2nd line of treatment : Hi ladies. Hope... - SHARE Metastatic ...

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2nd line of treatment

marianne88 profile image
17 Replies

Hi ladies. Hope all is going well with all of you!!!! I’m just wondering after ibrance and faslodex stopped working what did your doctors suggest or what med did they put you on. I have been on those two for. 5 years but I think it’s coming to the end so I am just curious what the next med is in my future. Thanks Marianne

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17 Replies
MyMiracle13 profile image
MyMiracle13

You are so blessed to have been on Ibrance and Faslodex for 5 years. My 2nd line of treatment was Xeloda (Capecetabine)

Bettybuckets profile image
Bettybuckets in reply to MyMiracle13

How long have you been on and how likely to be on for long time? Xeloda up next for me

MyMiracle13 profile image
MyMiracle13 in reply to Bettybuckets

I was on Xeloda for 22 months metronomic dosing so no rest day for me. But my latest scan showed progression so just this month, I started on Olaparib (Lynparza)

Nocillo profile image
Nocillo

My first line was Anastrozole and Fulvestrant and that lasted 5 1/2 years. Ibrance and Tamoxifen are my second line. I’ve been on them for 18 months. I asked my oncologist about a third line and he named many. There ought to be something out there for you!

Ntash01 profile image
Ntash01

I was originally on ibrance for 17 months, fulvestrant 7 months and now on Capeceptibine - currently on my 3rd cycle.

So far so good on Cape, minor side effects that aren’t bothersome as yet, scan next month which I’m actually looking forward

to!

All the best

Nx

neosha profile image
neosha

Thanks for raising the issue. There are many of us out there who are wondering. I am on both ibrance and fulvestrant. My doctor said if that does not work, we will try something else. Please let us know how things work out.

marianne88 profile image
marianne88

Thanks everyone 💕

AvidBooklover profile image
AvidBooklover

Have you done the mapping test for what would work best for you?

mariootsi profile image
mariootsi

Apparently we have many choices after Ibrance. I hope there is an efficient drug with few side effects. Your onc will know what will be appropriate for you.

TammyCross profile image
TammyCross

I was on fulvestrant and Ibrance for 2 years before it developed resistance, too short a time! I then went on an oral SERD in a clinical trial for a year. I am on my third, but it is the second on my oncologist's list: Verzenio and Arimidex (originally Letrozole, but Arimidex is more tolerable for me. My oncologist has a pretty short list. One more after this, then chemo. Unless I can get into a new clinical trial. This one has to fail before I am eligible!

Fiercefighter13 profile image
Fiercefighter13

I was on Ibrance/Letrozole for almost 3 years. Now with markers going up and playing hide and seek, progression showed up in my stomach. My doctor first switched me to Verzenio three months ago, waited 3 months and starting Fulvestrant shots on Friday. Ibrance was harder to tolerate due to the low WBC and RBC counts for me, but I'm doing super good with Verzenio, blood work is back to normal and I feel great on it, no side effects. We shall see how the Fulvestrant works out (I'm phobic about shots in the hip). My doctor's list of nexts for me include Piqray, Xeloda, Exemastane, SERDs (whenever they are finally approved), any new trials, then chemo. I'm not sure about the chemo though.......it's something I have to give thought to but I have time (I hope). Depending on what mutations you may have, you may qualify for Keytruda and a few other immune therapeutics. The only one I have is the PIK13, therefore, Piqray is on my list. Sometimes doctors first try flipping the meds like they are doing with me......they may put you on Verzenio/Letrozole, since they both work a little differently than Ibrance/Fulvestrant. I wish you well, there are so many meds now, I hope you find a perfect fit that works for many years! Take care!

Gingerann1 profile image
Gingerann1 in reply to Fiercefighter13

Hi Fiercefighter! I have had 21 Months of Fulvestrant shots so 42 shots. It does get easier but I have a few tips that work for me. I never look at those needles. I have both done at the same time so my nurse goes and finds another nurse to join the party! I have learned that the area on the sides a little higher is less painful than any area towards the back. I lean forward on my arms on the elevated chair to take the weight off my legs. I pick something to talk about like my vacation, a holiday, my granddaughter (favorite subject) with the nurses when the injections start to get my mind off since they slowly have to push the meds in as they are thick and oily so not like a vaccine (about 2 minutes). After the shots my hip areas are usually only sore at night when I roll on them while turning in my sleep for a night or two. Laying on a warm heating pad definitely helps and I take a Tylenol before going to bed for the first two nights. Hope this helps in some way and you get years out of your treatment plan!

Fiercefighter13 profile image
Fiercefighter13 in reply to Gingerann1

Hi Gingerann1!! Thank you for all the wonderful advice, I think I will be following your lead on this one. Many people posted similar tricks, so I think this will be the plan for me! Hearing positive stories and advice like yours, gives me a huge sigh of relief in going forward. Thank you again for great advice! Take good care!

Gingerann1 profile image
Gingerann1 in reply to Fiercefighter13

You’ve got this!

Georgiamjb profile image
Georgiamjb

I was on Ibrance and Faslodex for 12 months and now on Xeloda. It's been 7 months and it's working well so far!

Shelly1009 profile image
Shelly1009

I went to Xeloda after Ibrance/Faslodex. Not bad as far as side effects go. I had a pretty severe case of Hand&Foot syndrome but I'll take that over diarrhea any day!! Good luck ❤️

Gingerann1 profile image
Gingerann1

Hi Marianne! I have been on my first line treatment of Ibrance and Fulvestrant for 21 months which has gotten me to NED. I will stay on them until they stop working which is hopefully a long while from now. Onc mentioned that when that happens he will switch me to Verzenio, another CDK 4 & 6 inhibitor as second line (did not mention continuing Faslodex but may include) and zap whatever progression is shown. He actually called it between 1st and second line, so 1.5! Seems he wants to exhaust that particular type of targeted therapy before moving on to another. I’m sure others on this message board have Oncs who have taken other approaches and I will be interested in reading those as well so I may know what’s coming down the pike. Hopefully it is a CURE!!!

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