#20996 08-26-2006 01:37 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | JOHNMEIN Member Member # 3374 posted August 25, 2006 10:58 PM -------------------------------------------------------------------------------- Hi, I am new and very confused. My husband is 44 years old and was in generally good health. He had more colds than usual over the winter and became concerned when he noticed a lump on his neck that did not go away after 2 round of antibiotics from the medstop. He went to our DO around 6-10 he also gave him antibiotics but insisted he see an ear,nose throat specialists within 2 weeks. We honestly at this point never considered cancer. He was diagonosed on 6-28 and surgery was performed on 7-3. The diagnosed was as follows taken from the surgeons notes:squamous cell carcinoma. He underwent right neck dissection and resection of the right base tongue tumor. 2 of 19 lymph nodes had cancer no extranodal extension into the soft tissue was noted. We thought it all was removed. He did great healing from the surgery, was on a soft diet when he left the hospital. He has had 2 weeks of radiation w/ebytol and has 5 more to go. He also receives Erbitux once aweek and takes Kytril for nausea. This past Monday he had gained 3 pounds. Then by Wednesday his tongue was so sore he has hardly ate or slept in 3 days. He has been rinsing with baking soda,but the salt burns too much. He was given a presc. today that is supposed to numb him long enough to eat. But, it burns and he is not wanting to use it. The pain is constant. He is not receiving any pain medications and hasn't since two weeks after surgery. Should he ask for a pain medication? Will they help? Any suggestions to ease his suffering would be appreciated. PS:Sorry I rambled so long. Lisa -------------------------------------------------------------------------------- Posts: 2 | From: MISSOURI | Registered: Aug 2006 | IP: Logged
Gary Allsebrook
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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)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#20997 08-26-2006 09:06 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Lias,
Radiation effects will start getting more severe at this point and will continue to get get worse so they need to start ramping up his pain meds and/or put him on "long term" opioids. They will definitely help. Many of us had success with the Duragesic patch. Read and follow the instructions VERY carefully if you get this drug. It's safe and effective but very powerful.
He should have a med for breakthrough pain as well such as morhpine.
Gary Allsebrook
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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)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#20998 08-26-2006 09:50 AM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2006 Posts: 137 | Going through this without pain medication is inexcusable. Get the radiation oncologist on the phone right now and tell him to order lidocaine & lortab elixir TODAY from the pharmacy. Then tell him to make room for you because you will be in his office first thing Monday morning for an exam of the mucositis and prescription of the Duragesic patch as needed.
dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
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#20999 08-26-2006 06:32 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Because this is the weekend, you may not be able to get through to anyone but an answering service. Take your husband to the ER and demand pain relief! It is his right, and his docs have been negligent in not giving him anything thus far. I am the Voice of Experience here. Don't mess around with pain. It serves no good and interferes with healing and quality of life. Suffering serves no purpose whatsoever. | | |
#21000 08-28-2006 01:53 PM | Joined: Jun 2006 Posts: 82 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2006 Posts: 82 | If you haven't already, get pain meds for him right away. The problem with pain is that once it sets-in, it gets harder to manage than if it is managed well from the start.
They might try something like Roxicet first and work up to the patch. I never needed the patch and just used the Roxicet to manage my pain. The only caution about the patch is that a lot of people get constipated from it, so that is something else to watch so it doesn't get to be a big problem.
DX on 05/01/06 with SCC of right tongue. 05/11/06 surgery-tumor 1.2cm & 4 cm clear margins & parital glos. & neck dissection with removal of 34 nodes/1 positive at 4mm)T1N1MO
35 IGRT & 3 cycles of chemo (1 cisplatin & 2 carbo-complete on 8/9/06.
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#21001 08-28-2006 02:56 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Actually ANY narcotics can make you constipated - My problems weren't any worse with the patch than they were with Vicodin. Make sure that you cover constipation prevention with your nutritionist as it can cause you some serious grief and side effects if you don't. It can ratchet the whole cancer adventure down a few more notches.
Gary Allsebrook
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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)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#21002 08-31-2006 02:48 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 | Lisa,
First, welcome to the neighborhood. As you will find there are certainly quite a few that have traveled this road before you that will be able to make the ride a tad smoother. Learn all you can and use the wisdom and experiences of others to help guide you. Your role is often the hardest.
I also noticed your husband's staging of T3N0M0 which I believe is probably more like T3N2bM0 since you mention a lump in the neck and 2 nodes were positive.
There is nothing easy about the road ahead but plenty of folks to listen to whatever you want to say.
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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