What's your experience on Letrozol? My mets cleared. Normal?

Lillybee · November 2017

I posted this on the hormone therapy board but it was suggested that I post here. Hoping some of you can share their experiences.

I was diagnosed with Stage iv er/pr positive BC with mets to liver, spine and hips 10 months ago. I did 10 days of radiation on a tumor too close to my spinal cord and am currently on hormone therapy, which are the only conventional treatments I have done.. I started on Lupron and letrozol 7 months ago. My latest scan last week showed no visible cancer except for a very small amount in the breast tumor which has been steadily decreasing. My circulating tumor cells have been going down and are very close to normal. I am doing a ton of other alternative therapies so it is hard for me to know what is doing what. My onc does not know about my alternative therapies. (I tried to tell her once but she was not interested) She said that it is of course a very good result, that most often these hormone therapies halt growth rather than decrease, but that we shouldn't get too excited because 'we know it is there even if we can't see it and it will come back". Does anyone know if either or both of these drugs can kill the cancer and reverse the diagnosis? I got scanned somewhere other than my normal hospital for my last scan and the doctor could not believe that I had ever had the diagnosis I had. Though she could see dead tumors in bones, liver and lymph, she was very confused given diagnosis, the short time since staring treatment as well as the kind of treatment so that led me to wonder whether this is an atypical response. Hoping it is because then I can put more faith in the curative nature of some of the alternative therapies I have been doing.

Thanks in advance and love and healing to all of you!

exbrnxgrl · November 2017

Hi Lillybee,

At stage IV, we talk about NED (no evidence of disease) rather than being cured. I have gone for more than 6 years with NED status on Arimidex and now letrozole. I can't, and won't, say my bc is reversed or cured because that could change in a minute. I wish I could give you more positive news, but this is the ugly reality. There are some patients, roughly 1-2 %, who don't recur but it's not known why this happens.

I live a generally healthy lifestyle, but wouldn't say I do anything alternative . Enjoying everything in moderation makes me happy and happiness is my goal, whether I live ten more days or ten more years. I know you have a young child (I'm a mother, grandmother and first grade teacher) so our personal circumstances are quite different, but enjoy every moment with your child. Remain optimistic, but be realistic as well. There is no known cure for stage IV bc, but new treatments are being develope. Wishing you the best and hoping that you'll be one of the lucky ones .

PS: since you are using so alternative therapies as well as conventional, you will probably never know what has helped, but neither Lupron nor letrozole "reverse" bc. Lupron itself, is not a bc treatment but it's what allows you to take an aromatase inhibitor, like letrozole, if you are pre-menopausal

Heidihill · November 2017

Congrats on being NED! Definitely, the drugs can kill cancer cells. Ovarian suppression with Lupron stops the ovaries from producing estrogen and helps "starve" cancer cells this way. Letrozole inhibits the enzyme in your adrenal glands (aromatase) that produce estrogen. But some cancer cells develop resistance to the drugs and mets can recur/progress. I am also one of those lucky people who has not recurred (for almost 10 years now). With my doctors approval and support I did try a number of things over the years, like aspirin, metformin, broccoli sprouts, steam rooms, massage, melatonin, intermittent fasting and exercise. With exercise being the one constant all these years. I did have a lot of circulating tumor cells at some point early in my remission but last time they checked, they had disappeared, at least from the small sample of blood taken. So I've concluded that my immune system learned how to deal with those circulating tumor cells then or the cells all entered dormancy and settled somewhere where they can no longer be seen or be bothered by the drugs given to us. I don't think I've reversed my BC but I do think that I've reversed my immune system from one that had aged and become slack to a younger, more dynamic version of itself. In any case I'm still here and doing quite well. I hope you will have a similar story to tell.

Edited to add: I was on letrozole for 4.5 years.

Goodie16 · November 2017

Hi Lillybee,

I'm also at NED after a solitary brain met. Aside from surgery and radiation, by only treatment has been Arimidex. I started with Tamoxifen but struggled with SEs, so after failing ovarian suppression with Lupron, I had a complete hyster and ovary removal and began taking Armidex. I'm 3.5 years from initial diagnosis and 2.5 years from mets diagnosis.

My onc is supportive of various herbs/supplements. Under his direction, I take: Boswellia, Magnesium, Vitamin D, and Fish Oil. I believe these supplements help to manage SEs from the anti-hormonal drugs. I also eat healthy and exercise regularly.

Best of luck as you continue to navigate this journey.

Lillybee · November 2017

Thank you, ladies, so much for your information! This is really helpful and I have a much better understanding now. I feel very strong and healthy (was not always the case - my spine fractured from the tumors, and I was hospitalized with extreme pain) and I am so grateful to BE here feeling good, running around with my baby. I will take what I can get!

I would be curious to know how often mets clear on hormone therapy. My onc said most often it just stops them from growing. More research!

What's your experience on Letrozol? My mets cleared. Normal?

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