump

  • mokobear
    mokobear Member Posts: 1
    edited May 2011

    Hello ladies,

    I have been on Fareston for almost a month. I'm pre-menopausal, non-metastatic, and was a Stage 2B,  who was switched to Fareston (by my Onc.) because I was an intermediate metabolizer with a genetic defect that made me unable to metabolize Tamoxifen. I was on Tamoxifen for about 2-1/2 months before I was taken off. I didn't have any noticeable side effects with it (just occasional hot flashes). A few months had passed before I switched over to Fareston. Now with Fareston, I'm experiencing: knee pain (I struggle to squat down/bend at the knees & have to grab onto things to pull myself up). I'm 40 years old and am fairly active and have never had this issue before. Just yesterday, I noticed a pain in right inner ear as well as rash on my left upper arm/shoulder area. Today's new SE of the day are the return of my hot flashes. I also have trouble sleeping. I find myself waking up in the middle of the night and unable to go back to sleep for 1 or 2 hours or more. I tried switching my dosage time from night time to mornings in hopes that would help.... it didn't. It just made it more complicated remembering to take it in the morning. I'd forget, and end up taking it in the afternoon when I remembered, so I switched back to taking it at bedtime.

    Has anyone experienced similar SE's? And if so, do they eventually subside? Or does anyone have any suggestions to combat the SE's?  I called a left a message with my doctor's office today. Hopefuly I'll hear from them tomorrow.

  • judyfams
    judyfams Member Posts: 11
    edited May 2011

    I have had no side effects from Fareston.  I take my pill in the PM as soon as I finish dinner.  My onco said it didn't matter if you take it on a full or empty stomach, but Ithink in that case it is always wise to take meds after you have food in your stomach.  You might want to try that too.

    My cousin is on Tamoxifen and had side effects from that so her onco told her to break the pill in half and take each half one in the AM and one in the PM, and she said her side effects have just about gone away.  Just thought I'd pass that on to you to as your onco.

    Judy

  • husband11
    husband11 Member Posts: 1,287
    edited May 2011

    Here's a clinical trial that showed equivalent efficacy for tamoxifen vs fareston

    http://www.ncbi.nlm.nih.gov/pubmed/20209619

    Another two showing similar efficacy and rate of side effects:

    http://www.ncbi.nlm.nih.gov/pubmed/11032589

    http://www.ncbi.nlm.nih.gov/pubmed/15550579

    A meta-analysis published in 2011

    http://www.ncbi.nlm.nih.gov/pubmed/21553116

  • every8thwoman
    every8thwoman Member Posts: 14
    edited May 2011

    Thank you Timothy for the references.  Read them all with great interest.

  • Sable43
    Sable43 Member Posts: 7
    edited May 2011

    I've been on Fareston for several months. At first, took some getting used to with the dizziness and nausea; headaches but those symptoms eventually subsided. I couldn't tolerate using Tamoxifen due to the excruciating leg pain I was having. I was diagnosed with Stage 2 BC almost 2 years ago. So far so good. Aside from the hot flashes I seem to be doing alright though I continue to have periods intermittently.

  • judyfams
    judyfams Member Posts: 11
    edited May 2011

    Does anybody know why Fareston seems to be such a well kept secret?  My onco had samples of tamoxifen, and the AI's but not Fareston!

    When I list that as a medication my breast surgeon never heard of it, my rad. onco also never heard of it and even my chemo nurse never heard of it!   I know Fareston has been around since 1995, but how come nobody has even heard of it???????

    Is it the drug company - by the way who does manufacture it?  I have recommended it to other women who could not tolerate arimidex, and one onco had no problem prescribing it, the other onco would not even discuss it with her.

    Why the huge push for the AI's - when one gives us terrible side effects we are told to try it for 3 mos . and then they keep switching to the other AI's.

     Does anybody know what the real story is with Fareston?  Is it just that the manufacturer's of the AI's have more and better salesman?

