Seeking Info

Welcome Bobbie..., one thing that I have learned up front... If you trust your MD's let them make the tough decisions.

I didn't have as you..., mine was STGIII SCC Tonsils HPV+ and a lymphnode. Sixteen weeks, four types of chemo, seven of which were concurrent weekly with 35 dailt rads.., after the tonsils were taken out first thing.

No PEG, but I didn't have it as rough as many..

A lot of people endorse Mugard and L-Glutamine for the mouth sores...

Check the SuperThread, first thread on the H&N Forum, tons of awesome information...

One thing I can tell you..., stay very well hydrated and take in as many calories as you can... For me at about where you are, I just switched over to Ensure Plus (4-6 or more) cans each day, plenty of water and a few sliced peaches to keep the swallow muscles going.

I usually numbed up the throat with Magic Mouthwash (Larry's Solution #2 for me)...

Hang in there, it'll probably get worse, maybe not... But you will definitely get through...

Best,

John

Welcome to the forum Bobbie. Sorry that you found yourself having to come here, but you will find many folks here with alot of knowledge and good advice.

I am a caregiver to a loved one (Male, age 51) Stage IV, BOT (base of tongue) HPV16+, 2 lymph nodes involved (same side) that was diagnosed in Aug 2012 and finished treatment (7 wks Chemo & Rad; no surgery) in early December. He just had his 3 month PET scan and got an NED (No Evidence of Disease) scan! During his tx (about 3-4 wks in) he found himself needing a feeding tube. He opted in the beginning to try it on his own but it became so troublesome with swelling that he could no longer swallow food as well. The feeding tube was put in rather quick and easy and he soon began getting his nutrition with Ensure and/or Boost protein drinks. This was his lifesaver, in spite of losing about 50 lbs (he started out about 230) He had the tube up until about mid January. It is not unusual to have the tube put in before tx. Most doctors insist prior to tx. But, if not, most find themselves midway needing it. ....although, some have toughed it out and did not need one. Unfortunately, he was losing weight rather quickly and we had no choice but to get it in. 

As far as surgery goes, we were not offered it as the cancer to the tongue was too deep, nor did they even consider surgery to the neck . I don't know what kind of surgery you were to consider, but I find it interesting that it was "your" decision and not a doctor or a board of doctors to make the decision for you...they are the experts. I don't like to hear that a person has to make a decision for tx such as this.....how qualified are we to make such a decision?

I think you will find many different folks that will chime in here anytime and give you their opinions and advice and also tell you abour their treatments. You will find this forum very friendly and helpful in getting through your journey. 

If I can offer any advice at all, it would be to get the feeding tube very soon if you are having any difficulty whatsoever in swallowing. Also be sure to swallow! If you do not use your swallowing reflexes, you will lose them....you must Swallow! Stay hydrated...lots of water, no matter how hard it is to drink....get that water!!! 

God Bless,

~C

Hi Bobbie,

Welcome to the H&N forum and in the same breath, I am sorry you find your self here.

I had extremely good luck using magic mouth wash for the sore mouth and throat. Using it helped me keep drinking, swallowing and allowed me to sleep (for awhile). 

I also had a PEG installed and like to lay back in my recliner and drip, drip, drip away.

Most important, the crew at H&N central convinced me to drink lots of water and I credit the utilization of that information with my less bumpy trip.

Good luck in the rest of your trip, it is bound to be a challenge, but you can do it.  Remember keep your nurses and doctors aware of ALL side effects, they often have something for them or you can sure pick our brains for information.

Best,

Matt

I was given a choice of treatments and chose surgery, radiation and Erbitux (as if I knew anything).

Welcome Bobbie !

as others have said, this is the best place you could have possibly found as it is a great source of support and information.  Many many wonderful caring folks are part of this group.

I had a different (tongue) cancer, but I did have a PEG.  It saved my life, so don't fight it.  Many other survivors managed without a PEG, but if you are already having some trouble swallowing at the 2 week mark, I would highly recommend you get one and get it ASAP.

However, even with the PEG, you will have to keep swallowing as to not let those swallowing muscles stop functioning.  Sip on water all day long.   Get yourself a prescription for Magic Mouthwash.  It will numb your mouth and throat long enough for you to do some swallowing.  As John said, check on the SUPER THREAD as it has tons of information on all phases of treatment.

Since you are already going thru radiation, you are well on your way towards recovery.

You can do this !

rachel12yrsuv said:

Hi Bobbie,
Let me start by
Hi Bobbie,

Let me start by welcoming you to site and wish you didn't need us, but here info is the best.

I didn't have your dx, I had NPC III and I was one of those who surgeon insisted on it like it or not. So when I woke up from exploritory surgery to make sure it hadn't spread to tonsil and so forth, I had a stomach tube. Being 28 at he time(41 now) I was resentful of it because I was a stubborn young Irish girl and it wasn't supposed to happen to me. If I would've have accepted the tube during my tx things would've been better for me, I developed food aversion from chemo and couldn't eat because the smell would make me sick, much like a pregnant womans morning sickness that never went away, I spent hours getting fluids from dehydrating that if I would've used my tube I wouldn't have done.

I didn't get mouth sores that I can recall, but if you have the choice I would get the tube and embrace it as your friend, it can be all the difference of reclining in your chair(like Matt) watching TV and chilling or laying on a gurning getting fluids pumped and instead of 20mins at rads your there fo 6 to 8 hrs.


Hope that helps,

Rachel

Ps. Don't second guess treatments, if your docs didn't agree that woulde said something, stay positive its key to kicking butt!

Welcome to the forumn, just to add to the discussion, surgery can normally be done before as well as after radiation so don't worry too much about that decision. I agree with the others that you have a plan formulated by experts and are executing it. Surgery is just a spare tire in the trunk right now. In cancer, junk in the trunk is a great thing.