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Chrnlar Offline OP
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My husband was recently diagnosed with oral cancer, has a tumor 4.1 cm at the base of the tongue and an enlarged lymph node in the neck under his ear. In the last couple of weeks while getting the dx, his pain has really increased. He gets his Pet scan on Monday the RO appt next Thurs. in the mean time his Gp has increased his pain meds to Norco 10-325 once every 4 hours and has prescribed Gabapentin 300 mg (nerve blocker)three times a day.

Anyone else experience this kind of pain prior to starting treatment and did it go away once the tumor shrunk?


Cheri-43 year old caregiver
51 year old husband with BOT Cancer, SCC, HPV16, enlarged lymph node at the neck, non-smoker, healthy and fit
ENT Appt 10-9-14
Biopsy 10-13-14, Results of Cancer 10-16-14, 1.8x2.2cm left side lymph node
1st Medical Oncologist appt 10-21-14, learned Stage 3 or early 4, T3N1Mx
1st Radiology Oncologist appt 10-30-14
PET Scan 10-27-14
1st weekly Erbitux chemo 11-12-14
PEG tube surgery 11-13-14
1st of 30 IMRT Radiation Treatments 66 gy 11-25-14
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I went thru extreme pain while undergoing treatments which became increasingly bad as the treatments went on. There are very, very few survivors who have gone thru this without some sort of prescription pain medication. Its very important to keep his pain controlled. When uncontrolled, pain can be debilitating making for one miserable patient.

I found the fentanyl patch to be most effective for me. Its changed every 3 days and provides consistent pain relief. I used to change it about every 65-68 hours as it takes several hours for this type of medicine to work. This type of medication needs to be stepped up or down, its not just a start and stop type. If your husband would go this route, then you must read and follow all instructions exactly. With the patch never cut, fold, rip, tear, bend or otherwise do anything that will make the patch altered, plus no long hot showers or baths with it. Fentanyl is the strongest pain medicine made. After about a week, if the Norco isnt working as well ask about the fentanyl patch.

Ive also used gabapentin to help with my nerve pain. To me this was a very good medicine to control the type of pain I had. This can still be used for (breakthru pain) a back up even when using the patch for when your husband is having alot of pain.

Best wishes!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Oct 2014
Posts: 12
Chrnlar Offline OP
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ChristineB, did you have the pain before treatment? Or just the pain once treatment started? Larry's seems to start right after eating or drinking.


Cheri-43 year old caregiver
51 year old husband with BOT Cancer, SCC, HPV16, enlarged lymph node at the neck, non-smoker, healthy and fit
ENT Appt 10-9-14
Biopsy 10-13-14, Results of Cancer 10-16-14, 1.8x2.2cm left side lymph node
1st Medical Oncologist appt 10-21-14, learned Stage 3 or early 4, T3N1Mx
1st Radiology Oncologist appt 10-30-14
PET Scan 10-27-14
1st weekly Erbitux chemo 11-12-14
PEG tube surgery 11-13-14
1st of 30 IMRT Radiation Treatments 66 gy 11-25-14
Joined: Aug 2014
Posts: 23
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My husband's tumor & lymph node sound very similar - 4.7 cm tumor on base of tongue and large lymph node on neck. He had terrible pain, which he described as headache, prior to diagnosis. Took Norco for it. He is almost done with treatment, just one rads left to go, and that pain improved as the tumor shrunk. He hasn't complained of headache for a few weeks. His pain now is from mucositis and radiation dermatitis, which should start to heal soon. Now on fentanyl patch with oxy for breakthrough pain. He finds the patch doesn't make him feel drugged, like the oral meds do. Early on, MO said the head pain was likely from tumor pressing on a nerve.

Good luck with everything. Hang in there!


Caregiver to husband with SCC BOT HPV+ T4N2cMO stage 4a
CT scan 7/23/14
Biopsy 8/7/14
PEG tube in 8/15/14, out 4/2015
35 rads, Cisplatin X 3 - finished 10/27/15
cancer free May 2018



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I had 2 seperate tumors and neither one hurt at all. My pain began after rads started.

Ask for a prescription for magic mouthwash. Its a swish and spit formula made up of a few variations. Mine was made of lidocaine, malox, benedryl. This will help to numb the mouth long enough to allow him to eat and drink comfortably. It can be used a few minutes before brushing teeth too.

If you dont already have one a waterpik will greatly help keep his teeth extra clean. Use it on its lowest setting with a diluted mild non-alcholic mouthwash mixed with water, about 2 tbspn mouthwash to a cup of warm water.

Rinsing with a mixture of 16 oz warm water, 2 tsp salt and 2 tsp baking soda 20-30 seconds 4-8 times daily will help too. The salt will probably burn his mouth. It can be cut back or omitted but try to get some salt in there as salt water really helps with the mouth sores.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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Kris had terrible ear pain which radiated down his face. This was the symptom that initially sent him to our GP. It got worse and worse. It wasn't constant, some days were worse than others. In his case it was from the lymph node pressing on a nerve. This pain went completely away early on in treatment.
Insist on some good strong pain killers for your Husband. There is no need to be in pain.
Hope this gets sorted .
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jan 2013
Posts: 1,291
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I had no pain or discomfort before treatment. I think it just depends on where the tumor is and if it is pushing against nerves and such. I do not think the actual cancerous tumor (SCC) is the source of the pain.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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I had pain just below the left ear, from a large cancerous lymph node, high in level II, for my 2nd recurrence. I took oxycodone, and pain subsided after a few weeks of radiation, tumor shrinking, and just about the same time I was given the Fetynal patch due to the mucocitis, so all that helped.

Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Oct 2014
Posts: 12
Chrnlar Offline OP
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Joined: Oct 2014
Posts: 12
Thank you for the great input. I think the new pain meds have helped but he still has pain after having a shake. We see the RO tomorrow to go over the PET scan and treatment. I will let Lar know that pain will decrease when the tumor shrinks. But there will be a new set of problems to deal with... Poor guy.


Cheri-43 year old caregiver
51 year old husband with BOT Cancer, SCC, HPV16, enlarged lymph node at the neck, non-smoker, healthy and fit
ENT Appt 10-9-14
Biopsy 10-13-14, Results of Cancer 10-16-14, 1.8x2.2cm left side lymph node
1st Medical Oncologist appt 10-21-14, learned Stage 3 or early 4, T3N1Mx
1st Radiology Oncologist appt 10-30-14
PET Scan 10-27-14
1st weekly Erbitux chemo 11-12-14
PEG tube surgery 11-13-14
1st of 30 IMRT Radiation Treatments 66 gy 11-25-14

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