#37663 07-15-2004 05:41 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | OP  Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | I'm all set to go with round two of radiation this Monday. We're also adding Cisplatin chemo to the mix, starting Monday as well (in three week intervals 2-3x).
Most of my anxiety has been over the chemo, as the docs say my IMRT radiation shouldn't be as tough this time because they're not zapping my mouth or esophogus. Reading Lance Armstrong's book this week really fired me up, but I had the wind taken out of my sails this afternoon.
The radiation oncologist talked to my wife and said my new plan will feature 54 stops, and I'll be on the table for an hour each day!! Acck!!!!!
I certainly wasn't prepared for that. My first plan last winter took about 12-15 minutes a day, and only featured seven stops. That was plenty tough, and took a lot of mental energy just to get through that.
How on earth am I going to stay completely still, my head locked into suffocating plastic mask, for a whole hour? Did anyone else have such a complex IMRT plan? Any tips on how to "pass the time" while on the table? They better let me bring CDs or something into the room...
Sorry to whine. This, too, shall pass. But I had to share the shock with someone...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#37664 07-15-2004 08:07 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | I was on the table for at least 45 minutes each day and over an hour once a week for x-rays. I just loaded up with Zanax and slept through it. I also brought in my own CD to help also.
They want to make sure that they get it this time.
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)
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#37665 07-15-2004 08:51 PM | Joined: Jun 2004 Posts: 85 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jun 2004 Posts: 85 | Eric,
"Good Luck" on your second time. Chemo and an hour on the table can't make it easier. I start my treatment on Monday and can't figure out how I will be able to keep my arms from sliding off the side of the table during my 15 minutes.
I'm not much help; however, you'll be in my thoughts and prayers. Kill the damn thing this time, will ya?
David
T1N0M0 Partial Glossectomy 2/04, Recurrance w/ another P.G. 5/04. IMRTx33 7/04-9/04. T2N2M0 recurrance in throat, 11/04.
2nd tumor 1/06/05, Chemo 1/11-05 Died 02-16-05 Wife: Brenda
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#37666 07-15-2004 10:42 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | Jeez Louise, and hour?? at one time. Have these guys ever heard of hyper fractional radio thereapy, break it down into two times a day, once in the morning and once in the afternoon, but only half (or a little more than half) each time.
Gets the job done quicker, with less side effects I'm told, plus only half the time each time on the table. Might not be very convenenient if you have to travel a good distance.
Otherwise, hang in there, anything you can do to pass the time, like sleep will help. Try books on tape if the cd doesn't work.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#37667 07-15-2004 11:41 PM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 146 | Eric,
You're not whining - an hour is an awful long time on the table with that damn plastic girdle (as I came to see the mask) encompassing your head and face. Although my time on the table was short in comparison (10-15 minutes) I found that I usually fell asleep! I guess I was just so tired from all the treatments that I didn't need any additional meds to get me through it. But if meds is what it takes to get through being strapped down for an hour, then go for it. I also think the CDs would be a nice distraction. I also had cisplatin and compared to radiation that, for me, was a picnic in the park (so to speak). Hang in there and I'll be pulling for you.
Nancy
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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#37668 07-16-2004 03:55 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Eric-
Wow, I can't imagine an hour on the table. When the mucus gets thick later down the road it is going to be extremely hard lying on your back for that lenght of time and not gagging. If you can get it split in half as Bob suggested you might have an easier time. Good luck to you and my prayers are with you. - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#37669 07-16-2004 05:46 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Eric,
I really have no suggestions but wanted you to know I will be praying fervently for God to comfort you through the seemingly long periods every day and work more miracles in your life.
I remember once my mother had 3 MRI's in one day and ask if they could just run them together...for 2 1/2 hours. They tried to talk her into but she insisted she did not want the spend the whole day at the imaging center. They were amazed, as was I, that she did it without any medication.
I am sending you best wishes and warm thoughts.
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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#37670 07-16-2004 08:01 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | Well it won't be fun but it alsways could be worse. I was on the table for 30 minutes each day with 10 stops. I closed my eyes, tryied to take a nap and tought of the most pleasant things I know of or would like. It seemed to help. The best part the 6 weeks went by so fast I couldn't believe I was done. So its a mind thing and if you approach it as I can find a way through this instead of how am I going to make this it will go easier. Good luck and sweet dreams.
SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
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#37671 07-16-2004 09:42 AM | Joined: Jun 2004 Posts: 106 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 106 | Good luck, Eric,
surely they'll let you bring a cd-player, I don't see why not. I spent my 10-15 min. radiation periods reciting poems and songs in my head, but an hour - I would go with medication and hope to sleep through it. I never suffered from the mucus hardly at all until after the radiation was over, I hope it'll be the same for you.
Sometimes I would lie there trying to visualize the cancer cells being bombarded by the rays, but that never worked too well. You know, going "Kill, kill, kill", in my mind.
I hope they get them this time.
Leena
scc right tonsil T1N1M0, right tonsillectomy + modified neck dissection 3/04, radiation IMRT both sides X33 ended 6/04.
Also had renal cell carcinoma, left kidney removed 11/04
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#37672 07-16-2004 10:29 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Eric, sorry to hear of your future protracted time on the rack. I passed the time with prayer when I was on the table. I prayed for everyone I knew and lots that I didn't, including for those people who end up marrying my kids that I haven't yet even met. They will need all of the prayers they can get. I was on the rack for 20-25 minutes each day and up to 45 minutes for x-rays. They had music also, so that helped as well. Hang in there and try to think pleasant thoughts.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#37673 07-16-2004 05:10 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Thanks, everyone, for the encouragement. I had more set-up X-rays today and am sporting some cool purple magic-marker lines on my neck. I've been getting some strange looks for sure as my wife and I run errands around Phoenix... wonder why?
My doc said he felt really good about my plan (33 days, possibly 36 if my skin holds up OK) when we talked today. He went to extraordinary measures to spare my spinal cord any more radiation as well as my esophogus. He told me basically, it doesn't get any better than this with it being so aggressive. I feel as good as you're going to feel about these things.
I plan on bringing a CD player/radio and trying to listen to AM sports radio (if you can pick it up in those type of rooms), music, books on CD, whatever. I've just got to keep my mind occupied... Otherwise, it goes south on me and I start freaking out needlessly (like the first couple of times last time around when I pictured the radiation machine being "The Emperor" from Star Wars, zapping me with his blue rays -- long story)...
Prayer, of course, will be part of the routine before, during and after. God and I are getting well-acquainted these days...
Blessings to all of you -- I'll be available for autographs after my marathon sessions... haha...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#37674 07-16-2004 06:11 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hey Eric,
I'll be looking for that autograph! You'll find a way to handle this. He doesn't give us more then we can handle. He must believe you to be a very strong person.
Take care,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#37675 07-17-2004 05:11 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Thanks Minnie -- I read a quote from Mother Teresa recently that made me laugh:
"God doesn't give us more than we can handle, but sometimes I wish He didn't have so much faith in me..."
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#37676 07-17-2004 07:24 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | That quote from Mother Teresa made my day!! SMILE!!!!!!
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#37677 07-17-2004 04:19 PM | Joined: Jun 2004 Posts: 106 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 106 | That reminds me of my feeling when I was under the mask for the first time and fighting so hard to keep from panicking - I kept telling myself I can either handle it or not, and even if I can't handle it, I still have to deal with the situation - I do not have that kind of trust in God, so I could not be quite sure it wasn't too much for me. And how proud and grateful I was when they took the mask off and told me I had done fine - and how disgusted I was when they told me I had to go upstairs and get a scan under the damn thing the same day. But every day when I got through the treatment, I felt the kind of pride in myself that you can understand, but those who haven't been through it can't.
And Eric, after each one of your hour-long treatments, make sure you remind yourself that we are all proud of you for surviving another one of them. Does this make any sense?
Leena
scc right tonsil T1N1M0, right tonsillectomy + modified neck dissection 3/04, radiation IMRT both sides X33 ended 6/04.
Also had renal cell carcinoma, left kidney removed 11/04
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#37678 07-19-2004 03:55 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Erik,
To help you get through this, besides prayer, try to focus on the what is just around the corner...HOOPS season! As a true born and educated Jayhawk, this is going to be a(nother) great season for us. If Dickie V does not put Wayne Simeon on his first team, I will have to go visit him...baby.
Anyway, something to help get your mind off it if only for a short period. I am sure you are well versed on football. As a Jayhawk we only call football season that short interval between hoops seasons.
I will be cutting to the front of the line for your autograph in Las Vegas! Having earned the nickname of JarJar Binks during my treatment, I think we could share a couple of Star Wars stories, at least.
Your faith and your strength will easily carry you through! May God continue to bless you and I pray for His comfort, peace and love to fill you especially during your hour on the table.
God Bless,
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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