treatment started - what to expect next?

What to Expect
Jen
My radiation was twice daily and most of my side effects were lack of saliva and swallowing. They had me doing swallow exercises just to keep those muscles working. I would opt for the tube now as most of here have had one and it was needed as time progressed. I had a lidocaine base rinse for my mouth, but I was also on chemo that gave me sores in my mouth and the rinse helped those along with the radiation side effects.
Where is your husbands cancer at? Mine was right sided lymph nodes in my necck with unknown primary. That is why I was also on chemo. Alos most of us here have opted for both chemo/rad as in my case it had a 90 to 95% cure rate
Best Wishes & Prayers
Dave

delnative said:

No PEG?
Out of curiosity, did your husband's doc(s) recommend that he have a PEG and hubby refused?
Either way, I hope he made the right decision. I know there are people here who went through the treatment without a PEG and did OK -- just as there are people here who thank God they had the PEG. It makes so much more sense to have it put in before treatment has begun, and then if you don't need it, fine. But to have it put in when you're already feeling like crap and your body is in a weakened state is not good.
As for symptoms from the treatment, for me they didn't begin in earnest until about the beginning of the third week, and it steadily escalated after that. Sore throat, dry mouth, can't swallow, feeling weak.
I can highly recommend Biafine, a prescription lotion, to prevent burns on the outside of the neck. (Not much you can do about the inside.) I'm very fair-skinned, and with the Biafine, I just looked like I had a sunburn. It was a godsend.
By all means, get your husband to "bulk up" while he can. When I went into treatment I weighed about 195. By the time it was all over I weighed 155 -- and I had a PEG.

--Jim in Delaware

Yes
Jim and Dave give good advice, and I know you will get more. My only contribution is: only getting rads might make him more capable of getting it done without a PEG, than if he was getting both C&R. The PEG, however, is the common sense solution to what is a struggle for all of us w/H&N- the eating function, and the mouth and throat. And, the PEG is not nearly as bad as one might think (had mine for 15+-months). Can be a blessing, as a number of us can testify to.

There's a number of good liquids, like Ensure and Boost, to get him thru the rough times- AND, Hondo and Scam, along with a few others, know of some quality foods and drinks, and both welcome Private Messages.

kcass

j3rey said:

Thanks Everyone,
Hubby's primary is unconfirmed with a biopsy but showed up on two different scans. Very small tumor/growth on left pharyngeal wall. Had spread to lymph gland on left. He had a neck dissection and 50 lymph glands were taken- cancer in only one with no spread. Because of the successful surgery and size of primary, his docs felt that radiation alone would take care of it. This protocol was also backed up by Moffitt in Tampa (second opinion). His doctors do not want him to have a feeding tube. They feel he will fair much better if he can force himself to swallow his nutrition. My husband is not against a tube, but of course would rather try without it. We are trying to bulk him up at this point, but doing so with sound nutrition (no sugar or refined, processed foods)is hard.
Thank you all for your support and advice. It is so valuable to hear from others who have been through this.
Jen

Moffit in Tampa
I'm in Lakeland, Watson Center for Cancer Research is also affilitated with Moffit in Tampa.....

Skiffin16 said:

No PEG
I'm one of the ones that didn't have a PEG, I didn't refuse it though. It was not really a concern as I was about 275# going in at 6', I had enough weight that it wasn't a concern I was going to waste away.

I personally have no feeling either way on the subject. If it would haven been recommended, I would have had it inserted. I trusted my doctors decisions and it never became a factor for me.

As others stated above, week three was about right for the starting point where eating was not much of an option any longer. I could eat if I chose, but for the limited calorie intake and nutritional value, I chose mainly Ensure Plus and limited the swallowing excercise to jarred peaches, and a few soft foods. All of that was after taking in some form of numbing solutions chased by some form of pain meds. Pain meds consisted of the solution to numb my throat, then either dissolved percocet, hydrocodone, oxicotin, or morphine (although I only tried that a few times)..the morphine didn't do anything for my pain, and made me sick feeling.

I had nine weeks of heavy (three types) of chemo, then seven weeks of concurrent chemo/radiation... Tonsil Cancer STG III HPV+.

I guess it's to me something I didn't miss because I didn't have it. But also in mycase, it didn't become an issue and I made it though just fine. Of course on that same token, I guess it could have been a point of concern if I absolutely couldn't take any calories in and was losing dramtic weight.

I ended up losing about 45# of weight altogether.....

Each and everyone of us are different and respond differently.

