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Post-treatment stuff I wish they'd told me

sunshine_65
Posts: 15
Joined: Mar 2012

I have found the ongoing "lists" on this website (that everyone contributes to, sort of like a wikipedia work in progress) very useful. I am 7 months out from radiation (33) and erbitux (8 weeks) treatment. These are the main things I'd wish they had told me (but they didn't). This list is probably only relevant to those who have (or will have) the combination of radiation and chemotherapy treatments, and, like everything else on this website, varies alot across individuals. 

1. Mucus production, mouth sores, pain, fatigue can get much worse in the 2-3 weeks following radiation ending. Mucus machine should be ordered as soon as possible when needed (health insurance paid mine).

2. Fatigue continues for 6 months, at least. As in daily naps.

3. Some time after radiation ends, after the major mouth sores clear up, small white pearly sores sometimes pop up on tongue. These are sometimes painful, they expand, then disappear. They can continue for 2-3 years according to my radiologist. At 7 months out, I currently have them nearly constantly. Radiologist informed me they are from recovery of salivary glands. These sores can affect one's ability and motivation for eating, resulting in unexpected weight loss. Nothing can be done about them, other than the usual baking soda/salt mouth wash for temporary relief.

4. For those with metastisized tumors: discoloration on the sides of the neck receiving the most radiation often becomes red and inflamed, itching, and uncomfortable, necessitating visit to cancer dermatologist. Labeled radiation dermatitis. Can become chronic. Some cortisone creams (which can be done only temporarily, due to the side effects) relieve itching and redness.

5. Relief from dry mouth can be unexpectedly slow (7 months' out, still carrying water bottles for 5 minute shopping trips). Biotene sprays are a necessity.

6. Neck pain, stiffness, and other symptoms associated with late-radiation fibrosis can show up 6-12 months following last radiation. My physical therapist prescribed moist heat treatment and exercises. My recent experience with thermalon neck wrap (moist heat neck and shoulder wrap) created brown burn marks and dermatitis, despite following directions to microwave wrap precisely. Be forewarned. Physical therapist exercises seem useful,but they are not easily available online. Another pain in the neck.

7. For erbitux patients & radiation treatment patients: overall skin condition needs daily (up to 3 times daily, actually) moisturizing all over the body. Healing of small scrapes/inadvertent burns, etc., is slower than expected.

Looking forward to having you all add to my list! Happy holidays (submitted on December 24, 2012). Best to you all, Sunshine.

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

Seriously, all good (bad) stuff I have to look forward to.  But I'd rather know than not know.

 

Joe Cortney

Dallas, TX

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

it definitely deserves to be repeated. Please, please, please do yourselves a favor.  Do neck exercises BEFORE it becomes necessary. Don't stand idly by like I did while your neck gets stiffer and harder.  A swallow/speech therapist can show you the exercises.  So too can a chiropractor.  The stiffness will only get worse if you don't do anything about it.  Trust me, you will regret it.

lts's picture
lts
Posts: 75
Joined: Nov 2012

I haven't been doing all I should regarding exercises, but as soon as I turn this off I,m gonna.

Today was 6th day of 33 rad tx,s.  Feeling some stuff. Tired, semi dry mouth but mostly tired. No treatment on Christmas.

Have a great holiday.

Luke

 

 

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

do your jaws, too....open them as wide as you can and hold for a count of 5....Move your lower jaw to the left...hold for 5...then to the right for a count of 5.  I used to carry a small flashlight in my mouth when I walked my dog....that flashlight no longer fits....the tightening of jaws and neck is very subtle until it's too late.

p

sunshine_65
Posts: 15
Joined: Mar 2012

Hi Everyone--good advice and even better to repeat my caveat: not all of us will experience all or even any of the things on my list of post-radiation effects. 

For newcomers--though-- I think the exercise recommendation of Phrannie's is important. My doctors were pretty skeptical about the effectiveness of the tongue and jaw excercises--but I did them anyway, on the grounds they probably couldn't hurt. The post-radiation neck stiffness has gotten pretty bad in my (particular) case, but I couldn't get into see a PT until recently. I am hoping that the new exercises will eventually work.

Thanks so much for the great comments, and, as usual, upbeat attitude. It is good to remember that there are so many amazingly positive outcomes documented here. I am grateful for them all. 

