hormone suppressants

[JEE123]

I have been reading that hormone suppressant drugs are just as effective if taken every other day instead of daily. Have any of you got support from your doctor to do this? I'm really trying to take lowest effective dose and hoping to less side effects.

[Aprilfoolz1]

I don't believe this is considered "standard of care ". I would be careful doing this if you have er/pr + stage IV breast cancer . If you are having side effects that you believe are from the hormone suppressant drug , talk to your oncologist- there are a few different drugs to try (letrozole vs anastrozole for example ).

[JEE123 in reply to Aprilfoolz1]

That's my point. Time to take another look at standard of care and dosage. Several studies say this dose reduction works for people who are medication compliant.

[Aprilfoolz1 in reply to JEE123]

Not a risk I'm willing to take I'd try a different brand if I had bad side effects that I believe to be from the hormone suppressant drugs . Bestbird , Anne Loeser, who sadly passed away last year was a serious advocate for studying dosing. She published a guide to metastatic breast cancer that is very helpful . She may have some info for you in her book or publications .

[monkeygirl62]

I have seen dosage reduction by every other day as you stated but that's only used for "Patients with cirrhosis and severe hepatic dysfunction: Reduce dose by 50% (ie, 2.5 mg every other day)" reference.medscape.com/drug... . Do you have any of these issues? If you decide to deviate from standard of care let your oncologist know. So at least you have the follow up care and better yet a record in place if it really works or fails. There have been other trials in the past regarding differing dosages but the 2.5 mg was the dosage that was the most effective on tumors. I have lots of pain from letrozole when I'm off from my Ibrance and not so much when I'm on it. Somehow the two pair up (at least for me) nicely. The Ibrance somehow minimizes the stiff body aches and I feel better. I understand you want to reduce the side effects check the other ingredients in your hormone suppressor to see if there might be an ingredient or more that is causing misery. Also there are different manufacturers too and one may be better because of different inert ingredients used. Hugs and prayers for a resolution.

[Hazelgreen]

Hello Jee,

I'm a 78-years-old, independent type who is fully capable of reading the research studies my oncologist is too busy to read. In the interests of putting the smallest effective dose of ribociclib in my body, I simply watch that my cancer markers stay in the normal range as I reduce the number of pills I take.

Ribociclib is available in Canada in 200 mg pills. Over the past number of months, I have stopped taking any pills on the weekends to give my body a chance to recover. I keep in mind that some ribociclib remains in the body for days after it is ingested. Through the week, I now take either 2 or 3 pills each of the 5 days for a total of 12 ribociclib pills.

This all means that, instead of the 4200 mg of ribociclib and 17.5 mg of letrozole I once took in a week, I now ingest 2400 mg. of ribociclib and 12.5 mg of letrozole. My cancer markers remain in the normal range (under 30) so I assume that all is well. I may reduce both drugs even further in the months ahead.

Best Wishes, Cindy

[JEE123 in reply to Hazelgreen]

I just read your bio. Looks like you have a history of independent thought. I was diagnosed stage 4 de novo. I have decided not to take bisphosphonates as well. I don't think I need it and not worth the risks at this time.

[JEE123]

Good for you. I am at the moment having pretty bad joint pain in my hips at night making sleep difficult. I exercise, eat well, get massages etc. Taking Advil which doesn't seem to cut the pain. My joint pain has varied from non existent to traveling around from thumbs to knees and now settled in the hips. I hope that this too passes soon. I am so over all this excessive medication. I think it's prescribed daily as they think people will miss doses. I'm very careful about never missing a dose. Probably the reason most non metastic patients quit there medication is because of the side effects, when maybe a dose reduction would do the trick. I commend you for taking control of your treatment.

[Charlie_99]

I agree and support you in managing your body and your quality of life. Our bodies are different and individuals respond differently to different medications. So what dosage works for you may not be the same for others and likewise with severity of side effects. Not to mention, research is always limited to the individuals selected and sample size of the study group and it’s simply too expensive and impractical to extend to all age groups, weights and sizes, health, or pre-existing conditions. I’m eight years in with MBC with mets to lungs, bones and liver. I have always worked with my oncologist to manage side effects with dosages. I happen to be overly sensitive to medications so for me I tend to require lower dosages to manage the side effects while still getting results. I’ve achieved relatively slow progression and maintained a high quality of life throughout. Still riding my horses and barrel racing. It’s a balancing act and you just have to listen to your body. My oncologist has never had a problem with trying the lower dosages nor me taking breaks too whenever I needed to. He always supported maintaining quality of life. Have certainly dealt with other oncologists who are not flexible and much less inclined towards quality of life. Depends on the individual too and what they want but I wanted to live my fullest life. And have been very blessed with a supportive oncologist and have been able to do that by listening to my body, doing the lowest dosages and taking breaks as needed. This is your journey so you do what’s right for you.