| Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | OP "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | Simon's going pretty well all things considered, but in the last week to ten days his tongue has formed nasty opaque ulcers on either side. He saw the speech therapist and the nutritionist a couple of days ago and they said it is likely more recovering from radiation.
His throat is also sore, mostly in the morning after a dry night. I don't think he'd worry if it was all part and parcel of recovery, and the fact that it's running down both sides of the tongue sounds like it's OK, but I suppose we're all a bit spooked by the slightest thing. Do these blisters/ulcers 5 weeks out from RADS sound "normal"?
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2011 Posts: 267 | Sounds normal to me. I'm about 14 weeks out from the end of radiation and still have some ulcers on my tongue. the Erbitux contributes, too. Just make sure he shows his docs anythithan dat worked him and definitely any sores that don't heal within a couple of weeks.
Tracy - 33 at diagnosis SCC right ventral tongue Dx 4/11. T1N2M0 1st resection 5/11. Bilateral neck dissection: 2 pos nodes 2nd resection w/graft 6/11. Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11. 3 month MRI and PET/CT all clear. 6, 9, 12 and 24 month post treatment MRIs all clear. | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Yes it takes a while to heal, and diet can irritate his mouth as well particularly acidic foods.
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: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | OP "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | Thanks Tracy. I suspected that might be the case. I hope things are going well for you. How did you handle the Erbitux overall?
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | OP "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | Hi Cheryl, the ulcers have appeared a couple of weeks after radiation finished. Do you think that's a worry?
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | I would always suggest having them looked at - it can't hurt. However radiation is cumulative - a few weeks a few radiation (depending on the person) is the worst time. Plus you are dealing with very sensitive traumatized tissue. Anything can irritate it - point in fact. My real tongue (half of it is a graft) my real tongue was irritated by an upper molar for the better part of my rads - it got worse as rads progressed - my upper molar is inset - so it was in a position where because of the swelling etc my tongue was being pushed into it constantly. I was very conscious of it so much so that I would sleep a certain way to prevent it from rubbing at night - I finally asked my dentist a few months post radiation to please File it down, he did and the problem for the most part was solved - that area is still sensitive 7 mos out of radiation! But usually only when I eat foods that irritate it. Rough foods, dry foods, spicy foods, or acidic foods! Some people take longer to heal. So If your brother has tried to get back to eating and is still healing ths could very well cause ulcerations and issues! But it is always a good idea to have it checked out. Good luck!
Last edited by Cheryld; 12-12-2011 09:33 AM.
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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Those nasty little ulcers on the sides of the tongue are a bitch and hurt like like hell when they brush up against the teeth. They are typically caused more by chemo then radiation but radiation is a player to be sure.
The nasty little things took the longest time to heal as well. Well over a month post Tx. They were the main reason I was on pain meds for so long. Swish & spit "magic mouthwash" will help those as well.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Sam, to get him through the next few weeks or months you might also ask for some viscous lidocaine. That will numb the area for a brief period, at least long enough to eat or drink. Here in the US it's a prescription med.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | My husband's dental work scatttered some of the radiation back onto his tongue, which didn't help matters. He found the viscous lidocaine to be very helpful. Good luck to Simon and to you - you are past the worst of it!
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Lidocaine is short acting. The Morphine in Magic mouthwash will give you at least 30 minutes of pain free bliss. Besides Magic Mouthwash has lidocaine as well.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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