My father just started radiation this week and only had three treatments. He is not getting any chemo and already we are very discouraged by how he is feeling. He threw up twice on Friday and once on Saturday. We switched the tube feedings to a milder one and are giving him gatorade through his tube. His throat is so horribly sore already he can barely speak. The doctors say he cannot be reacting this quickly to the radiation, but we see it happening. Has anyone else had such a bad reaction to radiation so early on? Also, are there any pain meds that do not effect the stomach? He has been given magic mouthwash and nystatin (he also has a fungal infection in his throat). He already wants to quit because he said he can't go through six weeks like this.
Rett (I don't know how to create the signature, so I'll add some stats for my dad)._
Dad: 80y old, SCC on BOT. Laser surgery to remove tumor. Margins clear. Neck dissection on right side. Tongue reconsturction. Peg tube. Just started swallowing ice chips this week. Began XT on 10-8-08.
Don't stop advocating for him. It so irritates me when a doctor will say something cannot be happening WHEN IT IS.
If your immune system is weak or you have a weak system from illness prior, it is easy for treatments to effect you greatly and quickly.
Get lots of calories and lots of liquids in him and be firm and get them to help with meds for pain. Let them know he is wantring to give up as there are things they can try to help with and they should be instead of arguing if it could be radiation or not.
My best to you and your dad - so not fair to have to go thru this at 80.
Thats just BS Rett!!!
My husband was determined to work all day and have his rads late afternoon,and switched all his schedule to accomodate his treatment.He lasted 4 days.he was burnt both inside and outside of his mouth and neck,he couldnt eat or drink,swallow or speak.
he had a peg tube fitted at 14 days after losing massive amounts of weight in the first two weeks,he had thrush in the first week.
NO ONE CAN SAY DEFINITAVELY HOW THE TREATMENT WILL AFFECT HIM.
Rob was ginger haired with fair skin and we thought that may be why he took it so badly,but at the end of the day i dont know why,and neither does anyone else.some people are lucky enough to sail through with little in the way of side effects,and some are most definately not.I have sent you a post of mine that i submitted which will let you see how bad it was for him.
liz
Thanks Rita and Liz,
I'm sorry about the loss of your husband Liz. He was so young.
I'm sure my dad's age has a lot to do with it. Liz, did your husband use the nystatin to get rid of the thrush? That's what they gave my dad.
I'm on my way to see him right now. I'll let you know how it goes.
Rett
Liz, how do it get to the email post?
Rett
Rett:
How about asking the doctor for pain patches, fentanyl. I used them and they worked great, only change them every 72 hours so you dont need to be constantly trying to remember to give your father pain meds which wear off.
Your poor dad is having a rough time of it already, Im so sorry to hear that. I have a couple tricks with the liquid feedings.
If he doesnt have a pump, ask for one. The doctors can arrange that for him. A pump to start should be set very low like around 40ml per hour, after he tolerates that for a couple times then bump it up to 50 then 60 etc. It could take a few weeks to get it at a faster pace but it will ease the nasuea. This can be done while sleeping, which is how I used my pump. Just make sure he is propped up by at least 2 pillows to sleep. By doing this, it will be much slower and easier to tolerate for his stomach.
Also add about 1/2- 3/4 can of water to the formula when you feed him. With using the pump he will get feeding bags. I used 3 cans formlua and then about 2 more cans of water for overnight. If doing it that way, he will still need another 2 cans daily. Those two things will make the world of difference in how he feels and if he is sick. Slower feedings and water down the formula, it will work. Once he is able to keep this down, he will feel better.
Does your father have thrush? If so then the doctors need to give him meds for that too. It sure isnt easy going thru treatments and I feel very bad for your father right now. This can be done, please tell him about all the encouragement you get from here. It will help him to see he isnt alone, many have been down this road before and will help guide you both.
Hi, Rett,
My husband had thrush early in his treatment and that seems to make the mouth sores much worse. He has gotten thrush a few times post-treatment and the first sign (before it's really visible) is that he begins to have mouth pain when eating or swallowing. He did not have thrust post-treatment until he got a temporary bridge and it seems that any mouth appliances make it much more common. Also, I recall a number of people on this board mentioning that they had mouth sores pretty quickly.
