Anyone NED on Letrozole only?

[OceanBreeze3]

Anyone NED on Letrozole only? For how long? Then did you go on Ibrance? I've been NED for almost 2 years - been off Ibrance more than I've been on. Thank you.

[Hidden]

Hi,

That is great news that you have been NED for two years! I hope that continues for you. I have had stable scan results since August 2018 and found out at the end of last year that I am in remission with "evidence of healing". My conventional treatment includes letrozole, zoladex and zometa. Ibrance was never an option for me and nor will it be in future. It seems that most ladies on here have been or are currently on ibrance, but some of us can still do well without it.

Sophie

[Hidden]

Hi, I was diagnosed with mets in right lung in 2017, and was put on Letrozole and Ibrance. I became NED in Dec 2018, but my med onc felt that I needed to stay on the Ibrance because she said that is what was keeping me NED. However when Covid started she took me off of the Ibrance (she did this with her patients that were stable in their disease). Four months later I had scans which showed that I was still NED, so she kept me off if it. I had scans in the beginning of this month (six months later) and they still show NED, so she recommends that I stay off until I have progression. She said that I could go back on the Ibrance if I have progression.

[OceanBreeze3 in reply to Hidden]

Thank you. My point exactly. Where is your treatment center?

[Hidden in reply to OceanBreeze3]

NY

[blms in reply to Hidden]

That’s what did.

[Maludagui in reply to Hidden]

Oh that is interesting 🤔

[jersey-jazz]

Letrozole has been my cancer treatment since 12/27/19. I was told to go on to Ibrance as well, but declined, adding to my files which have, "Patient refuses" all through them. Last week, as noted elsewhere on this web page, I had the good sized cancerous tumor removed from my liver. Since then, I have not taken any Letrozole and do not intend to take it unless or until another lesion grows somewhere in my body. In March, I'll have a scan.

[OceanBreeze3 in reply to jersey-jazz]

That is great!! Could you report back after your scans? I plan to talk to my Dr next time about going off Ibrance. Thank you!

[jersey-jazz in reply to OceanBreeze3]

Okedoke!

[blms]

Yes same with me fir 3 years but then spread to bones and liver. I do not regret my reduced dosage and was good with just letrozole for three years with NED and am now back on Ibrance plus shots for spread to liver snd bones .

[Godbeforme]

Ibrance made me ill with chest pains after only 4 mos. I have continued with the Letrozole for almost two years and have had tests showing no advancement of disease and some healing. I think Ibrance is B-A-D, but it's $10,000 a mo for 21 pills so sure, they're going to push it. By the way, my insurance paid for mine and I only had to pay $60, so my declining it had nothing to do with cost.

[123048 in reply to Godbeforme]

I agree, Ibrance made me really ill, I lasted a week on it.

[Godbeforme in reply to 123048]

I'm 67, I'm just going to keep taking the letrozole as long as I can and I all but fired my oncologist yesterday, as I said I'm going to do what I want when I want, my body, my choice! I believe we live as long as we're meant to and I am under no impression that I will live forever, so I am "healthy" and feel great most days, not going to let medicine ruin my quality of life, that's just me and I feel so free! I am NOT a guinea pig! I'll probably have a scan here and there maybe, but it will be my choice when I feel like I WANT something else from them. God bless you on your path, follow the peace of Jesus, He never leads us astray, but always in the path of life and that more abundantly. <3

[Godbeforme in reply to 123048]

I came back to add that if I were younger, I would probably fight this sucker with anything offered to me, especially thinking of the women who are young and battling this monster, I say fight it with everything you can throw at it, but let the Holy Spirit lead you in wisdom! I love you all and so sorry we are in this boat together, but you know it is different for EVERYONE, so read other's experience, but keep your heart open for instructions for your own. Especially where peace is concerned, I can tell you if the peace of God is on it, you are going the right direction!

