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sore throat and canker sore been two weeks of rad and 1 chemo so far still have 4 1/2 weeks to go for rad and 2 more chemo

pingsuen
Posts: 20
Joined: Jan 2013

Hello, just new here and actually my husband is the one diagnose of cancer at the base of the tongue, actually we really dont know how he get it, he dont smoke and drink but one time he had a lump of his right side of his neck and since then he went check up. until confirmed it was malignant cancer stage 3. he's dont with all the test and now he is undergoing chemo every 3 weeks (done 1 chemo this month) and 33 rad. my concerned is for two weeks of treatment he already feel the pain (hard time to shallow and sore throat and canker sore too) and he lost 5 lbs already thats is few days only.but he still trying to eat by mouth he refuse so far to get peg tube feeding until he unable to swallow liquid. i've been giving him puree foods and ensure and protein shake. anybody feel the same way? any medicine to take or mouth wash that's really works? his rad doctor prescribe to numb his throat before eat so he can swallow. but not really working he said.sorry too long but please need some reply i'm very concern about my husband. he is very healthty and love to exercise and never drink or smoke and now he is suffering from cancer.

 

CivilMatt's picture
CivilMatt
Posts: 3010
Joined: May 2012

Pingsuen,

 

Welcome to the H&N forum, the place to be (temporarily).

 

I had cancer on my tongue and a lump on my neck and do not know how I got it either.  It  is one of life’s mysteries.  By the way I don’t drink or smoke.

 

 If you are going to go PEGless keep swallowing and drink lots of water.  I did have a PEG, but did manage to drink at least one meal a day.  You must stay hydrated and get plenty of nourishment throughout treatments.  If he fails to get enough nourishment by mouth getting a PEG is alright and it takes your mind off of eating.  Some people make it with out a Peg and maybe you will be one.

 

For me, I used the Magic Mouth Wash for mouth, tongue and throat pain.  The formula my pharmacy used was great. There are other good choices, but I did not use them.

 

Best,

 

Matt

ditto1
Posts: 634
Joined: Mar 2012

sorry you had to find us but you will be glad you did, I had Base of Tongue dx back in March, 33 Rads and 2 Cisplatin and 9 Erbitux treatments, no Port or Peg, it was not easy but doable, many times up and down.  We will be here to help you thru this and you can pretty much bet there is not a question you will not find an answer from somebody.  You may also want to review the Super Thread which is the first post on this page. 

pingsuen
Posts: 20
Joined: Jan 2013

Aloha Ditto, 

             yeah my husband taking Cisplatin also. his doctor told us this medicine is very strong and strong side effect..like nausea and vomiting..which he did experience that the first chemo. i am scared the 2nd chemo..actually i am losing weight too for worring too much..i am CNA Certified Nursing Assistance and working in Assisted Living..working and taking care Elderlyi can handle but taking care of your own husband, seeing him suffering to swallow and coughing/ spitting mucus like stciky salive..i am the one having hard time..i really feel so sorry for him..

regarding the Super Thread..what is that? i will search at the same time. and how you handle the pain? and what kind of food you eat? do you have canker sore too? and having hard time to swallow? i hope you dont mind my question..thank you again.

 

Angie (pingsuen wife)

ditto1
Posts: 634
Joined: Mar 2012

When you sign on and go to Head and Neck to read updated blogs the very 1st one will say Super Thread, click on it and you are on your tour of about anything you would want to know.  As far as my situation, I pretty much had all the basic side effects, nausea was not to bad, but did have thrush a few times and weak as I was loosing weight, but did pretty good overall.  Let me know if you still have trouble finding the Super Thread.

ditto1
Posts: 634
Joined: Mar 2012

When you sign on and go to Head and Neck to read updated blogs the very 1st one will say Super Thread, click on it and you are on your tour of about anything you would want to know.  As far as my situation, I pretty much had all the basic side effects, nausea was not to bad, but did have thrush a few times and weak as I was loosing weight, but did pretty good overall.  Let me know if you still have trouble finding the Super Thread.

pingsuen
Posts: 20
Joined: Jan 2013

Thanks Ditto, i saw the blog of super thread...read some topic already. my husband too had some side effect which i think also the basic one..today he have muscle cramps on his both legs we asked the oncologist and he said it's normal side effect and eat banana... my husband losing 8 lbs already just for 1 week..im worried about him..i order online the Nestle boost super high calories 530..cannot find here in hawaii local store/ drug store. you take care ditto..

