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hubby done with his chemo and rad today more side effects?

pingsuen
Posts: 20
Joined: Jan 2013

Hello everyone,  my husband done with his 3rd chemo yesterday and 33 rad today. SCC base of the tongue cancer stage 3....were so happy that he is done chemo and rad.. but i'm still worry about the more side effects after the treatment. the radiologist told us after the radiation the first week is very hard and expect for more side effects and after that healing days will follow..but.he already have some side effects during chemo and rad till now..but what more side effects do we need to expect?..all i know my husband having hard time to get rid of his mucus he need to force to coughed just to spit it out the mucus and he hardly sleep at night he have to sit up and lean backwards in order for him to sleep..his throat is very red and painful (had medicine but not that working) because of the radiation and his neck burn too..i feel so sorry for my husband..anyone have the same side effects? yeah sometime i noticed when my husband sleeping there are times he is jerking and twitching he never do that before and just after he do chemo and rad only...so worried is that one of the side effect? what about low sodium? one time his sodium was low and doctor told me give 1 tspn of salt and mixed to his Gtube formula water restriction too.. cannot give water for that day and i have to give him gatorade only that day...hayyyyyyyy anyways so sorry i am filipino i know my grammar not that good...lol and my husband is chinese and he dont know how to use computer...but thank you for reading and if you can tell me what to expect and to get ready for more side effects after treatment and maybe some tip how and what he or i can do for him...thank you sooo much...

 

Big Aloha from Hawaii,

Angie 

Mikemetz's picture
Mikemetz
Posts: 338
Joined: Nov 2011

There is a long list of possible side effects from chemo and rads treatments, but the reality is that every person gets a different combination of them, to different degrees, at different times.  And, each side effect can last a different length of time.  My advice is to be aware of the possible side effects, recognize them when they appear, and get them treated right away.  Some of them are somewhat "standard" like the mucous, burn/rash, nausea, and fatique.  There are lots of known meds and nutritional treatments for those.  For those that are less common, all you can do is watch for them and get treatment when they appear.

The end of treatments is just one stage in this battle with cancer, so stay watchful.

Mike

pingsuen
Posts: 20
Joined: Jan 2013

Thank you for the advice i keep that in my mind..hoping that my husband wont suffer that much because i suffer more because of worried to much..thank you again.

Aloha, Angie

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Welcome, Angie

You have come to the right place.  We are all oral cancer survivors here so we have either been thru treatment or are currently going thru treatment.  The side effects you mention are common.  As Mike says above, your husband may get some or all of them during his recovery.  

Check out the first entry on these pages..."Superthread".   It contains many tips and tricks of things you can get for your husband that will help in his healing.  Ask his doctor for a prescription for MAGIC MOUTHWASH.  It will help in his swallowing by numbing the throat.  Also get something for the skin on his neck...AQUAFOR worked for many of us.

One of the best tips I can give you is keep him hydrated...the more water the better.  Also since he has a feeding tube, he will be able to keep his calorie count up which helps in healing, but make sure he uses his swallowing muscles....even if he is just sipping water, or sucking on ice chips...the muscle will cease functioning if it is not used.

Have him try sleeping sitting up...in a recliner type of chair with lots of pillows.  Laying down just adds to the mucus problem.

Very good news that your husband is done with treatment.  Now it is time to heal.  The intensity of the radiation treatments may keep going for a few more weeks, then he will start to feel somewhat better.  I won't lie -- it takes a long time to completely recover from the radiation & chemo.  It sounds like he did NOT have any surgery, so there won't be added recovery time for that.

I am a little concerned about adding salt due to low sodium levels and not taking water...and the "twitching and jerking" movements. I have not heard of either of these and would double check with the medical team.

Ask whatever questions you have....and your English is pretty darn good as a second language !

Wishing you the best,

Ingrid

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

First of all your english is wonderful, not to worry.
Congratulations on completing treatment for your husband....what a victory!!!

As the others mentioned there are many side effects that "could" happen but we don't all get every one of them. It would almost be better to let us know as he encounters one or the other and we can help you with what worked for us.
As far as the twitching goes I have to ask you, is he taking Reglan by chance? That has been known to cause twitching especially when the body is under other stess at the time while taking it. If that is the case, talk to your dr about changing the Reglan to something else. If he is not on Reglan than his twitching might just be related to the tension and stress that comes with all this treatment, let's face it, it's not the easiest of treatment and afterwards, later in the day or evening when our body is trying to relax from all the trauma we may twitch as we try to calm ourselves
Keep us posted.
Billie

pingsuen
Posts: 20
Joined: Jan 2013

Thank you and yes my husband is done treatment. but like i said before still worried about more side effects. yesterday after his last rad..he was so happy and he even told us he is graduated already and laughing too...:) (i mentioned this to ingrid)... he even cooked dinner for us last night made oxtail soup. but when he wakes up this morning he back to pain and fatigue again..he complain of tiredness and very sleepy plus pain in his throat...:( i put the fentanyl patch that prescribe yesterday of his rad doctor..but scarry after i read all the side effects if use too much. did you use fentanyl at all for pain?

