My mom had a tooth that was irritating her tongue for months in 2011 so she finally went and had it removed. The tongue still wasnt getting better so she went to her dr who sent her immediately to an ent and thats where this got serious. Biopsy showed cancer, scc the same cancer that took my gram in march of 2011 (it was also head and neck).
My mom had a surgery in Jan 2012 removed big section of tongue and neck dissection but clear margins. Her tongue just want healing, the ent kept saying it was cause she was allergic to the stitches. Pet scan showed activity on her tongue and neck April 2012. Biopsy of neck and tongue were positive for cancer again. Ent sent her to another surgeon because she said this was beyond her qualifications.
In May 2012 she had another surgery removed more than half of her tongue and total neck dissection. Treatment plan was 30 radiation txs and 6 carbo. Noone can prepare you for that it was horrible she had no peg tube but she managed to make it thru. Follow up Pet scan was good Nov 2012.
Her tongue started to bother her again in Dec 2012. Drs think its just scar tissue from the treatment but its getting more difficult for her to talk and eat. Biopsy of tongue Jan 13 came back negative. Great news!!
Ct scan in Feb 2013 tumor in neck and pet scan showed activity on back of tongue and tumor in neck. Surgeon sent her to a cancer center and the plan is to do Cyberknife and Erbitux. She is so scared of having the mask on again because lately she has been having some trouble breathing when she is laying down.
She has lost about 100 lbs and is really weaked and frail. Im just so worried about how much she is gonna be able to handle.
Is this treatment really horrible?

Welcome to OCF! Yes, treatments can be brutal! Im very sorry to read about everything your mother has gone thru.

the very best advice I can give you is to get her to one of the countrys top cancer centers. That will be her very best chance to get thru this. Her body is already not in the best shape after battling oral cancer twice so she isnt as strong as usual. Plus the major weight loss means to me that she could be malnourished which further complicates the situation. A feeding tube shouldnt be ruled out weather its a PEG tube or a nasal tube. It is a tool that can help her to stabalize her weight and get stronger.

Im also from PA. Wishing you both all the best!!!

Hi there. The worse thing about Erbitux is the rash apparently - it can be uncomfortable. The cyber knife I'm not sure about but there are others here who've had it. Glad she's at a ccc. She should be In good hands... If she's made if through rads previously hopefully she'll be okay this time though she should have something this time out as she's lost so much weight. Try making her protein shakes to help put on some weight and best of luck. Hugs

I'll be starting the exact same treatment program in about a week at UPMC. If your mother is being treated there let me know in a PM and we can get together for coffe in Shadyside. I have been through this once before at UPMC so i can give her a few pointers.

I can tell you that the cyberknif is not near as bad as the IMRT. She will only recieve 5 treatments over 10 days and the after effects were not as bad for me as the IMRT was. I got a mild case af acne from the Erbitux but I have heard of others who have had severe reactions. Charm is a frequent poster here and he had a very bad reaction to it, so yo have to watch it closely

I had a reaction to Erbitux, not the severe allergy or cardiac type, but after a few days I got the rash on the face, so minocycline, 50mg capsules, were prescribed. Then rash on the arms, back, legs, top of my head that itched like crazy, and my hair was falling out, still is 4 months post. Had severe neuropathy, but could have been the Taxotere, which was stopped, and needed a blood transfusion, and IV hydration. Infusion. Had to buy a seat for the shower, walker to save energy, and could not get up the bus stair, so used the lift. One of the meds caused mouth ulcers making eatng difficult, and then relied on the tube. The hospital had to rue out cancer so a CT scan was needed, and missed a few days of rads.The first dose of Erbitux is a loading dose around 450 depending on weight and subsequent ones are less, about 250, after a Benadryl drip, which always put me to sleep

I hope this helps, and good luck.

Thank you all so much, it is so nice to have someone to talk to about this besides my mom. I try to treat her the same way i always have and not dwell on her illness and be strong for her. She had her treatments st Arnold Palmer in greensburg after a consult at hillman. This treatment will be at the hillman at Shadyside not sure when they will begin.
We wanted to have a peg tube in for the last treatment but her surgeon was so against them and there was a few weeks after the rad. was over that she didnt eat anything. That was when she really started to loose the weight.
I am Hopeful that this treatment works and always try to look on the bright side. Thank you all!!!!

I'll be recieving the same treatment at hillman also. I'll post my schedule to you in a PM when I get it. maybe we can get some coffee and compare notes during treatment. I recomend the PEG if you can get it.

Something easy to drink, a fresh smoothie with pumped up protein via protein powder will sooth her mouth and help pack on the lbs. you can add an ensure to it as well. Hugs

We are waiting for an insurance approval before they will schedule her for the treatment so Im not sure when it will begin. I love coffee and would love to have someone to talk to. Thanks again.

Call the insurance company and tell them every day that passes her cancer grows, get their crap together and sign the darn approval. This wait could cost her her life.