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Here it goes... side effects attack

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

Hey everybody!

Well, my Dad just finished his 13th RAD (out of 35) and 3rd chemo on Friday (once a week he gets Cisplatin).

The side effects are already taking place. This past week he started to feel a sore throat which is just getting worse. It really hurts badly, so his meals are now more mixed. He will probably have to start with Prosure...

He swallows really hard, so I gave him advice to eat every 3 hours or so and let his throat rest in the middle. He firstly uses prescribed lidocain based gel which he applies inside his mouth then waits for a while and then he eats. Then the swallowing is a bit easier.

He is also quiet nervous now that this pain occured. I told him that this is going to last now for quiet some time.. for weeks. He has only 2,5 weeks behind him now... So it is probably 7 more weeks (including those 2 post treatment which will be the hardest) of sore throat. It will probably get even worse?

How is he suppose to deal with this pain? He got some pain killers but it still hurts.

So... I am really wondering how are the following weeks really going to look like? Is he going to have this painful and sore throat all the time or even worse?

I already read many posts here regarding pain, meds, eating ability.... But still - now that we're in it every advice is welcome :).

He does not have PEG tube yet.

And.. good advice from some of you: milk really goes down the throat easier than watter.

Thank you all again! I don't know what I would do without this forum. I found so many great support here.

yensid683
Posts: 222
Joined: Apr 2012

before it gets better

By my 13th rad I had a lot of pain especially in the soft palate area. I could swallow, but it became more and more difficult as the radiation caused swelling in my pharynx. My radiation oncologist had prescribed the 'magic mouthwash' which did help, but because my sense of taste was impacted, it was tough to do without gagging. I also had liquid lortab (hydroco/apap 7.5*500) and could take 15 to 30 ml every 4 to 6 hours with a maximum dose of 90 ml a day. I hit that limit by the 20th rad, so they supplemented the lortab with fentanyl, and it was effective in controlling the worst parts of the pain and discomfort. I figured I was doing fine if the resting pain was a 3 and swallowing was a 5.

I don't want to scare you but your dad will likely experience a distorted sense of taste, mouth and tongue soreness (magic mouthwash helps) dry mouth, heavy production of mucus (the irritated tissues secret the mucus to protect the tissue and help heal it) and may only be able to swallow liquids. As you may have seen on other posts, DO NOT STOP SWALLOWING!!

I'm now 7 weeks post rads, the last two weeks or rads and the two weeks afterward were the worst, but as my RO said, one morning I woke up and didn't feel as bad. I do find that it is best to compare improvements week to week rather than day to day, but it will get better.

One last thing, the experience is different for every patient, my experiences may not be what your dad may encounter, it could be easier for him, and I hope it will be.

Good luck to you and your dad

Peter

phrannie51's picture
phrannie51
Posts: 3617
Joined: Mar 2012

take place. Everyone has different pain thresholds, and some people don't get the horrible sore throat (I didn't get it during rads). Having the tube means a person has another option for getting food down. If your dad starts avoiding eating because of pain, and begins to lose weight...OR...he simply cannot take the pain, then start talking about the tube. He doesn't want to quit using his swallower all together, but if he can get a lot of calories down with a tube, and can keep sipping water and milk, that will work.

I've gone the last 2 chemo infusions, with taking all my nutrition and hydration by tube for 3 weeks between treatments, with the only thing I'm swallowing is L-Glutimine mixed with water for the mouth sores. I haven't had any problem swallowing, or losing my ability to swallow.

p

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

this is fairly early to be this symptomatic from rads alone, and a roaring case of thrush is miserable,but treatable

Sam999
Posts: 305
Joined: Mar 2012

Get all the pain meds that are needed to make sure he does not stop swallowing. I got Fanatyle patches starting my 5th week of rads but i know some folks got it earlier. Also it takes some time to adjust to pain meds.

Sam

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

Unfortunately it probably will get worse, but let's pray it does not. However, you need to plan for it in case.

I'm sure you have read the statement on this forum that says "stay ahead of the pain" ...that is very important. Pain will stop him from swallowing, thus stop eating, then weight loss and inability to get the nutrition he needs, thus slow down the healing process. He must eat.