 

pingsuen
Posts: 20
Joined: Jan 2013

Thanks matt for the reply i really appreciate it. i already convinced him to get PEG.tomorrow we have oncology follow up treatment and rad therapy also..i wil tell to his doctor that he is ready for peg.( i hope he dont change his mind..he is little bit hard head..:(... i really dont want to wait to long. by the way he's been trying to spit his mucus i think it looks like sticky saliva and i told him it's not good for his throat it will make his throat more painful and sensitive..but he is getting mad and upset at me and telling me i dont know how he feel. i really feel so sorry for him..i tried my best to take care of him..even buying online ensure and boost that's lots of protein and calories. yeah he have something like miracle mouth wash but the one his taking is 5ML to swallow before he eat but he said it works only for few minutes..

 

Thanks 

Angie (pingsuen wife)

sassysrice's picture
sassysrice
Posts: 117
Joined: Nov 2012

What is it and do I need a precription. We us Mugaurd but mouth is still burning

Sue

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Without a doubt, I would be in the hospital having lost an incredible amount of weight being fed IV, if I did not have a tube.  If he is in too much pain to eat or swallow there aren't many other choices.

 

Joe Cortney

Dallas, TX

pingsuen
Posts: 20
Joined: Jan 2013

Aloha jcortney,

                    that was the oncology doctor told us before the treatment start but my husband refused it i guess he doesnt feel the pain yet and now he did..i think the PEG will help him a lot and yeah i wil try to feed him also by mouth like puree food...and lots of calories and protein nutritional drinks. thanks joe

 

Angie (pingsuen wife)

donfoo's picture
donfoo
Posts: 1274
Joined: Dec 2012

Hi Angie,

Welcome to CSN and sorry you are on the bus with us but glad you are here as you will get the straight scoop right from the front lines. I'm new so others have more experience but all my reading tells me you HAVE to stay hydrated and getting sufficient calories, no matter what. Once the weight starts coming off, I can not recollect a single post where ppl gained any back during treatment. As to hydration, this is a big one too. I was not aware of complications during treatment that led to patients getting extra hospital vacations. After reading a lot I see the fastest way to get your husband that extra stay in the hospital is by getting dehydrated.

I think we all think we get dehydrated, seating like mad working too long in the yard with no water, or going on a long hike or run and having no water but I think staying HYDRATED in this scenario is entirely different and since we are not at all experienced or conditioned to watch for signs of real dehydration, it is really important to know the signs and get help really fast as soon as you think it is going on.

Don 

pingsuen
Posts: 20
Joined: Jan 2013

Thanks Don,

 

               well today im not aware that my husband already dehydrated, he look fine and trying to eat little amount of puree food. specially ensure drink.. water i guess not too much..but i've seen him drinking little by little..but when this morning when we went to his oncology doctor for his bld count to get ready for his 2nd chemo next monday..doctor told us he is dehydrated and his blood pressure was low...right away the nurse gave him IV fluid inside the doctor's office....i've been giving him powerade drink electrolyte and regular water..i guess still not enough. someone told us coconut water with electrolyte is good (brand ONE ). doctor told us today he need PEG tube already and cannot wait too long cuz.. he have hard time to swallow food next monday his schedule for his PEG tube. thanks Don! 

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Good move to get the PEG with what you are describing as to what he's going thru. I used Jevity 1.5 to get what I needed, but most seem to use the 1.2- good stuff. Will take some getting-going with it, but never forget that he has to keep the swallowing function going- even if it's sipping just water, or the infamous ice chips some of us got to really really like. There are different types of PEGs, so you might inquire about. The G-tube is what I had, and is a bit bulky and all one does is pop the top off the tube and slowly pour the liquid into a syringe tube to gradually get the nutrition. Some have nausea problems, but I did not- only vomits I had were due to mucous buildup overnight when I had slept too long. Keep moving forward, and tell your husband he's gonna be okay.

kcass

donfoo's picture
donfoo
Posts: 1274
Joined: Dec 2012

I don't start induction chemo until next week and I know the hardest hydration issues start during rad which is months away but what I an doing already is training myself to drink at least 40oz of liquid each day. I start the day with 2 two oz plastic bottles filled and make sure I get thorugh one in the morning and one in the afternoon. Just trying to make this a daily habit and hope it becomes subconscious habit as i move along. Of course, I know the pain of taking fluids will make me totally aware of the act of drinking I figure it can't hurt and just makes pegging up a bit easier. will see. don

Skiffin16's picture
Skiffin16
Posts: 8095
Joined: Sep 2009

Hydration is huge during chemo..., probably as much as during rads...

