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#37986 01-08-2005 01:41 AM
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Fran B. Offline OP
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Hello folks; For the the past month I have been working with the radiation oncologist to figure out why I have severe radiating neck pain on the right side. Both sides were radiated, but the rt. side took the boosts because the nodes were there. At this point it has begun to involve my shoulder and arm and there is a decreased range of motion and pain there as well.
He has put me on a course of neurontin, and I have heard from others that this has a good chance of being effective. In the meantime I continue to take Tylenol#3 about 4/daily to take the edge off the pain. I hate taking analgesics so I am usually undermedicated and experiencing more discomfort, but that's my choice. The family Doc thinks I should go back on hydromorphone (Dilaudid) but that really does a number on my concentration.
So the choice between "concentration and constipation" is a tricky one for sure. (Pardon my candor)
The Onc. thinks there may be early mets in the neural pathway, or just an irritated response to the assault of the rads. I have an MRI booked in 10 days.
I would appreciate any insight/feedback folks have on this issue.
Cheers, Fran


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
#37987 01-08-2005 02:53 AM
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Fran,

I've occasionally had radiating pain through my neck and into my arm that has lasted for a number of weeks. In my case, the scans have shown some nerve compression and arthritis in the cervical spine region, but nothing more suspicious than that. I've tried to focus on stretching exercises and generally the pain has subsided after awhile.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#37988 01-08-2005 07:02 AM
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Fran B. Offline OP
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Thanks Cathy, I will ask them to check that out when they read the MRI. It's hard to believe sometimes that every pain we have isn't the cancer returning. Hanging on to wellness is an art. I appreciate you input.
Cheers, Fran


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
#37989 01-08-2005 01:18 PM
Joined: May 2002
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Hi Fran,
Did you have PT? I had back and neck pain and PT really helped.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#37990 01-08-2005 03:06 PM
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Fran B. Offline OP
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Hi Eileen; No I haven't had physio...but my very best friend is a PT so that's another good avenue for me to follow.
Many thanks,
Cheers, Fran


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
#37991 01-09-2005 03:20 PM
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Fran, I had and continue to have some pain in the right shoulder area post-radical neck dissection. Did you have surgery? Part of my problem, I was told, was atrophy due to not using the muscles after surgery. You may have been favoring the side with the nodes and that may have contributed to the discomfort. Physical therapy helped me a lot to reduce the pain.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#37992 01-10-2005 02:25 AM
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Fran B. Offline OP
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Thanks Kirk; I have an appt in the next two weeks with the whole "Head and Neck" team at the Cancer Center. I will certainly ask them about initiating physio. In the meantime, I think my dear friend who is in the profession can give me a few exercises to perform while I wait.
No, I haven't had surgery other than the 3 node biopsies on the right side.
Appreciate the feedback,
Cheers, Fran


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
#37993 01-10-2005 12:10 PM
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Hello Fran,

I had no pain in my neck or shoulder post treatment. I wanted you to know I am hoping that mri comes back clean. How long after the mri til you get the results? Am thinking of you and hoping for the best news from the mri.

Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#37994 01-11-2005 08:38 AM
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Fran,

Sorry to hear of the ongoing pain issues you are dealng with. I did not have surgery and I have had some neck, shoulder and arm pains almost all the time since radiation. I have not tried Neurontin but I do take Bextra (after Vioxx was pulled) daily and an occasional Loritab when it really bothers me. I also have had surgery on my collarbone to separate the AC joint and remove a piece of the collarbone because of the pain in the joint. I have been through about 3 rounds of PT and no matter what I have tried, I still get some pain on the side that was radiated most (where the cancerous lymph nodes were). I also get some tingling in my chin and my left hand. I have decided it is just one of those things that is here to remind me of the battles won!

I have even had a PET/Ct scan that showed no cancer issues causing the pain. I had a separate bone scan and MRI that only showed arthritis and some bursitis in the shoulder area. When I realized that I was having difficulty in sorting out the pain from all the earlier injuries from the radiation pain from the arthritis and "getting older" stuff, I decided it was just a part of my life now. And a grand life it is!


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
#37995 01-12-2005 10:41 AM
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Posts: 108
Fran B. Offline OP
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What good support there is in this forum!
My MRI is on th 18th and I meet with the Docs on the 25th. That was an "urgent" booking.
Someone gave me a hint about alternating hot and cold packs...but that seems to do little. Rest, or perhaps the immobility seems to calm the area down, but the tylenol#3s do take the edge off. It is as puzzling to me as it is to the docs at this point, but it does interfere with my quality of life and I will squawk shamelessly until they help find a resolution to the pain. How's that for ornery!
We are helping educate the medical side with our input about this unique form of cancer.
Thanks for the feedback,
Cheers,
Fran


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
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