Faslodex and Ibrance might be failing, what next?

starbrightlyshines

So I wasn't prepared to hear this....my Dr is thinking that this combo is failing after only 7 months! My tumor makers are continuing to rise. I had a CT scan last week that didn't show anything helpful, so I will have a PET at the end of the month. It's strange because overall I feel better than I have felt in months. I was diagnosed stage IV from the beginning, multiple mets to bones, and GI tract.  I think the GI stuff only shows up on the PET, so that is scaring me a bit.  Here is a list of what I have tried"

Gemzar, Tamoxifen, Femara, Aromasin/Affinitor, and now Faslodex/Ibrance.

My Dr is talking about either going to a trial, or chemotherapy.  Both scare me.....I'm afraid in the trail that I would get the placebo and my cancer would quickly progress.  Chemo scares me because it is so harsh, and if I go the IV route I will have to get a port and really be tied down with infusion schedules.

I am 52 with 5 children, 2 are in college and I have a 17,14 and 8 year old at home.  I've been in treatment for 4 1/2 years which is great, but I really want to be around to see my children grow up. Its just heartbreaking to think about.

Any ideas, advice, encouraging stories etc would really help. I am trying to not let this get me down, I knew treating this disease was a "marathon not a sprint" so I just want to get as much time out of each treatment as possible.

Thank you!

Tina2

Star,

Just wanted to let you know that I've read your post and feel for you.

I have no advice or input on the clinical side, but hope you get your bearings soon.

Yes, do keep in mind that treatment is a marathon, not a sprint. Your fear of a clinical trial is understandable. As far as chemo is concerned, I have several friends who are on chemo. They have ports and tell me they are not to be dreaded, but a helpful convenience that prevents discomfort and pain.

Wishing you well,

Tina

dlb823

Star, I just started the oral chemo Xeloda about 6 weeks ago after 19 mos. on Faslodex + Ibrance. So far it's not too bad for SEs, the major one of which is sore feet (hand and foot syndrome or HFS). My TMs had gone down at first on Faslodex + Ibrance, but then started climbing really wildly (like 100 or more pts. per month) for several months before my onc decided to make a switch. I do know from reading the original trials literature that some patients did not see lower TMs and improved scans for 5 or 6 months, so perhaps you will still see those TMs turnaround, especially if the upward trend isn't dramatic.

Good luck with the PET! Keep us posted. Deanna

pajim

Star, I'm sorry the treatment is failing. I too was on Faslodex and Ibrance and it was failing [after 4+ years on Faslodex]. My MO offered the following options:

• Aromasin/Afinitor (you've already done this)
• A clinical trial of A/A plus Ibrance (there's also one with A/A and ribociclib)
• Xeloda
• Stick with Faslodex and Ibrance for a while longer -- basically until the scans get a lot worse.
• Do nothing

I know the last is a scary thought, but he always offers.

First thing you should know is there is never a 'no treatment' arm in a cancer trial. The arms are normally standard of care plus either a placebo or a new medicine. So don't fear trials, but if one is offered you should ask lots of questions and make sure they explain things to your satisfaction. Trials can give you access to investigational drugs but are no guarantee.

Another thing to realize is that when docs give 'chemo' it's not at the same doses that the early stage ladies get. The other thing to think about is that just because you agree to start a treatment, that doesn't mean you've agreed to have the second or third dose. YOU get to decide which meds you are willing to try or tolerate. If you hate how it feels, quit and move on. But yes, you get tied to the cancer center and that's definite ugh.

I chose the trial and am in my third month. The TMs continue to rise but the CT scan looks the same. We'll see. My second choice would have been to hang on with Fas/Palbo for a while. Maybe your PET will look fine and you can also continue for a while.

It's scary to have to change treatment. But. There are a lot of treatments yet to try. Take a look at the list on the main BCO site. If each one of them works for a year, you'll see your grandchildren.

Hang in there and many hugs to you.

seagan

I lasted on that combo for about the same length of time and was just as disappointed. And surprised - I initially had a great, quick response.

I'm now on Xeloda and find overall it's very doable. I too was very nervous about its being chemo, but have pretty much adjusted (still wish I didn't have to take it, but that's part of an overall wish I didn't have MBC!). Dosage can be adjusted so the SEs don't get too bad. For me the biggest one has been fatigue, and mild hand-foot stuff that only started after about 2 months in and is more strange than it is difficult.

Best wishes in your decision-making. It's tough to know which route to take, but good that there are multiple options too. Or so I tell myself..

starbrightlyshines

Hi Ladies. thank you all for responding!

My husband and I just got back from a two week anniversary trip to the island of Moorea. We celebrated 26 years of marriage and had a wonderful time lying on the beach, snorkeling, and just enjoying life together in the sun. It has been a long winter here in Eastern Washington.

My insurance finally ok'd a PET scan last week and the results are no active cancer shown. Good, except my tumor markers have almost doubled and my Dr believes the cancer is just brewing and faslodex/ibrance is failing.  He gave me 2 options.

!. A new drug just approved recently called Ribociclib

2. A trial which he is looking into, but he feel like I am a good candidate for.

Right now I am continuing on with faslodex/ibrance since I feel pretty good, and I am encouraged by my PET (even though I can tell my Dr is not). I am thankful to have more options than I thought I had after my last Dr visit. I'm also thinking maybe I need to get serious about changing my diet and trying to make exercise a priority. I have all 5 children home this summer (2 college age plus my 3 at home) so I am looking forward to making this a great summer regardless

Kimchee

Starbrightlyshines  comment makes feel better , my tumor markers keep climbing with each blood test . I feel great but very scared. Just had ctscan  last week and tomorrow I will find out what's going on . I want to fight and live ,I know there will be something out there for me for all of us ! I truly believe this . Prayers to all . And please talk me down I'm stressing out! Please God help us

DJNC

Hi Kimchee,

It is very scary. I hate that we all have to go through these things. I was doing well on zolodex/arimidex for almost 5 years, when I noticed some itchy bumps on my scalp. Turns out they were positive for the same type of breast cancer cells! I had my ovaries and Fallopian tubes removed 9/13/17, and they both had breast cancer tumors on them (I had no idea), and some fluid and spots on abdominal wall lining that were also positive for MBC, all the same type I had since the beginning. I started on Faslodex and Ibrance on Monday, 9/18/17. How long have people noticed before any changes occur?

Prayers to everyone

kayrnic

I just failed on ibrance/faslodex and was given the choice of afinitor/aromasin or Xeloda. I chose afinitor/aromasin. Hopefully it will work!

j1e1n1a

I just failed on Ibarance/Faslodex as well. I have had only bone Mets until this last PET. I am so confused because I have been feeling well.

I really hope this combo works well for you all.

Jena

Iwillwinthisbattle

I just received my first dose of faslodex yesterday, what an oh so comfortable procedure!! Will be starting ibrance this weekend. I’m praying for a long relationship with these two

Husband11

It would be wonderful if the newly approved abemaciclib (verzenio) worked on those that have failed on palbo (ibrance).

FanLee

my mom has breast cancer stage 3a since 2006 (er+,pr+,hr-), she is on Faslodex right now, we are also trying CBD oil

Jlim

hi how are you coping with aromasin/ affinator? I was on ibrance / letrozole and it progressed after 9 months and changed letrozole to faslodex with no regression. I am very afraid