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Voice Issues


David Sevey

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Hello my fellow warriors on this journey with me. 

Has anyone run into voice issues?  If so what kind of treatments where you offered.  I am going on 6 weeks sounding like Batman or one of the Aunts from the Simpsons.  Doc originally thought viral laryngitis due to fact it went through staff in the office.  Now I am being told no its our old frenemy Cancer pressing on a nerve in my chest and most likely this is it for my voice.  There is no pain just really really annoying and severely limits my ability to communicate without a struggle.

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A "squeaky" voice was one of several symptoms that led to my diagnosis in the first place. I was found to have a gene mutation and was started on an oral targeted therapy drug that shrunk the tumor and as it did the squeaky voice went away. Eventually the effectiveness of the drug began to wear off and my symptoms returned including my squeaky voice, my oncologist switched me to another targeted therapy drug and as it began shrinking the tumor my squeaky voice went away again. It has been a good indicator of how my cancer is behaving. I am not sure if there is any treatment for the voice problem outside of dealing with the tumor that is causing it.

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Thank you.  They want to send me to an Ear Nose Throat doc apparently there is some sort of injection now to help alleviate the problem somewhat.   As for the Cancer my options are thin been fighting for a couple years and have been through 99% of chemotherapy that is available.  On Keytruda currently and unfortunately so far no effect on my Cancer.   

So I will continue keeping my head up in this fight and now doing my best impression of "I'm batman" 

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I will be following up with my oncologist on Monday to see what the consultation with the ENT doctors suggested.  

The voice is livable more annoyance than anything.   I have been through a lot on this journey and really cannot complain, for having terminal cancer I am still able to do day to day things.  I do not look sick, but the best is I have been able to make a ton of happy memories with my family.   I have gone to great lengths to make sure my son as much as possible does not see me in pain.  He is 12 and is fully aware of how serious the situation is overall.  

It could always be worse.  I am thankful for every day I get to crawl out of bed.  Cancer truly teaches us to appreciate life in a whole new perspective.  

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  • 3 weeks later...

Ok, update for you folks.  I have had my appointment with the ENT.  That doc was very helpful and positive they could make a dent in my voice.  They scoped and did determine that there is paralysis on the left side of my vocal cords.  The ENT said they would be able to inject the cord and "plump" it up to allow for a solid connection.  He was specific that it would not be 100% but definitely an improvement over what I have now. 

Then I had the follow up with my oncologist and her PA which I clearly spoke of my unhappiness with the both of them since they pretty much dismissed the problem with oh there is nothing that we can do. 

I have 1 more immunotherapy session with Keytruda, then schedule either a CT or PETS scan depending on insurance.  The oncologist is seeing if there are any trials that I qualify for, if not I have met with my new palliative care doctor.

I am not giving up the fight but for now, my options for treatment are pretty much nil.  I have gone through 99% of the chemotherapy available for my lung cancer. I have tried OPTIVO but it nearly killed me.  I am on KEYTRUDA but so far no effect on the lung cancer.  The oncologist says there are a couple of chemotherapies we could try but the side effects far outweigh the benefits.  

For those of you just beginning this journey do not give up!  Keep your heads up, be your own advocate remember the doctors work for you.  You need to stay positive.  I have been living on borrowed time for over 2 years.  Statistically, I should be dead already.  Every day I get up and smile, thank god for another day to be a father, and husband and roll with it. 

Remember life is not about the beginning or the end... It is about the journey and how we affected people along the way. 

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David - I am glad to hear that there is a plan for your voice.  My mom had voice issues related to inflammation, which was attributed to the trachea stent she had for about 3 months. It was frustrating for all of us.  Luckily when she had the stent removed in October, her voice came back.  I've heard of this procedure your doc is suggesting, it was brought up many years ago when my mom was again having voice issues.  The procedure did not happen because it did not end up being her vocal cords that were affecting her voice, it was inflammation from a neck fusion she had.  I have heard though that the procedure can be very successful.

I am sorry to hear that Keytruda was not effective in stabilizing or shrinking your cancer.  Do you test for a high number of cells that have PD-L1 - more than 50%?  If so, make sure that your docs are sure that any new progression is not due to inflammation or pseudo-progression from Keytruda.  My mom has received 9 doses of Keytruda, the first 6 with chemo.  Her latest CT showed a "thickening" around the area of her mass.  5 biopsies of the area did not reveal cancer and the doc says it looks mainly like inflammation, which is very common in Keytruda.  Prior to the biopsies, her oncologist was preparing us to consider other treatment options.  So I began doing research and it is not all that uncommon for docs to shy away from Keytruda too soon if they see anything that looks like it may be progression.  And more often than not, masses/tumors/nodules/etc tend to show that they are growing during the first couple of months of treatment (usually 4-6 doses).  I don't know if any of this pertains to you, but I wanted to share what I have learned in caring from my mom.

Take Care,

Steff

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Steff,

Thank you.  That is exactly what is happening with me I believe, my next Keytruda will be number 6.  The first 3 were with Chemo.  I will definitely ask my oncologist about the thickening.  I am looking forward/hoping for the voice fix it is more annoying than anything.  

Thanks

David

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I will be keeping my fingers crossed for you. You are at the typical timing for it to be swelling. And if it is swelling, that is a positive sign that your immune system is kicking some cancer butt! :)

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  • 4 weeks later...

Unfortunately, I still sound like Batman.  I had a short stint in the hospital with a double whammy.  I had the flu and pneumonia so that was fun.  On Monday I undergo a Micro Direct Laryngoscopy with Thyroplasty Injection to hopefully help.  The ENT stated they have about an 80-90 percent success rate with the surgery and it should get me back to 70-80 percent of my previous voice.  The only downfall is that it only lasts about a year then either redo injection or possibly a wedge. 

Thank you

David

 

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High David I had larengectomy in 2003 and have got by with practice  could be better but oh well. Funny thing after my first biopsy I now know I  developed  chest infection for six weeks before getting antobiotics .

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