I am new here and just started treatment. I�m at stage 3 oropharynx w/ neck metastasis. I have completed 1 chemo session of 3, and 3 radiation sessions of 38 (every day for two months). My airway is crowded and it is making it difficult to breathe sometimes. Some days I will sleep better. It is hard to do anything that requires attention. My son has to reintroduce me to the internet. I�m hoping talking will keep the anxiety at bay. It seems like I�m close to being oxygen starved at times. I have to sleep sitting up, due to the obstruction problems mentioned, and it is still hard then to get quality sleep. I believe I will be getting a feeding tube and port for chemo soon.

I�ve also experienced some drainage issues in my throat, feels awful and it is hard to swallow since I started the radiation. The fluid is from the tumor I was told. There is some sharp pain associated with the tumor that comes and goes. I have probably been taking too many pain meds for that, but should be getting something stronger soon.

Sorry to sound so bleak, but I figured I would get it all out there. If anyone can share their experiences with similar issues/problems with me I would greatly appreciate it.

*Has anyone had problems sleeping?
*Similar issues with tumor pain and drainage?
*Is it typical for the pain and sleeping problems to come and go?

Thanks for any help or suggestions, Ed

Ed, you have come to the right place for lots of helpful information and compassion from people who have been through what you are experiencing. Some people have an easier time with treatment than others. I know my son (who is doing great, now, 4 years later) had sleep problems and the doctor gave him a sleep aid. At one point, he did have some swelling in his tongue causing breathing problems but in his case it was a reaction to a medication. THey gave him benedryl which made the swelling go down. This may not be what you are having a problem with, however and I'm sure you will hear from others very soon with some more direct experience. How great that your son is helping to get you reintroduced to the internet. It really does help to talk to others. Keep checking back here and let us know what's happening.

Hi Ed. Welcome to OCF. You have found the very best site to help you with your battle. Its ok to sound bleak, cancer is no laughing matter. It really is a battle, a huge one!!!

Sorry to hear you are struggling so much already. Have the doctors said it will get easier to breathe as the tumor shrinks? There are not alot of members who have oropharynx cancer w/ neck metastasis but there are many experienced people who will help you.

As far as your pain goes, its ok to take pain meds so you do not have to hurt. Being in pain does nothing at all to help the patient. If your pain meds arent strong enough, ask your doc for the fentanyl patch. They come in 12.5mg, 25mg, 50mg and 100mg strengths. They have to be changed every 72 hrs. Why I suggested this to you is because that it would give you a steady amount of medication. Then you can get some other meds to take occassionally for brakthru pain.

It must be horrible to have the sleeping problems you have described. I also had some trouble sleeping, but nothing like what you are going thru. I would go for days with no more than 2 or 3 hrs sleep a night til I was so exhausted that I would sleep for 10 hours straight. Ask your doc for sleeping meds that are ok to take along with being on painmeds.

Most important things to remember thru this. Keep yourself hydrated with at least 48oz water daily. No matter how much it hurts or is difficult to swallow keep doing it. You will have much bigger issues later if you dont keep those muscles active. Next tip is to keep your nutrition up. Your intake should be at least 2500 calories daily, more is even better. You should have alot of protein to help with healing. A feeding tube will greatly help you with this. When you get the port and feeding tube, ask for a pump so you can do the feedings overnight. I have lots of feeding tube tips cuz Ive had one for 2.5 yrs. I had a port too, its wonderful not to be stuck so often with a needle. Another tip is to several times per day to stretch your mouth open as wide as possible and hold it open for a few seconds. Do a couple sets of this exercise to help prevent yoru jaw from tightening causing big problems later.

Please feel free to ask all the questions you want. We are here to help guide you thru this. Best of luck with everything.

Ed,

Were you a smoker?

Has anyone mentioned HPV?

Read my Signature Line below.

Hi guys I'm Ed's son, Saul, and am writing this for him. He's going through a bad spell right now. Nobody has mentioned HPV to us, but I guess it could be a possibility.

He was a regular smoker on and off for the last 20 years and drank more than he should.

The sleeping issue is a huge problem. He has had less than 4 hrs the last 2 or 3 days combined. There have been sleeping issues in the past but now they have been compounded, and combining that with pain has left him feeling pretty awful. He has a radiation treatment tomorrow and is not looking forward to it. He's also not eating that much, I'm nagging him to but it's difficult. He's never been a big eater. I'm hoping he'll get a feeding tube soon. My sister has been taking him to his treatments during the week and I spend the weekends with him, .... I mention that just because I don't speak directly to the doctors I live out of state. Wish there was more I could do, just trying to keep him positive.

