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Talk to me about your experience after chemo/rads...

JustJulie
Posts: 2
Joined: Dec 2012

My mother has been going through the same journey as many of you, but she has been doing it mostly alone. I have read this site off and on, but she has always reuffed my suggestions that she come here, much to my frustration.

She was treated for stage IV throat cancer at MD Anderson in Orlando, starting last January. She had induction chemo, then a round of concurrent chemo and 35 rads that ended in July. The three month PET scan wasn't clean due to thrush, which has been persistent and painful. She has been on a PEG since January and doesn't seem to think she can work her way off of it. She is not doing her swallowing exercises. When we ask why, she says she doesn't feel good, and it's obvious she is just generally feeling poorly. I think she feels like she's the only one who ever finished treatment and felt crappy for a long time afterward.

If we push her to try to exercise, she says that we don't understand how she feels. But I know that you guys know how she feels. More than anyone else in the world, you guys do! So I thought that maybe I could ask that you respond in this thread, and I'll print it out for her. Maybe she'll come here to the forum later for support, but even if she doesn't, I hope it will help her feel less alone in her experience.

Thanks for any insight or encouragement you can provide.

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

JustJulie,

Welcome to H&N central, the place where many of us have felt like your Mom. I have been coming here since January, just prior to my first treatment. Or should I say my wife did, I was still in shock and my head was spinning from cancer overload.

The first thing I learned was to never quit swallowing, even if it is tiny sips during the worst times. As painful and difficult as swallowing may be, your mom should do her swallowing exercises (under advice from her doctor). The only way to get rid of the PEG is to demonstrate you can get enough nourishment by mouth. For me, I spent 7 months (gladly) drinking smoothies because food felt and tasted awful. At least drinking my food allowed me to pop the PEG and getting rid of the PEG was a milestone.

I’ve often mentioned on this site that I come here because everybody can identify with what I am saying about H&N side effects.

Best,

Matt

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

Even if it's just for water. She REALLY doesn't want those muscles to take a hike because once she starts feeling better, she's going to want real food...and I'm sure she won't want to have to go to speech therapy to learn how to swallow all over again!

Everybody heals at different rates. Thrush is no picnic! I've had reoccuring thrush since I finished chemo at the end of August. When it comes on, it hurts to eat, so I do understand her reluctance to eat much. Have her Dr.'s tried Diflucon for it (it really works for me)...also, chewing acidopholis pills has an effect on thrush. If she's using her PEG because her mouth hurts, there is also Magic Mouthwash to numb it.

I finished my rads the middle June, but had 3 more chemo's after (these were FAR worse on my mouth than the rads)...I really wanted to get back to normal, tho...so started eating around the middle of September, even tho I couldn't taste, and my mouth was stingy and tender . All I could eat was Progesso soup, with thick VERY buttered french bread dipped into it.

As for exercise...before treatment I walked 3 to 5 miles a day...my endurance slipped so badly during treatment that I could barely walk across a 2 acre pasture (one way). As soon as treatment ended I started building up my strength by simply walking...getting out and going half way down the block maybe all she can do, but it will help (both emotionally and physically). I got silly in July and got a puppy, so I basically forced myself to get up and get moving.

All that being said...I am still not up to where I was before I got sick. It takes quite a while for blood to build back up (which is the reason for fatigue)...I just had a CBC last week, and I'm still pretty anemic.

So...in essence...Swallowing is HIGH priority...eating real food does make a person get physically better...and exercise works on both the mind and the body...

p

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Many people will tell you it took them around a year after treatment ended to feel more themselves. Most of us will admit that we were frustrated and at least a little depressed to discover that we weren't recovering as quickly as we'd hoped after treatment. It's not just a physical thing - it's mental, as well. Most of us spend three months in a sort of Twilight Zone, and come out the other side feeling "less than" in many ways. Like your mom, I had induction chemo before chemo rads, so that nearly doubles the time in "the zone". So, when it's done, you have to take stock of everything, and see where you stand, physically, mentally and spiritually. And this can change from day to day - it can change several times a day, too. Some days, it's hard to see where you are, and easy to start wondering what the "new normal" is that people talk about, and if you have to accept a new normal, or can expect to be "good as new", or feel grateful for the progress you're making, even though you'd hoped for more.

MANY here do not get a clean PET after three months. It took me 13 months after chemo rads ended to get a clean PET.

As for eating, I was one of the lucky ones. I got my PEG removed five months after treatment ended, and hadn't used it for calories for a while before the removal.

Oh - I did mention "depressed", didn't I? MANY of the people here are, or have been, on medication to help with depression. During and/or after treatment. No shame in realizing you might need help, and asking for it.

