If you don’t mind to read a long story, I would love to provide more details.
I moved to US since 2000. I worked here and had insurance all the time but never think about to use it since I always think myself as a healthy person.
My first diagnosed DCIS on 2012 was in Taiwan when I went back to visit my family. Six months later, I found another lump on the same breast. I quit my job in US and went back to Taiwan for treatment. The reason I decided to do treatment in Taiwan is because I knew doctors there and I thought I would feel more comfortable to be treated there with family support. Having a standard care for stage 3, I went back to US on 2015. After became MBC on 2017, I started to seriously thinking back to US for treatment because I knew I won’t stay in Taiwan until end of my journey. We don’t have kid but I have a lovely husband who works in US. Besides, like some other countries with government health insurance plan, there are limits for treatment in Taiwan. It wasn’t available to use Ibrance then. So I came back to US for the treatment. I had Navelbine when I just diagnosed MBC in Taiwan. Three months later, progression. Switched to Doxil. Four months later, I had pneumonia and switched to Letrozole. At the same time, I went back to US and looking for doctors here. I finally became patient in MD Anderson on October 2018. My oncologist was the Vice President of clinical research department. She decided to kept using Letrozole first since it worked on me. Eleven months later, she switched to Palbociclib plus Fulvestrant due to progression. Another eleven months, switched to Capecitabine. Every two to three months she ordered CAT scan to restating. Since I had some lumps on chest wall, it’s also very easy to distinguish if I have progression or not. After using Capecitabine for one month, I had several lumps growing on chest wall, so I switched to clinical trail due to progression. I had two clinical trials at that time, both worked only two months and one month. And I decided to came back to standard care because phase 1 trials are very difficult to cooperate. A lot of time spent in hospital. So my oncologist gave me Eribulin. Two and a half months, switched to Talazoparib due to progression. Four months later, I had pericardial effusion and they found it was HER2+. So, switched to Docetaxel plus Herceptin and Perjeta. Three months later, progression. She took out Docetaxel and added Exemestane because I want to try hormone therapy again and this drug is the only one I have never used. After five months, progression and she gave me option of gemcitabine plus Herceptin or clinical trials. That’s the time when she told me I don’t have many options left. I am going to have this chemo next Tuesday as my first cycle.
Thanks for reading my long long medical history.
I am not very happy with MD Anderson and my oncologist sometimes, but I don’t think they didn’t do their job. Every time when I had symptoms ( avascular necrosis or vocal cord paralysis), they referred me to the right department to treat them. Unfortunately, they didn’t work.
I still feel blessed to live in US and have insurance. I just want to say, for ladies who didn’t have a lot of treatment options in their countries, don’t need to feel frustrated because of no chance to try different drugs. I am the one who tried a lot of treatments and only few of them worked.
Best regards,
Yen-Ju
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s_yenju
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Wow! We needed to read the details of your history before commenting! It does seem that there were reasons to try so many options. It seems your oncologist has been actively seeking a solution. It seems that your new treatment is aimed at your HER2+ cancer. Since that type is considered more serious than HER2- , it makes logical sense to me that it needs to be the priority.
You certainly are a strong woman with the right attitude to go through so much! Given that MD Anderson has a positive reputation, I can't see who you might consult otherwise. I'm guessing that you are much younger than many of us, perhaps only in your thirties? Breast cancer is much more virulent in young people. The fact that you are able to keep going speaks to your general health despite your cancers!
I very much hope your current treatment will prove able to control your cancers. I am glad that you have your husband's support. Given how the past ten years have gone, maybe it is good that you didn't have to care for children too! Please keep us posted as to the results of your latest treatment.
Dear Cindy,Thanks for reading my long medical history and giving your kindness reply. I was first diagnosed BC when I was 43. I am 53 now. Maybe still younger than some of you. Some people say women who are single or don’t have kids have more chances to get breast cancer. Who knows? It’s not my choice but just happen to be. You are absolutely right that I don’t need to worry about my kids when I had treatment.
I will update my treatment result. Hopefully it will be good news this time to cheer all sisters.
You are definitely younger than I am! At 76, I could be your mother. The fact that you were first diagnosed in your early 40's probably does mean your cancer is faster growing than mine. I was 60 when I had early breast cancer, and 73 when MBC was obvious. Still, you've managed 10 years of treatment so that is a good sign. Please do keep us informed.
