welderdan's Journey with Squamous Cell Carcinomas, Laryngeal a...

Had a double dose of Cisplatin 3 times with radiation. Could not function without my nausea medication. The nausea wore off after two weeks, but the effect on my digestive system; gas,regularity, and even reflex between stomach and mouth is still a problem..5 months after treatment. One of those "live with it". Other issues with blood cells, bones, and maybe more are being dealt with.

I won't lie to you, from about my third week thru my 33rd treatment, I was on fire. Covered my skin with Kendall ointment and gently cleaned my stoma. My neck looked like a well done grilled pc of meat. I was getting 6,120 cGY which I now know that's pretty high. Had to eat soft foods entirely as my throat inside was raw. Couldn't even use my LARRYTUBE or LARRYBUTTON with HME filter. Stoma area was very sore. Used, and still do alot, a 2" Stoma Apron with a sticky strip on it. But, as this has helped me to be cancer free for now, It has contributed to my current treatment HBOT.

With the aggressive treatments Cisplatin (chemo), and over 6000 cGY radiation in the head and neck area, the entire area gets hit, no real way to shield everything, resulting in my gums, jaw bones, spine, and who knows what else was hit. My teeth are first thing to die out and began disintegrating. X-Ray shows loss of bone. This condition is spelled Osteoradionecrosis [ORN]. ( A good thing to discuss with your doctor) And so I am getting 20 of the treatments prior to oral surgery, and follow up with 10 more. It's a chamber, pumped to 2 atmospheres of pressured, 100% oxygen that stimulate growth of new capillaries and cells throughout my body. It has, in two weeks, helped heal my throat, surgery area, for my pain level is down 50%. Hope it revives my mouth. Also, the little tremmers down my back and legs have subsided when I look down.

There's a new side effect every day, no two days are alike. Been fighting for 10 months, and for every good, there are no so pleasent things also. You've got the big ones, nausea, pain, weight loss, hair loss, one minute you're freezing, next you burning up, I have thyroid issues now, body just shutters for no apparent reason, loss of taste, constipation, laryngectomees loose their smell, can't blow your nose, can't whistle or blow out a birthday candle. The real side effects are the changes in your life and how well you deal with them. There's a pill for pain, Your courage and strong will to overcome these changes is what will bring you through this. I'm as happy today as I was before I got this.

I'm happy today that I did have my larynx completely removed. As I read other post in here, and all the problems with feeding tubes and other things, with that lump GONE from my throat, I could drink within 6 days, they pulled out my nasal type feeding tube, and I went home on the seventh! Been eating all I can eat ever since. Chemo and radiation dictated my diet for sure, but within 1 month upon completion of treatments, taste started returning. I'm saying I have no regrets for having a larygetomy and all the lymphnods as well removed. Had my first follow up CT-SCAN a month ago and radiology found nothing. If it's not there, chemo doesn't have to shrink it!!!