I can only speak for me, but I don't know why all doctors don't insist on a feeding tube up front. If never needed, great, but if and when it is needed in the middle of treatments it just exasperates the issues the patient is already facing. You may want to speak to your doctors about a feeding tube now.

I had a feeding tube put in up front as my doctors strongly encouraged. I did not want one, but we decided to go with what they suggest. At about the same time as your dad I began to have pain and difficulty swallowing. I lost 70lbs in treatment including 4 weeks after my last radiation. To date I have lost 85lbs and have now leveled off..

As for pain. I wore two Fentynal Patches (one 25mcg and one 12mcg) and I took 6-7 Narco a day. The Fentynal patches were wonderful and truly allowed me to eat longer than I think I could have without them.

Even with all the pain meds I eventually stopped eating via my mouth and was 100% on the feeding tube. I had plenty of mucus to swallow after my last rad, so to continue practicing swallowing was not a problem, though it was tough.

As Pat said, check for "Thrush"...it is a normal problem with his type treatments and I'm sure you will have a couple of bouts with "Thrush"

No matter what, it is critical your father continues to exercise his swallowing muscles even if he does end up with a feeding tube. There are also neck / mouth stretching exercises he should / can do as well. It is just as important he "stay ahead of the pain" so he does not become frustrated, irritated and all the other things that pain can cause.

Tell your Dad he and your entire family are in our prayers and we are rooting for him!! :)

Best,

Tim

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

for wonderful advice. I'm going to translate everything and send it to my mother so that she and my dad can read it over and over again :).

I'm sure he's gonna do everything you all suggested. But it is hard to live with this pain for so many weeks. And my mom is "jumping" around him asking: are you feeling ok? does it hurt? come and eat... come and dring, you need to stay hydrated...etc. And he is probably a little crazy from her, haha :). Yes, the first days of this pain really made him quiet nervous. He did not expect it will really be this hard. Even though I tried to prepare him with all the literature I find on the internet and of course this great forum!

Thank you guys! You're all in my prayers every night!!

katenorwood
Posts: 1808
Joined: May 2012

VanessaSlo,
Your Father is in very good hands. Your Mother might drive him nuts...but it sounds like she is doing it out of love. You are a wonder girl ! Your parents are very lucky to have such a wonderful, informative daughter. The wealth of knowledge on this site will help you all get through the bumps in the road. Warmest regards sent to you all ! Katie

vandyike
Posts: 11
Joined: Jun 2012

I spent 6 wks chemo and 7 weeks chemo/radiation hovering over my wife. She handled all pretty well but was doing 5 ensures a day with minimal eating. Now in 1st week out and by far the worst. Everyone's different but it helps if the "coach" does the planning and communications with the doctors. Tell your Mother to have a thick skin. Good luck!

hwt's picture
hwt
Posts: 1832
Joined: Jun 2012

Sorry your Dad is having a difficult time. I hope it passes quickly. I agree with staying ahead of the pain and continuing to swallow. Maybe try applesauce, pudding, jello, shakes or eggs until your Dad finds something he can tolerate. Glad to hear that milk is working for him. My nasty lip sores sprung up early and stuck around thru the entire tx but it seemed like my other side effects came and went, some only lasting a few days or a week then that would clear up and I would move on to a different side effect. Since this is so painful for your Dad, I'll say a prayer that it is a short term side effect for him.

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

I was about 13 weeks when I started feeling horrible too. Started losing too much weight for a couple of reasons, too sore to eat enough and I was so very nauseas. Dr said it was from all of the swelling causing a gag reflex. I also didn't pay attention to some of the red flags and ended up spending a few days in the hospital from severe vomiting and dehydration. Please keep an eye on those things. Cool salt water compresses will help any burn on his neck between aquaphor or silver sulfa cream. Instead of water I tried to use Gatorade in my tube for electolites and calories. Sleep whenever he can and think about asking the dr for pain patches, They really work but can also cause nausea so watch the strength. It sounds like he has some great caregivers between you and your mom, you are a wonderful daughter. Try and stick to this site for advice and info, some of the others can scare you with all of their negative talk instead of helpful hints. Lastly, keep telling your dad that this does get better. He will start to feel like himself again. I remember "quitting" radiation, threw a little fit and decided that I was done! My support group of husband, family and friends decided otherwise and set me straight. Needless to say the next day I was back at radiation. Thank goodness I had them! Let him vent and "quit" but only for a second and then set him straight. I am 7 weeks finished now and I feel so much better. Every week I see improvements, he will too. We all heal at different paces and stages but we all heal. I hope this helps if only in some small way :-)
Billie

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Hard to say if it'll get much worse...

