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Long term effects of radiation/ chemo

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

have been out of treatment for almost three months. Just had my first pet scan and it was negative. I had a partial neck dissection and removal of one lymph node under my jaw left side. My primary was diagnosed as occult primary, so they radiated everything in my head and neck and I had three chemo treatments of cisplatin. i was doing fine, just started to get back to normal and out of nowhere my hearing is starting to go. Inner ear is filling with fluid. Went to ENT and said it was an infection and drained he ear. Hearing continues to get worse.

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

Does anyone know how long it takes for the thick mucous buildup in the throat take to go away? Will it go away? 

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Welcome to our board. My mucous has been an intermediate problem and has been constantly with me for a year now. I think others on ths board will have a better insight into the mucous challenges. Rick.

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

Roar,

 

The mucus has subsided greatly for me.  Everything gets slowly better.  It is funny how we can have a throat full of mucus and a mouth as dry as a desert.

 

I was stage IVa, SCC, BOT , HPV+, 1-lymph node (surgery, rads & Erbitux)

 

Welcome onboard the H&N train.

 

Matt

phrannie51's picture
phrannie51
Posts: 3628
Joined: Mar 2012

you've just joined the best HNC forum on the internet!  Another member's husband is going thru stuff with his ears right now, also....he too had fluid build up going on.  You're only 3 months out of treatment....which seems like a long time, but I'm finding that recovery keeps going for months and months and months.  At three months I was still very tired, still having trouble eating things...the regular stuff.  I think we have to give it a year, and then see where we are with hearing, neuropathy, taste, saliva and the rest of it.

There are way smarter people here than me, tho....you'll be hearing from them I'm sure.

Congrats on getting thru the tunnel and out the other side.....long journey for sure.

p

SeaUSoon
Posts: 5
Joined: Jan 2013

I had similar problems. Right ear had infection and loss of hearing at about 2 months post treatment.  Infection kept getting worse due to compromised immune system and finally went MRSA.  ENT was not aggressive enough with treatment and I ended up with total loss in right ear and 50% loss in left. Make sure you ENT is aggressive with strong antibiotics and antibiotic ear drops. 

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

I was Roarrrring... susel

What you describe is not umcommon with many... Ear wax build up after rads, many here have had issues, that and the mucous you describe are both common and usually temporary.

Like Matt said, it gets better, but the healing process is slooooooow, measured in months usually, and even on occasion years. More than likely you're going to have all kinds of mystery, aches, pains and things going on..., most will no doubt put anxiety in to your life... But for the major population here, you're going to make it and be kicking around for a long while.

As Phrannie said, this is a great site, with many awesome people...

If you get a chance, check the first thread on the H&N Forum, called the SuperThread..., tons of great info and links there..

Oh, and for SUS, though it's always good to be pro-active, I can only think of 1-2 people on here that have had issues with MRSA, so that I don't believe is a very common thing for most here.

Big welcome to you as well..

Best,

John

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

What is mrsa and Ned ? And thank you everyone for the welcome? 

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

 

MRSA (methicillin-resistant Staphylococcus aureus) are strains of bacteria (Staphylococcus aureus) that are resistant to powerful antibiotics

 

NED =  No Evidence of Disease

wrhbounds's picture
wrhbounds
Posts: 38
Joined: Jan 2013

I know how you feel. Treatment is over and let's get on with life. The mucous will get better SLOWLY. Its takes time or it did for me.  Keep a positive attitude and remember that you are in a marathon.

Bill T2N3M0 SCC

14 year survivor

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Primary that is!

Hi Roar. Congrats on meeting NED! I hear he's a great guy! Unknown primary here too. Tx N2b Mo Stage IV. 7 rads (of 30) and 1 chemo (of 6) into treatment and about to start week two. Hope they get that ear cleared up!

The folks here are great. There are plenty of war stories to share :) 

"T"

Hard12Find
Posts: 201
Joined: Sep 2012

Roar,

I too am 3 months out with a clean PET scan, I have about 40 -60 % hearing loss due to cisplaitin chemo treatment. I didn't have infection or anything, the hearing was just gone. I am hoping to be fitted with hearing aids fairly soon. I had mucus problems, but mine is starting to get better, and if anything I am kind of starting to battle dry mouth and throat. Are you eating by mouth? I noticed improvememnt in the mucus when I started really pushing myself to eat by mouth...

