Hi, my name is Christine, and I have MBC since June 2020. (hormone positive, her2 negative). I had mets to lungs, liver, bones and was on Ibrance and Letrozole, which I tolerated quite well. After my last scan they told me that my lung mets had decreased in number and that 5 of my 6 liver mets had disappeared. Unfortunately, the only liver met left had grown to a size of 4,5 cms , and they also found 1 eye met and 2 brain mets, which they treated with cyber knife. I was taken off letrozole and Ibrance
Then they found out that the only liver met left was hormone negative and her2 positive. I am actually really desperate and wonder if there´s any treatment at all left for me. Has anyone of you ever experienced something similiar?
I would really appreciate some help .
Christine
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Tinita
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Of course this is confusing, but the good news is that of all the MBC subtypes, HER2+ disease has the most treatments! My guess is that you might be treated as "triple positive" because some cancer is HR+ HER2-, and some is HR- HER2+. So you may be a candidate for continued endocrine therapy and HER2 targeted therapy. This is the type of situation that may best be dealt with by an NCI-designated cancer center or a tumor board with regard to the optimal treatment for multiple MBC subtypes. The good news is that there are many options!
Hello Christine,I was diagnosed MBC since 2017 and it was HR+HER2- to lung. I have been using several treatments for HR+ and progressed after couple months. This June, I was in the hospital because of a lot of fluid around my heart and they found cancer cell in the fluid which was HER2 positive. Then, they started to give me docetaxel with herceptin and perjeta. Like Bestbird said, I may be treated for endocrine therapy and HER2 targeted therapy later. There are several treatments for Her2 positive and they are using the first line for me.
Hello Yen-Ju, it´s great to hear that there are several treatments for Her2 positive cancer. How are you feeling right now? Any improvement since you started herceptin and docetaxel? Despite treatment with Ibrance I have developed fluid around my lungs since November. I suppose the cancer cells in the fluid are HER2 positive. I hope the fluid dicreases as soon as treatment starts.
Hi Christine,I only had one cycle of new treatment but I have already seen those little lumps on my chest wall being stable. I also had fluid around my lung since the cancer metastasized to lung. If it is increasing and make you feel shortness of breath, doctor will recommend to drain the fluid out. It’s a fairly easy outpatient procedure. Around couple days after procedure, you will feel you can have deep breath again. I hope the new treatment can decrease your cancer and you don’t need the procedure.
Your doctor may choose different treatment since herceptin and perjeta are large molecular which cannot cross brain barrier. I knew a friend she is also Her2 positive and she had been using Kadcyla for five years without progression.
Hi Yen-Ju,thanks for your message. Hope treatment works for me. How well did you tolerate your first treatment of docetaxel? Do you get it every 3 weeks? I wanted to start working again in September (just a few hours), but I´m not sure if I can.
Hi Christine,It’s every three weeks. Be honest, it’s the most difficult tolerable treatment I have ever have. However, I think it’s mainly because of perjeta not docetaxel due to my previous experience of docetaxel and herceptin didn’t cause any problem. I told to my care team and they gave me some advice for next cycle. Hopefully it will work better next time. I am still working from home the whole time because I like doing something to draw my focus out of the pain. If your body allows, I encourage you to work some time. Like my doctor told me the best way to help is to keep active.
Hi Yen-Ju, had the fluid around my lung drained out yesterday. Breathing had become really difficult these last few days...They drained out more than 1,5 ltrs. I am feeling much better now, a little dizzy, but ok. You´re right, having something that keeps you active is the best way to fight this horrible disease. I have been at home for more than one year now (I am a teacher) and I miss the life I had before my diagnosis. My latest scan results actually depressed me a lot. I will see my doctors on Friday. Hopefully, there´s a good new therapy for me.
Hi Christine,Wow, 1.5 L is a lot. My was 1.3 L. I spent almost a week to get back to normal breath without pain. Also, the dizziness might came out from cyber knife. As cancer patients, we not only deal with the symptoms from cancer, a lot of time we also need to tolerate the side effects coming from treatment. As I know, there are at least two treatments for HER 2+ met to brain. I will pray for you and hopefully your doctor will give you the best treatment plan for you on Friday.
Yes, it´s a lot, but there is still some fluid left. They told me they could only drain out a max. of 1.5 ltrs. I was so short of breath I could hardly climb the stairs in my house. That´s a lot better now. Let´s stay positive and hope for the best treatment. When´s your next treatment?All the best!
I just had my chemo yesterday. It’s my second cycle. I am still trying to figure out how to eliminate the side effects as much as possible after bad experience of last treatment. If you experience shortness of breath again, don’t need to wait for CT scan to approve it, ask for X ray. X ray can simply show how bad it is and they can schedule to drain right away.
What side effects did you have? Suppose I´ll have to do chemo again (third chemo in 7 years) and just bought some ice caps to avoid hair loss. Hope it works
They gave me Neulasta shot to call my WBC from bone marrow which caused whole body aches for one and half day. After that, I started to have abdominal cramps. After talking to the care team, they said it might be because of the reflux or constipation. They prescribed me some medicine for these symptoms. Hopefully it works this time.
Hi Yen-Ju,how are you after your second cycle? Have you found a better way to cope with the side effects? Yesterday, doctors told me that they wanted me to use Kadcyla. I´ll start next Thursday. Hope side effects won´t be too bad.
Hi Christine,I talked to my care team about the side effects and they not only reduce the dose but also prescribed some medicine for me to deal with the side effects. As I know, Kadcyla only target HER2 receptors so the side effects will be minor. One of my friends who was using Kadcyla kept working regularly for five years without progression. I hope it also works on yours.
About your worries on not getting treatment for HR, my thoughts are talking to your oncologist after next scan. If it shows some reducing and some increasing, ask them if it’s possible to take anti-HR at the same time. That’s also what I am going to do after my chemo finish. Please watch the video in the following link. They did mention to use both treatments at the same time.
Hi Tinita! I’m Her2+…have been for 5 years. Mets to bones and had 2 brain lesions in November. Treatment is typically Herceptin/Perjeta. Not a lot of side effects and it lasted over 4 years. Just reread about the brain Mets….Will have to use Kadcyla. The other 2 don’t cross the blood brain barrier. I’ve been taking the Kadcyla since December. Other than fatigue I’ve been ok.
Hi, I will also have to use Kadcyla, Zoladex and Zometa. Hope side effects won´t be too bad. The only thing that worries me is the fact that I have both her2+ and her2 negative mets and I feel that Kadcyla only attacks the her2+ mets.
Kadcyla has both Herceptin and Examestane. Herceptin is for your Her2 and I believe Examestane is for anything? 🤷♀️ I know it’s for my brain Mets as it crosses the blood brain barrier.
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