    Judy

  • sammolisa
    sammolisa Member Posts: 8
    edited June 2011

    Doc is starting me on Fareston today - he was going to put me on Tamoxifen until the pharmacist told him it contradicts my Cymbalta.   Anybody get their periods back while on Fareston?

  • Cyborg
    Cyborg Member Posts: 192
    edited March 2012

    Hi. I am noticing shoulder discomfort/ low grade pain, hip and knee stiffness/ low grade pain. It's kind of worrying me cause I want to pay attention to any changes in bones.

  • judyfams
    judyfams Member Posts: 11
    edited March 2012

    The joint pain you describe is mostly associated with taking the aromatase inhibitors, but could possibly be a side effect of the Fareston.  I would call the oncologist and speak with him.

    Judy

  • comingtoterms
    comingtoterms Member Posts: 52
    edited March 2012

    I am jumping on the Fareston bandwagon, here. I posted in another thread, as well. Why is this med given to premenopausal women when it clearly states on the patient statement that it is only approved for use in postmenopausal women?? The total cost for 30 pills is almost $800.00. That may be why there are NO samples available in doctor's offices. I have a small co-pay, but that sum is RIDICULOUS!! I had my period while on Tamox. and continue to get it at almost 52. Tamox made my periods so heavy I was almost hemmoraging. That's why Fareston was recommended. I don't sleep already and a side effect is difficulty sleeping..... I will not take this until I see my Onc. on the 12th. I am being seen at a major cancer hospital, so I have to believe my Onc. is not being swayed by anything other than assuring my good health as much as he can. Any new info would be greatly appreciated. Tammy

  • dailyrx
    dailyrx Member Posts: 1
    edited December 2012

    If you need more information on Fareston, you could start with a pharmacist's description of how it works here: http://www.rxwiki.com/fareston

  • B123
    B123 Member Posts: 239
    edited June 2014

    hello.. Hope all of you are still here on this subject?  I was on tamoxifen, didn't like it so went to Fareston but was to expensive ( but lived it, no SE) so my onc put me on arimidex which was fine all along but now at 44 found out I have osteoporosis in low back/hip!! So now to have to do an infusion or a pill form? This is unreal?!

    I want to go back to Fareston but is it true that it's not as good as tamoxifen? 

    Please let me know your experiences and thoughts.. Thank you!!

  • Headeast
    Headeast Member Posts: 393
    edited June 2014

    B123, there are links above with research showing that Fareston has similar outcome than Tamoxifen.

    I am reading about Fareston since I stopped Tamoxifen due to the extreme fatigue and brain fog  i had.

    Did you suffer from Fatigue with Fareston? With Tamox? I want to take something, but I am very worried about not being able to work. My job requires a lot of brain power. 

  • B123
    B123 Member Posts: 239
    edited June 2014

    head east, I hated tamoxifen, it was the worst for me.. I was more moody then I was fatigued. Fatigue was not so much a problem.  You really should go on something soon to be safe.  I am on arimidex but am looking to get off due to so much bone loss.  I loved how Fareston made me feel, but insurance at that time was terrible. Now I would pay $40/mo, not so bad. I just want to make sure that it's just as effective. I know it's only been around for 20ish years so they don't know long term effects like they do the others.

    Have you learned anything more about it?

  • Headeast
    Headeast Member Posts: 393
    edited July 2014

    B123, I haven't learned enough about it, just that results are very similar to Tamox.

    I know it is better for me to take something. The MO told me to not to take anything for two weeks, which was yesterday, until he calls me and tells me to take Anastrazole or something else.

    I have emailed him today asking him about Fareston. I will let you know what he thinks.

    I did get information from my doctor in Switzerland and he told me that my risk of recurrence of the same type of cancer goes from 10% down to 5%. He wasn't concerned at all that I stopped the medication. 

    That is a relieve for me amd will be able to wait for more days and get the medicine that will fit my system the best.

