#55653 10-22-2004 08:29 AM | Joined: Oct 2003 Posts: 49 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Oct 2003 Posts: 49 | I just finished my last IMRT treatment. 36 from 5 different locations to my right neck, right paroitid region, and the surgical bed of my right tonsil. 180 gy. Not sure how much that is.
Lost only 20bs. Probably will lose a few more since all can can eat are liquids. Boost and protien shakes.
My skin looks like someone took a blow torch to my neck. Lost half my hair on the right side back of head. Have a patch work beard. Mucous is disgusting and mouth dry most of the time.
Was able to get through without pain meds, only because the right side of my face and neck have no working nerves due to right radical neck disection and right parotidectomy.
All and all, I quess I came through it OK thus far. Not sure what after treatment effects I'll go through but I thank God that I'm am done with the rad. This was my second time radiated within a year. The last was to the left side.
To those who are about to go thru this, hang in there, it does get better and is doable. You will be suprised how well you can adapt to some pretty scary circumstances. The thoughts are always worse then the actual reality.
Thats the update, hoping and praying the beast has been put to death this time, this was my third go around with it.
Bruce
5-02 SCC T1N1M0 Stage 3 Right Tonsil
6-02 Right Radical Neck Disection
9-03 Recurrent SCC Dx Stage 4 unknown prim
12-03 7 Chemo
12-03 36 Rad
5-04 Left Upper Lung Wedge Resection neg
7-04 Right Parotidectomy
9-04 Began IMRT
10-04 Ended IMRT
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#55654 10-22-2004 10:25 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | from your lips to God`s ears Bruce...you have certainly had a little more than your fair share.
Glad you made it through ... you know how it works, the mucous will get better with time. Pete found the Salivert spray quite helpful with the dry mouth.
Best of luck to you
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#55655 10-22-2004 10:44 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Bruce, congratulations on getting through again. Am very sorry to have to say, again. As Marica says, you know what's coming, with the next few weeks after rad still going down hill, but knowing that the time after that will be much better. And by the end of 2 years, you'll be back to normal, even if it is a "new" normal. Will keep you in my prayers.
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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#55656 10-26-2004 07:33 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 | Bruce,
Congratulations on getting this far down the long road you have had to travel. I am hoping and praying for a speedy recovery and that this is your last battle with this horrible disease. You are a real warrior, Bruce, and an inspiration.
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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#55657 10-26-2004 08:04 AM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 76 | Bruce
I am happy that you are through the IMRT and pray your recovery is speedy & you have NO recurrence EVER! I do get scared when I read the history of the war you have waged upon this disease and I wonder if I will be as strong as you. First time round my surgery was a breeze (was eating & talking within a month) but no Rad..this time I am trying to prep with my Rad Onc, H & N surgeon & ENT as to what next.
I hope you are right (the thoughts are worse than the reality.)
Take Good Care,
Maria
01/04 SCC of tongue base, T1N0M0
03/04 Partial glossectomy
04/04 Rad
12/04 Throidectomy(follicular cancer)
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#55658 10-27-2004 03:43 PM | Joined: Apr 2004 Posts: 44 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 44 | Bruce-
Congrats on completion! I noted you implied your neck was toast. Go to the drug store and get Domeboro Soak. For a mere $3 you will have lovely, uncharred skin. Ed's was horrible! Weeping and oozing and flaking and fire red. Poor guy just laid there crying/sobbing at the pain. Mix one packet with water, grab an old cotton cloth and lay it over the affected area. No joke - it was a miracle and the doctors/nurses STILL call our home asking Ed what he used to get his skin so soft and back to normal so quickly.
Here's hoping you recover quickly! I'm amazed that with all they threw at you - you are so upbeat. Kudos and lots of prayers!
Susan
Caregiver to Uptown/Ed, SCC Stage IV, Base of tongue - Completed Chemo (Cisplatnin/5FU) and 45 days' simultaneous Radiation 10/08/03
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#55659 10-28-2004 10:19 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 | Bruce, I don't think I was crying/sobbing, I think I was gurgling from the thick brown goo...  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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#55660 10-29-2004 05:52 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Bruce!
Congratulations on finishing treatment!! It won't be long and you'll be looking back at it as just another nightmare on the road of life. Try the frappicinos at Starbucks. They can coat your throat pretty well right now and all the calories won't hurt. Of course, not the best nutrition, but mighty good!!
Ed - I'm glad Susan is around to give us the total picture :p - 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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#55661 10-29-2004 08:05 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 | Bruce and everyone,
I forgot to mention some tea from Traditional Medicinals, Throat Coat, that I bought at Whole Foods on the urging of my sister-in-law. There is a lemon version that was great. It is intended to be used by people with sore throats and my sister-in-law heard me complaining (whining as Susan and Kris would put it :p ) about my sore throat and recommended 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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