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Joined: Nov 2007
Posts: 4
Pepper Offline OP
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Joined: Nov 2007
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Hi everyone.
I recently had surgery for squamous cell carcinoma of the neck with half of the tumor being removed,(the half that was wrapped around my external carotid artery). The other half was left as it was not feasible to remove it via surgery due to the location of it. It is embedded in a nerve bundle so radiation and chemo has been ordered. My petscan was normal six weeks ago which is reassuring. My oncologists tell me that we have caught it in time.
I've heard "horror" stories about the side effects of head/neck radiation. Has anyone here had any experience with IMRT radiation to the neck? If you give me some insight about what to expect relative to the side effects I would be most appreciative. Also what things you did or what the dr prescribed for them would be helpful.

Thank you very much

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Posts: 71
Dear Pepper, I am just starting my Chemo and Radiation on Monday. But I have been on this site reading and searching just the things you are asking about. You will have great support here and just start reading the forums and searching the sites. You will have so much information, but what I have found is that everyone reacts differently to treatments. You have found the right place.


Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
Joined: Jun 2007
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Joined: Jun 2007
Posts: 510
Hi Pepper, and welcome to OCF from your fellow-North Carolinians in Montgomery County! If you will 'click' on my username (emmylou1951) you will be allowed to read every question and answer I've posted these past few months. You will find a miriad of information just by reading these, as well as others here who have recent personal experience with IMRT to the neck.
Buzz' surgeon is Chris Sullivan at Baptist in Winston. (see 'signature' line for more info) Where are you treating?
You've come to the right place! OCF has truly been a life saver for many of us!

Lois & Buzz (in Troy, NC)


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
Joined: Aug 2007
Posts: 580
"Above & Beyond" Member (500+ posts)
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Joined: Aug 2007
Posts: 580
Pepper,

Welcome!!
If I can be of any help on your journey just let me know.

Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
Joined: Nov 2007
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Pepper Offline OP
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Joined: Nov 2007
Posts: 4
Thank you very much for responding to my concerns.
When I was diagnosed, my onconolgist told me that we can kill the cancer but unfortunately they have to hurt me to do it.

Having overcome colon cancer 8 yrs ago, I am confident that with God's help and venues such as this and the support I have from my many friends,
I will kill this insidiuous demon.

If I can help anyone with just a shoulder please let me know. The fraternity we have as cancer survivors and presently patients need to maintain
the oft quoted concept of "being positive". The research I have done and the docotrs with I have spoken, tells me that there is significant efficacy and correlation between postive attitude and the immune system.

Thank you for listening to a 56 yr old man who just wants to live to experience the joys of becomming a grandfather. Grandfather........never thought I heard me say that. Feels like yesterday literally that I was in college and was marrying my college sweetheart.

Take care everyone and let me know if can help anyone

Onward and Upward

Pepper

Joined: Nov 2007
Posts: 4
Pepper Offline OP
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Please forgive my typing errors. I was never known to have mastered the eye/hand coordination.

Joined: Apr 2005
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JAM Offline
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Welcome, Pepper: To answer your question about the "horrors" of radiation, I would start with the statment that while there are many side effects that are fairly universal, there are many people who only experience one or two of those. [Does it sound like I am answering a question in a Presidential debate?] laugh . Truth is, you can read and be prepared for the worst [so you won't be caught by surprise] and you may be pleasantly surprised to tolerate the IMRT fairly well. I think it is just as important for the person who will be your "helpmate" or primary caregiver during IMRT to be equally prepared to be able to spot trouble, be on the same wave length as you as to what is going on,know enough "jargon" to talk to your Docs and nurses, and know where to get support when needed. The chemo is likely to be an issue to deal with as well. What chemo will you have? Are you going to attempt to continue working during tx.? How many tx's will you have? Have you discussed getting a PEG? Let us know more about your program and your start dates. And remember, you can research just about anything here. Good Luck. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
Joined: Nov 2006
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Patient Advocate (old timer, 2000 posts)
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Joined: Nov 2006
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So glad you found us, Pepper - There is so much wonderful help and information available here from people who have been through what you are experiencing. And it really does help to be prepared for what may come your way. Just knowing what to expect goes a long way towards helping you to feel in control and to know that you can get thru it. Stay with us and let us know what's happening.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Nov 2007
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Pepper Offline OP
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Joined: Nov 2007
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It is nice to meet you Amy and Anne-Marie.
I am having cisplatin(3 cycle) with the radiation 5 days a week for 7 weeks. I'm going to try and work during my treatment period. I had a peg placed two weeks ago so that is already there before i start the treatments.
I begin today, 11/26/07 with my treatments. To say that I am anxious and apprehensive is truly an understatement.
Thank you so much for your responses and I look forward very much to communicating here with all of you very nice people.
Bill

Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
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Posts: 1,940
Hi Bill

Keeping working is a very positive way to approach your treatment period,but let your body tell you when to rest as well. Some people are very very lucky and mange to work through a good deal of the treatment,some are not so lucky and find the effort of working too much for them,as their side effects are very disabling.Just take it day at a time Bill and i hope it all goes well.

liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.

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