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hi everyone

Liessie2014 profile image
19 Replies

I am feeling a bit worried , I have just had scan results , 2 of the MBC lung nodules have grown slightly , I am having another scan in 3 to 4 months, I am on Ibrance and Letrozole , and just wondered if any body else has experienced change in nodule size

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Liessie2014 profile image
Liessie2014
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19 Replies
Claireperth profile image
Claireperth

I was on those drugs which eventually stopped working. I don’t know your situation so it might not be the case with you. Keep a small part of your brain aware that you might in the future need to change drugs. It’s not the end of your world, just a different one 🌸

Liessie2014 profile image
Liessie2014 in reply to Claireperth

Hi Claireperth, I know what you mean , it did cross my mind about the meds, I like your positive thinking , Thankyou, , 🥰it’s a great way of accepting change if and when needed

Chamisa profile image
Chamisa

I was on Ibrance and fulvestrant and my lungs got better but my bones and liver got worse. Now I’m on Xeloda and it seems to have worked its magic… my back does not hurt anymore and my liver numbers have dipped into the normal range. I get scanned next week to find out for sure. Incidentally, after changing to week on/week off schedule due to a bit of hand-foot syndrome, I’m tolerating the capecitabine better than the Ibrance + fulvestrant.

Bettybuckets profile image
Bettybuckets in reply to Chamisa

that was my situation too. So grateful that there are other oral agents to try after the CDK4:6 stop working.

Liessie2014 profile image
Liessie2014 in reply to Chamisa

Hu Chamisa , I am glad to hear you are doing well on your meds , it’s great to hear your reply and positivity about changing meds I am learning a lot in this Forum , Thankyou

Liessie2014 profile image
Liessie2014 in reply to Chamisa

❤️

NPmary profile image
NPmary

Yes. Docs usually don't get concerned til they are 10 mms,some docs get concerned at a bigger size than that.

Liessie2014 profile image
Liessie2014 in reply to NPmary

hi NP Mary , Thankyou for your positive feedback , I didnt know about nodule being a concern at 10 mms , I have a better understanding now , I feel a lot better now, I think it’s always better once we know more about our health issues ❤️

Eliactida1955 profile image
Eliactida1955

did you just start this combo or have you been on it? Did your markers go up? Ibrance shrank mine for awhile so it worked. I wish you the best and there are new meds out there too🙏✝️

Liessie2014 profile image
Liessie2014 in reply to Eliactida1955

hi Eliactida , I have been on this combo for 2 yrs and 4 months , my oncologist said my markers were ok , I feel a lot better , now that I know that it could be, that I might have to go on different meds , it’s just a shock when they have been stable. And things change , Thankyou for your positive reply , I love being on this forum , I always feel better knowing we are all here for each other through our different problems ,❤️

Eliactida1955 profile image
Eliactida1955 in reply to Liessie2014

I’m here anytime and would love to hear what you say and treatment results. I go to m d Anderson April 3.💕

Liessie2014 profile image
Liessie2014 in reply to Eliactida1955

aww thankyou , I will let you know about any changes , I am getting a scan in 3 or 4 months, I am on same meds for now, good luck for April 3 ❤️

LDR1 profile image
LDR1 in reply to Liessie2014

Hi Liessie, wow, if you’ve been on Ibrance for 2 yrs 4 months that is great. My doctor told me the average time people stay on Ibrance is 18 months, before it stops working and you have to switch to a new medication. (So you are above average!) The way they know when it has stopped working is they see in the scan results that the is cancer growing again. So it may be that you’ve reached that point and perhaps they’re waiting to scan again just to be sure.

There are many options of other medications and most of us expect to go on a series of them, one by one, during our MBC journey. After Ibrance I was put on Verzenio (a very similar drug) but it was not effective so now I’m on Xeloda (capecetamine) which has been very effective so far. Wishing you the best as you and your doctor determine next steps!

Liessie2014 profile image
Liessie2014 in reply to LDR1

hi LDR1, Thankyou for your positive feedback , I am now realising that I may have to go on different meds , I feel a lot better now , I will know more after my next scan , at first everything seemed so gloomy when they first said things have changed, I am so lucky I have this Forum to talk to , ❤️

Eliactida1955 profile image
Eliactida1955

stay on ibrance as long as you can it’s great and I wish I didn’t get off . My markers at the time rose a bit but now they are higher and the onc told me that the cancer cells shed and markers go up. I wish you the best I was on ibrance 3 years.

Liessie2014 profile image
Liessie2014

thankyou Eliactida, I will stay in Ibrance as long I can , it’s all trial and error on this Journey ❤️

U2Rocks profile image
U2Rocks

My oncologist said that if Ibrance stops working, in other words my tumors change, she will switch to a new drug because there are many out there. There are times that after a few years a drug stops and she reassured me it can happen and not to worry. Prayers for you. ❤️

Liessie2014 profile image
Liessie2014 in reply to U2Rocks

Thankyou U2 Rocks , its good to know there are other drugs if Ibrance stops working I feel a lot more reassured , it’s great to have the support from everybody on this Forum ❤️

13plus profile image
13plus

It’s always good to get as much mileage out of each drug as possible. So a little growth, while not what we’re hoping for, is ok till a certain point. So questions for your doc now might be , let’s talk about what you think you will put me on next once this is clearly not working. That way you are prepared for the next step when/if it comes. Though these days there might be a new drug out between now and when you really need to change, that has happened to me! So I actualy have more choices now (another good reason to hold off switching until necessary!)

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