Jim

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

Yes I am eating by mouth but my taste is about 60%- like I told my wife the other night, I no longer enjoy eating but rather eat because I have to. I lost 40 lbs during treatment. I was almost 200lbs and am now almost 170. The good news is m diabetes is no longer an issue. If I can get my hearing back I think I can manage the mucous issue. I also have this flap of skin under my chin that I never had- do you have the same issue. Will exercise take care of this?

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

More than likely what we refer to as The Turkey Neck Club....

If it's the same as many a few months - year post Tx, the lymphatic fluid drainage pathways become damaged durng treatment, rads specifically. You can try massage, Marine E5 has a method and procedure that's on the super thread...and eventually most if not all will go away as the glands find or establish new drainage paths...

Somewhere down the road you might find yourself bending your head slightly forward, chin touching the chest..., then Zowie... A sensation like an electric shock rnning down the back of your neck, down your spine, maybe even your arms and legs...., LOL... another gift.

L'Hermette's Syndrom...

It to will go away eventually...

Best,

John

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

I've had issues with my left shoulder/arm since the surgery on Feb. 7th.  It's been weak and limited in movement. Last week, I started getting an awful pain when I move a certain way (Me: Doc,  it hurts when I do this... Doc: "Then don't do that!"). It feels like I'm being stabbed with a hot knife in my shoulder. Docs think it's my nerves coming back as well as my body compensating for the left side weakness,

Whatever it is, I'd like it to go away! 

"T"

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

You're just going to have to live with it I guess, until something hurtz more...

Sorry, I know where you're coming from... Different aches, pains, bumps and bruises...

It's the "New You", the one that feels like someone smackin the crap out of you, because you're kickin Jack's azz...

JG

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Whatever you do don't stop using your arm . Mine hurt just like you discribe so I quit using it much and  the pain got worse ! Seemed like I lost more use of my arm. I wound up calling my onc and the Nurse said it was hurting worse because I wasn't useing it . I wound up having to go to Pt , and that helped the pain but I still have some trouble useing it .

 

Peggy

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Thanks Peggy,

I'm all over it. I have an appointment the 4th of April for a PT evaluation. We'll see where we go from there. 

I'm still doing the exercises they gave me but I'm not feeling/seeing much improvement. It's been painful all along and last week the burning knife pain that literally takes my breath away started. It will be challenging to do the PT during treatment but I have to. As you said... "don't stop". I have to regain 95+% use of that arm to play guitar correctly without fatiguing. 

"T"

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Roar,

Welcome to the neighborhood, my husband is also having fluid in the ear issues (10 weeks post treatments, 1/15/13 was his last tx). The ENT Surgeon said it was definitely the rads. That it is swelling. They are almost positive it will subside. However, my husband was just mr. miserable with his clogged ear. I have a 20% hearing loss, so with him not hearing, and a lack of enunciating his words.. we were headed to a bad communication issue. Fortunately the Doctor sympathized and inserted a tube into Dan's ear drum - Immediate relief, and fortunately his hearing returned.

My hearing loss is due to needing tubes in my ears when I was little and my parents were afraid of the thought and thought they would hurt me.. so instead my ear drums broke regularly. When the fluid is behind that ear drum, it just sounds like your head is in a fish bowl, doesn't it?

I wish you the best, and don't give up.. everything in recovery seems to show up for a couple of weeks, and the symptoms move on to something new..

Wishing you the best..

Kari

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

Your husband and I may be related- I to am sometimes known as mr. Miserable

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Roar,

Welcome! Everybody is different, but some things seem the same. I lost most of my hearing 10years later in 2010(my dx was NPC III 35or 37 rads and concurrent cisplatin and 5fu, and three 3 weeks 24hr chemo 1 a month as what they called safety net, also have partial radical neck dissection)

It seems like most of my side effects happen years later than should have, I didn't lose any teeth till 2008(get floride trays) and lik,e I said hearing in 2010, and dysghagia in 2012. The mucus has been with me since treatment improved but still there till today, ears drain constantly and occassionally have to go have wax sucked or pulled out, and the ringing! I don't know if anyone escapes the ringing, at first I thought it would drive me insane, but now I see it as white noise.