Anyone experienced sleeping issues? That is a huge issue for him right now.

Thanks

I'm not sure what pain meds he is on but some may be short acting(usually 4 hours) so as those wear off he may be waking up.
There are pain meds that are longer acting and less disruptive to sleep patterns.
The MD may also be able to help with the obstruction relieving the breathing. The discomfort should be stressed to the Dr.
Any good MD is interested in treating the whole patient so mentioning the sleep issues is important.
There are liquid supplements that your dad can drink to help him with his nutritional balance as well. You can look at the amazon link here and look up Carnation 560.
In our case, the ins pays for the supplements. So, we had to order it through the MD as well.

Saul, your sister needs to talk to the doctor tomorrow about the problems your father is having. Even though you do not see the doc face to face it doesnt mean you couldnt give them a call too. Make sure your father has signed all the necessary HIPPA papers so that his medical team will speak to you and yoru sister. Regardless of what caused your fathers cancer, he has it and is being treated. Being HPV+ gives a better chance of no recurrances.

If his sleeeping is that bad and he isnt getting nutrition then something needs to be changed asap. As I mentioned above there are the fentanyl patches for pain which will last 3 days. A sleeping pill can also be prescribed. His breathing problems muct be addressed with the doc.

If your father is not taking in enough nutrition then he will feel terrible. If he had proper nutrition and hydration then he would feel so much better. I went into more detail in my previous post.

Best of luck with getting your father the help he needs. Make sure either you or your sister speak up since obviously he is not making his needs heard. I am speaking from experience, I was malnurished and dehydrated due to not taking in enough. Several times I ended up in the hospital from this. Ask the hospital if they have a visiting nurse that can come out to help him too. I had a nurse come out every few days to check on me. Dont be timid about speaking up, your dad needs your voice right now while he is in this weakened state.

Please check back with us and I hope I was able to give some assistance.

Thanks for the suggestions. I just told him what you were saying about nutrition and he immediately finished a can of the nutritional shakes. I having been getting him cases of the ensure plus (350 calorie) for the last two months. He doesn't care for them much but I he realizes he needs to take them.

Any suggestions of other food products he can eat? His teeth have been pulled. I'll get him some cases of the carnation 560 also. Anything I should stay away from? i.e. acid, bases, etc.

My sister says he should get the tube next week. The doctor said he would offer morphine once the tube is in. Not now since he's afraid the morphine would knock him out and he wouldn't get enough nutrition.

Thanks again for all the help, my sister should be checking in on this thread now also

Use the Amazon link and get the Carnation Very High Calorie. I use that too. Its next to impossible to find it in any store. I have lost all my teeth from radiation damage. He can eat anything he is able too. The only limits are what he is uncomfortable eating.

Here is a link for easy to eat foods that I compiled a while ago. I eat alot of tapioca pudding with whipped cream. I make several large bowls a few times per week. That is very fattening. Chocolate milk is 400 calorie a pint, that would sooth his sore throat. I also drank alot of yoo-hoo. Push the fluids and calories, if your dad would get the right amount today then tomorrow he would be feeling better already. Hope he understands how important this is. Without the right nutrition/hydration he will struggle and feel terrible.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Once your dad has the feeding tube placed, it will be easier to keep track of the calories. Make sure you ask for a pump to go with it. He will be getting prescription feeding formula. I still use a can of the Carnation VHC for the hi calories along with my regular formula.

Ask the doc for the fentanl patches. They are stronger than morphine and regulate the medication evenly over a 3 day time frame. Much easier.

Glad to hear your sister will be on too. Nobody does this alone. I didnt have a caregiver the first time around with chemo/radiation and I paid dearly for it. Hope your father learns from my mistakes.

it sounds very familiar to my diagnosis so i'm replying to say that when i went thru the same treatment i had sleeping problems and slept sitting up for 3 to 4 months but it did get better and now 2yrs post treatment i sleep fine and going good which i hope will be the same for you much love and peace to you and your family.


primary on tonsil
mets in neck
7weeks rad
3 chemo
teeth removed both sides
peg in/peg out
1st pet scan neck on fire
last pet scan all clear
so far so good