I was diagnosed in April 2017 at stage 4 breast cancer. Started on tamoxifen and then switched to anastrozole in March 2018. Cancer is now progressing so doctor wants me to switch to verzenio with faslodex depending on whether I get the financing for the new drug verzenio. I thought I would be going to the next line of aromatase Inhibitors, either letrozole or exemastane but my doctor says those are similar enough to Anastrozole that she doesn't believe they will work. I am having an MRI Friday to determine how much the cancer has grown in my brain which is why my doctor wants me on Frozen you because it penetrates better than ibrance.
Does anyone have any experience or comments on this? If we don't get the financing, we will try for ibrance or I think the next line is afinitor. I have never had chemo or radiation. That will come at the end if I choose that course.
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Wolverine19
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I pray for the best for you. So many choices on treatments thank God!
Hi,
I hope that you manage to get the financing you need to move ahead with the treatment your oncologist has recommended. You will know more after the MRI scan. It sounds like you have a few options available, which is good. I hope you can get started with your new treatment as quickly as possible so that it can make a difference to you and hopefully push the cancer into remission.
Hi Wolverine (love that tag!) I'm sorry you're dealing with progression and a new regimen, I know what that's like. I just had my first Faslodex shots a week ago because liver mets returned after 15 months on Letrozole. (I've also heard that all the aromatase inhibitors are similar in effectiveness, that may be why you are switching to Faslodex.) I was pretty darn nervous before the first round but I'm happy to say the shots were a non-event. A little sore for a day (sat on a heating pad!) but no bruising and so far no other side effects. I'm glad your doctor is trying to get Verzenio for you, it does seem to be recommended more for brain mets. And if insurance doesn't approve it the first time you can appeal! I went through three appeals before an outside insurance review board approved my oncologist's request for Xgeva. (I have lots of bone mets)
This may be more information than you want, but I've found this document helpful in describing common treatments for different types of cancers and mets. The part about brain mets starts on P 68.
I also just finished "The Cancer Whisperer" by Sophie Sabbage and loved it. She had extensive brain mets (her primary cancer was lung) when first diagnosed. In addition to some treatment options it's a wonderfully uplifting and empowering read.
Finally I'd like to comment on what you wrote about chemo or radiation. I've also never had either, and for years thought I never would consider it. (I ate organic veggies, did tai chi. breastfed for years ....I'd never get breast cancer. Ha!) But with MBC the unthinkable sometimes becomes not only thinkable but the best option. For me, reading posts here about other womens' good results with chemo has been very encouraging, as has talking to friends in local support groups who have had excellent results with radiation, especially for brain mets. I encourage you to be open to all options and not wait till you are "at the end". With all the therapies and research out there our ends may still be many years off, and a new groundbreaking therapy may be just around the corner. Ultimately, the "quality of life/length of life" balance beam is one we all have to walk individually.
Wishing you all the best with the MRI, please keep us posted. Hugs!
Macro Mom, thank you for your wonderful e substantiv reply. I especially can appreciate the fact that you never had chemo which makes me feel connected to you. There aren't that many women who follow the same path as me. Yes I want to find that book, will let you know when I start to read it. I just was a little confused about whether or not we were skipping anything with those are aromatase inhibitors. I thought we would follow with letrozole and exemestane, just don't want to miss anything. I was afraid of Chemo when I was first diagnosed because I was very sick and did not want to put chemo on top of that. Overall I feel like I've made the right decision so far, but I'm learning about all this as I go along. If nothing else, I've been able to live a really good year for the past year just on hormonal treatment. Thank you for your very kind advice and I will be in touch going
Yes, we have made similar choices. I was also pretty darn sick and skinny when first diagnosed so I decided to go with just Letrozole and not add Ibrance at that time. I'm glad I did because I was able to gain 10 lbs, get a lot stronger and also had a really good year. I may add Ibrance or another CDK 4/6 inhibitor next month but I feel in a much better position to weather the side effects. Take care!
