| Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Well, It is my turn to go into the HBO chamber. Sure hope it helps with this pain. Saw the wound specialist today and will begin treatment on Tuesday. I will have 30 dives. She also said I have some exposed bone, and if that bone is still exposed at the end of treatment, I will have to have some of it shaved off and closed up and then more HBO treatments. I am so ready for a break in pain. The surgery I had last week has not even began to heal, and the pain is getting worse. I have gone from Lortab to Percocet, because my ENT said I was taking too much Lortab. I would have to take two every three hours instead of 4. The percocet is not doing much better. I have been on these pain meds now for about 3 weeks around the clock. My ENT did mention that he does not want me taking it anymore than every 4 hours. What am I supposed to do that last hour when the pain is like at an 8? Is the acetominophen that bad that I can not take it every 3 hours?? I can not eat anything. I am back to all liquids and even that is at the bare minimum because of the pain to swallow. I take in just enough so that my stomach does not get queasy form the pain meds. I can barely open my mouth wode enough to get a spoon in it to eat shakes. Sorry to vent. I am also concerned about going back to work on Monday. How am I supposed to teach if any talking or movement of my tongue causes pain? I guess my students will be happy that they do not have to hear me all that much.  I do know that this is going to get better and there is a light at the end of the tunnel, but that light needs to brighten up and quick.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 126 | Angelia, Don't know what to say but praying! I trust you will begin to heal and get quick relief. Vent away, that is what this is all about.
Sharon
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | If you are not getting the pain relief you expected, by all means be a squeaky wheel and demand something different. I know that taking more acetaminophen than prescribed can cause liver damage, so please be careful. All the best with the HBOT. I sure hope you get some relief soon.
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Well, they upped me from Lortabt to Percocet. I will be calling for more meds on Monday, and am also concerned with the liver.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I am so ready to get this stuff started as the pain in my jaw area is increasing, but the tongue pain seems to be decreasing. How can one really tell where the pain is actually coming from? I can used the magic mouthwash and it sure does help the tongue so I can eat or drink rather. The jaw pain is still there. It seems that the jaw pain is growing and and goes from the back right side to the front. That does not sound good does it?
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Dec 2007 Posts: 46 "OCF Down Under" Contributing Member (25+ posts) | "OCF Down Under" Contributing Member (25+ posts) Joined: Dec 2007 Posts: 46 | HI! Im Lyn, (Im a good mate of Jim)I have had endless pain problems (complete with DRs telling me I was an addict but not giving me an alternative to my 8 pain. I now have a new young docter who is terrific. He has put me on Durogesic Patches. I need I 50mg patch every 3 days (better than a heap of tabs that make us sick huh?!) They come in 25mg, 50, 75 and 100. Ask your Doc can you try them. Once you put them on, you forget about pain meds for up to 72 hours! Im sure they dont work for everyone, but they did for me! Good Luck, Prayers and LOVE xxxxx Lyn
Tongue Cancer SCC Removal of 2/3 of right side tongue, neck disection-34 lymph nodes removed. flap for new tongue made from left wrist in 2007. Now (mid 2011) speech has been back to normal since early 2009, and Im back working as a singer. So far so good! 2016... Still cancer free! Yay.
| | | | 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 | Glad to hear you are back to the HBO. Tubes sure make a huge difference! 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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Angelia, you need a Pain Management Team. Between them they will figure out what types of meds to give you. I had 4 they gave me but I gave 2 of them up and just take percs and methadone. Talk to your Oncologist and Ent as mine work together and they called the Dr that was in charge of my Chemo to help them. I wish I would have kept taking the Morphine for breakthru pain tho.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I would love the pain patch, but I am not allowed to have it whileI am going through HBO. The exposed part of my bone is getting bigger. Is that normal going through HBO treatment?
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: May 2005 Posts: 24 Member | Member Joined: May 2005 Posts: 24 | I would try a different pain med. The HBo tx were very relaxing once you get used to being closed in. I had 30 dives last spring to help with healing for my copious amounts of dental work. I did not see much improvement but insurance paid for it so i didnt think it could hurt. I caught up on the cooking channel while in HBO. Good luck!
Maria 33 when diagnosed with SCC, partial glossectomy with skin graph from thigh,rt side nodes removed,ten nodes positive, PEG, 30 RAD tx, 1998. Scans clean.30 HBO tx-Massive dental work 07-08, ORN present 2009.
| | |
Forums23 Topics18,235 Posts197,106 Members13,294 | Most Online1,788 Jan 23rd, 2025 | | | |