| | Joined: Aug 2009 Posts: 21 Member | OP  Member
Joined: Aug 2009 Posts: 21 | Anyone have issues with your tongue turning grey post radiation? It comes and goes but is really weird looking. It gets numb then the whole front half and underside of my tongue turns really pale grey for about 5 minutes or so then turns back to the normal red. My oncologist had no idea and I have a call out with my ENT. Just wondering if anyone had experienced it?
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=92220#Post92220Turns out its a circulation issue which only happens occassionally. For me its when Im really cold it happens.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have to keep ,my tongue brushed to keep thrush at bay. It gets a nasty dark color and looks dark grey until I do brush, then everything that comes out while I do is a nasty color like dried blood.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Jim,
Maybe you need to be on a maintenance dose of Nystatin for your thrush. I use 1 Tsp daily after lunch and it seems to keep it 'at bay'. Ask about it you don't already use it.
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Aug 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | Thanks everyone. I talked to my ENT and he told me to take 1 baby asprin a day to help with the circulation. He will recheck me next month so hopefully that will be ok. Thanks again for the advice.
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | Joined: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | I am soooo glad that this happens to someone else !!! It happens to me all the time. I say it is like my tongue is having a seizure! My tongue turns grey, numb and I am unable to talk until "it's" over. Seems to happen after a rapid movement...like leaving a restaurant, by the time I get in the car, my tongue is grey & numb. In the course of 1 day, this happens about 4-5 times. I asked my chemo dr. he said "ask your ENT dr. Well, at least I'm not alone..even if nobody else knows what this is...I'm glad YOU do!!!
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have had Nystatin and it didn't do much. Maybe it's from the implants in my tongue? Brushing seems to be what helps the most.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Dianne, I havent had an 'episode' for a long time. It just happens. I think I had it once during the whole winter. So that should be encouraging, the longer you are out of treatment the less frequent the grey/numb tongue appears.
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 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Thanks Christine & EZJim, to say the truth...as long as I have my water w/me @ ALL TIMES...I could cope with Anything!!!
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Water will be a part of you for a long time Dianne. I even take it to church and put it by my seat. LOL Now there are a lot that bring a bottle of it to church. Even the Pastor has one on his pulpit.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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