Drug question?

[Mimigram]

Is anyone estrogen/progesterone positive? I am wondering if Ibrance & Letrozole stop working are there any other drugs to take or is that it?

[barbarac76]

Hi. I am ER+ , HER2-. I can only tell you what treatments I have had so far. I'm not sure if this applies to you since the treatments are different for HER2- and HER2+.

So far, I've had Letrozole, Exemestane with Afinitor, and Faslodex with Ibrance. In addition, I have had Zometa infusions every thee months for five years and recently switched to Xgeva injections every three months.

[blms]

I am also ER, PR positive and HER2 neg. Many of us are as well. How long have you been on this first line treatment? Where is your cancer at this point? I don't worry about what is next, as I find dealing with what is now overwhelming enough.It is a 24/7 job changing lifestyle, diet, and my head. Worrying about tomorrow is more than I can handle, tomorrow will take care of itself and there are more drugs monthly for our condition and so many good things on the horizon. Find ways to discover joy daily and something to make you laugh every day, even if its forced. Keep us informed, great ladies here!

[Mimigram in reply to blms]

I had lobular breast cancer 14 years ago in one breast and 14 lymph nodes. It was misdiagnosed for almost a year. I had a mastectomy. This October I had a cyst removed on my ovary which was non-cancerous but they removed the ovary and the fallopian tube which came back from the pathology department as MBC. I have been on IBrance and letrozole just starting my 5th cycle. I started 125mg of Ibrance in Oct. I ended up in the hospital as I caught a virus. Then they dropped it down to 100 mg but my white count still was too low. Now I am on 75 mg and doing OK.

I asked my oncologist how long I would be on these drugs. She said the rest of your life or until they stop working. Depressing for sure.

Thank you for your reply

Mimi

[PJBinMI in reply to Mimigram]

Mimi, Alot of us with a good response to our first hormonal treatment, like you and letrozole, do well for a long long long time! It's definitely good for you that it took as long as it did for the cancer to metastasize. While it's true that we will probably be in treatment for cancer for the rest of our lives, that can be a long time. I was diagnosed in March 2004 and am still here and just on third line treatment. I'd write more but it is a bit after midnight here and I need to get to bed soon........

[Mimigram in reply to PJBinMI]

Thank you for your support!. Sweet dreams

[Klamato in reply to Mimigram]

Hi, I have been on Ibrance, fulvestrant and Xgeva injections sine last April and have done well. I have mets in my spine, liver, and lung. My last PET scan in January showed a decrease in activity and some shrinkage, so it's do what it should. I have constant eye tearing, which is annoying and I do get on and off diarrhea, also annoying. I take a nap most everyday because I'm more tired, but I don't have too much to complain about. I do have a positive outlook at this point and my onc says if this treatment stops working there is a chemo pill that she would put me on because it's less invasive that traditional chemo. I am also 76 so perhaps that makes a difference, but overall I believe and have faith that there are other things to try! God is good and I'm going to enjoy every day that I have left! I have a wonderful friends and four wonderful and supportive children so I feel I am blessed. I try to get outside of myself by doing what I can for others who are going through different situations! All EVERYONE has is today! No one has a corner on this thing called life! It's all in a master plan. Hang in there and have a grateful heart for the good research going on! Have a great day and God bless!❤️👍🏻🙏🏻

[Mimigram in reply to Klamato]

I am grateful for your very inspiring words!

[Nelsonyong]

Hi Mimi, can try faslodex injection. My mom is on this since last Aug. No worries and take care.

[Dianne417]

Hi, Mimigram! I, too, like many of the women here, am ER/PR+, Her2 and neu negative. There are definitely other drugs out there and more coming down the pike all the time. I have been on Ibrance and Letrozole for the past 26 months, but I'm pretty sure that this regimen is wearing off. I will see my med onc tomorrow to discuss the results from my most recent scans and next steps forward, which I think for me will probably mean switching from Letrozole to Faslodex, but staying on the Ibrance. I'll see what she has to say. I've also asked her to check in with a bc med onc I saw at Dana-Farber in Boston last year about work they're doing on treating the development of drug resistance in ER+ women like myself. I should know by tomorrow whether there are any trials for which I might qualify.

So, don't worry! My med onc says that there are plenty of drugs out there to keep us going. I wish you luck!

[Mimigram in reply to Dianne417]

Thank you that is good news. Keep us posted.

[Dianne417 in reply to Mimigram]

You're welcome! Glad I could help.

[KarenHale]

I also have lobular cancer it metastasized to my bones and my stomach. I am ER PR positive HER 2 negative. I was On Ibrance and letrozole for 18 months and it stopped working. I went on Affinator with Faslodex injections for a couple of months and those did not work. I had to get regular chemo because the cancer keeps coming back in my stomach. I am now getting ready to go on Xeloda, it’s a chemo pill. hoping it’s my miracle cure , there’s got to be something that will kill this cancer in my stomach. I’m also on a search for clinical trials or immunotherapy that will kill the cancer in my stomach. God is good he has something on the horizon.