[PJBinMI]

As a long termer with MBC, I think NED is often over rated. Being stable can be just as promising, and for some of us, even slower progression can be a good sign. NED doesn't really mean that cancer has gone away, it just means it is too small/too inactive to show up on scans. Getting a long time from a drug can be very promising. I will be celebrating the 17th anniversary of being diagnosed with bc on March 1, just a few days from now. I have had bone mets from the very beginning and while I was only labeled "NED" for a few months, I have not had symptoms from the bone mets and you would never guess that I have an advanced cancer if you saw me out and about. Letrozole plus Zometa for my bones were my first meds and I got almost five years of stability from the Letrozole. Next Faslodex worked for over 9 years. So here I am at 17 years and still on just third line treatment. I just don't want others to feel somehow that they are not doing well if they aren' t told that they are NED. Plus not all oncs use that term. We are each on our own path and hopefully can make peace with that.

[123048 in reply to PJBinMI]

Lovely to hear, gives me hope. Brain scan tomorrow, here’s hoping

[Mamacass67]

Hi, I was on Letrozole for 5yrs with clear scans & I'm now on ibrance & faslodex.

[Canchondo in reply to Mamacass67]

Did you go on Ibrance and Falodex because of reoccurrence

[Mamacass67 in reply to Canchondo]

Yes I did, have only been on it 3mths.

[Lulu4545]

Hi to all,What does NED actually mean when it comes to bone mets?

I was diagnosed de novo with nine bone mets on May 2020 with suvmax from 12 to 27.

In September 2020, pet scan report reported 3 bone Mets with suvmax around 3 or 4.

January 2021, radiologist just reported 2 bone mets suvmax 1,5 and wrote complete metabolic response.

Yet the bone mets are still there measuring around 5cm³ and 2,5 cm³.

Breast tumor went from 11 to 5,5 and has slighlty decreased. I will be having it removed.

When can you consider yourself NED ?

Thanks to all

Have a nice day

Lucie xxx

[OceanBreeze3 in reply to Lulu4545]

As PJBinMI mentioned, "NED doesn't really mean that cancer has gone away, it just means it is too small/too inactive to show up on scans." I was diagnosed de novo with 1 large bone met. I did not know I had breast cancer. Mammogram was clean (so they thought) and met in bone was ruled off as a cyst (no pain, good blood work, no symptoms). My scans, including a PET Scan have shown both tumors have shrunk to the point that they do not show up on a CT/Bone scan or a PET Scan. I guess thats when the Dr's considers you NED (no evidence of disease). Lynn

[Lulu4545]

Thanks a lot for the explanation. It seems clearer to me.

I thought Ned was when suvmax were below 2.

I believe that's more NEAD - no evidence of active disease.

I suppose I can't complain. I was in a bad way with 9 bone mets at diagnoses.

After 8 months treatment, bone mets are not active and breast tumor will be taken out.

It's not as bad... but for how long...

By the way, did they find your breast tumor?

Have a nice day

Lucie xxx

[OceanBreeze3 in reply to Lulu4545]

I like your description better - NEAD! Yes, they found it doing a ultrasound - I will never have a regular mammogram again. Take care!!

[Canchondo]

This is something I would like to do. I’m in the same boat. Please keep us updated. Wishing you the best

[Canchondo]

This is something I would like to do. I’m in the same boat. Please keep us updated. Wishing you the best

[OceanBreeze3]

So I just got back from Dana Farber - I asked my Oncologist about stopping Ibrance since I have been NED for almost 2 years. Of course he says he doesn't recommend it - telling me studies have shown it works best with Letrozole - giving me the example of the Letrozole alone could work for 2 years but once you add Ibrance with it, it could extend it out to 4 years. I asked about the toxicity of Ibrance in your body and he said its not toxic, pretty generic. LOL Really?? He also told me that Letrozole can only be given for 10 years. Not sure I agree with what he is saying with all of it - as a lot of you ladies have been on letrozole only for many years while NED. I hate taking medications I don't absolutely need. What to do........it's too bad that my mind goes to the "kick back" Dr's or institutions may receive for pushing these drugs and scaring the crap out of people.