| Joined: Aug 2012 Posts: 71 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2012 Posts: 71 | ChristineB, thanks for the info, will continue to drink lots of water, as I don't see this as a problem now, because I usually buy and drink bottled spring water and I usually drink at least 1.5 to 2 liters a anyway. And now I am drinking more.... after the 3rd Rad TX my buds and glands do seem to be SLIGHTLY less...
David, I will ask the dentist next week if twice a day trays is correct, but I think they are just being cautious (but it does take time, and I know fluoride is poison) My dentist tells me they have and are treating patients with this same issue (no salivary glands, or little production)... I was thinking the radiation path should not come out my back of the head because the RAD OC said that he has to be careful and mindful of the spinal cord..
Kris, Thanks for the reminder about stretching my jaw, I have done so and will continue, just one more great point that I discovered on this great www site.
My lovely bride is googeling the dry mouth and I think that the destruction of the salivary glands is her greatest fear (and to some degree the taste buds).
Some friends have said that they would not do all the RAD TX or even none due to the poison and gland destruction, since I had clear margins... But no one knows until...
Keep the faith.
Last edited by MickeyW; 09-08-2012 01:38 PM.
large lymph node Left Neck around May 22 2012 ENT June 6, did needle Biopsy - Negative ENT CT scan July 9 - Negative Remove lymph node July 26, DX - SSC - T1N2aM0 PET Aug 7, BOT Aug 14, endoscopy, 1cm - clear margin HPV+ TX 33 IMRT - 6 Chemo - Taxol/Carboplatin TX chemo 09/04/12 RAD 09/05/12 | | | | 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 | Mickey....PLEASE do NOT listen to the well meaning friends who are saying they wouldnt do all of their treatments. That could make the difference between life and death. The loss of taste is temporary, it will return slowly over time. The saliva shortage is also temporary for most of us. There is medication called pilocarpine which will help you to produce more saliva. Beware of googling info. You really have found the very best place for correct up to date medical info about everything to do with oral cancer and its side effects. Check out the Health on the Net Code (HON) which certified OCF. Not just any website can have the bragging rights to be HON registered.
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: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Mickey,
How many of your friends have had cancer twice, because thats what will happen to you if you cut your treatments short. Hell, they may not even be able to stop this occurance.
This disease is a KILLER. The treatments that are known to be life savers come with side effects. Your taste will come back. The only person who noticed I lost a little hair was the girl who cuts my hair (my wife didn't even notice). Your saliva may be reduced so you may have to keep a little extra water around. The alternative is to be permenantly wearing a dirt suit, about 6 feets worth.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Unless your friends are oncologists specialising in head and neck cancer, you can't afford to listen to them. Listen to Christine and Kelly who have been there, have done lots of research, and know what they are talking about.
Regarding hair loss: Hair loss will come from 2 of your treatments. One will be as others have said from radiation. The loss will be where the radiation hits. The second will be the taxol. Even at small doses, it is likely to affect you to some degree. As you say, a minor issue for you, but be prepared with your winter beanie, just in case. I am yet to meet someone who did not lose their hair but also don't know anyone who had small doses. However, it makes no sense that it would not affect you, as over 7 weeks you will have had close to the standard dose - just split over 7 weeks instead of 1 day per 3 weeks.
Fluoride: I don't know if you have fluoride in the water over there but we do in Australia and I have had since I was about 6-7. the level of fluoride you would receive is a long way under the toxic level - especially if you drink bottled water. In Australia, they have found that kids who drink bottled water get more cavities. As an aside, the bacteria that sits in your mouth is linked with heart disease so oral hygiene is the higher priority at this stage.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | I had the Taxol weekly over the 7 weeks with Carbo. I did not loose my hair. I don't even think it thinned.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | 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 | Rads is notorious for abusing hairloss, but it's temporary and depends on where the beam is aimed
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: Jun 2011 Posts: 188 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2011 Posts: 188 | What everyone said Mickey You are in great hands with your faith, drs, family and these folks))))
Caco CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
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