New to H&N and very SCARED

RobLee,

I hope you have SOMETHING, which is not cancer.

SCC can be HPV + or HPV -.

The aversion to food and eating only happens to most of us, not all and the condition has nothing to do with whom and how the food is prepared.  You need to live it to understand it.

You are correct to realize that H&N members who have no difficulties with treatment don’t post often?  There are 2 members I’ve heard mention they (may I say) breezed through treatments.  Lucky dogs.

Stage IVa, SCC, BOT, HPV+, 1 lymph node (surgery, rads & Erbitux) was my first go with cancer.  I did not want to believe it and a couple of positive biopsies did not make it any more palatable. I like to stay as positive as my current condition allows me, but life turns on a dime.  Look, you are here.

Matt

My husband had tongue cancer that was HPV negative. He did great with his treatment (surgery, rads, cisplatin), and had a much easier go of it than most. He worked through it, and was off the peg tube within a month or so of completing treatment. It has now been two years since diagnosis and honestly life is back to normal.  I still post around these parts, and I like to check up on my friends here.

Get your diagnosis and go from there. We will be with you every step of the way if it is in fact cancer. Every person responds differently, but you will get through it. Thinking of you.

It didn't take long for my taste to go south. Nothing tasted good except water which is odd because normally it tastes metallic to me.

As for the other symptoms; I've had them all but then again I was a worst case scenario. Even the anti-nausea medicines weren't effective. I landed in the hospital three times during those three months and had overnight stays becuase I had dehydrated.

Everything you've mentioned (some hair loss but not much) I went through and it sounds scarier than it is. Granted you won't enjoy food for a long time, you'll have a PEG tube, and the nausea and accompanied vomiting is quite unpleasant but I made it through that. Just becareful not to get your hopes up. I've been in "remission" three times and it only lasted for about four months at most before moving on to somewhere else. I hope for your sake it doesn't come to that; it's just a big let down to go through all this only to have it return in the same amount of time it took for the treatment itself. Again, I'm the worst case scenario so you probably won't be so bad.

My Husband is now post treatment by a few weeks. He was diagnosed in early July with P16+ HN cancer where they couldn’t find site of origin. He was considered stage 3 because it had moved intot a cluster of lymph nodes in the left side of his neck. He underwent 7 needle biopsies to diagnose followed by exploratory biopsy surgeries - with tonsils removed and 28 biopsies taken from the. Base of his nasal cavity to the base of tongue. THEN underwent placement of the chemo port, PEG (feeding tube) and removal of two rear molars and a wisdom tooth. following the healing from all this, he finally started treatment with 7 weeks of extensive, intense radiation over a larger field due to no site of origin. He also was to have 7 weekly infusions if cisplatin however, only managed 5 weeks due to extremely low white blood count.

Tony had larnyx cancer 10 yrs ago and successfully completed his surgery to remove the mass and many weeks of radiation then. He was back to normal quickly. This diagnosis hit us both hard. 

We are sooo thankful he had the PEG tube, as midway thru he needed it, having lost almost 50 lbs! That was scary at first but is ‘old hat’ now and we have a routine. He has just restarted eating by mouth...slow and steady with boullion with egg in it (egg drop soup) and crushed crackers soaked in it too. He also has managed scrambled eggs, Chocolate ice cream, yogurt and boost thinned with milk. We will take the small baby steps! Most food doesn’t taste good still but he is interested in food and is once again enjoying smells of food cooking. 

Tony thankfully, didn’t have nausea or vomiting as the meds worked for him. We were lavish with the silver sulphate creams and RDD moisture creams for his skin. I recommend that. We also used non stick bandages, secured with a length of gauze for the worst burn spots. Drs and both of us are thrilled with how quickly his skin healed!

his energy level is returning and we are thinking positive and planning for the future. Rest assured, we had some VERY dark days...and nites in the beginning and during some of the harshest parts of the pre-treatment AND worst of the treatment phases. But we are confident in our medical support and they assure us the statistics support a CURE! So, we will go with that!!!! 

Please tell your wife that yes, food will be difficult to smell let alone eat! I ate a lot of soup, sandwiches and quick lean cuisine frozen meals. That’s ok! Whatever it takes to help my hubby feel better! 

Good luck with your journey and ask for your Prayer Warriors to step in to help! We are thankful for our family, friends and neighbors! 

Lisa I.

It sounds like GERD.

The pain when eating etc.. sounds like GERD

Try an OTC zantac.. see if it helps.

I am glad to hear that it's not a tumor.  I hope it never becomes anything bad.

I just had my three-month post treatment PET scan looking for anything *active* in the throat/tongue area.  I get the results next week.

Hello

I consider myself a very positive person and always look at the bright side and the optimistic point of view. I feel I am able to do this because I prepare for the worse case. Don't confuse being smart and prepared with being pessimistic in others peoples view. Because you prepare, that is being positive and it gives you confidence to face whatever you have to with a better attitude. I only wish I had done a little more preparation for treatments I had post cancer which turned out to be more devastating than having the cancer itself. Be informed, be prepared, and be apprehensive because it gives you an edge to ask questions so you can stay positive. Of couse you can smile, be scared and wish for the best outcome, or you can be diligent, be informed and prepare for the best outcome. I think others are actually more scared than you are because they really don't want to know.  Best wishes to you!!!