Stage 4 BC (neratinib + xeloda) symptoms of brain/lung mets?

dnguyen2020
dnguyen2020 Member Posts: 6
edited January 2020 in Stage IV/Metastatic Breast Cancer ONLY

Hi all,

I'm creating this new account for my mom as we want to keep in touch with more women in the similar situations and since my mom doesn't speak english, i will be the translator and hope we can get info as well as the support from the community.

My mom was diagnose with BC stage 3C back in 2017. She was treated at MD Anderson Houston for the first year. Her first diagnosis back in my country was triple negative. But doctor at MD said it was actually her2+. Due to expensive bills at MD, we moved her back to Texas Oncology in Dallas in 2018. Her current doctor kept thinking triple negative could be a more accurate diagnosis so we did several tests but all the test results came out as her2+ still.

She was on Herception for probably a year and it was the best medicine that worked for her during her journey. She was healthy with very mild side effects. But then herception stopped working as my mom got some new tumors on her lymph nodes. She was on several different medicines in summer 2019, including a clinical trial and nothing worked. Over a month ago, the doctor gave her Neratinib and 3 weeks ago, she started taking Xeloda together with Neratinib. She just finished her first cycle and is starting a second cycle of Xeloda today.

What I have been very worried about is her cough. She has been coughing terribly in the past 2 months. No blood, no mucus. She can barely talks because of her cough and her voice is changed too. We discussed with her oncologist and all they did was give her some medicine that we could buy from OTC. We took her to a family doctor twice and they just gave her some cough medicine. I am so worried about lung mets but I don't know why both oncologist and family doctor don't order a chest x-ray for mom? Do you always have to demand them to order a scan/mri/x-ray when you feel something suspicious? Does anyone have the same symptoms and turn out it was just something else not dangerous?

My mom has been doing bad from her current pills. Sever diaherra and vomit. She was so healthy and now all of sudden she became weak and can barely cook and do anything at home.

One of my cousins who lives in Asia and he is a family doctor, he told the rest of my family that my mom can only have 6 months max. He facetimed my mom a week ago and notice one of her eyelid was swollen. It is noticeable that her left eye is getting smaller and he suspected that it could be brain mets. Does anyone here with brain mets have any symptoms with eyes? She hasn't complained about her vision or any memory issue yet, just that her left eye got smaller. My cousin said we need to ask for a MRI head scan and if it was actually brain mets, my mom would have 3 months max....I am feeling so sick and nervous right now....But i want to know her prognosis so i can prepare myself....

Also, we live in Dallas and we go to Texas Oncology... if anyone here lives around us, it would be great to get to know local people :)


Thank you,





· Share on FacebookShare on Twitter

Comments

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited January 2020

    Your mom’s oncologist and oncology nurse need to take better care of her in my opinion. Please call and tell them your mom needs to be seen and to get better help for her cough, diarrhea, and vomiting. See if you can get her referred to palliative care for this. On the web site for Texas Oncology, I see a Dr. Quan Dang who is a palliative care specialist. And perhaps your mom’s Xeloda dose needs to be lowered. They probably also need to scan lung and brain. Really, I think she needs an appointment right away, and someone who will advocate for her when there. Tell them about the way these side effects and symptoms are affecting her activities of daily living — what she could do before but cannot do now. Tell them exactly how many times diarrhea is sending her to the bathroom each day, and how many times she has vomited in a day. In other words, be very factual so they can’t just think you are complaining without good reason, and send you away again.

    Nobody can know how long your mom has, but the one who is best able to discuss it would be her own oncologist who has all the details of her case.

    · Share on FacebookShare on Twitter
  • dnguyen2020
    dnguyen2020 Member Posts: 6
    edited January 2020

    thank you for your reply!

    I couldn't take mom to Dr appt this morning so my brother did and the Dr just gave mom some new medicine for her coughing. I told him to ask about x-ray but i guess they didn't. My family always just listens to what DR says instead of asking or questioning them back because they think that could be rude.... (asian cultures i guess).

    Her oncologist didn't say much.....just said her bloodwork is fine... scheduled for next appt... told my mom to keep taking xeloda + neratinib and that medicine won't start working after 3rd cycle so it is still early to say if the pills are working or not... based one what my bro said, the dr didn't seem to concerned about my mom's coughing and tiredness cause i think they assume it was just side effects from pills....




    · Share on FacebookShare on Twitter
  • LoriCA
    LoriCA Member Posts: 923
    edited January 2020

    You didn't say what lymph nodes are involved, but when my cancer spread to multiple nodes throughout my neck, chest, and abdomen I developed a horrible cough and had difficulty talking. My throat would lock up when I tried to get words out. I had no problem inhaling, it was exhaling that caused me problems. My first thought was of course lung mets, but my PET scan showed that my lungs were clear. When cancer spreads to nodes, they swell and can press on the esophagus, etc. which can cause a cough and difficulty talking. When I started a new chemo and the nodes started shrinking, my cough went away. Depending on what nodes are involved with your mom, if any are in her chest it could be the cause of her cough if her lungs are clear.

    From everything I've heard from people, neratinib is a tough drug because of the problem with diarrhea. Proactively taking anti-diarrhea meds should help at least a bit, and if over-the-counter meds aren't helping she should ask for a prescription for something stronger. Doctors are supposed to address this problem right at the start when they put someone on neratinib.

    As for the rest, I agree with everything ShetlandPony said.

    · Share on FacebookShare on Twitter
  • dnguyen2020
    dnguyen2020 Member Posts: 6
    edited January 2020

    based on what you said, I realized i never asked the dr exactly the location of my mom's lymph nodes. I know it was around underarm area when she got her surgery done.... but not sure if it has spread further.....

    also maybe the Dr assumes that her lymph nodes were the cause of her coughing cause her last Pet scan was clear . Her oncologist wanted my mom to finish one or 2 more cycles of xeloda and neratinib then she will do the scan again...

    my mom did all the drugs as yours (based on your signature) and she did well on all of them until she took neratinib... the dr did give her medicines for her side effect but it was still pretty bad...


    thank you!!

    · Share on FacebookShare on Twitter
  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited January 2020

    Does your mom take loperamide (Imodium) for the diarrhea?

    · Share on FacebookShare on Twitter
  • dnguyen2020
    dnguyen2020 Member Posts: 6
    edited January 2020

    im not really sure... the medicine was prescribed by her dr but I assume it would be the same with imodium....

    · Share on FacebookShare on Twitter

Categories