[Have-faith in reply to KarenHale]

You are so right to remind yourself that other treatments are being researched and something else will become available to us. Keep the faith!

[Mimigram in reply to KarenHale]

Have you read Jane McLelland's book How to Starve Cancer. She also has a facebook page where you can sign up and get lots of information. It can be overwhelming.

[NCDS in reply to KarenHale]

Prayers just started xelota as Ibrance and faslodex stopped after 3 months. Let’s hope!

[Bubbles001]

I am wondering the same thing. I’m on ibrance and faslodex. My old Onc in Texas mentioned Affinitor and Xeloda, but he was very vague. I’m seeing my new oncologist at Moffitt in Tampa in a month and will ask about next steps. I do believe there are several options after faslodex (which I would guess would be your next drug).

[hdhonda in reply to Bubbles001]

Bubbles, who are you seeing at Moffitt. You will like Moffitt. Blessings, Hannah

[Bubbles001 in reply to hdhonda]

I am seeing Dr. Kung. I’ve only seen him once. Seen the PA, Lori Sullivan 3 times.

[hdhonda in reply to Bubbles001]

I see Dr. Hung Khong. I really like him but haven't been back since last summer. I mostly see someone locally. Dr. Khong is an 8 hour drive from me. Blessings, Hannah

[Bubbles001 in reply to hdhonda]

I need to remember his name better! It’s a 90 minute drive for me, but worth it.

[Have-faith]

Hi Mimi. Yes. There are other combinations of treatments to try if letrozole and Ibrance become less effective. I was recently switched from these two to faslodex. And do remember there are researchers working everyday at discovering new treatments. As you read thru these posts on this site you will see there are different combinations of meds to try. This site has helped me understand this and see it in action. Keep the faith!

[SoCalLady in reply to Have-faith]

May I ask you and some of the others what has determined the treatment you're on, such as Ibrance and Letrozole as being "non-effective" or non-working. Increased high markers, progression or what exactly? In other words, what's the switching point and change vs increased cost?

[Have-faith in reply to SoCalLady]

Hi there. To answer you question - So my markers started slowing creeping up. I was at 36, then 40, then 41 and poof 60. A pet scan was scheduled. This showed some new lesions on my liver and on bones which had been NED after a few months on letrozole. I asked my doctor how she knew it was the letrozole which stopped working and not the ibrance. She explained that the ibrance supports the letrozole, or for some the faslodex. It is like the ibrance is an enforcer. It works in tandem with another drug, not alone. I have not heard of anyone on only ibrance. So now I have been on faslodex and ibrance for 3 months. My doctor says it is still early to know if this combo is working. I do know my markers went down in the first month. I decided not to drive myself crazy watching the tumor markers each month. Last year I was obsessed with seeing my monthly blood work. It was the first year. Now I am just going by how I feel in the moment. My doctor can tell me things when I need to know them. We don't have a crystal ball to know how things will turn out and I am not going to worry about things I can't control. It will only make things worse. Physically I feel ok, tired at times, but otherwise ok. I am grateful for this. Of course mentally this disease is hard to comprehend so again, I try not to focus on it.

Faith

[SoCalLady in reply to Have-faith]

When you switched from Ibrance & Letrozole to just Faslodex, do you know why your Onc didn't keep you on Ibrance and just add Faslodex? I also understand Faslodex takes a few months to show results. Is that also your understanding.

[Have-faith in reply to SoCalLady]

I am on both. Faslodex and ibrance. Sorry if this wasnt interpreted clearly! I hear some are on letrozole, faslodex and ibrance all at the same time. I asked my onc about this and she said there is not enough research to back this up.

[SoCalLady in reply to Have-faith]

Thank you for your input about being on all three drugs.

[Jaxon2007]

There are lots more drugs to take and even more approved daily. My sister was on that Ibrance treatment as the dr thought her cancer was that, but it turned out MD Anderson found it to be triple negative so she was on the wrong treatment for over a year. She's on Xeloda now with Zometa infusions as well...

[NCDS in reply to Jaxon2007]

That’s what I’m starting, love to hear success! Everyone seems to do well on Ibrance and faslodex, not me. Prayers!

[Petreep]

I started on arimidex, then faslodex and affinitor then ibrance. Now I’m on verzinio with exemestane. All of these within 8 months. Hopefully this last one will work for a while.

[NCDS]

Just came off Ibrance and faslodex, stopped working after 3 months. Started oral chemo, xelota and zometa for bones. Too soon to tell if it is working, but there are numerous options out there. Bone, lung, lymph nodes and adrenal glands have the Mets. Getting radiation on neck too. Dr gave me an extensive list of treatments for er+. Hang in, prayers.