  • B123
    B123 Member Posts: 239
    edited July 2014


    Agreed Headeast, you need to do what is best and thank god your low reoccurrence!  Please let me know what you find out, I would love to switch over.  I think quality of life is just as important, and I cant believe all these drugs that help you also destroy something else in you.. its amazing and frustrating!!

  • Headeast
    Headeast Member Posts: 393
    edited July 2014

    B123, today I received an email back from my MO and he told me not to fill the prescription for Anastrazole, that he will call the drugstore for Fareston instead.

    I am really happy  i have found this website. Without it I would be still suffering and with no idea that there are other options out there!

  • B123
    B123 Member Posts: 239
    edited July 2014

    wow that was so quick and simple! Did he give his thoughts on it? 

  • novagirl
    novagirl Member Posts: 82
    edited July 2014

    Hi guys, I have been on fareston/toremifene for about two weeks now. Tamoxifen was horrible for me too. I wasn't anticipating any symptoms with tamoxifen so it threw me for a loop. I do feel better and I am surprised because it is a SERM too so I assumed I would also feel awful on this. 

  • B123
    B123 Member Posts: 239
    edited July 2014

    nova girl, Fareston works great doesn't it?! I'm just wondering about long term? It's about 25 years going now for the drug so seems good results but I think that's where the doctors are concerned?? They don't know it as well as tamoxifen or the AI s? 

    I prefer Fareston, no bone loss and you feel great!! It is a SERM? I think in Europe it's used a lot more then here..

  • Headeast
    Headeast Member Posts: 393
    edited July 2014

    B123, yes, I think I helped my MO in making the decision and he knows  i want to take something but without those bad SE.

    I emailed him again today asking him if I can take it along with my diuretic or if he needs to change the prescription for the diuretic. It has a bad interaction and I confirmed it with the pharmacist. My doctor in Switzerland is the one that caught that interaction when  i emailed him about the change in medication.

    We have to be on top of everything and always ask for second opinions.

  • Headeast
    Headeast Member Posts: 393
    edited July 2014

    oh, and forgot to mention that my copay for Fateston was... $0.00! Yay!

  • B123
    B123 Member Posts: 239
    edited July 2014

    headeast, really your co pay is 0$!? So lucky!! Originally I paid $150/mo so I went off of it, now if I go back it's $40/mo much better, but I would prefer your cost!! Lol.. So your mo had no problems with prescribing it to you? I checked the date on tamoxifen and some other serms and it's around the same dates that Fareston started so I'm not sure why the hesitation or why most people are not on it?

  • Headeast
    Headeast Member Posts: 393
    edited July 2014

    B123, believe it or not, my doctors are not familiar with Fareston, my MO prescribed it but I guess he didn't   look up at the issues with hydrochlorothiazide, which is why  i am not taking it yet. I have asked other doctors about Fareston and they don't know it either. 

    I guess they just get used to prescribing one (Tamoxifen) and don't get updated.

    I told you my doctor in Switzerland is the one that caught the interaction with both medicines, not the one here. I still like my doctors here though!

  • novagirl
    novagirl Member Posts: 82
    edited July 2014

    B123- so far so good for me. I still get warm flashes all the time but I feel so much better on it emotionally. I didn't realize it didn't have the bone loss issue. My MO said the drug is not approved for early premenopausal or postmenopausal BC women only for metastatic patients. He said it worked just as well but just didn't have the indications from our FDA. He did say it was used frequently in Europe and that it interfered with fewer common medications like tamoxifen does. I'm still on my samples so I'm not sure what it will cost me. Headeast-$0 copay sounds great to me!!

  • Headeast
    Headeast Member Posts: 393
    edited July 2014

    ok, my MO answered and told me to take it with the Hydrochlorothiazide, that it might raise my heart beats but that is about it. To call for an appointment three weeks after taking the first Fareston pill for blood work amd an EKG. 

    I still, havent started taking it. Scared of taking it, actually. I am still strugling with the fatigue from Tamoxifen! I need my energy back!