| Joined: Sep 2010 Posts: 6 Member | OP Member Joined: Sep 2010 Posts: 6 | Hi! My name is Johanna, and my partner Ron has been dealing with oral cancer since 2008. He first got a sore in his mouth that wouldn't heal, and they finally diagnosed it as squamous cell carcinoma. He had it surgically removed, and he was cancer free for a year and a half. Then, last March, he discovered a small lump in his neck...the cancer had returned. So, he had some of the mass removed, and then he had 35 days of radiation, and 4 sessions of chemo.(cisplatin) Three days after his treatments ended, he was in the hospital for 3 weeks with pnuemonia. Then, he was in a care facility for 2 months recovering. He has been home with me since Dec. 7th. He has a G-tube, but he also eats small amounts of soft foods. Things seemed to be going in the right direction until about a week or two ago. He had gone off the fentanyl patch and was feeling moderate pain. All of a sudden, the pain got worse. He says his whole jawbone hurts on the side where he had the radiation, and his cheek has gotten swollen. He has had to start taking vicodin several times a day to relieve the pain. He is calling the home nurse today, and he has an appt. with the oncologist next Mon. tho we may try to make it sooner. Ron is 69 years old. He quit smoking in his 40s. I would appreciate any feedback since we are both worried and confused. The doctors never formally staged his cancer,tho his oncologist told us at his last visit that it was either a stage 3 or 4. I have been reading everyone's posts for months but could never figure out how to post anything myself until last night. This seems like a caring place to voice concerns and get a response.
Johanna Brown caregiver to Ron SCC right cheek 2008. Cancer gone. Cancer back in neck 2010. Surgery to remove most of mass. Rad. 35 days. Cisplatin x4. Hospitalized with pnuemonia after treatment. Has G-tube. First PET scan on 2-8-11.
| | | | 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 | First of all, welcome to OCF. Im glad you have found this site as it seems like you really need some assistance. By stopping the fentanyl patch it is why he is now in so much pain. Fentanyl is the strongest pain medication. Vicodin is not as nearly as strong as the patch. I would suggest to get his pain under control by going back on the patch. Then if he has breakthru pain take additional pain meds. Nobody should have to be in pain. A cool compress will help with the swelling too.
If you have been around reading posts for a few months then you understand that we are not doctors. OCF is made up of members who are patients both past and current and their caregivers. We are lucky enough to have a dentist and Gary and Brian who are both brilliant.
That said, it could be possbile that he has an infection that is causing the swelling. Does he still have his teeth? When was the last time Ron had a dental check up? Did he use flouride trays while he was doing radation? It may be something simple or could be more serious like problems with his jawbone. Some people suffer from osteioradionecrosis which is death of the bone. That is treated with pressurized oxygen therapy (HBO). So you see it could be several differnt problems. I suggest taking him to the doctor. Does he have an ENT? If so thats where I would start and insist that they see him right away.
Im glad you figured out how to post. Now please keep asking any questions you may have. Best wishes, hope Ron feels 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: Sep 2010 Posts: 6 Member | OP Member Joined: Sep 2010 Posts: 6 | Hi Cristine, Thank you for your quick reply. I don't mean to sound ignorant, but what is an ENT? Thanks again for your concern and suggestions. Johanna
Johanna Brown caregiver to Ron SCC right cheek 2008. Cancer gone. Cancer back in neck 2010. Surgery to remove most of mass. Rad. 35 days. Cisplatin x4. Hospitalized with pnuemonia after treatment. Has G-tube. First PET scan on 2-8-11.
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | [quote=Johanna Brown]Hi Cristine, Thank you for your quick reply. I don't mean to sound ignorant, but what is an ENT? Thanks again for your concern and suggestions. Johanna [/quote]
ENT= Ear, Nose Throat Doctor
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Sep 2010 Posts: 6 Member | OP Member Joined: Sep 2010 Posts: 6 | Thanks for the definition. It came to me about a half an hour after I asked the question. I felt a little embarrassed but what the heck...!?
Johanna Brown caregiver to Ron SCC right cheek 2008. Cancer gone. Cancer back in neck 2010. Surgery to remove most of mass. Rad. 35 days. Cisplatin x4. Hospitalized with pnuemonia after treatment. Has G-tube. First PET scan on 2-8-11.
| | | | 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 | Nobody should feel embarrassed here, ever! We are all in this together. 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 | | |
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