| Joined: May 2014 Posts: 17 Member | OP Member Joined: May 2014 Posts: 17 | I live in Florida and had my treatment at Moffitt Cancer Center. 33 Rads and 3 Cistplatin.
Recently spent time in Baltimore and went to Johns Hopkins. I was told there that I had several Hot Spots from over radiation in my mouth and that is why it still burns when I put anything in my mouth. I went down to 104 pounds. I drink Boost, protein shakes, CIB. They put me on Gabepentin for nerve pain. Helped a little but it dries my mouth out so bad. I woke up choking at night even though I use a humidifier to help me sleep.
Back in Florida again and back to Moffitt. Basically was told there is nothing they can do for me. Stop taking Ibprofen it will mess up your stomach. I said what can i do for the pain. Gave me a referral for pain management. Well unless you have neck, back, hip, knee, joint pain your SOL. If i don't put on wait they want to put jpeg in again. That won't happened. Any suggestions would be greatly appreciated. Thanks Pattie
Surgical biopsy Jan.2014 diagnosed verrucas carcinoma, previously biopsied by oral surgeon in office diagnosed verrucas leukaplakia. Radiation 33 sessions 4 chemo. Jpeg March 2014, removed Dec 2014 when started drinking boost. Surgical biopsy Oct 2014 - Jan. 2015. no cancer
| | | | 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 | Pattie, Im so very sorry you are having so many of the awful after effects from your treatments. To me it sounds like its a viscous circle where everything that helps is a struggle.
Will a feeding tube make it easier for you to take in more calories? Are you able to drink the Boost Very High Calorie? If I remember correctly, the BVHC has over 500 calories per individual drink so you would get a couple hundrd more each time you drink one. You probably dont see it in carried in very many stores. It can be purchased thru the Amazon box on the right ----->
When someone goes thru what you have, gaining weight usually takes several years. Your body has so much to do to recover that it takes a very long time. Even if you take in 4000 or 5000 calories a day, your body is still burning up calories at a super high speed trying to rebuild itself. So even with those many calories daily you probably will not gain weight. It took me from Sept 2007 when I finished my rads until the end of last year to begin gaining any weight.
Best wishes with everything you are dealing with!!! 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: May 2014 Posts: 17 Member | OP Member Joined: May 2014 Posts: 17 | Do you think taking in more calories will help my mouth to heal anymore even though it's been quite a while since treatment ended. I really thought i would be doing a lot better by now. I must be 1 of the rare few that get affected like this from radiation. Chronic burning, pain and discomfort are no fun to live with.
Surgical biopsy Jan.2014 diagnosed verrucas carcinoma, previously biopsied by oral surgeon in office diagnosed verrucas leukaplakia. Radiation 33 sessions 4 chemo. Jpeg March 2014, removed Dec 2014 when started drinking boost. Surgical biopsy Oct 2014 - Jan. 2015. no cancer
| | | | 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 | To heal the body needs protein. By taking in more calories from the higher calorie drink formulas you are also getting more protein. Im not a medical professional but I think it should help with your healing.
Im so very sorry you arent doing so well!!! OC is a horrible disease with barbaric treatments. Some patients sail right thru while others suffer immensely almost right from the start. I hope you are just healing slowly and that you will eventually get to your new normal where everything is better than how it is today. Maybe rinsing with one cup warm water, 1 tsp baking soda and 1 tsp salt (stir it up good then swish for at least 30 seconds and spit it out) would help? I have to warn you, the salt will probably burn your mouth so its ok to cut it back. Just try your best to handle having some salt in there as it should help with healing.
Best wishes! 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: May 2014 Posts: 17 Member | OP Member Joined: May 2014 Posts: 17 | Thank you for your response. I will definitely increase my intake.
Surgical biopsy Jan.2014 diagnosed verrucas carcinoma, previously biopsied by oral surgeon in office diagnosed verrucas leukaplakia. Radiation 33 sessions 4 chemo. Jpeg March 2014, removed Dec 2014 when started drinking boost. Surgical biopsy Oct 2014 - Jan. 2015. no cancer
| | | | Joined: Jul 2016 Posts: 85 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jul 2016 Posts: 85 | Pattie, I am a year and a half out on the chemo and radiation. Still on the feeding tube and am down to 86 pounds. I too have constant rip roaring burning in my mouth and more dry than I could ever explain. Wake up gagging as it is so dry I can not even move my tongue. Sounds like we are two in a million. Seeing my ENT next week and got my fingers crossed for some kind of relief. I'll sure let you know if he has any suggestions.
Sept 2002 Rt breast cancer no chemo or radiation. March 2015 Rt tonsil cancer - walnut size lump rt side neck. March 2015 Scan, biopsy confirm March 2015 Port, G tube placed, 10 teeth removed. July 2015 completed 5 chemo/35 radiations Sept 2015 Cat Scan all clear July 2016 G tube, port still in place Ive had Thyroid "graves disease" and Lupus for many years. 4 kidney stone surgeries past 3 mo with over 100 stones still there !
*** Update... Jo passed away 12/20/17 ... RIP Jo ***
| | |
Forums23 Topics18,170 Posts196,930 Members13,105 | Most Online458 Jan 16th, 2020 | | | |