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treatment started - what to expect next?

j3rey
Posts: 56
Joined: Apr 2010

Hi everyone,
It has been a little while since I posted. I am a teacher and the last weeks of school have left me crazy busy between work and home. My husband started his radiation treatments this week. (One week down, seven to go!) He has not really had any side effects yet. His docs gave him a rinse to start using several times a day called Caphosol. Anyone else used this and did it help? His apppetite is still good and he has been urged to try and put on twenty pounds. He has managed to gain about ten pre-treatment. 5'11'' and 214 lb so he will be able to lose a bit of weight and still be OK. What do we expect next in the way of symptoms? He is receiving rads only with no chemo. He opted not to have a feeding tube so we will be working with nutrition by mouth if we can. Luckily, next week is may last week of school so I will be home with him full time after that. Any advice is appreciated! You have all been such wonderful supporting source.
Jen

Fire34
Posts: 350
Joined: Feb 2010

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's picture
delnative
Posts: 452
Joined: Aug 2009

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

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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
Posts: 56
Joined: Apr 2010

I will ask docs about Biafine. I appreciate your response. Did you have both chemo and rads or one or the other. I was worried about not doing chemo. It was a relief when Moffitt backed up docs recommendation. It was our med. oncologist (chemo man) who decided it wasn't needed. Did you lose your appetite or was it the pain of eating that held you back? Just wondering what we will be up against.
Thank you so much.
Jen

j3rey
Posts: 56
Joined: Apr 2010

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!. :)

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

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
Posts: 56
Joined: Apr 2010

You can get aloe juice in most health food stores. Here in Florida, it is even sold in the produce section of Publix (our major grocery chain). It doesn't taste too bad and is a little oily. It kind of coats the throat. It was recommended by our Radiation nurse, who said it will help with the raw throat. I guess burns in the throat are the same as the burns on the outside of the skin when going through radiation. I understand from others who have been through it that it produces a 'sunburn' on the skin (and I guess inside the throat too!) Aloe is great for healing sunburns so I guess it makes sense that it would help here as well.
Jen

j3rey
Posts: 56
Joined: Apr 2010

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

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

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

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

My dad is half way through treatment for tongue cancer. He is getting 35 rad and 7 weekly chemo treatments. He does not have a feeding tube and is doing okay at this point. He is also a big man and has some extra weight. He did lose 6 pounds right at the start of treatment but has slowly put on weight since. He was in so much pain before from the cancer that is now eating better.

He does have a lot of pain in his throat and is losing his voice. He also has no taste, but is determine to eat. He does drink 2-3 Ensure a day to help with calorie intake also.

He using the baking soda/salt mouth wash all day long and that has prevent sores from chemo.

I wish you all the best and keep us updated in his progress.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

The only thing I'd add to the above is that I didn't get the PEG until the last week of treatments when I could no longer swallow and had lost 35#. That a was 9+ weeks ago and I still cannot swallow. If I did not have the tube, well to avoid starving to death they would have done an emergency procedure to install it.

Your husband's Dx and and mine are *almost* exactly the same. Occult tumor (couldn't find primary), neck dissection where they took out about 50 lymph glands. The main difference, and the reason why I got chemo, is that I had 7 glands involved with micro extracapsular extension (some cancer coming outside the lymph capsule).

The chemo really does a number on epithelial cells (like the ones that line the mucosa) so along with radiation, my throat was pretty fried. This *might* not happen to your hus. If it does, he'll probably notice it around week 3 - difficulty swallowing, and then it gets a lot worse.

He can still get the PEG later, and the procedure is really no big deal because they sedate you pretty well.

The whole experience was pretty brutal for me, so I hope your husband's goes smoother.

Best,

Mick

j3rey
Posts: 56
Joined: Apr 2010

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

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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
Posts: 56
Joined: Apr 2010

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.

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

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's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

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?

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I didn't really lose it for any extended period, but I did get pretty hoarse at times...raspy.

My wife probably wished I would have lost it at times, LOL.... I know I like to gripe and moan, which I did plenty of that...my outlet I guess.

Once during the second big round of chemo, I let myself become a bit de-hydrated. Just wanted to sleep, more I slept, less I drank, more I wanted to sleep, worse I felt....bad cycle.

I complained that she was making too much noise taking a fork from the drawer...she didn't let me get away with it though, especially seeing as she was trying to make something for me that I could eat....

John

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

That is how my dad voice is. Sometimes it is hard to hear him then it will come back all of a sudden.

He had the de-hydration problem before he even started treatment. I think they scared him with the chance of kidney damage so he has really been drinking since then. They also give him extra fluid during treatment.

Thanks for all of your advice.

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

I used the amifostine on just my first time doing radiation but not on the second time, I can’t say if it works or not, but I have had right at 14,700rads of radiation and I have about 65% or more of my saliva glad still working. I don’t have enough spit to swallow when eating but I can go a very long time with out having to wet my mouth.

All the best to both of you.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I can go only my experience, as I did have the Amifostine.

It is a rough road, but no more than most of anything else I was going through. It's injected into your stomach every day just befoe the radiation treatments. It would leave a red itchy spot so they'd move to a different spot each day. Then eventually all of those dried out and I had a scaly dried stomach...

Eventually (as I have read most do) I started having a reaction (around the 30th dose. I started getting really highe fevers at night, so I had to stop them.

But for me, I can only think that they helped as I never got the thick mucous and have regained a big portion of salivary function.

John

PS Hi Tim, hope all is going well for you and your wife...looking forward to your next trip to Tampa.

JG

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

I was very lucky with the amifostine as I did not have any side affects taking it except for a lot of sore spots on my stomach. The stuff is very expensive but I believe it does help some in protecting the saliva glands.

I will be leaving for vacation in a few days but this time going south to Honduras for some follow up treatment at USHA (routine maintenance), so if you don’t see me posting for a few weeks it is because I don’t have any internet service. I am hoping to make a Tampa trip soon I will let you know. All the best to you my friend and God bless you and your family.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Hoping you both have a chance to have a little fun in the old haunts.... Hope your son is doing well also, I forgot did he finally locate to Florida?

God Bless You and Yours As Well~

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