Just take your recovery as it comes, they are crosses to bear, but what we got along with them is LIFE! Enjoy eeveryday despite the side effects.

God Bless,

Rachel

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

Thank you Rachel. So much to comment on:

1- did you have tubes put in your ears? 

2- the dentist gave me the trays when I started treatment but towards the end of treatment m mouth was so sore I couldn't do it anymore- are you saying I should continue fluoride treatments life long?

3- the mucous- you think it's just a part of what we need to get used to? So you have a constant salty taste in your mouth?

and the ringing - when I mention it to my doctor they all act like they never heard of this before 

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

Thank you Rachel. So much to comment on:

1- did you have tubes put in your ears? 

2- the dentist gave me the trays when I started treatment but towards the end of treatment m mouth was so sore I couldn't do it anymore- are you saying I should continue fluoride treatments life long?

3- the mucous- you think it's just a part of what we need to get used to? So you have a constant salty taste in your mouth?

and the ringing - when I mention it to my doctor they all act like they never heard of this before 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Roar,

1. No tubes in ear, they drain daily on their own so not needed

2. When salvia or whatever it is comes back its thick and creates thicker phelm in my throat. I am not saying it will be life long for you, for me its been there the whole time.

3. Salty taste goes away. I don't remember how long, but it did go away completely and I started to like a few things and couldn't tolerate others, I could eat only raw, onions, green peppers and broccolli(couldn't before), but I lost ability to eat a lot of fruit: strawberrys(unless whipped cream(they burn my tongue), oranges and juice, apples, grapes I can eat canned peaches pears bannanas watermellon and that's it.

4. Yes use dental trays everyday, if you can get RX toothpaste and keep sticking 3 fingers in your mouth couple times a day, and get teeth clean every 6 months. I held on to my teeth for 8 years before loosing any and at 12 still have 7 or 8 mine.

5. Ringing UGH, your ENT should address this its Tinnitis or something, I've seen quite a few people mention it on here.

Ask anything you need!

God Bless,

Rachel

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Some do have tubes, but it's not the norm...

As for flouride, pretty much everyone here uses some form, be it trays, Prevident, I use Oral B STOP.. But it's pretty much a long term use..

Not all keep the thick mucous life long, that's more uncommon than commor... My self and many here have regained nearly all of their saliva and taste back. It's just a long slow road for many... Myself the saliva took sevral months for it to be significant, two years to completely get back all taste.

Like Rachel mentioned..Tinitus. That is the ringing, and more than likely Cisplatin induced..

Communication with your MD's is key, and sounds like you are doing that. But if they aren't up to speed on a few things, you can always seek other opinions or care. You know you better than anyone does...

Best,

John

Duggie88's picture
Duggie88
Posts: 528
Joined: Feb 2010

Three years out (matter of fact this saturday is exactly 3 years)and clearing my throat has become one of my trademarks. Although it has gotten better, I can't play hide and seek with the grandkids to long or else I have to clear my throat and give myself away. At night forget it, I still have a radiant glow that makes me "IT" more than I deserve.

 

All kidding aside, They told me whatever I didn't get back or change within a year I most likely will be stuck with. Well, like I said this Saturday will be 3 years and I am still enjoying recooping, especially my voice which before cancer was really bassy.

Long story short, enjoy your recovery it is different for everyone and everything you had and enjoyed before is still fare game.

Enjoy the day

      Jeff

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Jeff,

Time is on myside... Rolling Stones...

I can tell you, that I had improvements in both taste and saliva for two years plus... So while the MD's might give you those numbers.... Default to the;

"We are all different"...

Best,

John

Duggie88's picture
Duggie88
Posts: 528
Joined: Feb 2010

We are all individuals. My wife rolls her eyes and thanks god there is only one of me.

Psssst..............I never told her about the voices.

 

      Jeff

 

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

You might be part of my Abi-Normal Clan after all....

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