I know folks say chemo is not that bad any more. Certainly not horrible like 40 years ago. But you are wise to recognize it’s no walk in the park either. Allow me to share my experience so you hear another side so your eyes are wide open. I’ve had chemo twice, in 2004 and 2014. I did not find it easy either time. Lot of fatigue first time with nausea but I would rebound after 4 days. Stronger chemo second time followed by radiation, and fatigue was constant. No one told me this was much stronger stuff (Taxol) so I couldn’t figure out why I couldn’t rebound like in 2004. Some folks don’t mind radiation because it doesn’t wipe you out like chemo. I I found going every single weekday for five weeks, after still recovering from Taxol, to be emotionally draining. I had to apply specific lotion so the skin will “only” turn red. At the Dana Farber in Boston, I had to walk to radiation through a corridor with colorful LED blocks, many of which said “in memory of ...”. Not a good reminder of the deadly toll the disease takes as I went for treatment! It took me a good 6-7 months to feel myself again after my last treatment. With my MBC diagnosis in June 2018, I was weirdly relieved I can take ibrance and letrazole rather than chemo. I get a little tired but nothing like my prior experiences. I exercise, eat ok, travel, etc. I’m an informed patient like you, but I find it’s hard for doctors to acknowledge how rough chemo still is. Just because it’s not as horrible as 40 years ago doesn’t make it easy. Honestly, I doubt I will ever do chemo again if that’s the only option. If it comes to that, I prefer palliative care so I can live my remaining time with dignity. Just one person’s perspective.
I got so sick on Ibrance that my onc is switching me to Verzenio. I had to fight so hard to get financing for Ibrance that I wanted it to work! I have insurance but they wouldn’t cover it so I applied to Pfizer directly. When I saw an application for the co-pay I knew it was going to be hard.
I’ve had breast cancer in each breast, left in 2001 and right in 2013. The second time the lymph nodes were affected. During the second round I had a lot of problems with my right lung and had to get several thoracentises. Now I still get them a few times a year and learned about a permanent drain on this site (off topic, sorry!)
With the Ibrance I felt a lot of side effects that stopped after a week except for the breathing. I walk my dog every day and was having trouble breathing. I wanted it to work so bad that I tried to push through it but couldn’t make it to week 3. I hope I haven’t damaged my lungs permanently, seeing doctor on Monday. It’s been almost a month and I haven’t heard anything about Verzenio so I will probably have to fight for that. When my cancer “came back”, the first thing I read was “Fight for Everything,” and I cannot tell you how many appeals I’ve made. It’s so stressful and exhausting I’m sure that stress isn’t good for us. I’m so grateful to meet others in the same boat. Hopefully, together we’ll live!
Yes, look up the Pfizer website and it gives information on patient programs. If you qualify, you may be able to get the medication at a greatly reduced rate or even free. You also might want to call them on the phone, sometimes you get more information that way. Good luck!
I ended up on ibrance just because of the expense. I did find out that I am eligible for their patient assistance program because my insurance is commercial. When I apply for verzenio, I did not realize that it is commercial. But it is not yet on the formulary, so I don't know whether I can get that for their patient assistance program or not. I should have asked that question, but now being on the ibrance I will probably stick that out for now. And then verzenio will be the backup I guess. I woke up this morning and my face is really red. I had a smoothie drink that had less than 2% pomegranate juice in it. They tell you not to drink grapefruit juice oh, but I also read somewhere on a less official site not to drink pomegranate juice. So I'm not sure if my face is red because I've been taking ibrance a few weeks in this is a side effect from that or it could be from having that little bit of pomegranate juice. I guess time will tell, I will avoid that in the future. Just about to finish up my first cycle.
PS. I forgot to mention I had surgery and chemo twice, radiation once, letrozole worked alone for several years. I developed bone and liver and lymph Mets last year and went on faslodex when letrozole stopped working. The liver and lymph Mets really scares me.
Hi gem Gardens, I'm sorry you had issues on ibrance. Your post is very informative to me. So since my last post I got very sick last week, had to go get fluids because I got dehydrated. That has never happened to me before. I was feeling much better after that however and went and started my injection of faslodex Friday. That seems to be helping with some of my cancer Mets oh, but I am still getting sick sometimes when I go out and usually when I come back in to my building. My appetite has been very sporadic I am not able to eat a whole lot these days. I found out after my doctor appealed for verzenio, my insurance company will not cover more than 50% which as you know is out of the question because of the expense. I did get one piece of good news from my MRI last week, the two spots in my brain are gone! So now my doctor is trying for ibrance approval. I did get a 1-month free waiver oh, so I am supposed to start that tonight. I am a little nervous because you said you got sick on it. Well I will just have to try and see and go from there, I am praying that it will work. I am sorry ibrance did not work for you, but hopefully you will get the verzenio and that will be a better Med for you. Glad to hear you walk your dog, I love dogs and in fact took care of pets for 20 years for other people.
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