Question About After Treatment

kmadlom

Hi all,

My wife finishes treatment Monday, May 7. That will be the end of 30 rads and 6 chemos. We keep hearing that the two weeks after treatment are the worse weeks of all. Is that true? We want to have realistic expectations. We are so looking forward to the last treatment and starting to heal. These threatments have brought mouth sores, skin burns, thick saliva and mucous, and all that gets worse with each passing week. She's determined to get through it and get her life back. Is the worst yet to come? We can take it, but we want to know from people who have had the experience.

thanks

k

SuzJ

True

Actually, it's more like 3 weeks.

Pain is horrible, and the mucos.. ugh..

 

Just remember tho, treatment is BEHIND you, this too shall pass!

 

Joe115

Sorry but it's true

I am 6 weeks from my last treatment. No one prepared me for how difficult the 3 weeks after the last treatment were goint to be. I thought that I'd start feeling better once the last treatment was over, but it was the fouth week before I started seeing improement. The good news is that recovery, for me at least, went quickly after the third week out. I'm eating and talking but still in small amounts. Every day you will see small improvements. Keep up the fight.

ByeByeCancer

Remember that everyone will experience the effects of the treatment a bit differently.  I think it is a good idea to prepare for the worst (just in case) but continue to stay positive and hope for the best!  My husband finished treatment on November 10, 2017 and the only thing that got noticeable worse during those first couple of weeks post treatment was the skin on his neck.  The "burned" area seemed to spread a little more each day.  Aquaphor helped with this.  Even as the burned area was spreading, he could see fresh skin starting to come in at the top (where the original burn was).  You can click on my "About Me" page on this site to see how my husband did at the different stages.  Help your wife keep her calories up so her body has the energy to heal and recover.  We made lots of smoothies with Benecalorie (from Amazon).  

Hang in there!  This will be behind you soon!!

OKCnative

Yes, in many ways the weeks

Yes, in many ways the weeks following treatment were the worse. Mucous was still an issue and swallowing was very difficult. Pain was never much of an issue for me.

After about three weeks things rapidly got better. Within a month or so I was pretty much back to normal.

Sprint Car Dude

Bingo.

The radiation keeps on doing its thing for a month or two following the end of treatment. It will improve gradually over the course of 2-3 months following the treatment. That lovely mucous was the worst. Good Luck. It will get better, everyones situation is just a little differen't.

Marcy2017

neck radiation burn

I have been through with radiation burns for about two months now. But this week I started experiencing a really bad burning sensation on my face and neck. I had surgery in October 2017 for squamous cell carcinoma (mouth cancer) and they removed the bone from my lower jaw replacing it with a bone from my leg. In January I started radiation treatments - 6 weeks of reatments - 5 days a week. I've been through with the treatments over two months now.  Is this burning sensation normal? When will my neck heal and be normal? I also lost a lot of hair and the doctor said the radiation didnot cause my hair to fall out. Something did. Check out my blog at https://journeyofsurvivalblog.wordpress.com/... Email me with any tips at marcies1960@aol.com

Dean54

I'm close to 6 months out

And didn't have near the side effects as most of you but the ones I did have are still there. The thick muscous is mainly just in the mornings and is slightly better. Lack of saliva and taste still makes eating difficult and I dread meal time. The lymphadema started probably a month after treatment and has not subsided any.

stevenpepe

I am 17 months after the end

I am 17 months after the end of my second round of treatments. Everyone is different, as they say. But it's true that the effects are still felt long after treatment ends. Most head and neck cancer survivors deal with issues for the rest of their lives. You're never the same person.

For me, I still have some mucus issues but they seem more normal, like when you have a slight cold. Some of my saliva has returned and swallowing has become easier but my mouth is closing more and more by the day. My jaw muscle painfully contracts and closes my jaw as a result of proton therapy to a tumor just below it. Therapy to manage that, along with other shoulder and muscle issues as a result of radiation are up next for me. The immediate fatigue lasted for about six months and I still have bouts where I just can't get off the couch some weekends. But for the most part, my energy levels are back to normal.

My social life has taken a hit as a result of the radiation issues. I can't eat, speak or swallow without much challenge and it tends to keep me away from social settings. But I don't mind too much because focusing on my physical and emotional health has become priority.

My case is probably more worst-case than most since I went through this ordeal twice in one year. Still, I'm here to tell you it's a small price to pay to be alive. Life is still good for me. Good luck with treatments.

