Neck Dissection Results, Further Treatment, Spindle Cell Features

I was dx in March of 2012 with stage IVa, base of tongue, 30mm primary, 60mm largest lymph node, the only saving grace was that the PET showed no metastises.  I had induction chemo (Taxotere, Cisplatin and 5FU), 33 days of IMRT, 8 sessions of Erbitux and two neck dissections.

What you have heard about challenge, discomfort and what have you is fairly accurate.

I would make a strong point, DON'T FIGHT THE PEG!

I was not happy when my RO said I had to have one, but the tipping point argument for me was when he said that prior to the widespread use of a PEG tube, most head and neck cancer patient deaths were due to starvation!

I had the tube, I didn't want to use it, I was sorely afraid of losing the ability to swallow, but it allowed me to get enough calories in so that my weight loss was not dramatic, I just had to keep up with the difficult experience that swallowing became.

A word of usage advice.  When you have the tube clamp open and are either flushing the tube or actively 'feeding', if you feel the urge to cough, sneeze or laugh, close the clamp before you sneeze, whatever is in your stomach or in the tube will go flying out!

hope things turn out well for you

Please don’t give up.my husband had the rads and cisplatin for his tongue cancer. He was otherwise healthy and young like you and he did well with the treatments. Yes, he used a PEG tube. But he wa also off the PEG one month after treatment ended. He didn’t go deaf or lose hearing from cisplatin. He loves music. Still sings to our kids, and to me, and can even still play his saxophone. He talks great, and you would never know he had part of his tongue removed unless he told you. He eats anything he wants. Last week, he had. NY strip steak, a far cry from the PEG tube. His neck has scars from the neck dissection, yes, and he does clear his throat a bit still, but he is doing great. We are two years out from diagnosis. Life is amazing. You are strong, and so is your wife.

Some tips I have for you are: Apply aquaphor at the radiation site immediately after radiation and again before bed. My husband is very fair, but his neck did really well with rads keeping up with the aquaphor. And use a pillow case that you don’t mind throwing away when you are done. Eat all you can and try to gain some weight before rads start in case you need a peg. My husband had a peg placed before rads started. That was a good idea. He lost about 20 lbs during treatment but is now back to his weight before treatment began. He looks like his normal self. There will be more tips once you have a treatment plan, but please hang in there and do not give in. You can beat this and live a great life with your wife going forward.

You've been dealt a crappy hand...  So be mad and cry it out but get it out of your system because you have stuff to do.  You're young and you have a fight in front of you.  It sounds like you have a great team of docs in your corner (now).  If you've got plenty of extra weight, you could defer the PEG tube...but if you're thin you should consider it.  Lots of good advice on these forums.  These folks have lived it.

Good luck and fight the good fight.

Brandon

My husband was pretty much in your situaiton excpept he's much older.  I won't lie. The treatment is brutal.  I also won't lie when I say you can do this!  My husband's treatment center strongly encourages a PEG prior to treatment.  There is no one right decision about this but I can only tell you that even with a PEG, calorie intake and hydration were an enormous struggle even after treatment ended.  I am forever grateful that my husband opted to do it and that we got all of the issues with the PEG placement, and he did have a few, behind him before the real tough times started.  Having said all of that please know that he got the PEG out less than 4 months after treatment ended.  He can swallow and talk (he totally lost the ablity to talk during treatment and we did not know if he would ever be able to work again.)  He's not deaf,  Cisplatin does not make everyone deaf and his kidneys still function I believe partly because he did have a PEG.  It is very important that you maintain hydration when you are on Cisplatin.  He would simply not have been able to take in enough fluids enough without the PEG.  One thing I have learned is that everyone responds differently to this treatment plan.  You don't know how you will do.  Just take it one day at a time.  My husband is still seeing improvement in his ability to eat and enjoy food.  He works full-time again.  He was able to return to riding his motorcycle and just rode to Canada and back.  Yes, you have been dealt a lousy hand.  I mean really lousy but you can still decide how to live every day.  I think it is important to take sometime to really grieve all that you have lost.  Then, I think you just have to decide how you want to spend tomorrow?  Take the power back from this beast of a disease and know that life can be very, very good again on the other side of treatment.  My husband actually told me he has never been happier than now, 7 months post treatment. It is a game changer for sure.  Your age is in your favor overall, so there is that on your side.  I don't think any of us are saying to insist on a PEG, just that it is something to remain open-minded about and in the end do anything, and I mean anything that you decide will get you  through this treatment.  It's up to you.  Stay strong and keep us posted.  

JAL23,

Your case has taken a number of turns from your first post.  Are you up to 10 doctors now?

Regardless to all that has happened and no matter what Doctor Google says, it looks like there is agreement on treatment of this cancer with rads and chemo.  You are correct, this cancer is different.

In my opinion, they just looked at your age and thought, no way.

I also think, you need to get your head in this game to win.  Treatment can be rough and can kick the c _ _ p out of you.  Nutrition and hydration are the lynch pins; they are also the easiest and hardest to satisfy.  I drilled it into head that I would drink tons of water and swallow often. I ended up drinking about 10 glasses of water a day.  I had 2 PEGS and managed to drink one meal a day and the rest by PEG.  I was happy to drink my meals and had the PEG popped at 2 weeks post.

There is a never ending debate about a PEG or not.  If you need one, it is a life savior.  If you can swallow, you can drink your calories.

By staying on top of your condition during treatments, your team can adjust things to make you more comfortable, to preserve your hearing, to hopefully make life less miserable.

You haven’t officially started, so it is a little premature to garner 1^st place in the worse off category.  Some members really do have horrific stories and I don’t want anybody to travel there.

I was Stage IVa, scc, bot, 1 lymp node, hpv+ (surgery, rads & Erbitux). I am 6y 8m post, I do eat and taste most everything, my life is very different, but it is good.  I hope yours is good too.

Matt

I'll just throw in my $.02.

I'm young-ish at 47 and was in good health when diagnosed (SCC BOT Stage IV).

I too had heard all the horror stories regarding treatment and the side effects and pain. My treatment was the standard 35 radiations with 3 mega doses of Cisplatin.

My experience may be far from the norm, but, it's obviously possible.... Overall I never felt any worse than if i had the flu. I never threw up and was only stuck in my bed for about two weeks. I also never had a feeding tube.

I did have a consultation with the surgeon who would place the PEG tube just in case it became medically necessary and we'd have that step out of the way (it never did).

My reasoning for no tube was simple; It was a mental bummer and the docs wanted me to swallow water orally and do tongue exercises several times a day. I figured, why not just add my liquid nourishment orally then too (I was on liquids only for maybe a month or so due to throat pain). I also was warned that becoming dependent on the PEG tube for an extended period of time would make rehabilitation into eating solid food more difficult and could result in a 'woody' or rigid throat that may never tolerate solid food again. As a result, two months post treatment I can literally eat anything I want (had Mexican food with chips and spicy salsa last night).

Regardless what you choose to do in any of your treatment, it doesn't all have to be hell. I found that my mental outlook helped so much.

When I was forced to drink my liquid meals and my throat literally felt like fire, I went outside and looked out at our garden or pond to remind me why I was willing to go through this. I also do some breathing exercises I found online. Those really helped with anxiety.

Good luck to you!

JAL23, how are you making out?