Rett,
I noticed the radiation immediately. From day one, an hour or so after treatment my face felt like mild sun over-exposure and I had a stuffy head. After a couple hours it passed.
Fortunately those effects were mild and never really got much worse.
I also had mild nausea spells off and on beginning very early in my TX, then in my last week the nausea turned severe (over a holiday week-end). I was give Zofan (Ondansetron Hydrochloride Oral Solution) and that took care of the nausea.
I also had thrush around week three and/or four and Nystatin cleared it right up. I was told thrush is common when you have recently been on antibiotics.
I never had mouth sores, but from time to time my mouth was quite sore and I only had very light mucosis.
I would agree that your dad's age is likely a factor. My MO told me older patient seem to have a harder time, but there are many exceptions. Likewise he said some young patients have a real hard time of it.
Overall I did extremely well and I was never very ill. I drove myself to treatments except for the last three when I was still dehydrated from the nausea. Never-the-less, to some degree I experience most of the common side effects.
Rett
i sent the link to your personal e-mail address in your profile.Just click on it and it should open the thread.If it doesnt then click on my name at the left hand side of this post,and then click on "view posts" in the drop down menu.The thread is on page 110 and titled "Can it only be day three"
love liz
Thank you for all your responses. My sister had heard about the patch and has already asked the doctor about that for tomorrow. There is a nurse coming tomorrow who specializes in the feeding tube, so I hope she recommends the pump like Christine suggested. He did have the pump in the hospital. I think the slower feedings do help because yesterday I helped him with his feeding and I made sure it went in very slowly. He did not throw that feeding up. He cannot feed himself because he has tremors (non parkinson essential tremors). He cannot pour the can into the feeding tube. I just hope that he can get through these next six weeks and enjoy some quality of life for the remainder of his life. Thanks for all the support from everyone here. One last question, his lips are really sore, any tips on a good lip balm? I'm not sure which one he is using now, but my sister said it's not working. I think it's aquafore (sp?).
Rett
Rett,
I really haven't heard of to many people that have started suffering so bad so soon, especially having to use the Peg so soon but as Liz says EVERYONE can react differently to the same exact Tx.
I have reprinted a couple of things that may help:
Editing Signature Line:
It helps the responder to your Post if you include facts about your Diagnosis and Treatment, etc under your Signature. See mine below as an example. To add to your signature go to the top of the screen and click on MY PROFILE. Then click on EDIT PROFILE and scroll down to the Signature Block and type away. Once you add it, It appears every post you make and your questions and even responses are more understandable.
Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only pay about $32.00 per 24 can case at Walgreens. That's only $5.00 a day for 2000 calories.
Carmex worked on the lips for us.
It really sounds like he needs something for the thrush.
My husband didnt like the pain patch at first until one day he asked me why he felt so funny and I said "your just HIGH". That easy answer got him thru the initial feelings and now the patch keeps him balanced and energized.
Thinking and praying for you both,
CRAY
I have also used the fentenayl patch for a back problem and the results were great. You don't have the ups and downs as with other pain pills. It takes a few days to get used to it but then you just feel normal (without pain). When I first tried it I felt like someone had knocked the breath out of me but that went away within a few days. I think they may have started me out on to higher dose than I needed, or maybe not. If you do use the pain patch it is very important to have the person who is doing it to read directions well. They have an excellent we site also. Wishing you all the best, Angel
I want to thank everyone who had responded to my posts. My dad is doing a little bit better than how he was over the weekend. He stopped throwing up!!!!! We now think it may have been the stomach flu (keeping fingers crossed).
We asked about the patch and they said to give him tylenol 3 instead. His bottom lip has gotten very swollen since beginning radiation and we're not sure if he is maybe allergic to something they put in his mouth during radiation. The doctors said that the radiation is not going near his lip, so they don't think it is from the radiation. My sister read that the codeine may cause allergic reactions as well, we're not sure.
He also is getting large amounts of phlegm. Anyone have any good tips on helping with the phlegm? He doesn't really drink anything yet, though I do manage to get him to eat some ice chips. Can't wait to have him finish radiation.
