Anyone have weird reaction to chemo involving VOCAL CHORDS??

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Anonymous
Anonymous Member Posts: 1,376
edited July 2019 in Stage IV/Metastatic Breast Cancer ONLY
Anyone have weird reaction to chemo involving VOCAL CHORDS??
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  • jnh
    jnh Member Posts: 120
    edited November 2018

    I am currently undergoing IV treatment with KADCYLA, a chemo (with herceptin) that is for Her2Nu + cancer mets. I have the WEIRDEST thing going on with my vocal chords. When I talk, it sounds like I've inhaled helium! My voice is high pitched, raspy, and just a whisper (quiet). It feels similar to laryngitis. I also cannot cough or burp right. Feels like vocal chords are paralyzed or something. Breathing and swallowing are good, thank goodness. I am trying Benedryl in case it is an allergic reaction. Has anyone had this happen?!?!?! Called my ONC and his nurse said it is possible that it is allergic reaction so she felt I should try the Benedryl, but she had not heard of this as an issue with the chemo I'm on.

    Any ideas!??


    Thanks,

    Julie

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  • JFL
    JFL Member Posts: 1,947
    edited November 2018

    Hi Julie. I have heard of rare cases where radiation or chemo caused nerve damage leading to vocal chord paralysis. Have you had any radiation to the surrounding area in the past or any chemos that can lead to neuropathy?

    You may also want to rule out new lung mets which can cause vocal chord issues in rare cases if a tumor presses on a nerve or vocal chord mets (which is super, super rare), just to be safe.

    I see you have been Stage 4 since 2011. Amazing! Have you been HER2+ the whole time since your mets dx?

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  • Jaylea
    Jaylea Member Posts: 478
    edited November 2018

    Julie, I am in the exact same place. About 4 months ago I started having issues - sounded like I had laryngitis with a raspy, low volume voice. At first I attributed it to pollen, then poor air quality due to wildfires (I live in No. California.) I went on a long-planned trip to Europe and when I got back I had planned scans and talked to my MO. She reviewed results and couldn't see anything obvious, like a met pressing on a vocal cord. She referred me to Head and Neck, and when the doctor scoped my throat, he discovered my right vocal cord is paralyzed. He too reviewed my scans and didn't see any obvious impingement. I'm scheduled for a swallow test next month, which may further help diagnose my symptoms, but won't answer why this is happening.

    There are two current theories being floated. One is a micro-met, too small to appear on scans, pinching the cord. The other is a met on my skull base, which isn't currently in the scan field. I'm still running this down, but in the meantime, it totally sucks.

    I'm glad you're not having any breathing or swallowing issues. Your next step might be to Head and Neck (formerly ENT). Good luck, honey.

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  • jnh
    jnh Member Posts: 120
    edited November 2018

    Thank you for the info! I am looking into those ideas. Will have scans soon!

    I was actually triple negative when I was stage 2. 9 years later, the cancer returned in my sternum and lungs and was ER+ PR+ Her2nu-

    After many treatments, I have a new spot in the liver which I had biopsied. This time it was ER- PR- Her 2nu+! So just last 3 years!


    I am a “transformer”

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  • jnh
    jnh Member Posts: 120
    edited November 2018

    thank you for your reply! I saw an ENT today and my left vocal chord is paralyzed .

    Yes, it sucks

    Did your voice get any better?


    Julie

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  • Jaylea
    Jaylea Member Posts: 478
    edited November 2018

    Wow, Julie, so sorry to hear your news. But we can compare notes throughout treatment. My voice hasn't improved, and my MO has hinted that this may be permanent. Further, I have swallowing and coughing issues. I didn't realize how important vocal cords are to swallowing. Apparently they close up when you swallow to prevent food from going down the windpipe (trachea) and into the lungs. When they are compromised, as ours are, it increases the risk of pneumonia. I'm scheduled for a barium swallow test in December. It can detect problems with the swallow function and, if Dr. Google is correct, any tumors in the throat area.

    You mentioned issues with coughing and burping. I have the same issue. I think it's that the vocal cords are not functioning properly. I'm having a heck of a time with eating in general. Eating anything irritates my throat and causes a coughing fit. I have scans scheduled next month, and until then I'm in a holding pattern, other than trying to treat the symptoms.

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  • yangtan
    yangtan Member Posts: 75
    edited November 2018

    A tumor pressed against my nerve and thus began this big disaster. My voice is weird n gone. Most painful thing is that I can’t take water n must have everything thicken. And suddenly I can’t enjoy my favourite steak and chicken.

    Do you guys have a feeding tube in? I go in to the clinic every week for iv hydration.

    Still I Ma eating less and drinking less and talking a lot less. Recently I started coughing and have lots of phlegm and saliva. Going crazy

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  • Jaylea
    Jaylea Member Posts: 478
    edited November 2018

    Yangtan, seems we are in an elite, weird group. I must say, I never expected this as a side effect. Eating is becoming a traumatic experience. I don't have a feeding tube, but if things continue to spiral downward, I would seriously consider it. I don't think my friends and family realize how heartbreaking it is not to be able to talk well. It's embarrassing at restaurants - my husband has to order for me. Ugh.

