Hi all - I'm a newbie here and I feel so grateful that there is a place to go to where everyone knows how it feels to have metastatic stage iv BC. (bones only) I'm on Ibrance and Faslosdex. I had (have) terrible shortness of breath. To make long story short, on top of the BC I have moderate to severe mitrol valve regurgitation. My ONC and Cardiologist are meeting to decide a course of action. My WBC's in the range of 1.2 - 1.7. Has anyone else been in this situation where a repair of a mitrol valve was done. I am worried about infections.
Christy
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Kykakeke
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Welcome Kykakeke! I am on Ibrance and letrozole for 15 months. I was diagnosed with MBC (bone Mets) in April 2017. Someone on this site should be able to help you with your questions about heart surgery with low WBC count. I think most of us on ibrance have low wbc counts and I also wonder about having any kind of surgery done. How many of us on Ibrance have had surgery done and did you have a successful outcome?
I had robotic surgery of liver tumor while on ibrance. My oncologist just gave me a shot neurogen to increase wbcs before surgery. Had successful outcome. Also might have stopped ibrance 1 or 2 weeks before surgery.
Don't panic about this! It's great that your onc and cardiologist are meeting to discuss what to do. I would think that you could go off Ibrance for awhile if your counts need to be higher. Ibrance is a fairly new drug and many of us metsters were treated with Faslodex alone, or with a bone med like Zometa or Xgeva, and did well before Ibrance! I got nine years from Faslodex -- took Ibrance for 10 cycles in year 7 and ended up with damage to my lungs that is likely from the Ibrance so I do have a bias towards Faslodex and away from Ibrance and some of the other newer drugs. I've had bone mets since my original diagnosis in 2004, yes, 04, 14 years. Once your docs present you with a plan, it is certainly reasonable for you to get a second opinion if you want to. The top cancer centers in the US are those designated "Comprehensive Cancer Centers" and they are listed by state on the website of the National Cancer Institute. They have oncs who specialize in bc and who see patients and do research. Good luck to you--I hope your doctors will come up with ideas that will help you and give your peace of mind.
Let your onc know ASAP. This is not something to wait about but is worth a phone call on Sunday! The condition I have is called Interstitial Lung Disease. The pulmonologist described it to me as "gunk between the air sacs." Fortunately, I have it only at the very bottom of the right lung and it has not gotten worse since it was diagnosed about 1 1/2 years ago. Two oncologists and two pulmonologists have agreed with me that it could be from the Ibrance, and we notified the FDA and the pharmaceutical company. I would get out of breath just leaning over to tie my shoes! Fortunately, using two different enhaled Rx meds has helped me alot--albuterol and breo.
Here is a link. It used to be really easy to find on their home page, now it's gotten harder. Now I always have to hunt a bit....I think the first thing I usually find is something about NCI designated cancer centers.
Hi, Christy! My 90+ mom had mitral valve surgery (she had two mitral clips installed to prevent leakage) and she did fine. I think this procedure is much more common now and would guess that you will do just fine. I would imagine that docs will take precautions to prevent any potential infections while your white cell count is below normal. Prayers to you for a very successful procedure! Linda
SeattleMom - I finally had the mitral valve surgery with one clip installed. That was just 3 weeks ago. I feel great!!! Wish I had it done earlier but I totally understand that having cancer & on Chemo kinda made planning a little longer. They did take me off the Ibrance for a month. I and the docs weren’t sure if SOB was caused from the mitral valve or the Ibrance. My Oncologist was thrilled that Ibrance wasn’t the cause. Now I can concentrate on the cancer only. Like I said I feel very good. I’ve been back on the Ibrance and have had no issues with it at all. Prayers for all of us.
I had cataract surgery shortly after starting Ibrance+Faslodex. I postponed one cycle to eliminate low WBC concerns. You should be fine. They may preload you with antibiotics. Ask if this would be a reasonable precaution.
I have been having shortness of breath and just finished a bunch of cardio tests. All but the last show no significant heart issues. I’m waiting on results of the stress test. My onc doesn’t believe the Ibrance is the cause, but we seem to be ruling out the heart. I’ll know next week.
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