Rett
if your dad doesnt drink,he will be in real trouble soon.Dehydration is serious in anyone,let alone someone who is sick and older.His blood chemistry will be all over the place,leading to confusion,kidney problems,constipation,to name but a few.To monitor his fluid intake and out put,keep a chart,and measure how much he drinks and how much he pees ,then take it with you to your next doctors visit.
The phlegm is a nightmare,and a common problem much debated on these boards.Use the forum search engine to get advice on this.
liz
I don't understand your statement, "something that they put in his mouth during radiation"?
The phlegm usually doesn't start to be a problem this soon, even close to this soon so you need to have him seen and be sure to write ALL his problems down and make sure their ALL addressed.
Re Liz' comments on the hydration....HEED THEM WITHOUT HESITATION. Force him if need be. His body is under severe attack, not only by the cancer but it's barbaric treatment and he needs a minimum of 48ozs of water and 3000 calories EACH and EVERY DAY from now until at least 1 year POST Tx. Failure to do so will only make matters worse and in some cases near fatally worse. I know from painful experience.
Rett,
I had good results from Robitussen for thinning the phlegm. Buy the generic and it can go right down the PEG tube. And staying hydrated really helped as well.
Sounds like your Dad is having a really rough time! My heart goes out to him and to your family.
- Margaret
David- I guess it's tongue depressor they are putting in his mouth, so I don't think that should be causing any problems. I guess that keeps his tongue down during radiation. My sister started giving him clariton and that seems to have helped a tiny bit on reducing the swelling on his bottom tongue. We are scheduling a swallow study for him this week, even though the RO told him to start swallowing. He's such a chicken and stubborn on top of it!!! He has swallowed a sip of water and a sip of sprite but then got nervous because he hadn't cleared it with his doctor. Radiation # 9 tomorrow.
You've got to keep him swallowing or it may very well cause him a lifetime of problems. I also assume that she has his doctor's approval on anything she is giving him?
Tell him to not only swallow, but keep opening his mouth to stretch it. I had a PEG, but kept taking water and daily meds by mouth.
Rett:
Hope your father is doing ok. I know he is struggling and its difficult for him and also for you right now. The treatments by now should have settled into a steady routine and that does help a little.
Please help your father by having him swallow daily. One thing that worked very well for me was yoo-hoo. It was thin, soothing and also has vitamins and calories which are helpful. If your father drinks soda it may burn his mouth. I havent been able to drink soda for 1 1/2 yrs now since rad and recovery. I sure wish I could, but it still sets my mouth on fire.
Another small thing that is easily overlooked is to have your dad open his mouth very wide and hold that for about 10-20 seconds a few times in a row, and repeat it several times per day. Swallowing and stretching are SSSOOOOOOO very important. You do not want him to end up like me, at 46 years old I cant open my mouth wider than about 1/3 inch. This probably wont ever get better. Please help your dad by pushing him to listen to this advice.
Again, hoping all is well with your father.
I found a natural easy way to stretch my mouth during Tx...yawning which I did a lot of when I was sooooo tired and weak. I could also control how far I opened my mouth when I yawned and even when I made an effort to not open my mouth much I could feel muscles firing. Certainly I can't say specifically why I have not had any swallowing or mouth related problems but I do know being required to swallow daily and stretching my mouth daily didn't hurt.
Best wishes to your father, Rett. Bad enough for any of us much less later in life when it would have to be tougher to fight. As noted by Christine and others, my doctor put me on fentanyl patches and increased dosages as my condition in mouth and throat got worse. Then decreased once tx were over. That along wiht magic mouth wash and other pain medications is the route he'll have to go. Very difficult for him to experience and for you to see. Take care.
Well, my dad had his swallow study today with poor results. The speech therapist didn't say he "failed" but she said all he should be swallowing at this point is a teaspoon of water at one time. That seems pretty bad to me. Although, maybe they start everyone out slowly. She told him to do more tongue exercises as these will increase his ability to swallow. Do these really help? I'm just afraid he may have to be tube fed forever and that is really horrible for his quality of life. He can't even feed himself because he has tremors and cannot pour the cans into the tube. He'll be halfway done with radiation tomorrow. That's one good thing. I feel like this will never get any better. Maybe I'm just a little depressed for him.
One reason for only the teaspoon is that if food goes down the wrong way it may lead to pneumonia -- The water has less potential for harm.