NPC hearing loss side effect & does IMRT really helps to reduce and prevent side effects?

edbravo

Hello all NPC survivors. I was recently diagnosed with T2N2Mo and I am glad to have found this forum. I have yet to get any radiation or chemo treatment, but schedule to have it done soon. My concern is about side effects, especially hearing loss during treatment and post - treatment. Therefore, would greatly appreciate if you could share your personal experience in regards to hearing loss side effects. Is it usually permanent or a temporary side effect caused by the radiation and chemo drugs? and does Intensity-Modulated Radiation Therapy (IMRT) therapy really helps to prevent or reduce the effect of hearing loss or other side effects. How to overcome any hearing loss during treatment and post - treatment? Would greatly appreciate some feedback. Thank you and God bless.   

KTeacher

Welcome

Welcome to our group.  You will find some very supportive people here.  Everyone is different.  From my experience, IMRT was much easier on me than regular radiation.  I have been through this fight more than a few times.  I had Cisplatin for chemo with IMRT the third time.  I had ringing in my ears on and off, now it is almost constant.  I had Cyberknife last September and the tumor was on my skull base and nerve on cheek.  It seems to be constant since.  I don't think that I have much hearing loss.  Are you going into treatment with hearing loss?  Are you afraid taht it will get worse?  Radiation is the gift that keeps on giving.

Skiffin16

Welcome....

STGIII SCC Tonsils...

I also had chemo and IMRT..., 2009.

I suffer no hearing loss from chemo (Cisplatin, Taxotere, 5FU and Carboplatin), nor the 35 doses of rads...

Most people that have any side effects from treatment concerning hearing, is tinnitus from the Cisplatin, some temporary, some permanent. 

I would be more concerned with surviving the cancer and treatment personally..., concerned with side effects..., but you have to survive first.

Not trying to be a smart butt, more so priorities.

No body can really tell what they are going to get out of treatment until it happens...

Some like myself have basically no long tern side effects, or even minimal during treatment.., others it was and still is a battle.

Anyways, my two cwnts for what it's worth...

John

jcortney

I'm sorry you had to be here

But you will find that this is the best place to receive ACCURATE information and great support from all that have gone though what you are about to experience.  I was diagnosed a year ago September with Sq BOT sage IV.  Had three rounds of Induction Chemo and 30 IMRT Rads.  I had some hearing loss when I started (hereditary) and ended up with a bit more loss and tinintus.  Both are irritating, but considering that the cancer seems to be gone, not such a big deal.

You will face more important challenges once you begin your treatment so I hope you won't mind if I give the probably the big three things you need to keep in mind.  I hope you hear them over and over since they are critical to getting though the chemo and rads.

1.  Hydrate, hydrate and hydrate more.  You can't get too much fluids but you will suffer if you don't get enough.

2.  Stay ahead of your meds.  That means take them before you feel like you need them.  In the chemo faze, constipation will be a big hurdle (and very painful).  Never leave off your meds because you are feeling ok and think you don't need them.

3.  Eat.  I was foolish and didn't do the first two and never felt like eating, it cost me 40lbs.  On a 160 lb frame, I looked like I came out of concentration camp.

Please understand, none of this should scare you, but you should keep these things in the front of your mind as you move forward.

Ask questions here, the help you get will astound you.

Good luck,

Joe

CivilMatt

I hear you

edbravo,

Welcome to the H&N forum, so sorry you find yourself here.

I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, radiation & Erbitux).  I have not experienced any hearing loss.

Some have hearing loss for the reason Skiffin mentioned.  I believe there are steps which reduce the chances of damage.

Honestly, getting rid of the cancer was my biggest concern; unfortunately there is no safe and easy fix for that.

Matt

phrannie51

Hello Ed...

Today was a lucky day for you.....you found US!!   This is a great forum for information, and support.....a little family, actually....

I was diagnosed with NPC in March of 2012....T1N2M0......and had 3 Cisplatin chemo treatments concurrent with 35 IMRT radiation treatments.  After rads were over I had another 3 Cisplatin treatments, along with a fanny pack of 5FU.  My ears had started ringing before any treatment, and they are still ringing, but I don't seem to have any hearing loss.  I have never heard that rads helped prevent hearing loss, tho.....Cisplatin is the cuprit when it comes to losing your hearing.  Actally, I've never heard that IMRT helps prevent any side effects....since it causes most of the long term ones that happen.  At this time.....18 months out of treatment, I don't have much in the way of side effects.....only have about 50% of my saliva, and my taste buds are still trying to rearrange themselves.....ringing in the ears, I get charlie horses in my neck, and "ear-cramps".....all very liveable, tho.

p

 

Ruben and Jude

No hearing loss

Ruben didn't have hearing loss, if anything, he had hightened hearing. He was hypersensitive to sound so much so that he had to have special ear plugs made. His treatment was completed in June 2013, and I'm happy to say his hearing is pretty much back to baseline.