Ginasc
Posts: 1
Joined: Apr 2012

Neck very stiff and sore after radiaton, still on PEG tube.

Whare can I find some exercises?

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

Check the pinned thread called SuperThread..tons of great info.

Also here is a link on there for neck massage and stretching;

Neck Massage & Stretching

But there are others on the SuperThread as well...

Again, welcome,
John

par
Posts: 23
Joined: Oct 2009

You will,can get more usefull information on here than from your doctors.You are going to need it.Sorry but that is just a fact.I have never talked to a doctor that had this ailment or the treatment.Sadly most people on here have

igloo3232
Posts: 4
Joined: Aug 2012

welcome Joe--

The list is fairly extensive and like a lot of people have said, you may not experience all of them. I'm in my 3rd week post radiation. I think last week was the peak of the side effects for me. Lack of mucus, fatigue, problems eating solid food again, mouth sores, and emotions that are just now catching up with me -- I didn't have the time or the opportunity to be afraid the past few months. In a lot of ways, I think the major surgeries I've had were easier to recover from than the radiation therapy. Good luck and keep the faith.

CivilMatt's picture
CivilMatt
Posts: 2863
Joined: May 2012

Sunshine _65,

 

Nice list.

 

The reason I don’t think they tell (everything) is not everybody experiences all the side effects and there is no good reason to scare a person more than they already are scared.  For me it was as if the nurses and doctors were waiting for me to ask or tell them a symptom and they were ready for it.  For example on experiences, I use to load up with mucus along with the best of them, I would stand in front of my utility room sink and cough, hack, spit, gag, dry heave, rinse and spit, but I never required a machine, but I know some do.  Don’t get me wrong, I was often scared to death when I was gagging on phlegm and when I was finished my throat was so swollen it still felt like something was down there.

 

I guess you could break down a list to guaranteed side effects and possible side effects, but the perspective patient is feeling fine when you tell them so it doesn’t quite click.  I did not know what to make of the statement by my rad onc that the radiation might kill my taste buds, but I sure found out down the road.

 

From what I’ve gathered here on the H&N forum, the veterans try to stay upbeat during such a difficult time, but when pushed for information answer brutally honest.  When I was a newbie I hid on the sidelines letting my wife do all the investigating for me, which was probably good I was so scared to death.

 

At 9 months post I am eating, my taste buds are still very shy, I can go short distances (time) without water, I drink many glasses of water a day, I still have Erbitux freckles, I sleep good and have a funny (involuntary) snort when breathing in on occasion (which hasn’t happened in public yet)

 

Merry Christmas to you too.

 

Best,

 

Matt

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

They don't tell us everything to expect, because not all of us get everything.  They can pretty much assure us that our taste buds will quit working, and that we'll suffer a lack of saliva....but from there on they can't tell what we might have to deal with (that, and there are things we deal with that only OTHER survivors can relate to....like the intense itching in my salivary glands)....the rad doc presented radiation as if it were like too long of a day at the beach....like a sunburn....when he really meant "like no other sunburn you've ever experienced in your life".

Today, besides taste fatgue, and dry mouth....the only thing that drives me nuts is the neurapathy in my hands....I drop everything, I have to "watch" my hands tie my shoes, or pick up a glass...cuz I don't know precisely what my hands are doing.  Putting on eye makeup has become a chore cuz I continually drop the mascara, or the pencil.  My handwriting has gone to hell in a handbasket.  Ah...but it's all  better than pushing up daisies. :)

George has a good point, too.  I am SO SO glad I did my neck exercises.....and jaw exercises....all thru treatment, and still do them a few times a week, now.  Keep those muscles working and stretching....

p

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

Sounds like you have either experienced, or hit on most of the major topics, several not mentioned..., but that's a good thing as you probably haven't had them...., yet.

Just teasing...

Like Phrannie, Matt and George have mentioned and yourself... Thankfully most people don't get every possible side effect, and many of the ones you mention are temporary in reality.

Like Phrannie, I too have a hard time putting make-up on, but I can tie on a fishing lure, no problem...Cool

Anyways, welcome aboard, hang on for the ride.

