mestatic breast cancer is very frustrating

[Granny333]

onc told me to stop Ibrance because white cells to low. Go for blood work next week. I also have to decide whether to have a drain tube put in right lung.

[TammyCross]

I really don't like it when other people do this -- starting by saying they don't have an answer. Nevertheless, here go: I have not have the wbc problem but others have and can respond. What could happen is time off to let wbc (immune system) recover, then maybe start on a lower dose of Ibrance. You can go way down and it seems to be equally effective as targeted therapy.

In your bio, you did not say where your metastases are. Sounds like it must be lung? Or is it pleura?

Also, what else are you on besides Ibrance? Some sort of aromatase inhibitor? Basically something to reduce estrogen or block estrogen receptors. Presumably you are, and that may be the more important medication. If you are ER+, your cancer "feeds on" estrogen so blocking it can stop growth.

[Granny333 in reply to TammyCross]

Hi, I have it in the liver, pleura and am on arimadex. Nothing has been said about liver except there Is a mass

[TammyCross in reply to Granny333]

For my recent little met in pleura, arimidex cleaned it right up in a few months. When originally diagnosed, I had cancer in my pleura and many other places, and some fluid. I asked about a drain but they thought my shortness of breath was not due to the fluid from pleural met, but from mass in my chest. They advised against a drain in my case, said it is uncomfortable. At that point, I was on Ibrance and fulvestrant. One of them cleared up the pleural tumor and fluid rather quickly.

So -- are they telling you you should do a drain? How much fluid? Is the fluid making you really uncomfortable? It is one of those calls where I sometimes wish doctors would tell me what to do. Maybe you haven't been on treatment long enough to see if it will persist. Blood tests are not definitive; the scans are. Blood tests are helpful for some of us. Then it is symptoms you have to go on, until the next scan.

[Granny333 in reply to TammyCross]

I have been going in every two weeks and having my lung drained. I am going to hold off if I can till I decide

[Granny333 in reply to TammyCross]

I have gone 3 weeks now with no drain. That is good news for me

[Granny333 in reply to TammyCross]

Hi,, still having drainage and I don’t think I have been on the Ibrance/ arimidex  long enough to tell.

[Aprilfoolz1]

I agree! MBC is frustrating because cancer is complex and there is no treatment that works well for everyone . I also had to take an addl week off before starting a new cycle of Ibrance when I first started . Eventually , my oncologist reduced the Ibrance dose. It will be 3 years of Ibrance / fulvestrant for me in a couple of weeks . The dose reduction helped as my white count doesn't go too low or as low anymore . I haven't needed to skip a week for a couple of years now. It took a good 6 months for me to settle in to these meds which seems to be common. However, they have worked really well for me, which I am thankful . Hang in there !

I have not had a drain tube in my lung but I've heard fluid in a lung can be painful and draining the fluid can really help your comfort level .

[Granny333 in reply to Aprilfoolz1]

It really does help to have lung drained

[TammyCross in reply to Granny333]

In that case, why are you resisting doing it, or holding off? You have gone three weeks without a drain and you are pleased by that. Are you comfortable?

[SoulJourney]

Hello!

Just to add to your discussion with your oncologist...

I had neutrophil issues constantly, we did 2 reductions to try and resolve me needing an extra recovery week every cycle. Finally we switch to 5 days on and 2 days off. I went with that plan for over a year and was never delayed again. I which we had switched the cycle time before reducing because I was told once you go down you can't go back up. If the dosage keeps you stable go for a change in the type of cycle possibly. Hope the info is helpful.

Tammie

[Granny333 in reply to SoulJourney]

thanks, taking one day at a time

[Lakincaid]

I had similar wbc issues. After a couple of months of coming on and off, and dropping dosage, I finally landed on 75mg on the regular dosing schedule. My wbc barely makes the lower limit of acceptable but that is enough to keep going. Even with the inconsistent schedule and lower dosage scans have showed some improvement and other areas are stable. Best wishes and hope you can find a combo that works for you.

[Granny333 in reply to Lakincaid]

I appreciate your input, thanks

[Dragonfly2]

hello! I was in your shoes and had to take a two week pause between IBrance rounds…then I did some research and found that there is an alternative schedule for taking IBrance. I have posted several times and here’s a link to my update on how I was doing. healthunlocked.com/share-me...

Essentially you take IBrance for 5days, take two days off and then resume. It has been a game changer for me. And my ONC is so happy …she said she was going to recommend this for her other patients. Do take a look..it may resolve your issues with low WBC.

Good luck!😍

[Granny333 in reply to Dragonfly2]

I am going to ask Dr. Next visit about that, thank you

[lovnmycat]

if it’s any help, I was diagnosed MBC in June with Mets in bones. Started letroxole and Ibrance in august. After the second set of labs I had to take an extra week off ibrance due to low WBC count. That extra week off helped and the next month my labs were normal again and I have not had to take anymore time off. Also- during that time I also looked up what happens if WBC counts are consistently low and found a number of people have success going 5 days on ibrance then 2 days off. It can be stressful but know it can equal out and ibrance can still be effective with a lower dose and or with a different schedule. Stay strong. Praying for things to work out.

[Granny333 in reply to lovnmycat]

I finally am getting used to ups and downs

[dnamscg]

i had low wbc and am now on 75mg Ibrance and on a 2 week on 2 week offschedule and counts are fine. Keep trying any schedule. Ibrance has done wonders on my tumors and I started this in February this year. Also on faslodex. Have pleural effusion since the start and after having it drain 3 times in the first couple of months it is still there but I can breathe fine. Hang in there this all seems to take adjustments continuously.

[Granny333 in reply to dnamscg]

With all the replies I am feeling more at ease with this, thanks

[Granny333 in reply to dnamscg]

oh thank you beside that gives me such hope

[8576]

Glad you posted this. It is good info for those trying Ibrance. I tried to get my Ocologist to go to 5days/ two off about 2 years ago and he would have none of it. Now they do it all the time. And why not try it? The med is the same and it works. Glad they are accepting this now.

Cheers, June S.

[mariootsi]

I'm on Ibrance and Faslodex. My Ibrance schedule is 3 weeks on... 2 weeks off because of platelet and wbc issues.

[morty87]

I've been on Ibrance and Letrozole with great results for 5 years. There have been times that I too, have had to take an additional week off of Ibrance to allow counts to bounce back. (Currently I take 100mg.) I found this worrisome at first, but then did some additional homework and discovered that this is completely ok. Hang in there, I am confidant that your body may be able to acclimate the meds the longer you are on them. Good luck.

[Granny333 in reply to morty87]

Thanks for the encouragement.☺️

[Hotlantaphatz]

Girlfriend, this is so familiar to me. My prayer for you is to stay strong, ask questions. I have pleural effusion right lung cavity . I know how you feel

[Granny333 in reply to Hotlantaphatz]

Well I have been trying to stay strong and for the most part it is working so we will all stay strong together.

[sancarlos]

Hi, just got back from oncologist , and she wants me to take a sixth month break from Ibrance because of low WC. Makes me very nervous. I am going on 5 years on Ibrance and she thinks it’s taking its toll on my immune system. Still trying to get courage to do it!

[Ashtead2]

Only just read your questions so not sure how you are getting on with your pleural effusion. I have one in my left lung and had an indwelling pleural cather fitted in November. I have BCM in bones, lung and live. Nurses come to my home twice a week to drain the fluid. Once the site has healed it can be uncomfortable when the fluid is being drained but and discomfort passes quite quickly. I don't get breathless anymore and it has saved me many hospital trips.