Hi all. I have squamish cell cancer of of the larynx that [...]

HI AUNTIE MAME,
STAY POSITIVE, ASK QUESTIONS EVEN IF YOU THINK THEY ARE SMALL OR SILLY & HAVE A GREAT SUPPORT TEAM. AN ORGANIZER AND OR JOURNAL IS ESSENTIAL ! DO YOU HAVE A FEEDING TUBE? HAVE YOU HAD A HEARING TEST DONE RECENTLY? FINDING A MASSAGE THERAPIST WHICH IS SPECIFICALLY TRAINED IN LYMPH NODE MASSAGE COULD PROVE VERY HELPFUL FOR COMFORT. AQUAPHOR WORKED BEST FOR EXTERNAL RADIATION BURNS, SHOULD YOU NEED IT, BUT DO IT RELIGOUSLY ! SHOULD YOU HAVE ANY SPECIFIC ?? OR JUST WANT TO CHAT ANYTIME, PLEASE REACH OUT -- REALLY !!! BEST REGARDS ...

First of all,thanks for responding, there is something very special about those who reach out to help another. I had a hearing test this past Friday and will have one every friday during the treatment. I've been instructed to use both aquaphor and aloe vera gel twice every day- making sure to use them more than 4 hours before my treatment and again more that four hours after my treatment. They do expect me to burn, I am one of those fair skinned sunburn easily people, my husband often says I'm so while I glow in the dark. 🙂 No feeding tube - yet - but am well informed and have been told to expect to need one during the treatment. I email myself every day...my idea of a way to journal and I keep a drug log near me. I am afraid that during a fuzzy headed moment I may take something I shouldn't twice and miss something I need. I've also been warned that I may lose my hair, I've decided that if it starts to happen, my husband will use his clippers and buzz it off. One of my daughters reached out and touched my heart by telling me if I do so, she will do so as well. My children, my grandchildren and my extended family and friends have been amazingly thoughtful and supportive.

I can't say I'm looking forward to this. But, I can say I have worked hard at embracing the idea that I MUST do this. I have named my tumors...as far as I'm concerned they are AL (Alien Lump) and his groupies. AL is by far the largest of the three. They make horrible music and they MUST GO by any means necessary. And I've assigned them a theme song, I play it every day. It is Radiohead's Creep, because they ARE creeps and then DON'T belong here. We have framed a quote by Winston Churchill and keep it next to our bed - When you're going through hell, keep going. My plan is to keep going. Again, thanks for the reply, I will do my best to pay it forward.

@craigandme

Hello Auntie Mame,

Most oncologists are not experts about the side effects of the chemo drugs they administer since it's not their primary focus.

I also had squamous cell carcinoma and was prescribed Cisplatin as one of the drugs in my chemo cocktail.

Cisplatin may cause hearing loss in one or both of your ears. I want you to be aware of this so that your family-care physician and oncologist don't start prescribing steroids because they're unaware of the relationship between Cisplatin and hearing loss. (This relationship is becoming more well known now than even five years ago when I had my treatment.)

I had complete loss of hearing in my left ear during chemo treatment. My oncologist was unaware that it was the Cisplatin. My family-care physician was unaware that it was the Cisplatin. She prescribed steroids in pretty large doses until I stopped taking them because there was no hearing improvement (I don't like taking steroids).

Chemo patients have enough to contend with - they don't need other side effects pig-piling on from other unnecessary treatments.

Incidentally, I'm proud to report that my very erudite chiropractor who is constantly reading and learning was the one who sent me a link on the relationship between Cisplatin and nerve damage so that I finally knew why I was deaf in my left ear.

Happily, soon after chemo, I got my hearing back in that ear, but I do have Tinnitus (ringing) in that ear and some very minor hearing loss which hasn't gone away. But at least I can hear!

God bless you and keep you, Auntie Mame, during this uncertain and often fearful time.

use plenty of moisturising cream (oil free)seyeral times a day as the radiation will cause what is really bad sunburn after about two or three weeks.when you find that you can't swallow solid food make ice cream (made with milk and cream)part of your diet .it's cooling and helps to keep your weight up.

HI AUNTIE MAME --
I WAS JUST WONDERING HOW YOU WERE DOING? IT'S BEEN A COUPLE OF MONTHS NOW -- YOU ARE IN MY THOUGHTS & PRAYERS --

Hi there!!! I know this is an older post but I wanted to check in with you and see how you're doing.