Mikemetz's picture
Mikemetz
Posts: 355
Joined: Nov 2011

A lot of times in life we just need to get our minds to tell our bodies to do things even when the body doesn't want to. Recovering from HNC treatments was an extended period of that time for me, and I'm sure many others. There are so many things that I just didn't FEEL like doing, but knew deep down that I NEEDED to be doing them. Walking was a good example. I knew that any kind of exercise would be good for me, but the last thing I wanted to do was put on some walking shoes, bundle up, and get out the front door. So my stubborn mind forced my "poopy" body out the door, and my first walk was to the end of my cul-de-sac and back--with a rest at the turn! My mind forced my body to do this for a few weeks, until my body started to feel good about it, and I looked forward to those walks, which had gotten a bit longer by a few steps each day.

Maybe if you can get your mother to pick one thing to do every day, even if for a very short time or amount, she might start to feel better from that, and eventually she'll want to do it on her own.

Mike

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

In many ways she is right...you just don't understand...

I was STGIII Tonsils, also induction chemo (Cisplatin, Taxotere, and 5FU, the like her, seven weeks of concurrent weekly Carboplatin, and 35 daily rads....

I am now over 3 plus years out of treatment, fished up June2009...

Oh, BTW, also in Florida, over in Lakeland, about 50 miles or so from you.

Many people that loved and cared about me, wanted me to feel better than I did, or faster I guess, LOL....

The first few years do have many ups and downs, and quite frankly, there were many days that I just felt like crap....

Those are far and few between these days...

I do have 100% of my taste back, nearly 95% of the saliva...and actually, I have felt pretty good for awhile now.

That's not to say tha I felt bad everyday, just many days, I didn't feel my best.

Not to mention many days with anxiety, and doubt...

My ENT assured mt, it's avery hard road, many aches, pains, sore spots and just dotn't feel good days...

I can pretty muc assure you, that through time, eventuall;y she'll start feeling better more days than she feels like crap.

Welcome to the forum, and hope to see you and your mother here often.

Best,
John

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

Have to admit I had to combat thrush 4 times, my tongue burned so bad when I ate that it was easier to use my g-tube when I had it. The last time, they gave me wafers which were much more convenient and I never missed a dose that way. If it weren't for my surgeon telling me to never quit swallowing, I don't think I would have gotten my water down like I did. He told me if I could not swallow to call him immediately. Scared me. Nutrition and hydration are key to your Mom's recovery.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

I wanted to make John's point too--actually your mom isn't wrong. none of us really understands what she's going through.
while we all have some things in common here, there's a lot of stuff we don't share.

I've been through a treatment ringer of my own, but I don't understand anything about induction or concurrent chemo--only what I've read here. don't know anything about the ordeals of swallowing exercises. if your mom is depressed, that's mostly out of my realm.

still, we hope she'll pay a visit here sooner or later. she will find people who understand at least some of what she's going through.
and maybe she'll take it to heart when we say that even a little bit of exercise can help make you feel better! we have picked up a few things along the way, lol.

JustJulie
Posts: 2
Joined: Dec 2012

Thank you all so much! You guys are awesome, and this is exactly the sort of thing I was hoping for... some of the "we've been there, too" assurances that I can't provide. I'll print this thread and give her a copy, and I'll be around, looking for useful advice. I'm hoping she might start visiting here, too. Thank you all again for your time and the generosity of your advice!

Sparky boy
Posts: 3
Joined: Dec 2012

Just Julie, we all know how your mum feels,but there is a common thread here we all forced ourselves to overcome the discomfort,so as not to let this terrible desease beat us,I used to suck on a wet cloth with ice cubes wrapped in it and gradually worked up to sucking on a ice cube and graduating to small sips,the sucking action seemed to help with the swallowing function,i set myself goals with walks, two neighbours driveways then three ect, untill i could go to the end of the street and further you will be surprised how quick you get stronger but every one is different so just take it slowly and she will get there and you start to feel like eating,so hope this a hilp and good luck and god bless,cheers.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

sucking on a wet cloth wrapped around an ice cube is a GREAT idea.

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

for you mother as well for all of us.
My Dad is 3 months post treatment for Base of tongue (Oropharyngeal cancer) with multiple lymph nodes. He had radiation and concurrent chemo. He still does'n feel good due to pain in his throat. He did not have PEG tube but it is very hard for him to swallow. Mom is forcing him to eat every couple of hours small portions. He is afraid of every meal. He does not know if the pain is still that strong or is it more in his head (fear). So, we all there struggle on our own way. Many people gave you great advice here. They're true angels and helped me very much from the very beginning of this path.

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