Best ~ John

 

 

 

par
Posts: 23
Joined: Oct 2009

I tried everything and just happened on neosporin spray.Burns  a little at first but healed things much faster than all the other stuff I tried.

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

Also excellent for radiation burns...

Best ~ JG

luv4lacrosse's picture
luv4lacrosse
Posts: 1376
Joined: Jul 2010

My docs also left out allot of the gory details regarding side effects. I asked my docs why they did not include all of the side effects, and the overall comments were, everyone is different regarding the severity of side effects, and really the plain truth is if they disclosed every painfull and depressing detail of all of the side effects up front, they believe some patients might opt not to go through some or all of the treatment.

In the end, I am glad I just experienced them as they came.

 

Mike

Mikemetz's picture
Mikemetz
Posts: 334
Joined: Nov 2011

I don't know the precentage, other than it's small, but some HNC patients get osteoradionecrosis (dead bone from radiation) in the radiated area.  It can come on quickly, or not surface until years later.  For some it's a one-time event, but for others, it can continue for a long time.  Another little-known side effect is the premature development of cataracts from the steriods given to reduce swelling from the rads.

My onco doctor never mentioned much about side effects, other than what almost everyone gets during the rads+chemo treatments as they are happening.  I was OK with that because I din't want to think about  too many what-ifs at that time, and what side effects I would develop were totally out of my control, so I just waited to see what came my way.

 

Mike

 

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I remember my radialogist telling me in an off-handed way that I might experience dry mouth.  I had no idea what tat was and quite frankly probably wouldn't have cared because I was scared $%$^% about having the big "C".  Now I really am pissed that there was never any mention of possible long term effects which have disrupted my life far more that the short term ones.

corleone's picture
corleone
Posts: 145
Joined: Jul 2012

A very nice review of the early and late side effects can be viewed at: http://dribrook.blogspot.ca/p/radiation-side-effects.html

Hope that helps.

 

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

I honestly don't know how he managed to remember EVERY bad thing that happened along his journey.   Every screw up a nurse made, every slight or lack of bedside manner from a Dr....I kept thinking he must have kept a journal, and wrote down everything every day.  Tho I felt for his situation, the book held little in the way of positives.

At this juncture, I'll just be in a holding pattern....sometimes for me, too much information is worse, than too little....especially information full of maybe's.....that's the kind of stuff that keeps me awake at night when the evil "head-committee" meets to disrupt my sleep...LOL.

p

hwt's picture
hwt
Posts: 1843
Joined: Jun 2012

Yes, that was a scary read. I say take it as it comes and deal with it. I didn't have a third of those problems. Why waste all of that energy on something that may or may not happen. If I had fretted over mucus and a burnt neck, it would have been in vain. And post tx I continually got better, regaining all of my energy by week 6. Oh, it wasn't a walk in the park by any means but everyone does not get every nasty side effect. I do agree 100% with doing the exercises, why wouldn't you? I wsh I had found this site and knew to do the exercises early on. 

tonyb's picture
tonyb
Posts: 69
Joined: Mar 2011

I too felt compelled to list all of the side effects that i experienced. and believe me there were a bunch of them,  I am now about 2 years down the road after treatment and

 i am just about back to normal now.  Most everything cleared up after treatment ended. but some things took longer than others. It all seems like it was just a bad dream now, in many ways.

 So i guess what i am saying is, it was good to know some of what to expect, but i am glad that the doctors didn't try to cover every side  effect with me , it would have scared me off.

 anyway, just know that with time, most of these things will pass. Its just part of going thru treatment. Its a high price to pay , but remember this thing is a fight.

   best wishes to you , Tony

 

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Sunshine...great post.

 

It's funny, if you get a prescription filled at your local pharmacy they give you a  6 page booklet on EVERY SINGLE thing that can happen with this medicatoin...LOL....

I think if they just handed you a 20 page book on all the possbile side affects of H&N treatments, said everyone is different, you may or may not experience these and also gave you a "spoiler alert" for those that would rather not read and just wait....it would sure save a TON of calls and or visits to the doctors ...bc when you experience something, then read about it on CSN before you can call or go to your doctor ...you feel better ......this site and you all have saved me many an "uptight" moment and even a few doctors visit .....which says something for keeping healthcare costs down... :) :)

 

Best,

Tim

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