One reason is flushing your system of the toxins and such from chemo. They'll actually run lasix and other drugs through you to start flushing during your same chemo induction day.

Plus, probably drinking less because you don't feel that well, and the meds might also de-hydrate you some, not sure on that one...

It's like drinking that one extra bottle of beer..., you know the one. The one where you haven't urinated for a few bottles. Now you drink one more bottle, and your going every fve minutes.

The nurses told my wife about tenting... gentle pull the loose skin on the top of your hand. If it "tents" up, remaining for a few seconds your low on fluids.. If it springs back in place very quickly, you're more than likely good on the fluids.

JG

 

 

Skiffin16's picture
Skiffin16
Posts: 8095
Joined: Sep 2009

I lived in Hawaii for several years while in the service...lovely place back then.

I haven't heard mention of HPV, but with your husbands lack of tobacco, sounds like HPV could have been a possible contributor to the cancer. Doesn't really matter as treatment is the same currently... but survivla rates and response tend to be improved...end result though, cancer iscancer.

As mentioned, stay very well hydrated and calorie intake is huge... If his onco prescribed the PEG, I'd get it. Mine didn't and for me it wasn't a probelm. I just switched to Ensure Plus and a few sliced peaches for my calories during the hardest weeks of rads.

Ensure gave me nearly 350 calories each can (several a day), and the peaches kept the throat swallowing muscles working... If you don't swallow, there's a chance that you could lose that ability permanantly..., and that would totally stink.

Best ~ John

 

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

WELCOME  to our little space of the internet...glad you found us.

Please tell your husband not to fight the PEG tube.  I know for sure that I would not be here if not for the PEG tube.  In my case it was non-negotiable.  My surgeon put it in during my 13 hour surgery for tongue cancer.  I was not able to swallow anything, even water, so everything went thru the tube....water, medicines and nutrition.  I recovered from the surgery and was finally able to swallow water again, only to lose the ability again once radiation started.

so tell him not to be hesitant...he will be so glad he has the PEG to rely on.  If he is able to swallow and not need to use the PEG, that is wonderful, but since he is losing weight already...he definitely needs it installed ASAP.

GOOD LUCK to you both.

Ingrid

hwt's picture
hwt
Posts: 1963
Joined: Jun 2012

Some do make it thru without a feeding tube but for those of us that have had one, I haven't heard any regrets. Since your husband doesn't seem ready to give in to one, keep trying to find what he can eat. Many of us did well with eggs, soft boiled, scrambled, omelets with cheese and anything else to add calories. Try pancakes with lots of syrup. Several of us have found that milk helps most any food go down easier. Add chocolate for calories. Rice Krispies in milk worked for me. Smoothies, shakes, pudding and cream soups. If food temperature becomes an issue try room temperature for drinks, etc.

Good luck in finding what works, it's all trial and error.

 

Candi

pingsuen
Posts: 20
Joined: Jan 2013

Thanks for all the suggestions and encouragement everyone!! today it was the hardest day for my husband . been vomiting a lot early morning and while in the doctors office and radiation therapy..feel so sorry for him. my husband will get the PEG Tube tomorrow already instead this coming monday.. he throw up everything that he ates. last night he couldnt sleep at all i think he worries a lot. probably thats the reason why he's been throwing up? or maybe still the side effect of the chemo.?

Candi, thanks a lot for the food tips. i will try that for my husband, scramble eggs he can tolerate to eat but slowly. thanks a lot!

 

Angie

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi and welcome,

I'm new the forum as well and about to undertake this journey. Tx N2b MO Stage IV. The advice and support here has been amazing. So sorry you're having to go through this. 

From what I'm hearing, while there are striking similarities, the treatment experience is unique to the individual. I already know and accept that what I intend to do and what actually happens will be two different things. Now that I have a "team" of physicians working with me, I'll trust their judgement concerning a PEG or a port (if I need chemo). 

I had a tonsillectomy and biopsies to try and determine the primary site (still unknown and scheduled for more surgery to remove the tumor and more biopsies). I've been told the pain from rads is similar if not a bit worse. If that's the case, I'll be able to swallow with the help of pain meds and magic mouthwash. I've already stocked up on protein powder, glutamine and such to make my own protein smoothies (can't stand Ensure or Boost!). 

From what I've learned, it's better not to fight it and be prepared. A friend of mine who went through this (18 months NED), said the best advice he could give me was to stay ahead of the pain and the symptoms. Once you fall behind it's hard to catch up.

Best wishes and positive thoughts and prayers.

"T"

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