Just Getting Started With Radiation

my boyfriend was diagnosed with head and neck cancer (unknown primary) in October 07.  he just finished induction chemo a week ago and is due to start radiation/chemo in two weeks.  just when we got the chemo rythm down it is time to start something new and scary...he recently decided the PEG tube was the way to go (he didn't want to go that route initially) reading everyones experiences here has helped me to know he has made he right choice.  i am glad i found the message boards -going through this can be very isolating...no one else really knows what to say or do to help. 

...we will get through the next round with the same humor and faith that got us through the first!

I am 23 treatments into radiation right now, 11 to go. I went to see the gastro. dr. early on to get everything ready for the feeding tube should i decide (need) to get it. I really wanted to resist it because it can become a crutch and then it creates all kinds of issues later on like learning to swallow, jaw problems, etx.So far I have not gotten it. I have lost 10 lbs. is all. Heck, I could stand to lose another 10 since I was probably 20 lbs. over weight to begin with. I have been very lucky that my swallowing hasn't been that bad. I attribute that to a combination of things. Good IMRT treatment, 30grams of Glutamine powder, magic mouthwash w/ EXTRA LIDOCAINE in it. If you do not plan to swallow the magic mouthwash, talk your doc. into adding more lidocaine to the mix. That made a huge difference. Just swish and spit out.

The tube is a life saver for many and I would never ever knock it or advise against it. I would just see if you can hold your own without it. It hurts to swallow, everything tastes like crap, so the mind says why do it, use the tube. But using the tube is not w/o consequence. If you do end up using the tube. You HAVE to excercise the mouth including swallowing all throughout the day. It's very important.

Good luck.

Rick

thanks for your insight.  we have the magic mouthwash already (his initial chemo gave him mouth sores)  but it is good to know that it can be kicked up a notch if needed.  we keep hearing over and over about continuing to swallow even if it hurts!  my fear is my guy is already thin...he can't afford to lose much weight.  eating was a struggle throughout chemo and i think that is what changed his mind about the tube.

chemo made everything taste like metal and this week he is getting his appetite and taste back...we will take advantage of it and go out to dinner as much as possible prior to when the radiation effects kick in!

best of luck to you with the remainder of your treatment.  i hope that you have good support to get you through this

I didn't find this board until I was a few mos out of treatments, and it would have been such a tremendous thing if I had found it earlier on. Such a wealth of experiences and information!!! I, too, was dependant on the PEG tube-lost lots of weight anyhow. Everything to me tasted waxy-gave up food altogether. But I drank water all day, everyday-not even realizing I was preserving my ability to swallow. (I just had a real dehydration issue-which I don't hear much about here)

(SCC, stage IV, chemo, rad & dissection) Question for you-I have unknown primary, too-after 3 surgical attempts and numerous tests, scans etc-and the way I understand it, my radiation field was way larger due to that. Is that what you were told? I still don't understand, or know much about how it can be to never find the primary source!!!!!

Best of everything as you continue on this journey you never wanted or asked for-Gayle

I founf Resurgex to be the best protein drink to help keep the weight on, and I never lost the taste of the strawberry flavor for some reason.

If you go w/ the tube. Make sure his main water source is swallowing. That way you'll stay on top of that he is getting enough water and is using his swallowing.

Good luck to both of you. As you know, it's a tough road.

after one surgery and numerous scans they felt that they didn't want to delay treatment searching for a primary...he is also stage IV...two neck tumors is how it presented itself. one was removed surgically the other shrunk with chemo...right now you can't even feel it!  the first round of treatment was a clinical trial of a 4 drug combo- of 3 three week cycles...it knocked him on his ass but he has had an excellent response. we had to drive to boston every week for an infusion.

Dr.'s told us that often times cancer can hide in the tonsils and is very hard to find and yes - his radiation field will be larger because of the unknown primary.

we can at least have the next round of treatment done locally which will be easier on us

i hope that you are recovering well.

Thank you for the reply; and yes, I am recovering very well. I was offered the chemo (3 drug combo 1st, then chemo-radiation) as an alternative to the (long time accepted) standardized care, which is chemo-radiotherapy. I chose the latter, as I was afraid of going into the hardest part after being compromised by the chemo 1st. I'm glad to hear that doesn't seem to be the case for your husband. I had 2 opinions for each course! What do you do?!  Finished treatments end of April '07, but ended up with an (unexpected) dissection in Aug. I am skinny now, but feel healthy and as energetic as before.  Taste bud and lack of saliva issues are my worst enemy and make eating difficult-but it is better than, say, 4 mos ago; so am hopeful for improvements there. It's all about time, now! Gayle

Hi Meesh:

My husband is moving toward the finish line with twelve more IMRT to go.  He too was stage four (nasopharyngeal was the primary) double lymph gland tumor growths.  His tumors are now gone.  No surgery was or is planned.  From what I can tell from others postings, the experience varies greatly.  My husband seems to fair well as does Rick on this site.  However, there is a gentleman I know with the exact same cancer growth as my husband, same age, same general good health, no health inhibiting habits etc, he is one week behind my husband and responding horribly. 

I will tell you that I'm a huge believer in the glutamine powder.  This is the only known difference between my husband and the gentleman I mentioned above.  Because of the awesome advice I received on these blogs, I started my husband on glutamine two weeks prior to his treatments.  In my gut, I know this is the reason for his success.  His docs office calls him "Superman" because he has so little pain and no mouth sores.

He can no longer taste anything except clear broth soups.  He has lost only twenty pounds, but unfortunately didn't have that too lose (small man).  Fortunately, he does have the peg line.  In his case, it will save his nutritional levels going into the final stretch.  We decided tonight that I will use the peg line to supplement what he can't eat.  I'm meeting with a nutritionist at the center tomorrow or Tuesday.  I hope to get some tips from her on this.  My husband will continue to swallow water or other liquids NO MATTER WHAT.  Again, survivors on this website have made it abundantly clear how important this is.  I agree with Rick that the peg can be a crutch but you are there to monitor that, as I am with my husband.

Keep reading on these pages and you'll learn more from these folks than you will from the doc offices.  Another poster even told me how to cure his hiccups with acupressure!  Boy was he glad not to take another #$%#$ pill!

Good luck!

I too believe the secret to making this treatment so much more bearable is 10 grams of Glutamine Powder, 3x's per day. Glutamine is 2nd only to the power of prayer!!

They should do a study and compare those that used glutamine and those that did not.

I start my last 10 today and as of now only have one little sore on the tip of my tongue and can swallow most things (of course everything tastes terible, but that's another story)

Ohh, one more thing. I also gargle w/ a mix of 50/50 water and peroxide.