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#38142 01-28-2005 02:41 PM
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To All:

First, my thanks to all of you for taking the time to respond. I never expected so many thoughtful comments and so quickly. To address some of the questions. Yes, I am being treated at a comprehensive cancer center - ranked in the top 12 in the country. I have just began to seek other opinions - general oncological consensus is to have the IMRT. Monday 1/31 will be 8 weeks from surgery - I'm feeling some pressure to make the decision soon. Michelle - to address your question - almost half of the right side of my tongue was removed - and part of the floor of my mouth. They did what is called a free flap - graphing skin from my forearm to the tongue including a vein. They had to do left neck dissection to route blood supply to free flap on right side. My lymph nodes on right side were removed 14 years ago at first surgery. I am very fortunate, in that my speech is relatively clear - I am in speech therapy and for those who know me they can clearly detect a difference - s's and ch's are the toughest. Some dry mouth but not unbearable.
It is surprising that so many who do not smoke or have never smoked end up with oral cancer.
Uptown - to answer your question about my reasons for not having it - mostly my concern on side effects - fearing more loss than what has occurred already. I love eating and my profession requires speaking clearly. I've hit a crossroads of choosing between a medical improvement and quality in life. It was encouraging to hear positive comments about the taste buds and salivary glands. It has been very helpful to hear the comments from all of you and your real life experiences.
Has anyone had any experience with amifostine?
Have any of you heard of proton therapy? I understand it's relatively new - only 3 or 4 centers in the U.S.
Again, Thanks to all of you for taking the time. I wish everyone the best and my wife and I will keep you in our prayers.
Ron


Ron Miller
#38143 01-29-2005 08:58 AM
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Hi Ron,

I had field radiation (37 total) and had injection of amifostine prior to each treatment. Although the shots were unpleasant, they became part of the routine. I was fortunate in that I didn't have any real side effects which others did. I had a total glossectomy and dissection to both sides of my neck prior to radiation and chemo treatments. I feel fortunate in that I do have some saliva and I strongly believe it's from the injections. That's not to say that I don't have my eating issues - there are plenty but mainly the inability to eat breads/bagels/pretzels/etc. - anything "dry" is tough. I can do it but found it wasn't worth the effort. Other than those types of foods I'm able (with the aid of A LOT of water) to eat anything else. Good luck in your treatments should you definitely decide to go the IMRT route. As many have said and as I'm saying now, many have been down this rocky road and we're here to tell about it!!!

Hugs, Nancy


Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
#38144 01-29-2005 09:11 AM
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Do a search in this topic under PBT


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#38145 01-29-2005 12:10 PM
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Ron, welcome to the site. Sorry you had to find us. I had tonsil cancer which is not the same as yours, but the treatments are similar so I think I can comment and be relevant to your concerns. I had chemo (ciplatin) and rad prior to surgery to try and shrink the tumor in my lymph node. It had traveled from the tonsil to the node. After 6 weeks, I had the surgery to remove the lymph nodes and the post-surgical biopsy showed all of the cancer had been killed by the rad/chemo. The chemo also went throughout my body destroying any small bits of cancer that was trying to find a new home, I hope. So far, so good. The side effects of the chemo/rad/surgery has not been too bad. My taste is very poor, my dry mouth requires an H2O bottle, and my shoulder has some limitations. But I would do it again in a heart beat to insure the cancer was destroyed. This disease is very unforgiving and doing everything possible to defeat it is, in my opinion, the only way to go. As my surgeon said, if it was him, he would learn to operate left handed rather than not do everything he could to make sure the cancer was gone. Will pray for guidance to the right decision.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#38146 01-30-2005 02:21 PM
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Thanks - Nancy, Gary, and Kirk for the feedback.
Will keep you posted on my decision and progress.
Ron


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#38147 01-30-2005 05:11 PM
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Ron, just one more story. I had IMRT and chemo. I lost my taste, got it back just like it was before. I have probably 90% of pre-tx saliva and have no problem eating pretzels and the like, and do not carry water with me. IMRT allows the computer to be programmed to avoid the parotid glands in many cases. I was burned, got tired, and had the gunky, wallpaper paste saliva for a couple of weeks, but found it all very tolerable and a pretty small price to pay for being very well and happy and active now, thoroughly back in the middle of what I call Real Life. I have absolutely no regrets about choosing this mode of treatment and although I hope never to have to revisit that part of my life, would make the same choice in New York minute. E-mail me if you have specific treatment questions, and I will be happy to give you full details.

#38148 02-02-2005 09:54 AM
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Ron,

I had the amifostine (Ethyol) and made it through about half of the radiation before I developed an allergic reaction. It was not pretty but I am glad that I could tolerate as much as I did. I had field radation and am now eating everything (in sight, unfortunately) and try to eat an entire meal without water. I even started drinking coffee again and even though it tends to dry my mouth out, I love the taste. Everything tastes different at different times and I have learned, for example, to not eat anything sweet before my coffee if I want to enjoy the flavor more. I eat bagels, or any type of bread for that matter and I think I struggle because I have no back teeth more than anything. It is hard to chew the stuff up completely without the chompers. I eat spicy foods, Thai peppers even. I was going over to a Thai friend's house regularly for meals and I finally cut it back to less frequent because they just load up stuff with fire. I pickled some Jalapenos and I don't know if it was all the rain last season but they are much too hot for me and when I bit into one I had to reach for the miracle mouthwash to numb my mouth eek !

I fully understand your treatment versus quality of life issues. I would have an easier decision because as long as I can do anything about it, I want to spend as much time with my wife and kids as I am allowed in this life. I hope everything works out for you just as you expect it.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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