Stage IV Members: Please advise!!!

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shgraser
shgraser Member Posts: 8
edited July 2019 in Stage IV/Metastatic Breast Cancer ONLY

My best friend was put on Afinitor and Exemestane about 3 months ago. She immediately developed pneumonitis(?) and had to stop the meds for two weeks. Her counts were down during this as well. She took heavy doses of steroids to help combat the effects the pneumonitis was having on her lungs. She can't breathe and its horrible to see her like this. She's back on the meds now and was given two inhalers but they aren't helping. Does anyone know of anything she can do to relieve the symptoms she's having with breathing, coughing, etc.... She is also considering going to Tiajuana for treatment that is alternative to traditional meds. I am at a loss how to help her! PS She was previously on Ibrance for 3 years after being diagnosed stage IV. She stopped responding to that. I am so sorry to post here but I'm desperate for information.

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2019

    Hi Shgraser and welcome to Breastcancer.org,

    We're so very sorry to hear about your friend and the complications she is having. We hope someone weighs in soon with some thoughts on how to help manage the pneumonitis. What are her doctors saying is an option to alleviate her symptoms?

    Sending positive thoughts to you and your friend!

    --The Mods

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited June 2019

    My understanding is that some people on that combo of meds suffer severe lung issues. At this 3 month mark it is probably time to discuss a different treat if there are not other reasons for the lung issues

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  • shgraser
    shgraser Member Posts: 8
    edited June 2019

    They have stopped the meds twice to do a heavy dose of steroids for about a week. She gets freaked out stopping the meds. They have also given her two different types of inhalers both of which do not help. She is now back on steroids without interrupting the meds. She is planning on seeking a second opinion after her next scans then possibly going to Tiajuana for alternative treatment.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited June 2019

    I would seek a second opinion sooner. I don’t understand why the oncologist seems to want to keep her on afinitor in the face of such serious side effects and the need to interrupt treatment. I think you said on another thread that your friend has already been on Ibrance and letrozole. Has the doctor not suggested Faslodex? Abemaciclib? Xeloda? These are all typical next steps and usually well-tolerated. Based only on what you have written, I think something is not right here.

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  • pajim
    pajim Member Posts: 2,785
    edited June 2019

    shgraser, I too got pneumonitis from Afinitor/Aromasin/Ibrance. Yep, all three. We immediately stopped all the meds and I took steroids for a week. Cooled things down.

    It actually took 2+ weeks to get rid of the pneumonitis. And that was it for A/A.

    What I'm actually saying here is your friend needs a change of [cancer] treatment. It's like stopping a clinical trial for an adverse event. She's having a major adverse event. Alternative treatment isn't going to help so long as Afinitor is blowing up her lungs.

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  • shgraser
    shgraser Member Posts: 8
    edited July 2019

    Ok so she is now starting Xeloda. Liver mets are spreading. Also leaving for Tijuana in about 3 weeks to see Dr. Castillo. If anyone can share some insight on the alternative treatments in Mexico let me know. I'm sick over this. My friend is hurting and there's nothing I can do

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  • pajim
    pajim Member Posts: 2,785
    edited July 2019

    I don't know anything about alternative stuff except to be very careful.

    I do know about Xeloda. It's way way easier to take than A/A, depending on the dose. A lot of women have had major liver tumor shrinkage whilst on it.

    If she's taking more than 3000mg 14/7 she should talk to her doc. There is no one true way with Xeloda.

    You're trying to be a good friend. Sometimes I think this disease is harder on friends and family. Some times there is nothing you CAN do except to be there. If you want to do something practical, buy her some hand and foot cream.

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  • shgraser
    shgraser Member Posts: 8
    edited July 2019

    Thank you kindly pajim! I'm going to read more about the Mexico doc to see what reviews may be out there.

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