Just Ibrance?

[Mypathforward]

Hello ladies....I was wondering if anyone is just taking Ibrance without a hormone blocker?

[Hidden]

I have the hormone blocker as my Cancer is Oestrogen driven. Also, the blocker puts woman into early menopause if they are young enough.Hope this helps

[Beryl71]

I have ibrance with letrozole, my understanding was they worked together, one to suppress the source and one to suppress the cancer growth.

[Teddielottie]

I too have a hormone blocker (Letrozole) , with Ibrance , as my bc is oestrogen driven .

[Debbigbang]

I am on Ibrance and Letrozole. They are a team . I believe you need together. There are others, but this team is working for me 🥰 🙏

Deb

[Symone]

I am also taking Letrozole with Ibrance.

[Adele_Julia]

I’m on Ibrance and Faslodex !

[debbiedo2063]

Me too on Inbrance and Faslodex. Letrozole alone did not do the trick . I was on Tamoxifen 6 years clear then onto Letrozole and now MBC. Debra xxx

[bubblystream]

No. I thought they always use a hormone blocker. Unless your cancer is not fed by hormones. Mine grew on estrogen only. So i have estrogen blockers. 🙂

[Mypathforward]

I think I perhaps didn't pose my question very clearly......I have a lot on my mind. I was originally diagnosed with DCIS in 2003 with angiolymphatic invasion, meaning it left my breast and was in my blood, partial mastectomy, 5 rounds of the red devil and 6 1/2 weeks of radiation but was unable to take tamoxifen or Femara. Fast forward to February 2019 when I was rushed by ambulance from work with severe right pain and a cough that had been going strong for 3 months. DX was 2 broken ribs and lungs that we covered with nodules measuring 4 mm or less. PET scan snowed a hot supraclavicular lymph node, hot ribs and hot lungs. Biopsy of supraclavicular lymph node confirmed Metastatic primary breast cancer. Oncologist said ribs and lungs also, but no further biopsies were performed. When I asked how they can say for sure that ribs and lungs were MBC, they said based on how they presented. So I was started on Verzenio, Anastrozole and Zometa. I could not get the diarrhea under control and after 90 days of not being able to leave my house, I was switched to Ibrance but CTs and my rib pain and cough were much improved. Every 90 days, my CTs showed stable disease, no hot lymph nodes and no change in lungs. In June of 21, the report said all stable with no changes since December of 19 and that lungs could be benign eideology (?). I made the decision due to feeling so tired, nauseous, bone pain, allergies and as if there was no quality of life to discontinue Ibrance, Anastrozole and Zometa. I definitely feel Anastrozole took a lot out of me and made my bones so thin. I don't plan to resume the hormone blockers. I need the Zometa. I had my CTs and bone scan last week and shockingly, my lung nodules have increased in size and number, 4 mm to 6-8 mm, in 90 days! Bone scans are stable with osteoarthritis progressing in shoulders, spine, knees and feet. I see my oncologist Friday and I need to know what path forward I will choose. Thought perhaps someone else could not tolerate the hormone blockers.

So sorry to be so long winded but I have never really told my story. I read many posts and so many of you are such a wealth of information. I wish you all the best in your journeys and I thank you for helping so many of us with your experience and knowledge.

Patti

[Justme153]

Hi I just wanted to throw this out there .. I have talked to a lot of people and some of them couldn't handle Anastrozole they were miserable. They switched to Letrozole and were fine. I have heard the reverse on this also. Some couldn't handle Letrozole switched to anastrozole and were good . Maybe ask if you could try the Letrozole instead. Good Luck I am 🙏 for us all!!!

[M43bcmgreenblue in reply to Justme153]

Yes I have been on Anastrozole but was in terrible pain all my joints were hurting so was changed to Tamoxifen and was better on that. Since then I was taken off that due to the BC changing to MBC so now on Letrozole which seems to be, not too bad for me. I think it depends on your body make-up as some drugs are harsh for some ladies where others deal with drugs a lot better. Anyway good luck and blessing to you all.

[jersey-jazz]

Your writing reads as if you are very brave and matter of fact. God bless and good luck! It seems as if luck plays a large part in the direction our journeys take us.

[love2golfwell]

I was actually just thinking about this same question this morning. I think if the cancer is estrogen driven, an aromatase inhibitor is needed. I was on Anastrozole prior to my MBC diagnosis and I have to say I had more issues with that than I have had with the Letrozole. I had more joint pain and lots of hot flashes. It would be interesting to see if there are studies just using the Ibrance, even for estrogen positive cancer.

[JustmeMary]

I have often thought about this because I swear the Letrozole is the cause of most of my discomfort (extreme hot flashes, joint pain, weight gain). My oncologist told me it’s necessary to take with ibrance. I had been on anastrazole and exemestane before my MBC diagnosis and both had the same side effects for me. I am 57 and post menopausal but my oncologist said our bodies still produce some hormones and I need the hormone blocker to work with the ibrance.