 Jude

corleone

Another NPC survivor

I also had T2N2M0 NPC (details under my avatar). Last treatment 1 year and 2 months ago. Cisplatin was my problem. I had a significant hear loss in the high frequency range. I have to use hearing aids in order to understand what I am being told. 

I would suggest that you discuss with your oncologist and have a hearing test done prior to treatment (cisplatin, it that is in your plan). Then after each cycle (of cisplatin), another hearing test. Based on the audiogram, if there are significant losses, they might switch you to carboplatin, which is less ototoxic.

 

Hondo

NPC

 Hi bravo just click on my name Hondo and it will bring you to my thread all about me page. Right now don’t worry about side effects you will get over them and have a new normal, just keep positive and focus on getting better. If you need help we are all here to help you, you can contact me by my e-mail if you like. My first NPC treatment was in 2002 and we did not have all new ways to treat it back then. Just make sure you are getting your treatment at one of the major cancer intuitions and not some local City cancer treatment place.

God Bless

Hondo

Hondo

NPC

I know better then to click the button twice, oh well

 

edbravo

Thank you everybody for

Thank you everybody for providing some good information which will help me get through this. God Bless you.

inittogether2

edbravo said:

Thank you everybody for

Thank you everybody for providing some good information which will help me get through this. God Bless you.

 
Bravo,
Kudos to you joining

 

Bravo,

Kudos to you joining this forum first of all. My husband has 6 IMRT treaments leftout of 36, will finish this Friday and I know he cannot wait! SCC BOT/right Tonsil with MET to neck nodes. No surgery except from first biopsy on neck where they removed 90% of tumor in neck. MDA found primary in tonsil size of grape they did not remove, siad IMRT would be best.

This forum is the best for rookies like you and us. As they say everyone has different "effects" but we were as prepared as could be by consuming the knowledge and advice on here.

The first two weeks were a breeze and we applied lotion faithfully and swished with baking soda/water to get in a routine of doing it, like they say...stay ahead of the game.

By the third week things started getting tough...nausea and just feeling tired. The taste buds went kaput along with the saliva glands, and hair loss where IMRT entered and exited. He didn't want to eat or drink, but the mouthwash compound they made helped a lot to numb the throat so he could take meds and drink strawberry milk mixed with ensure. He also took stool softeners to stay ahead of any problems there.

We are starting 6th and final week today, a week ago he started the pain patch which has been great for him, over the past four evenings he was given fluids by IV and it has helped some, he has considered a PEG, but he is waiting it out, has only lost 18lbs so far.

I would say its a hit and miss trial and error in figuring out what works best, my best advice is to NOT BORROW WORRY! Get informed from all these great people, ask tons of questions, surround yourself with a good support network of family/friends and hit it head on with every positive thought and beat the beast! Best of luck to you, and rememeber you got this!

 

Jody

hwt

inittogether2 said:

 
Bravo,
Kudos to you joining

 

Bravo,

Kudos to you joining this forum first of all. My husband has 6 IMRT treaments leftout of 36, will finish this Friday and I know he cannot wait! SCC BOT/right Tonsil with MET to neck nodes. No surgery except from first biopsy on neck where they removed 90% of tumor in neck. MDA found primary in tonsil size of grape they did not remove, siad IMRT would be best.

This forum is the best for rookies like you and us. As they say everyone has different "effects" but we were as prepared as could be by consuming the knowledge and advice on here.

The first two weeks were a breeze and we applied lotion faithfully and swished with baking soda/water to get in a routine of doing it, like they say...stay ahead of the game.

By the third week things started getting tough...nausea and just feeling tired. The taste buds went kaput along with the saliva glands, and hair loss where IMRT entered and exited. He didn't want to eat or drink, but the mouthwash compound they made helped a lot to numb the throat so he could take meds and drink strawberry milk mixed with ensure. He also took stool softeners to stay ahead of any problems there.

We are starting 6th and final week today, a week ago he started the pain patch which has been great for him, over the past four evenings he was given fluids by IV and it has helped some, he has considered a PEG, but he is waiting it out, has only lost 18lbs so far.

I would say its a hit and miss trial and error in figuring out what works best, my best advice is to NOT BORROW WORRY! Get informed from all these great people, ask tons of questions, surround yourself with a good support network of family/friends and hit it head on with every positive thought and beat the beast! Best of luck to you, and rememeber you got this!

 

Jody

Ringing in the a.m.

I don't feel as though I lost any hearing but for about a year, post tx, I would have a ringing in my right ear when I woke up. Once I got moving around, it would disappear for the day.

HAWVET

hwt said:

Ringing in the a.m.

I don't feel as though I lost any hearing but for about a year, post tx, I would have a ringing in my right ear when I woke up. Once I got moving around, it would disappear for the day.

Welcome

Welcome to the board from another NPC survivor.  During treatment, I did not experience any hearing loss.  I believe midway through treatments, your concerns will lean more towards your health, weight loss and other effects due to treatment.  Keep a positive attitude and before you know it, your treatment will be over, be on that road to recovery and finally, be another survivor.