Nope he didn't use reglan at all. and regarding his jerking and twitching he use to take the oxycodone for pain 2 tabs Q4hrs then replace today of fentanyl patch. not sure why he is like that maybe you are right stress/tension and anxiety attack too? maybe because one thing i know my husband he's the kind of guy scary cat...lol pretending he is strong but small cut he is worried already...

I always telling him to relax and stay positive..i even told him to watch comedy movies and dont watch those kind of chinese movies that's lots of fighting...lol maybe that's why he is jerking at night because of chinese movies? dreaming? ohh noo..lol what i am thinking..lol

taking care of my husband is really a full time job and sometimes driving me nuts...why am i saying that..he have a mood swing most of the time because he cant talk good plus pain he gets mad easily and irritated. and for me as a wife, mother of 2 kids and caregiver for my husband i forget sometimes to take care of myself plus need to take care the house, bills etc. and soon i will be back to work in less than 2 weeks..anyways thank you so much, you guys are soo wonderful big help and i love this site i learn and pick up some tips here too...yes i will keep you guys posted...

Big Mahalo and Aloha from Hawaii,

Angie

pingsuen
Posts: 20
Joined: Jan 2013

Aloha Ingrid,

                  First of all thank you so much for your time replying my post..i really do appreciate it and all of you here..this is very wonderful site most especially you guys are very helpful!..thank you again..regarding the superthread i did read before some of the topic there and it those very helpful. will take a look more topic soon.

Magic mouthwash didn't help my husband that was accding to him..only help less than a min. that's why he dont continued.

Aquafor is that the same thing with aloe gel from ocean potion skin care? doctor prescribe that to him and so far seem like it works. but i will check the Aquafor too. last night after his last radiation he was so happy he said he graduated already and i was surprised that he can drink cold water slowly and even cook oxtail soup for us..(he's the cook in the house) but this morning when he wakes up he complain of very tired and pain in his throat again..BTW did you try the fentanyl patch?  first time he apply the Fentanyl 25mcg/hr patch that good for 72 hrs. this pain meds is very strong i hope no side effects.

Yes he only sleep when i double up the pillows and sometimes he sleep sit up head backwards. about the water still scared to give more water because the last time i gave so much water to keep him hydrated he end up low sodium and doctor restricted him from the water, but after the last test of his blood count the sodium back to normal range 136 he was down to 119 before..gatorade help him and 1 tspn of salt a day that time...but for now i make sure he have enough water to take via Gtube and to make sure not too much too. thanks again.

yes my husband didn't go surgery only 3 chemo every 3rd week and 33 rads no surgery. i really dont know why his jerking and twitching..will still observing him for that..but last night not that much.

thank you again! will keep you posted.....Angie..:)

 

 

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Angie if you have aloe from a doctor's prescription, definitely use that.  Aloe is great.

I know many people had good luck with the Fentanyl patches.  (I couldn't use them due to the blood pressure medicine I take--it cannot be used with that).  I am glad they are helping him.

I was also able to swallow cold things better than room temperature things, but that is pretty rare.  In my case, it seemed to soothe my throat.

sounds like he is doing good if he feels up to cooking !

 

 

 

phrannie51's picture
phrannie51
Posts: 3672
Joined: Mar 2012

can be tougher, that's a fact.  Throat gets sorer, skin on neck gets crispier, etc.  The rads continue to work for that time.  Like everybody said, tho....not everybody gets the same ones, or to the same degree.....your Dr. was giving you a heads up that things don't simply go back to normal and that everything will take time. 

For me, not getting dragged to radiation everyday when I'd rather rest was a nice reward, so I hung on to that thought often after that part was over....

p

pingsuen
Posts: 20
Joined: Jan 2013

Thank you for your feedback P, i will keep that in mind..

 

Big Aloha from Hawaii, 

Angie

jcortney's picture
jcortney
Posts: 410
Joined: Sep 2012

And I have to tell you, the two weeks from the end of treatment were really rough.  Neck burns (Silverdene works wonders) throat pain and fatigue were hard to deal with.  My Doc's told me to expect it, and I did, but it's still such a let down.  In the last few days I've actually seen an improvement.  The Silverdene has just about healed my neck, throat still pretty sore but drugs are keeping it under control and I actually ate a couple of spoonful's of solid food today.

So, this is a rough time, but the light at the end of the tunnel probably isn't a freight train.

Hang in there

Joe Cortney

Dallas, TX

pingsuen
Posts: 20
Joined: Jan 2013

First of all congratulations! your out for 3 weeks which is good and able to eat couple of spoonfuls of solid food and that was amazing! i hope my husband will be the same as you later on...my husband just finished his rad yesterday but still have lots of future follow ups /check ups to his chemo/rad doctors.