[PJBinMI]

I've never heard of Ibrance being used by itself, while all the meds it may be used with can be. I've had MBC, lobular, bone mets, E+ her2- since first diagnosis in 2004. Letrozole was my first med and it gave me horrible hot flashes. My face turned lobster red, sweat poured down and it was impossible to ignore. My onc and gynecologist, both women, came up with the plan of having me take Effexor for those hot flashes and it turned them from many each day to a very occasional "warm surge" very tolerable. It's the long acting Effexor, I always forget the 2 lettrs after it, and I'm taking 150 mg in the morning and and 75mg at night, the generic version. Also for vaginal dryness, they have me using compounded testosterone cream, and something the pharmacy calls "scream" cream to help have orgasms. The second also compounded. My impression is that often side effects from the estrogen blocking meds are worst at first and subside after the second or third month.

But like everything with this lousy cancer, it is all highly individual and what works for some doesn't work for all. I got nearly five years from Letrozole and over 9 years from Faslodex and now have been on exemestane for 3 years.

[jersey-jazz in reply to PJBinMI]

Well done, you!

[Mypathforward]

Thank you Sandra. I have read many of your responses and had hoped you would chime in. I left out many details. I am E/P+, HER2-. I also have fibromyalgia and I have osteoarthritis which is progressing rapidly in spine, shoulders, knees, feet and hands. Sadly, Anastrozole is making this worse. My rheumatologist suggests I get back on the Zometa soon. I had jaw issues present on bone scan in June requiring dental work which will be completed in next week. Still presenting on last week's bone scan but I needed a root canal due to infection and a cavity under a crown. This does take longer to resolve. Haven't had Zometa since April.

I was on 125 Ibrance, 3 weeks on, 1 week off, 1 mg. Anastrozole daily and Zometa every 90 days.

I felt like I was 80. I am 62, mother of 4 boys, and was always a work horse. My skin has lost all softness. I am barely mobile and hands and feet are numb. I am in constant pain and don't tolerate the pain meds well. I live alone. I have always hated taking meds. My oncologist seems to think taking more meds to combat side effects is the answer. I disagree because I give up more and more of my independence. There is no quality to my life if I can't drive or am in a stupor. I have thought this through but didn't expect CTs to show an increase in size and number of nodules. That was a devastating blow.

I believe I wasn't put on Letrozole because of it being in Tamoxifen and Femara family. I suffered migraines, numbness on left side and tomato red face. They said to never take back in 2003. We did try Exemestane with migraines still being a side effect. I am curious how others lung metastases present themselves.

Again, thank you for your reply and for all the advice and replies of others. God bless us all on our paths forward.

Well wishes to all, Patti 💞

[TammyCross]

I was really confused about this, too. I was on Ibrance and Fulvestrant (have you tried that as an estrogen blocker?) and they worked really well, until they didn't and I had progression. Then I was put on an oral SERD. Just an estrogen blocker, no targeted therapy. I expected it just to keep me stable, but not to make anything shrink or go away (bone mets, hilum, paratracheal). I thought that required targeted therapy. Well, after my second scan on the oral SERD, my lesions are healing and the new metastasis has greatly reduced. So apparently with ER+ HR2-, blocking estrogen is sufficient. I asked the one oncologist at the practice I go to how that could happen. She said the tumors are being "starved." They need estrogen to grow and thrive, so they are "dying." That may be a a simplistic version, but it fits the picture.

So, like the others, I am saying that the AI is key, and may be enough. I think you have to hunt around for one you can tolerate. Not sure of the systemic relationship between an AI and osteoarthritis, and think you are going to have bite the bullet, so to speak, and treat the side effects with other meds. It is worth it. Your quality of life is poor with all these problems, but getting the cancer under control and medicating the other things could help you so much.

[Mypathforward in reply to TammyCross]

Thank you for your honest response. As much as I don't want to "bite the bullet"...I think I have to reassess my approach. The increase in size and number of lung nodules in 90 days has me running a bit scared. Anastrozole is known to thin bones. I will investigate Fulvestrant.

My best to you, Patti

[TammyCross in reply to Mypathforward]

Good, I want you to go after those lung nodules! I thought that maybe all aromatase inhibitors cause bone loss: blocking estrogen, which encourages bc, causes bones to thin. (Here is an article on that: ncbi.nlm.nih.gov/pmc/articl....

I looked up whether fulvestrant thins bones. One would think so, since it is just another way to reduce estrogen -- although it does it in a different way, by another mechanism. Turns out there is some thought that fulvestrant may not thin bones. I guess the different mechanism makes a difference in the effects. So yes, worth looking into.

[Mypathforward]

Enjoy Sandra....we can chat anytime 😊 Wine 🍷 takes priority 😉

[M43bcmgreenblue]

Hi there

I am on Ibrance but taking with hormone blocker but you must let us know how you get on and hope you are okay whilst taking it, be positive and good luck.