68PBK

last treatment April 13

My husband finished 35 radiation treatemnts and 6 chemo on April 13. The first 2 weeks after were horrible. He was just as nauseus as ever, mucous and dry mouth got worse, and worst of all his neck skin completely opened up and was a raw burn wound, requiring  salene soaks and rx cream and dressings to be applied 2-3 times daily .

We are now just over 3 weeks out and the last few days he is MUCH better. he has eaten something ( usually soup) every day for the last 3 days , the last 6 weeks before that he could tolerate nothing except "ScandiShake" due to mouth sores and nausea.

 His mouth sores are much better, neck is almost 100% healed , and he is stronger and more clear-headed every day.

 SO hang in there : )

donfoo

ditto

As stated everyone is different. I was lucky as my low point was a couple weeks before end of treatment. Leveled off and stayed the same for a couple weeks then got better.

pmsakom

Husband’s last treatment 5 December

my husband‘s last treatment was 5 December 2017.  He got a bit worse in the 3 weeks post treatmen.  Mostly the mucus.  He had a PEG tube and that was the only nutrition he had since week 2 of treatment.  He was very lucky in that he had no neck burns and got all taste back about 6 weeks post treatment  . It might be helpful for you and your wife to prepare for 3 weeks of getting worse and then slowly improving.  Best wishes to you both!

CivilMatt

I was lucky once and it was 2 or 3 weeks post.

kmadlom,

While I did have an extremely painful neck burn during the last weeks of treatments, unlike many of my colleges I did not have a noticeable bad time at two or three weeks post.  I had my PEG popped at two weeks post, so I made  the determined switch to smoothies for much of my guaranteed calories, but I really did try to eat something by mouth as often as I could.

If every H&N member who was able to come to  a party during the 2 or 3 weeks post, I think it would be only me and donfoo there.

Don’t worry about it, drink lots of water and keep your body hydrated and flushed of all the toxins you have taken.

Matt

Jbrooks

Marcy2017 said:

neck radiation burn

I have been through with radiation burns for about two months now. But this week I started experiencing a really bad burning sensation on my face and neck. I had surgery in October 2017 for squamous cell carcinoma (mouth cancer) and they removed the bone from my lower jaw replacing it with a bone from my leg. In January I started radiation treatments - 6 weeks of reatments - 5 days a week. I've been through with the treatments over two months now.  Is this burning sensation normal? When will my neck heal and be normal? I also lost a lot of hair and the doctor said the radiation didnot cause my hair to fall out. Something did. Check out my blog at https://journeyofsurvivalblog.wordpress.com/... Email me with any tips at marcies1960@aol.com

Marcy...had the same surgery

Marcy...had the same surgery and treatment as you.  I lost the hair in the back neck area and done along the sides.  It was definitely the radiation !  

AnotherSurvivor

My last two weeks in

My last two weeks in treatment were close to fatal, even 17 months later I still don't know how many days were in the ER/ICU.  They slap you on a gurny and wheel you in for radiation anyway.  I did get a pass on chemo #7.  Day 1 of post I started walking full time again, and every day thereafter was better.  It all depends.  If I would advise anything it is that Post takes its own sweet time, but also my ENT and Oncs were pretty accurate on my recovery time.  I was out and about by month 4, doing full normal by month six. 

Now that I've proven that cancer wasn't going to beat me I would categorize that whole early effort and determination as idiocy, taking it easy would have been sane, and probably wouldn't have had much impact on slowing things down.  Figure a full year to get to stable on most things like drymouth, taste, lymphedema, blood chemistry, nutrition, her destroyed digestive tract.  The past two weeks I have been fighting a mild headcold.  I have discovered that I now experience mucisites again when I get those.  Not even close to the industrial strength mucisites of treatment, but enough to be annoying.

kmadlom

Everything Is True

My wife rang the bell Friday, May 4. She skipped the May 7 radiation, so she logged 29 instead of 30. This first week has been everything you all said it would be...horrible. Her skin burns got worse, the phlegm got worse, the fatigue and the mouth sores...worse. In fact, yesterday, exactly one week since the last rad, was one of the worst days she's had. It's strange how you have to experience it to appreciate that the only thing that gets better when the treatment stops is your schedule. Even so, there is a bit of an attitude change. We are so thankful that treatment is over that it has given her some determination to get through this part. We're using aloe, a prescription salve and some aquafir to deal with the skin burns, and still doing the saline rinse and a nebulizer with just saline to help with her mouth and throat. We'll be so glad when this is truly over, as I know is a feeling everyone on this site has about treatment and recovery.