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  • Jaylea
    Jaylea Member Posts: 478
    edited February 2019

    Wanted to bump this thread in case anyone else is having issues. Julie and yangtan, you're in my thoughts. My right vocal cord is still paralyzed, and since my last post my ability to eat has completely gone out the window. I went from an occasional upchuck to upchucking solid foods 98% of the time. Thank God for calorie shakes. Nobody knows if the vocal cord paralysis is related to the GI issue. All testing has come back inconclusive so far. I did get a second set of eyes on my scans and discovered a tumor in the neck near the vocal cord. My MO is taking it to the tumor board. Hopefully they'll decide it can be treated.

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  • Gumdoctor
    Gumdoctor Member Posts: 675
    edited February 2019

    Hi Jaylea,

    So sorry to hear you are still dealing with this. Hoping and praying they can treat this new tumor and the cord paralysis will reverse.

    I have this in my favorites group because I had a few episodes of feeling like my throat was closing up. These have been only intermittent so far.

    Hoping the best outcome for you.

    Gumdoctor

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited February 2019

    I am sorry to hear about your paralyzed vocal cord. The same thing happened to me due to lung mets. I also came down with Horner Syndrome (droopy eyelid, inability to pers[pire on one side of the face) for the same reason.

    The good news is that there is a vocal cord bulking procedure that can be done on an outpatient basis to improve the voice (link below). Also, if your treatment works on the mets in the lung area, it's possible to regain your voice fully.

    It is terribly hard to lose one's voice, as it is a key identifier to our persona. I truly hope your voice improves!

    https://www.mayoclinic.org/diseases-conditions/vocal-cord-paralysis/diagnosis-treatment/drc-20378878

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  • Jaylea
    Jaylea Member Posts: 478
    edited February 2019

    Bestbird, you are so right. I especially miss singing, full throated, in the car and in church on Sunday. Thanks for the link, I'm hopeful for some resolution.

    Did your vocal cord and Horner Syndrome resolve as well? I sure hope so. You're one of the OG warriors on these boards!

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited July 2019

    I have a medistinal lymph node that involved and getting worse, not responding to TX. jnh told me about losing her voice. I cannot imagine. Which chemo did it finally respond to? I'm getting worried about this area. I can see how it can disrupt so many major functions so easily. I'm having hiccups and gravelly voice. How big does it have to get to press on the nerves? Any information would help me. I also have liver mets that are much worse and lung mets. Xeloda just failed.💞

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  • jnh
    jnh Member Posts: 120
    edited July 2019

    Grannax2, Hi, just saw your post.

    I am so sorry Xeloda is not working and about your vocal chords.

    On the vocal chord issue, I would start by going to an ENT. That doc can do a procedure at your first visit in the office to tell you status of your vocal chords. It's a weird test -they put a scope down your throat through your nose, but they numb you first, so it doesn't really hurt. Just feels weird. That will tell you if you have paralysis or not.

    Once I was diagnosed with the left vocal chord paralysis, we first had to rule out brain (leptomeningeal disease) mets with scary tests. But, it was not that, thank God!

    My mediastinal lymph node was 4x normal size and we decided it must be pressing on the nerve that goes to vocal chords. So, my oncologist recommended a radiation oncologist-I went and we zapped the mediastinal lymph node with radiation every day for 2 weeks. That, combined with the IV Kadcyla I was on helped shrink the mediastinal lymph node. My vocal chord is still paralyzed, however.

    I decided to try speech therapy this summer -and it has been like a MIRACLE! I could tell a difference after 1 visit and 2 days of doing the exercises!! I have my voice back and sound like myself again!! Also, aspiration and choking is almost completely gone! Still get hiccups. I highly recommend speech therapy!!! It strengthens the muscles around vocal chords helping them compensate for paralysis!! I have to do weird vocal exercises every day, but totally worth it!!! If this does not work, there is a surgery that can help.

    On your progression in liver and lungs, I would ask if a biopsy is possible. Sometimes the pathology changes. Mine has changed 3 times! But this could make you eligible for different treatments/drugs!!

    Feel free to email jhipple@wayhipstudios.com if you'd like to chat/text some time about all this-I can give you my phone #.

    Keep fighting!!! You are my hero!!

    Julie

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited July 2019

    jnh Thanks so much for the info. I was wondering about radiation. It sound like a scary spot to radiate but if you did it I can do it. Ill ask my MO today. I was was hoping there was a local treatment. For it. If so, I can have another local TX to my liver. Y90 was so successful for me before. Mets were inactive for 18 months. I had a BX of my liver mets in December. They were sent to Tempes only showed ESR1 with possible TX of faslodex. I'm very encouraged by your words. I guess my symptoms might indicate that mine is already affecting my vocal chord but my MO didn't say anything.


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  • jnh
    jnh Member Posts: 120
    edited July 2019

    Grannax2, Radiation was easy-peasy compared to chemo! You can do it, no problem!

    I have to look up Y90-not sure what that is...

    Praying for you! Hang in there!

    Julie

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited July 2019

    jnh y90 is radioembolization to the liver. It's a local procedure. It's done by interventional radiologist who goes in through the groin and inserts high powered beads/resins directly to the tumors using yitrrium 90. My Dr used SIR Spheres Microsheres.

    My doc still hasn't called me back. Grrr

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