Fareston (toremifene) for MBC post-menopause
Are there any Stage IV ER++ ladies here on toremifene as hormonal therapy? I have an MO appt next week and am going to ask about switching from Arimidex.
My reasons for wanting to switch -
- I think I am developing carpal tunnel in my left hand, which can be a side effect of anastrozole. My pinky on that hand is now perpetually numb, I have trouble gripping things with that hand and sometimes my fingers freeze up completely and I have to massage them before I can bend them again. I have been massaging them which helped a little with the stiffening but the numbness has not gone away. I also have bone degeneration in the left thumb which has been confirmed with an X-ray. This is now going on 2 years of the thumb symptoms.
- The weight gain around my middle and the inability to lose even when counting calories strictly and increasing my walking. I am now exercising at a studio with a coach three times a week and only lost 4 pounds in 2 months. My logic for hoping a SERM might help with this is that it will allow some estrogen to work in my body other than on the estrogen receptors in my breast. And toremifene seems to have a better side effect profile than tamoxifen.
- Insulin resistance that I’ve developed might abate if I get off of AIs.
- toremifene Is actually beneficial to the bones, while AIs can contribute to osteoporosis. My last DEXAscan was fine but I am due for one again soon. With bone Mets diagnosis I don’t need any further degeneration of my bones.
The only drawbacks I can see is - I still have my reproductive organs and this drug can cause reproductive cancer and I am on HCTZ medication for blood pressure, which might be a contraindication. But I am also going to talk to my PCP about dropping the HCTZ from my meds for other reasons so…that might work out.
Ironic that the FDA approval for this drug is precisely for post menopausal MBC patients yet I see hardly any discussion on this board that shows pts like us are being prescribed this drug.
So, if you are MBC and your doctor prescribed Fareston/toremifene for you, please share your experience. But I put this in the “open to all” topic so that anyone who is not MBC but has experience with this drug and wants to comment, can do so. Thank you all in advance.
Comments
-
Hi, @olma61! If you go to the Search function and type in "Fareston toremifene" as your search term, you'll see every time these words have been mentioned in a post, and you can click on the link to see the post. Learn here How to use search on the discussion forums.
Hope this helps!
The Mods
0 -
Thank you mods but I had already done that and I did not see anyone with Stage IV MBC on Fareston, that was why I asked here. But I did read the BCO article which was helpful and I am seeing my MO this week so I guess it’s fine if I don’t get any more input.
1 -
Well MO didnt’ agree to changing my medication now. Told me to try Voltaren cream or a splint. I’ll have to see what the next oncologist says when I move. (Soon)
0 -
Just came here to update - the “next oncologist” agreed to me going on Fareston! She actually gave Tamoxifen as an option when I brought up my side effects so I said how about toremifene? and she agreed with me!
It did require a prior authorization and it’s much more expensive than good old anastrazole…but the side effects are really dragging me down so I am willing to try. It’s also on back order at the pharmacy so I have not been able to start yet, still taking my anastrazole faithfully though.
I’ve been on another “holiday” from PHESGO due to my move. Four months with no H/P as of now.
I’ll update when I start toremifene and get my next scan.
Edited to add: I did get off the HCTZ medication in my High Blood Pressure regimen, first. Thankfully, that primary care physician also agreed with my objectives. Doctors in my new location seem to be much more on my wavelength 😁 And the muscle spasms have greatly lessened since doing that, so it may have been the HCTZ more than the anastrazole contributing to that problem.
0 -
I thought I'd update my experience with fareston (toremifene) - so I've been on it approximately 8 months now and Ive started getting dizzy spells which is a listed side effect. my BP medication also lists dizziness as a possible side effect but I've been on that one much longer and never had this.
of course there's always a concern about brain mets, too.
Im going to try using dramamine for now, but I will mention the dizzy spells to my medical team as well. using dramamine was suggested to me when I was going to start Wellbutrin, which I never went through with, so maybe it will help.
Ironic that Ive joined a study to pause monoclonal antibody therapy when Ive always said the worst side effects Ive experienced were not from chemo or Herceptin, but from the endocrine therapy!
Some of my SE's that I attributed to anastrozole are gone but the dizziness, if it continues, is going to impact my daily functioning more than the AI side effects did..
Always between a rock and a hard place with this disease but Im still grateful for the years of active life these drugs are giving me.
1 -
A footnote to my March 2nd post - I’m starting to suspect this may be an issue with which manufacturer the pills come from. I know with anastrozole there are differences in SE’s for some people depending on mfr and with generic vs brand name.
Initially, I was getting my script filled at a local pharmacy. The branding on the package said ‘RISING’. Then I switched to mail order pharmacy and the pills come from a different mfr. That is when I started feeling dizzy. So I still have a bottle of “RISING” which I switched back to and haven’t experienced dizziness again. I am also taking them before bed now, without Dramamine, so that I won’t be awake when I start metabolizing the medication.
I ‘ll see how it goes. I really like this medication so far so I hope it will remain tolerable.
0