Liquid is still all she can get in for nourishment, but she thinks maybe by the end of next week she'll try some sort of pureed food. Do you think it's too soon? From what I can tell, for most people eating food doesn't happen for months after treatment.

Thanks again for all the tips, advice and support.

k

Charmit

Gosh I’m reading all this

Gosh I’m reading all this post treatment and it scares me. My last treatment is June 18 and my baby graduates high school the 22nd. I HAVE TO BE WELL ENOUGH TO ATTEND NO IF AND OR BUTS!! Any advice how I can gear myself up for this...,hydration yes eating yes rest yes. Missing this day cause I’m nauseous or in pain is not an option!!! 

ProustLover

Baby's Big Day

My husband finished 33 rads on April 10, and 6 chemos as well.  The phlegm got worse the first week post treatment, but not terribly worse in relation to others.  So far so good for him.  He used aquaphor faithfully throughout and his skin got an odd patchy tan but never did burn.  He used magic mouthwash as needed, usually a couple times a day toward the end, and a spray called Lubricity that worked the best to hydrate his mouth  (available through Amazon).  Painful tongue sores starting around week 2 meant he had to rely on liquid nutrition, and starting around week 5 he resorted to using the PEG.  He never stopped drinking  volumes of water.  Now, at almost five weeks post treatment he is eating a variety of things, and his taste buds are kicking back in.  For him, the earlier weeks when the tongue got bad were much more of a struggle than anything that's happened post treatment.  His energy has improved every day.  So, Charmit,  have faith you'll be present and accounted for on baby's big day!   As for me, I'm starting to feel more normal, trying to get used to this "lull."  Trying  to live in the moment and not focus on first follow up scan.  This site gives me some strength for milestones to come.  Thanks to all who have gone before.  

OKCnative

Charmit said:

Gosh I’m reading all this

Gosh I’m reading all this post treatment and it scares me. My last treatment is June 18 and my baby graduates high school the 22nd. I HAVE TO BE WELL ENOUGH TO ATTEND NO IF AND OR BUTS!! Any advice how I can gear myself up for this...,hydration yes eating yes rest yes. Missing this day cause I’m nauseous or in pain is not an option!!! 

It's hard to say. However, if

It's hard to say. However, if memory serves me, you've been experiences symptoms of treatment earlier than some here. So, that may mean that your symptoms linger for a bit when treatment ends.

They best part about this day and age are things like FaceTime and Facebook Live streaming. So, one way or another you will get to experience the graduation! Good luck.

dan1658

Charmit said:

Gosh I’m reading all this

Gosh I’m reading all this post treatment and it scares me. My last treatment is June 18 and my baby graduates high school the 22nd. I HAVE TO BE WELL ENOUGH TO ATTEND NO IF AND OR BUTS!! Any advice how I can gear myself up for this...,hydration yes eating yes rest yes. Missing this day cause I’m nauseous or in pain is not an option!!! 

Not sure if I'm close to normal after reading these posts, but if it was me, I would attend the graduation. Through all of my treatment and the week following, I have been at church, no talking and sitting in the back, because of coughing fits. I even did my Usher duties last week (without talking). The last couple of days I have been eating such things as spaghetti, chicken noodle soup, and mac & cheese with no problems. I told work, I am a teacher, I'd like to come back in another week but I'll let them know later in the week. Thing is my voice can be there albeit weak one minute, and completely gone the next. My worse thing is coughing fits.

tbret

kmadlom said:

Everything Is True

My wife rang the bell Friday, May 4. She skipped the May 7 radiation, so she logged 29 instead of 30. This first week has been everything you all said it would be...horrible. Her skin burns got worse, the phlegm got worse, the fatigue and the mouth sores...worse. In fact, yesterday, exactly one week since the last rad, was one of the worst days she's had. It's strange how you have to experience it to appreciate that the only thing that gets better when the treatment stops is your schedule. Even so, there is a bit of an attitude change. We are so thankful that treatment is over that it has given her some determination to get through this part. We're using aloe, a prescription salve and some aquafir to deal with the skin burns, and still doing the saline rinse and a nebulizer with just saline to help with her mouth and throat. We'll be so glad when this is truly over, as I know is a feeling everyone on this site has about treatment and recovery.