More than likely it might, but no guarantee. I didn't have a PEG either and while my pain was pretty manageable, once it peaked at around week 3 - 4, it never really got much worse.

I could manage mine with just the liquid oxy or hydrocodon before each feeding and crushing a percocet in a little water to knock off any pain after.

I took a lot of warm showers, especially right after feeding...not sure why but the warm showers really helped a lot.

In between it didn't really bother me if I weren't swallowing anything or talking much.

Each are different, but if he doesn't have any pain management drugs in place, now is definitly the time to get them.

Best,
John

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

I just translated everything that you wrote and sent it via mail to my dad.

But, you know... Sometimes it really worries me what the outcome will be. His staging was T2N3, although his neck is now so much better. Last week on the weekly check up the doc said that lymph nodes and cancer are almost 3/4 gone. This is great news after just few rads/chemo. I hope it gets this well till the end.
But it worries me if tx will really work as the prognosis for those cancers is so bad. Especially if lymph nodes are so much involved as his were/are. I know that those survival prognosis are quiet old, but... it still worries me. Will all this pain that he is going thru now and will go thru in following weeks really be worth it? Will he survive 1 year, 2.. 5 years? Sorry if I sound a bit pesimistic - 99% of the time I'm really optimistic and I strongly believe in his health... But still... You all write about highly curable H/N cancers but as I read in many articles the prognosis is bad...For my father's stage (n3) even worse. They still connect the outcome of this desease with N staging. The higher "n" it is, less successfull tx will be. And he is also HPV negative.

But really thank you! You are all angels that help me thru this!!

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

I just translated everything that you wrote and sent it via mail to my dad.

But, you know... Sometimes it really worries me what the outcome will be. His staging was T2N3, although his neck is now so much better. Last week on the weekly check up the doc said that lymph nodes and cancer are almost 3/4 gone. This is great news after just few rads/chemo. I hope it gets this well till the end.
But it worries me if tx will really work as the prognosis for those cancers is so bad. Especially if lymph nodes are so much involved as his were/are. I know that those survival prognosis are quiet old, but... it still worries me. Will all this pain that he is going thru now and will go thru in following weeks really be worth it? Will he survive 1 year, 2.. 5 years? Sorry if I sound a bit pesimistic - 99% of the time I'm really optimistic and I strongly believe in his health... But still... You all write about highly curable H/N cancers but as I read in many articles the prognosis is bad...For my father's stage (n3) even worse. They still connect the outcome of this desease with N staging. The higher "n" it is, less successfull tx will be. And he is also HPV negative.

But really thank you! You are all angels that help me thru this!!

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Vanessa, like you mention, many of those stats are old...many never included HPV+ derived Cancers (as was mine)..., not sure if your father's tissue was looked at as for HPV.

HPV is greatly on the rise and expected to over take tobacco related H&N cancer within the next few years.

It also has a tendancy to respond a little more favorable to treatment with a slightly higher rate of cure.

But as you mentioned, not sure of the outcome and life expectancy after. Unfortunatley there are no gurantees of success...but then again, any of us could go at anytime, cancer or not.

I was Dx with STGIII SCC Tonsil Cancer and also had a secondary lymphnode pop up too...also like mentioned HPV+.

Sixteen weeks of four types of chemo and seven of those with dauly radiation.

The tonsils were removed prior to treatment, but the tumor was not. It dissolved away half way through treatment, never has shown itself again.

That treatment and diagnosis was in early 2009. So now over 3 1/2 years later, I am doing well with no signs of disease and actually very minimal long term side effects.

I'm not on any meds other than for acid reflux....

My taste and saliva are back, taste 1005, saliva around 95%...life is good.

Have faith, be positive and hopefully everything with your father will work out favorably.

Best,
John

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