| | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I had PDT (photodynamic therapy) done last week and I'm in HORRIBLE pain. Worse than my 4 surgeries. I'm taking Vicodin (2 every 4 hours) and Neurontin (9 pills a day)I'm still in a significant amount of pain and cannot eat at all. I'm drinking Ensure and that's about it. I just started the 2 vicodin so maybe that will help. Any suggestions of other pain meds to ask for?
Thanks:)
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: May 2009 Posts: 132 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 132 | Sorry to hear you're in so much pain, Suzanne. I took Percocet, and it worked really well. Had to be careful not to become dependent on it, but it was great for the pain.
Good luck -- hope you find something that works SOON.
-Chris
Chrissy
Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Vicodin is just hydrocodone and tylenol. Ask for a bump to oxycodone or oxycodone hci (time released) and then use an NSAID in the dosage you need. My issues w vicodin and percs is that they have tylenol in them so when you maxxed out on the amount of tylenol you can take a day and are still in pain you r stuck.
Your Dr should have no issue bumping you up as pain is the enemy.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Eric, is oxycodone Percocet? I think I have that too from a previous surgery and it didn't help this time around. Maybe I'll try it again and see.
Thank you both.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Suzanne, Im very sorry you are still in so much pain!
Ive taken hydrocodone and found that oxycodone works much better for me. It seems to last a little longer and I take less to get the same effect as hydrocodone. If your mouth hurts that much ask for liquid pain meds, it might be easier to get down.
Hope you feel better very soon!
ChristineSCC 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  | | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Percocet is a combo of oxycodone and tylenol . On the opiate ladder it is stronger then hydrocodone. There are different strengths of percocets, normally they start you at 5mg tabs and go up from there. I would ask your Dr about 10mg oxy tabs and then add tylenol from there
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Thank you both...I'll talk to my doc tomorrow. I know you both know the liquid diet..it's not fun!!! I do have magic mouthwash and I swish with that and then have some yogurt for dinner. Otherwise, it's Ensure all the way.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Lol, I really enjoyed the liquid oxycodone...maybe a bit too much so I switched to tablets as soon as I could swallow again.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2011 Posts: 130 Likes: 3 | The combination of Fentnyl and 5 to 5 oxycodone liquid has been working for me. That has no Tylenol so you won't be maxed at the liver damage threshold.
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | Joined: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2011 Posts: 130 Likes: 3 | And....BTW. By FAR the best (and most expensive) magic mouthwash is the one made by Curtis Pharma. I've found it to be at least 2X as good as anything else.
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
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