Liquid is still all she can get in for nourishment, but she thinks maybe by the end of next week she'll try some sort of pureed food. Do you think it's too soon? From what I can tell, for most people eating food doesn't happen for months after treatment.

Thanks again for all the tips, advice and support.

k

Eating, Drinking, and being Wordy
One of the problems those of us who have survived (so far: 18 months after treatments ended for me) is that my radiation and chemo wasn't your wife's chemo and radiation. The shape of my "let's see if we can cure you or kill you" beam was not the shape of hers and I bet our radiation masks wouldn't fit one another. ...you "get it." Her experience will be different than mine.

I apologize if you've read me before so you already know this: I lived on Ensure for months. One of the reasons is that the Cisplatin so messed with my sense of taste that I needed to get calories in that I didn't have to taste. I could hold my nose and drink 16 ounces of room temperature Ensure in a matter of seconds.

I'm reporting this so you can judge the degree things are different for your wife. There were only a very few days when I couldn't contemplate swallowing things and they weren't always "in a row." When I started eating again I was eating Cream of Wheat, mostly. Oatmeal is not the same consistency and I could not eat it. Then I discovered that if I had a little Cream of Wheat in my mouth I could chew and swallow just about anything. (I could taste nothing, so that might have been a mercy since I would eat steak (medium to medium rare only) using Cream of Wheat (thinned a little) as a saliva substitute. For me, early-on, water made a lousy saliva substitute. I could eat a baked potato, but NOT mashed potatoes. (they formed a "plug") In fact, what I could eat was counter-intuitive and still is today.

It was about a month after treatments ended, maybe closer to six weeks, that I could eat a little pork loin. It didn't taste like anything and that was GREAT. If she can eat, then she's doing REALLY well. So I'm not trying to say "don't expect her to eat" but I am saying "don't freak-out if this takes a little while."

What I would suggest is that when you try food of any sort, try lots of different things. Pureed would have plugged my throat. The "graininess" of the Cream of Wheat made it work (but weirdly, steak was easier than hamburger for me) for me, but maybe not her. The steel cut was too grainy. I'm not saying it would be for her, I'm saying subtle differences aren't so subtle when you are struggling. They can make all the difference.

My low point was somewhere between two and three weeks after the treatments stopped. If I had eaten more and sooner I think I would have improved faster. I stubbornly stuck to Ensure because it was "easy" and that was probably a mistake (I will never know for sure). Biotene has been wonderful for me. I have multiple bottles scattered in cars and in the house and I keep a zip-lock bag full of oral care products in every vehicle so I am never caught without.

Like everyone else who got better, what I want you to know, understand, and live is that this stuff is awful but IT DOES GET BETTER. I can go into any restaurant, anywhere, and find something to eat. I can and do eat just about everything.

OHHHHHH!!! Paradoxically, I really find chocolate to be offensive tasting now. It smells wonderful and tastes awful. HOWEVER, when I was searching for calories I found I could drink a Baskin-Robbins chocolate chip (a little bitter) milkshake. A medium has something like 1,000 calories in it. I tried other flavors and the only ice cream I sort-of liked for a while was the pralines and cream (because of the saltiness of the nuts in it). That got really expensive, so my wife started making my milkshakes at home. Now I'm fat again. Hooray for me. ...'er somethin'.

The point in telling you that is just to say that sometimes there doesn't seem to be a rhyme or reason to things. Try everything. Try it now and try it again later because the experience changes.

I had the skin burns. My neck looked like the sun cracked clear-coat on a badly painted trunk-lid. Mine passed in a week or maybe it was two weeks. I did nothing for it, at all. The doctors told me not-to unless... something I don't remember... and they would give me something for it, which it never did so they never did.

By the way - I had trouble taking my last two radiations. Stuff (that's the only way I can describe it) was constantly in my mouth and down my neck and being immobilized on my back and being unable to deal with it was rough. The last two treatments we had to interrupt so I could clear my airway and we could continue.

So, to try to be encouraging, I think all I can say is "Be encouraged!!!" I worked in the yard most of yesterday afternoon. I HATE yard work, but I love the fact that I can. For me the thing that was most crippling was the fatigue. I've never felt like that before or since. I can't believe a person can be that fatigued and be willing to breathe. Oh my goodness was that ever awful. It made my support network a little miffed because they just couldn't understand how it was that I could be so tired that I couldn't eat, or couldn't do something else they wanted me to do.

Ok, enough from me for a while.

Hang in there and your wife may be doing yard work she doesn't want to do this time next year!