 The skin burn of my husband, he is using the aloe gel from ocean potion to soothes and cool his skin. but will try that silverdene is that prescription meds? or liquid or gel to apply over the counter?..thank again joe!

 

Big Aloha from Hawaii, 

Angie

jcortney's picture
jcortney
Posts: 410
Joined: Sep 2012

It is a prescription cream that will almost instantly take away all his pain and help to heal the damaged skin.  Silverdene is a trade name, the name of the compound is Silver Sufadiazine.  It makes a mess out of shirts and pillow cases but washes right off.  Can't recommend it enough as I was in serious pain till I got it.

Best of luck to you.

Joe Cortney

Dallas, TX

pingsuen
Posts: 20
Joined: Jan 2013

First of all congratulations! your out for 3 weeks which is good and able to eat couple of spoonfuls of solid food and that was amazing! i hope my husband will be the same as you later on...my husband just finished his rad yesterday but still have lots of future follow ups /check ups to his chemo/rad doctors.

 The skin burn of my husband, he is using the aloe gel from ocean potion to soothes and cool his skin. but will try that silverdene is that prescription meds? or liquid or gel to apply over the counter?..thank again joe!

 

Big Aloha from Hawaii, 

Angie

pingsuen
Posts: 20
Joined: Jan 2013

btw, i was just wondering how to upload picture here? sorry i can't find..Embarassedi was thinking to uplaod me and my husband picture...thank you in advance..Smile

Angie

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

Angie,

Nice to meet you, sorry it is over diagnosis' and treatments.

My husband finished his treatments 5 weeks ago, and yes there's more, it just gets a bit more intense. After about 10 days it is so slowly getting better, you will hardly notice, but it does get better! And yes, you reminded me, my husband twitched horribly in his sleep. That subsided around the 3-4th weeks after treatment.

We also have a pillow my husband still sleeps on, called a wedge. It helps. Also, rinsing his mouth with salt water helped clear the mucous.

Hang on, the ride is almost over! You've done the hard work, just a little patience and it gets better.

Kari

pingsuen
Posts: 20
Joined: Jan 2013

That's good to hear at least 10 days not too bad...hoping for the best everyday...today my husband really exhausted all most the whole day he's been sleeping. i was feeding him via Gtube while sleeping. and giving him water too every 2 hrs. monitoring him all the time..i really hope before i go back to work he will be better.regarding twitching and jerking i guess is one of the side effects also but mostly emotional stress and anxiety too.. Thank you so much kari.

Big Aloha,

Angie

CivilMatt's picture
CivilMatt
Posts: 2907
Joined: May 2012

SC

Angie,

My neck burn was the worst pain of my treatment, the Silver Sulfadiazine Cream worked wonders

Matt

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

Can't really add to the great information already given by others ...just to confirm and share my experience.  I was 4-6 weeks out before I got better (apparently I was at the back of the bus on that trip)Sealed

 

I used the same stufff Matt did, worked wonders.  You can see a picture of my neck burns on my expressions page ..

Bottom line is your husban will bet better ...whether sooner or later nobody knows, but I do pray it's sooner.

Gald your husban is finished with the radiation ....now it's just day by day until he feels better ...and that will come.

Best,

Tim

pingsuen
Posts: 20
Joined: Jan 2013

Glad your getting much better, i can't wait for that day when my husband get better too. good luck!

thank you again tim,

 

Big Aloha, 

Angie

pingsuen
Posts: 20
Joined: Jan 2013

Thank you for the picture of the silver sulfadiazine cream. i will let my husband doctor to prescribe him this cream... yeah my husband neck really burn and look like bbq chicken neck and very sensitive too. thank you again for the help and all of you here!!! you guys are super helpful!

Big Aloha,

Angie

Isign4Him
Posts: 34
Joined: Jul 2012

Hi, I had the exact same problem, mine was so bad, I went though 27 days of rads and was fine and then on day 28 I freaked out and it took them 8 days to talk me back into the mask and the machine.(was afraid I would choke) Mucous was terrible couldnt sleep and spit up stuff all the time. My Dr gave me a suction machine which was a God send! The good news is mine stopped around 10 dqys after rads. For the next 2 or 3 weeks I quit having to spit every 5 minutes and it was just once or twice at night I would have to clear out my throat. Now I am 7 weeks out and I only have this annoying little ball in my throat and very rarely have to spit. My saliva glands were destroyed during rads and I have terrible dry mouth. At first I used Biotin gel to help me sleep, but it would leave huge balls of mucous and gel stuck in my throat. So now I dont use the gel or any other Biotin products, dont care for them. I use Orazyme dry mouth spray and drink lots of water. At night when Im ready to go to sleep I take a sip of water and then 3 squirts of Orazyme and Im good to go. Still wake up once in awhile to get a drink but then I just repeat the process. Tell him to hang in there it gets better, you have to measure recovery by weeks not days. It gets very frustrating but it does get better.

In Christ, Kevin

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