| Joined: May 2014 Posts: 17 Member | OP Member Joined: May 2014 Posts: 17 | My tongue and cheeks are still covered with sores, mucositis, so it burns for me to even drink Boost or water. I had a g tube until Dec. 2014. Had a second surgical biopsy of cheek and tongue on Feb 2015, not cancer. Drs can only say "we don't know why it taking so long for you to heal". Any thoughts or suggestions please. I am very discouraged. [font:Comic Sans MS][/font]
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: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Some people seem to sail through this and some people struggle for months. There's a reason Christine is constantly talking about intake, because from my experience and observations it makes a huge difference. When I was forced to drop my intake it took me weeks to stop losing weight, and then it took me many months to recover. Of the people I went through treatment with the people who did best were the ones able to continue to get calories in.
Maybe its time to put the tube back in? Why did they take it out? Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Very good question Dave. Why would they take the tube out if you are unable to eat? Pattie, I'm truly sorry that you are struggling with this. I'm presuming that oral thrush has been ruled out. Have you tried swallowing Manuka honey? Hoping someone else can offer you more suggestions. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Pattie, are you taking ibuprofen or any COX inhibitors like Feldene or Celebrex?
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | What did the pathology say from the recent biopsy about the sores? I see you had verrucous carcinoma, and wonder if verrucous leukoplakia, Verrucous hyperplasia or chronic candiasis, etc. are possibly associated, causative to the chronic issue.
Hope this resolves soon for you.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: May 2014 Posts: 17 Member | OP Member Joined: May 2014 Posts: 17 | Tube came out Dec.2014. I had started drinking the Boost. I was thinking about having it put back in.
Last edited by pattie; 06-08-2015 02:35 PM.
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: May 2014 Posts: 17 Member | OP Member Joined: May 2014 Posts: 17 | No I am not taking any of the drugs you memtioned only Hydrocodone.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I know it's painful but poor nutrition (or lack of nutrition) seriously affects overall healing.
SO... Buy a high protein powder. Add milk or almond milk and blend.
I know it's painful to drink
so ask for magic mouthwash, swish and (if you can - swallow - I say this because some of them are made to be spit out... some you can swallow) otherwise spit it out.
this will numb you. Then CHUG your smoothie.
do this 2-3 times a day. and supplement with the boost.
Also if you are cancer free. Take a good multivitamin daily, and maybe some vitamin d and c. (ask your dr if this is okay.)
after you down your smoothie/boost. brush your teeth, waterpik them with luke warm water (replaces floss - freshens and cleans) then take a spoonful of manuka honey and let it melt in your mouth. swish for about 1 minute. Swallow. this is antibacterial, anti inflammatory, and fights infection. It stings at first then numbs and soothes.
Keep your mouth as clean as possible.
If you don't have a waterpik i advise getting a deluxe one and use it on the lowest setting with the tongue cleaner (looks like a little spoon) it is terrific for cleaning and has different levels of force.
hugs and best of luck.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: May 2014 Posts: 17 Member | OP Member Joined: May 2014 Posts: 17 | Thank you for your suggestions. I will get some protein powder and Manuka honey. The magic mouthwash puts me thru the roof as does toothpaste. Have been flossing but will have to buy a water pix. Will try anything at this point. My Dr. at Moffitt has not been much help. All she says is "we don't know why it's taking you so long to heal". I have an appointment with my dentist on Fri. Thanks again.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Sometimes it's trial and error. I know it totally sucks. I experimented a lot. Clearly my mouth isn't as sensitive as yours is. However I had this lovely hole/ulceration on my tongue for quite a bit. I stepped up the cleanings, and used cortaid to help it heal. I wouldn't advise long term use of it though as it's a steroid an can mask other issues. Maybe talk to the pharmacist. There are different types of magic mouthwash. It was actually invented by a dr here at my local hospital - but from what I've heard the formula varies. I was told I could swallow mine. I know it had nystatin and lidocaine. I am not sure what else. But I know others haven't been able to swallow it. So. Maybe they can mess with the formula to see what may work. Sadly (though I wouldn't wish this upon anyone) most drs who haven't been through this simply don't get it. They are mostly of the mind set - well you're alive and cancer free. They simply cannot understand the pain.
Anyway. manuka - does sting. but after it it feels great. Now if it is too painful Cut it down with warm water.
hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | |
Forums23 Topics18,170 Posts196,933 Members13,105 | Most Online458 Jan 16th, 2020 | | | |