Good Luck, and God Bless,
John

Jen:
I had chemo and rads. I was told that chemo (Cisplatin) was an option, but that it would increase my chances of survival by 20 percent. I took it. That was my case, though, so that's not necessarily a reflection on anyone else's course of treatment.
I guess docs differ on the recommendation for a PEG. Whether that's based on the individual patients or the doctors' experience with PEGs, I have no clue. In my case, the docs never even mentioned the PEG as an option: It was just understood that I would have one, and it never occurred to me to challenge their advice.
As for eating, for me anyway, "appetite" turned out to be something in my mind -- something very different from hunger, which is a physical craving for food. (You know, stomach growling, etc.). I liked the idea of food, but the reality of it was way too much for me. You've probably been told this before, but the most difficult time is after treatment ends. Your throat continues to "cook" from the rads for two or three weeks afterward. At that point the smell of food repulsed me -- one night when my wife cooked herself some shrimp the smell nearly drove me out of the house.
Oddly, I became a fan of TV cooking shows, just so I could see what I was missing, even though I didn't want to eat. (Treatment does weird things to your taste buds, too.)
As my treatment progressed, I became unable to eat because it was so difficult to swallow. The rads burn your throat, and it's not only the pain that's difficult but the physical damage that occurs. I used to take Singlair for asthma: a tiny, tiny pill that most healthy people could swallow even without the aid of water. During treatment I couldn't even swallow that little pill with a gallon of water: It was almost as if it wouldn't fit down my throat. I had to grind it up with a mortar and pestle, dissolve it in water and put it in through the PEG. The PEG also came in handy when it came to administering pain meds. Now way could I swallow a big old pain pill.
This is a very difficult road to travel, but talk to anyone here who's been through it and they'll tell you it was worth it.

--Jim in Delaware

j3rey said:

Hi Dave,
Just remembered that our radiation nurse recommended that Mark drink aloe juice. She said that patients able to drink aloe do better with mouth and throat burns.
Just thought I'd throw that out there for anyone else reading!.

Aloe Juice
Where does one get Aloe juice? Does it taste good? Are burns in the mouth and sores/ulcers in the mouth the same thing?

j3rey said:

Thanks All,
Yes, in case of lymph involvement, we were lucky that it was found in only one. There was no extracapsular spread. "Very contained" the surgeon said. Since they are about 99% sure where the primary is, they are radiating that area highly with IMRT and the rest with a bit less just to 'clean up' after the surgery. We will take this day by day and week by week. I appreciate everyone's sharing of experiences, it really does help so much.
Jen

Baking Soda and Hydrogen Peroxide
That's what they had me rinse with frequently....did the job for me. I was lucky in not having any problems with Thrush. It helped in keeping the pasty taste and residue to a minimum also.

I know my Chemo MD was more concerned with the thick ropey mucous that you can get between the chemo and radiation. Not sure if that's a problem only with radiation (even though radiation will/could permenantly damage the saliva glands). She is the one that really pushed the Amifostine and I'll have to say that I never had that thick ropey phlegm.

I did have a very dry mouth for many months. Only able to produce white sticky foam at best for saliva. I'm a year out now (almost) and have regained probably 70% plus of my salivary function again.

I can produce clear wet saliva at will. I don't need a bottle of water with me constanty. I can eat pretty much anything and not have to sip water with each bite. That includes, chips, pretzels, toast, bread, etc....

Huge difference than initially after starting to feel better weeks after radiation was over.

Anyways, I can't help but feel that the Amifostine played a huge part in that. My radiation MD also didn't recommend it, nor endorse it. He said at best it might save me 20% of salivary function... I'm like ummmm HELLO...any salivary function that I can save, I'll go for it....

John

j3rey said:

Amifostine
Our radiation doc has not endorsed this either. Says it does not work. I will have to have a conversation with him, especially if you think it helped.
Thanks.

Never mentioned
My dad's doctor has never mentioned it. My dad also has a problem with the mucus after chemo. It is bad for a couple of days then lets up. So far his problem with the dry mouth is only been at night. It gets really bad if he sleeps to long.

He has found the baking soda helps with the mucus problem. He tried using something else for awhile but the mucus got really bad. He went back to the baking soda and it improved greatly.

Skiffin16 said:

Sleeping
Sleeping has and still is a problem with me, I'm lucky not to wake every few hours and get a little water and get rid of some from ealier....

I only have problems with my mouth and throat drying out at night anymore....

JG

Sleeping
My dad said he is sleeping and eating better then he was before he started treatment. Some nights he still wakes up a lot but has no problem going back to sleep. Now he is back into his old habbit of getting up and eating. He wants things that are cold now, where as before he could not stand anything cold or really hot in his mouth.


Did you lose your voice during treatment?