| Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | well, interesting information here. I have heard of none of this except ENT told me in the beginning that he might lose all of his teeth. Dentists and doctors are an hour apart so no connection whatsoever...it's rural Iowa. I will mention it to him to bring up to nurses on Monday. He can barely open his mouth as it is. Big guy 6'3" and barely can open his mouth! Then me, a tiny 5'2" with a huge open mouth! thanks for the information!
Spouse of 58 yr old with BOT cancer Stage 4a HPV16 positive 3 chemo treatments cisplantin 35 radiation treatments 7000 cGy former smoker/chewed tobacco for 38 yrs. 1/2020 diagnosed with cancer near TMJ 4/2020 chemo 5 days every 2 weeks 6/2020 proton therapy 9/21/2020 cancer free
| | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | Connie, my dentist gave me fluoride trays per both her opinion and the ENT I think, and hunted up a flavor I could tolerate, on top of it. I didn't use them as I should have, and that was a bad call. I think the radiation would still have done a number on me, but there's no telling ... so if your husband can get them made and will use them, it is well worth the effort to try. It hurt after a while to put anything in the mouth at all, but encourage him to do what he can, as often as he can ... he's going to want those teeth, and there's no getting them back once they're gone. (Dealing with new dentures here, and it's no picnic. Though I must say, they do look nice! But golly, learning to eat with these makes the feeding tube seem like it was a walk in the park. You can quote me if you think that would motivate him. )
Surgery 5/31/13 Tongue lesion, right side SCC, HPV+, poorly differentiated T1N0 based on biopsy and scan Selective neck dissection 8/27/13, clear nodes 12/2/13 follow-up with concerns 12/3/13 biopsy, surgery, cancer returned 1/8/14 Port installed PEG installed Chemo and rads 2/14/14 halfway through carboplatin/taxotere and rads March '14, Tx done, port out w/ complications, PEG out in June 2017: probable trigeminal neuralgia Fall 2017: HBOT Jan 18: oral surgery
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Chayisun12,
In Ontario, the Canadian Cancer Society has volunteers that drive patients to their treatments. Off hand I don’t have their contact number, but i’m Sure if you ask at your hospital, they will have the info. I also came across patients who were using this service while John was in treatment. So, ChristineB didn’t really point you in the wrong direction.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | good information as usual. I"m against fluoride on most accounts but this isn't most accounts so I will tell him to ask about this.
Spouse of 58 yr old with BOT cancer Stage 4a HPV16 positive 3 chemo treatments cisplantin 35 radiation treatments 7000 cGy former smoker/chewed tobacco for 38 yrs. 1/2020 diagnosed with cancer near TMJ 4/2020 chemo 5 days every 2 weeks 6/2020 proton therapy 9/21/2020 cancer free
| | | | Joined: Aug 2018 Posts: 8 Member | OP Member Joined: Aug 2018 Posts: 8 | Thanks everyone for the wonderful advice and support. Sue will be having the treatments at Victoria Hospital in London Ontario. that's where she had her surgery. The folks there have been super nice and have told us that they are there for us at any time.....Well, I assume not at midnight.....As for the number of grays they didn't mention that but I've got a list of questions to ask. I showed Sue this site and she is so touched by all the comments and she feels much better. Sunday we are going out for a great meal and lots of desserts, too. Monday is dentist day....Christine, thanks for the kind comments. Sue is so special to me and we are always together through so many good times and a few bumps along the way.
By the way our daughter is named Christine. However she lives in Johannesburg, South Africa but plans on coming home in mid September to be with her Mom.... | | | | 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 | Yes, doctors always should be available even at midnight! At least thats how it is here in the US. There is always a doctor on call 24/7/365 no matter what time of day. After the doctors offices close, an answering service will answer calls and in turn call the doctor who will return emergency phone calls. Ive only had to do this a couple times in my life and always had someone call me back within a couple minutes. We all need help to get thru some of the most difficult things in our lives. Im glad you showed Sue everything we have talked about. OCF's members are the best!!! I had a heck of a time with treatments soon after I joined this group. I was amazed at how perfect strangers quickly turned into some of my best friends and helped me every single step of the way. Im still in touch with those people today, 11 years later. We all have a common bond which makes us like a huge extended family. It takes a village... We will be here for you both and help you get thru it too 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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Chayison12,
At Princess Margaret Hospital there is an after hours phone number that patients can call for advice. I have done that several times. I called, left my phone number and the nurse called back after about 5 minutes. Do find out if they have that service at Victoria Hospital. It should be available for weekends too. Of course, for the more serious situations, your local ER is where you should go. I have no clue what the e-Health situation is now, but sometimes they can access files at another hospital. I know for sure this is true at the University Health Network in Toronto. Also, doctors and ER staff will call your doctor/clinic to ascertain the facts if necessary. Ask them to do that if necessary. When John developed deep vein thrombosis, I took him on the weekend to the Er at our local hospital in Markham. By Monday when he went back for his radiation treatment, they already had his consultation with the thrombosis clinic booked and st up. There is also the possibility of getting help from a visiting nurse from Community Care Access if the ER doctors/hospital doctors feel it is warranted. I had all the help I needed that way. John also got extra hydration at the radiation treatment centre. We just had to ask. He had the blisters on his neck looked at and the nurse taught me about using saline soaks. Be proactive and ask. Sometimes it’s not that the doctors don’t want to tell the patients, I feel it is more a situation of everyone assuming someone else has told the patient.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | 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 | Chayison... I sent you a private message (PM). To go to your PMs, click on the tiny flashing envelope next to your My Stuff tab near the top of any page in the middle of the OCF menu bar. Thank you 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: Aug 2018 Posts: 8 Member | OP Member Joined: Aug 2018 Posts: 8 | Thanks Christine I read it. Much appreciated...Anyway, today Sue and I visited the dentist at Victoria Hospital and had a nice conversation with the dentist. Got all set up with the fluoride trays and instructions on how to use them and emphasized that this is a lifetime commitment. The Dentist has booked an appointment to see Sue after her first treatment to see how she is doing. Also, she will be seeing Sue after the second, third weeks and told Sue if she needs to talk to her to call the office. The dentist will also see Sue after her final treatment. Sue and the dentist spent time talking about travelling and talked to her about what to use and what to avoid. She is going to touch base with our regular dentist to keep her up to date......Now we prepare for the first treatment on Friday. We are to meet with the radiologist before the treatment and I have a list of questions to ask.
Thanks for "listening" to our concerns and much thanks to everyone for their wonderful replies. Be so glad when this is all over.....Sue and I are talking about becoming volunteers at the hospital. We have the paperwork...…. | | | | Joined: Aug 2018 Posts: 8 Member | OP Member Joined: Aug 2018 Posts: 8 | Just received a phone call from the radiologist and, after reviewing Sue's CT scan and MRI, he told Sue that they have located cancer cells in the lymph node and that the radiation treatments are on hold and surgery is to be done to remove the node and the cancer. After that Sue will need the radiation treatment. I'm hoping this is better news in that the cancer is centralized and removable. He told Sue not to worry that she is in good hands.....Goodess, I hope so..... | | |
Forums23 Topics18,197 Posts196,999 Members13,182 | Most Online614 Jul 29th, 2024 | | | |