Head and Neck cancers Support Group

Reading this discussion gives me some hope....I have just answered one that left me totally hopeless BUT here are some positive things being related.

I am on day 10 of radition therapy....I have had 3 heavy (week long) chemo sessions & now have weekly lighter chemo sessions.

I seem to have all the side effects that everyone else here has related....the sore throat, mouth & tongue; not being able to wear lower dentures & the absolute loss of taste & dry mouth necessitating at least one bottle of water everywhere I go. It did raise my spirits some that some taste buds regenerate.

The upside of my treatments so far is that the large pecan/small walnut sized tumor can no longer be seen with the naked eye....part of me wishes they would rx a PET Scan to see if it is gone so they could stop all treatment but I know, logically, they have the experience as to how long it takes to kill the cancer.

The other problems for us is the cost...it is 75 miles roundtrip to the cancer center I go to. The American Cancer Society does have grants for gas money but no set schedule for the pay outs. I have been told that the money may not come thru until after all treatments are done. While they still will be helpful, trying to get the money together with the fluxuating cost of gas is a big trial. Just figured out the bills for this month &, if I don't cut back in some places....food???? (I get Angel Food to help with this), I don't know how we are going to make the everyday trips. Even with an economical car, it still runs about $15 every 2 days, which is almost $200 a month. Terribly frustrating.

Shoot, I've written enough here....guess I'll take another Ativan & see if the nerves & worries get down to a more stable level before I have to leave for today's radiation.

Down to 4 more radiation sessions & 1 chemo, which I will get on Friday.

Missed yesterday's radiation as on Monday, my throat, which the doctor described as looking like "raw hamburger" really got to me, so cancelled appointment & stayed home. Is a bit better today, so, hopefully, can take today & tomorrow's treatments...rest over the weekend...& then complete treatments on Monday & Tuesday.

Wish more people would write on this site as it makes me realize I am not alone with this pain but I can understand their not...somedays I am just mute because of the pain.

At least the end is in sight & maybe, in a few weeks things will be better.

Does anyone know how the professionals know how many radiation treatments are necessary when the cancer was surgically removed, and the pathology report states "did not extend to the margins"?

I have received 18 treatments 1 x daily x 5 days weekly so far. At treatment #13 I could not swallow because of the pain. I stopped treatment (on my own) at that time and after 2 weeks, the pain was gone. Now I am undergoing another 20 - 25 treatments with a lesser dose of rads in order to hopefully prevent the throat pain this time.

There is no tumor to look at or measure. This is strictly for "prevention" purposes. How many treatments are necessary? I can't seem to get a straight answer...

Thanks

I had a co-worker whose husband went through this type of radiation, and he ended up with no saliva in his mouth. He had to carry water with him all the time and he could not eat solid food. He was taking ensure. He is still around 6 yrs later, so I think he overcame the ca!

It has been 1 year 4 months post radiation for vocal cord cancer. So for the cancer has not returned. I still have a problem with dry mouth, heavy mucous, and a muscle cramp in my neck when I yawn ( has anyone else had this problem?). This is the second cancer I have been treated for due to Agent Orange exposure in Vietnam. I was radiated along with seed implants for prostate cancer 8 years ago, still no recurrence. I have put my life into God's hands, and try to enjoy every day to its fullest despite the constant dry mouth, hoarseness, and sleepless nights. Life can be good living with cancer, just look around, there is always someone in for worse condition than you, so keep a good outlook and pray for yourself and all of the other sick people in the world.

Radiation is the real kicker out of the three treatments that i had to have. Chemo, 35 Days of radiation and soft pallet removal from the radiation. I was stage four and had little chance to make it but I am here five years later and kicking butt. Go to the very best hospitals you can, keep the radiation to the very minimum ( be very specific in it's location) I have no taste in food, i swallow with water, no salivary glands at all so a water bottle is with me at all times, my neck cramps when I yawn or is cold outside. my tounge doesn't extend as far, Ilost my speech for a year and had to learn how to speak from scratch. With all of that said, i am the luckiest Irishman alive. i do fine now. I have adjusted to the changes and have accepted that i will never be the same as i was but I can be better then i was.
Do the radiation but be cautious, it will be hard for both of you but you will make it if you want to. You can always find support in those who have lived through it, we are here for you.

My husband went thru 7 weeks of radiation 2x's a day plus erbitux. Followup Pet scan showed clear, but cancer returned with a vengence 3 weeks later. Gave it our best shot, now in hospice care and living each day to the fullest.

I am new to the group but had surgery in March. I had a maxellectomy with forearm flap and 19 lymph node dissection.My question is they want to do Radiation as a preventative as all margins were clear but they won't start till I get all my dental work complete.Has anyone else had this problem?It has to do with Osteoradionecrosis...

I wanted to update everyone. It's been a year and a half since I last answered.
I did treatment everyday 2x for 2 months. In addition, I did chemo cysplatin and taxol (I may have messed up the spelling). As of today I am starting back on Chemo as the cancer is back in full force (proven by a biopsy taking during a craniotomy). My doctors have told me that there is no proven chemo that is known to kill adenoid cystic carcinoma. The chemo I am taking is in pill form (starting at 400 mg per day and after a week moving up to 600 mg per day). The med is called Nexavar aka Sorafenib.

This is my 1st day here. I was diagnosed with tonsilar cancer. Will start tomorrow with radiation session #18 of 35 scheduled. The worse part of this whole thing is the dry mouth and mucositis. The bad taste constantly in my mouth is sometimes overwhelming. Is there anything that works to combat this? I'm taking ensure and I hope I make it without going on a feeding tube. The only upside so far is the tumor is virtually gone, no sign of it. Will my taste come back after treatment ends and will the dry mouth finally go away? I pray it does....