I was happy to find this site and have gotten to know some of the people by their posts. I couldn’t tolerate Ibrance so I’m now on verzenio which is working much better for me. I just couldn’t breathe on Ibrance and I tried to force myself to take it because it works so well on the cancer. I was diagnosed with MBC in the fall. Letrozole had kept it at bay and then all of a sudden my tumor markers shot up and I have Mets in my bones and liver. My mother died 2 years ago from mbc to the liver after colon cancer so it’s pretty scary.
I just read someone got Mets on their scalp and I’m thinking, “oh no, never even thought of that!” Part of the side effect of Ibrance was a crispy scalp that I tried not to pick at. I have a little bit of it with verzenio, I will go back and read that post.
Anyway, this feels silly but I feel left out since I’m on verzenio instead of Ibrance but there aren’t any support groups as good as this one. Is anyone else on verzenio but wants to stay here?
Kathy as gemgardens
Faslodex and verzenio
Written by
Gemgardens
To view profiles and participate in discussions please or .
I’m on ibrance and Faslodex but just because you’ve switched treatments doesn’t mean you need to leave if you feel helped here and comforted ya know? Stay! I’m new as of today but I’m sure everyone else feels the same way I do. ❤️
Stay here anyway! I’m not on verzenio, but we have so much more than n common than our meds. This board is a wonderful mix of different meds, Mets, lifestyle, beliefs, side effects, fears, hopes, and so on. As women with mbc we share a common experience and bond that you can’t find elsewhere when you’re feeling up, down or sideways. Glad verzenio is working for you. I’ve read of a few others who are on it. Hoping they reach out to you.
Hi Kathy,
I am not on Ibrance either, so I can relate to what you're saying about feeling a bit left out when others talk about Ibrance, how long they have been on it, side effects and so on. I felt like that at first, but I feel more connected to this group now. We can learn so much from each other, build each other up and offer advice. It isn't all about breast cancer. Sometimes we talk about other issues such as nutrition, travel and other subjects.
Yes, I have. I am about 1/3 of the way through the book. I am reading it slowly, trying to take it all in and writing notes as I go along. So that's why it is taking me so long to read it. I have found it very informative so far. Just as a side point, I had a breast cancer research charity bag put through my letterbox yesterday. I get them all the time, but this one was different. The charity is researching cancer stem cells. I think this may be one of the ways forward in cancer treatments.
Please stay. We really have so much in common. It is not onle what med we are on. We are all on a horrendous jorney and we need to travel here with women who understand what It means to deal with mbc! Love, Marianne
Hi Gem, please don’t let that discourage you. If you poke around on the site you will see there are women on chemo or letrozole or fasoldex alone or xeloda etc. That is how treatment for mbc is....and very fortunate for us that there are many options. By the way, Ibrance, Verzenio, and Kisquali are all esssentially the same. They are in the same class of drug called CDK 4/6 inhibitors. While each has slightly different side effects, they work along the same pathway in the body. Sometimes doctors need to switch patients to another in the class as we can all react differently to each. Good luck!
Dear Jesus, please heal and bless this precious one and make a way forward, as you are the God of miracles, and You never change. Give her many more years and satisfy her with a much longer life, and I ask it in the mighty name of Jesus, amen. God bless you!
That’s inspirational. I loveMaine, my dads family spent about 400 years there, fishing. I’d love to live there in the summer and come back here in the winter.
Hey, update in order. I am six months on Letrozole plus other supplements : Carnivora, Graviola, Laetril, turkey tail mushrooms, fermented tumeric. My markers are down and my lymph chest tumors showed about 25% shrinkage after 3 months of this (in May); my right lung's pleural effusion drainage is down from around 350 ml every two days, to around 180 ml every two days. I am definitely breathing better.
Nurse PA wants to fuse my other lung lining to my lung wall to eliminate space for
effusion to collect, but I refuse to let her do this procedure as I have no taste for the
possible side effects and am feeling so much better just draining it off. Can even do it myself. I expect I should undergo another PET and CAT scans in a couple more months to see what's going on and what explains why I am feeling better (less short of breath). I still have a mitral heart valve needs open heart surgery to repair, but I
am putting it off, hoping my lung will get even stronger in a couple more months.
Part of the joy and reassurance of this group is hearing about the different medications helping others.
When I asked my oncologist about what happened when my meds stopped working she just replied that there were other meds. I felt like I'd been patted on the head and told not to worry my pretty little head about it. Here I've learnt that there are lots of other options. That has taken a huge chunk of worry off my shoulders.
Also, we all have a lot of issues in common that aren't particularly related to specific meds. So please don't feel it's not relevant to you 🙂
and now they have researched and found out that when ibrance stops working, a vacation from it of 42 days and it works again! YAY! God bless and heal you in Jesus name, amen!
It’s this site that will keep me from freaking out if I need to change my medication. Many women on here are on different treatments. It’s good to hear the variations. Welcome 😺
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Scan results after Ibrance. 
New drugs for mbc 
Questions on treatment options
PIQRAY update