I'm not sure that is true, I was 45 when I had my first tumour and after 26 years it came back as MBC. I had surgery, radio and chemotherapy and ten years tamoxifen. Now I'm 21 months into letrozole and ibrance and improving. I think many individual things contribute to the progress of your disease. X
That’s true and not true. Breast cancer is much more virulent in young people which Is true but still different from person to person. My KI67 number was high when I was BC. I had already been told I have large chance to be recurrence or metastasized in a short time.
You have been through a lot. Keep going and if you don't believe in the people treating you find a new hospital. I am at Dana-Farber in Boston and love my team Keep talking to us and asking questions.
Praying for you s_yenju, what a journey you have been on. I turned 54, and it all feels so unfair - but then I tell myself ‘if not me…who?’ I know I would not want to wish this journey on any other…family, friend or foe!Have you thought about getting a second opinion?
I totally agree with your ‘if not me…who?’. I treated this journey as the most important test in my life. It tests me if I am strong enough like what I thought.
I’m sorry to hear of all the change of treatments and the progression. I’m 72 and I’ve been lucky enough to be on Arimidex for the past 5 years. I have always thought that I’d get a personal prescription from Chris Woolams at Canceractive when I feel the time is right. It might be something that you could look at. I remember reading a report from Taiwan on a cancer drug and thought they were quite innovative with their treatment. I’m also in the US but after using Xgeva for 5 years, it’s left me with a bad eye and seems now some bone loss in my jaw. I wonder why I was put in this drug when there were simpler alternatives. They were billing my insurance $10,000 each treatment. Was that the reason? I'm afraid I'm getting cynical. Good luck on your journey. I think we understand our bodies and Doctors don’t know everything.
Thanks for your information. I will check Canceractive. The good thing to have treatments in Taiwan is they also cooperate with Chinese medicine as supportive care. Good Chinese medicine may not treat cancer but definitely can strong patient’s immune system. We also have some resources here in US. Unfortunately they’re not covered by insurance.
Yes. When I mentioned to my oncologist that I was trying to eat nutritious food. He told me that there was no data that showed food helped in the fight for cancer. Surprisingly he is Chinese. I ordered a 2 pound bag of apricot kernels from Amazon regardless of his advice. Chris Woolams lives in Thailand but his non profit is based in the UK. He. Would adamantly disagree with my Onc. Good luck in your research Chris
Many prayers and hugs to you and your husband as you battle this dreadful disease with us. We will all whole hands and sing and give each other support. Blessings, Hannah
Hi s_yenju, Sending you best wishes and continued strength.
Hi Yen Ju Wow you have experienced a lot of treatment options , some I am also familiar with . One side effect that you mentioned was the vocal cord paralysis, which treatment do you think caused this and how was it treated ? I also have been diagnosed with this .
I hope your next treatment is gentle on you yet effective on the cancer .
Hi Luann, My paralysis of vocal cord happened suddenly on the first day of Talazoparib. However, one day before that I had my first vaccine of COVID. Endoscopy showed my left vocal cord paralysis but nothing else. They did the implant injection to expand left vocal cord making right vocal cord easily to meet left while speaking. Unfortunately, those implants didn’t stay in the place they wanted. The procedure failed.
Oh no , so are you back to having no voice ? My paralysis happened when I was taking Ibrance & Fulvestrant, I had an extremely persistent post nasal drip that caused me to cough until I was sick to my stomach . I was treated for gerds . My oncologist doesn’t feel it had anything to do with the Ibrance . My treatment was changed due to progression and the constant cough has decreased significantly & post nasal is manageable.
This was during the beginning of Covid it took a year to get it treated with a collagen injection . It took a 15 minute procedure for me to have a voice back . It is far from normal but it is better than it was.
Thank you for posting & sharing .
My heart breaks for you that your treatment for it was not successful, will they do it again ?
Dear Luann,They did swallow testing and endoscopy when I had symptoms. My swallow testing was fine so they didn’t worry about getting pneumonia. They also tried to inject collagen on me. Unfortunately, I can immediately see from the screen of endoscopy, those implants kept moving down from the place the were supposed to be. After procedure, they ask me to do some sound exercises to push the implants back but didn’t work. We discussed on the following appointment and decided it’s useless to do it again. After I stop that drug, my voice seems coming back a little better. Looks like it won’t go back to normal since I am always on a treatment. It’s a little sad that I couldn’t sing songs like before but at least I am still able to communicate with others using hoarse voice.
I am glad the implants worked on you. They said your body will absorb collagen three months later. You might want to inject again if it works for you.
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