| | 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 | really? wow... Im 2 days in and no change yet. Did they reccomend a good cream? 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: 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 | Never put cream on prior to going to radiation! I would put the cream on during my ride home from Radiation. I kept putting it on a couple more times per day. Always pat it on, never rub your tender skin! I used prescription Beta-Val cream. Ask your doc for what they recommend you to use for your radiated akin.
(Sorry to hijack your thread Will)
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: Mar 2011 Posts: 131 Likes: 5 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Mar 2011 Posts: 131 Likes: 5 | Judi, I've been in Portland for 15 years but I'm from NYC. I'm at Mass General and I f..ing hate Boston. Oh well... the RO at Maine Med was a pediatric and prostate guy and he wanted to microwave my neck. I said "no thanks" and came to bean town to see Dr. Busse who has been doing head and neck for 35 years. He say's he can most likley cure me so I'm gonna stick with it. For as much as this sucks, I HAVE been through worse (but that's another story). Good luck with everything and stay close to the folks here. They are wonderful. I thank God I found them. Will
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | I agree with Will...Boston sucks, love the town for leisure (my wife's family lived there for 2 years and we visited last summer) but it's very tough to find dental professionals there that give a damn. lol. Sorry, I got beat up calling the Boston area for Oral Cancer Awareness Month and am still kind of bitter about that week, we had one volunteer in tears after a call. It's very difficult to teach left coasters to deal with the direct personalities of the East Coast. I made my living as a young man in sales and most of my clients were on the East Coast...back then I didn't mind putting the verbal smack down and matching the biting sarcasm with equally biting wit. Kind of tough to do that representing a cause for goodwill. On a good note they do have an impressive public transit system and a couple of good schools 
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | My salivary glands held up pretty good for several weeks but the Cisplatin made everything taste metallic.
If you have really fair skin you may have a worse reaction to the radiation. The good news is the skin typically heals first post Tx.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Will, what's wrong with Boston?? I was treated just down the road at Dana-Farber (and live about 45 minutes west of there). If there's anything I can help you with to make your stay more pleasant, let me know, okay?
- Margaret
Last edited by margaret_in_ma; 03-22-2011 09:18 PM.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | 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 | @Mainewill the best place for you to be is where you are confident you are getting the best treatment! Lack of trust is detrimental.
Take care!
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: Mar 2011 Posts: 131 Likes: 5 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Mar 2011 Posts: 131 Likes: 5 | Thanks for all the great advise folks. As far as Boston goes (and I do trust my team at Mass General)It just seems like this town has no wealth buffer. It seems like there are the "haves" and "have nothings". I realise that we are seing more and more of this all over America but it seems like Boston has always been leading the way in that respect. And...that area between the Tobin Bridge and I95 North (Rt.1) I don't think I've ever seen a more ugly palce in my life and I used to be homeless. Oh..And my truck was stolen here and I had to go to Harlem to get it. When I opened the drivers door like 200 crack viles fell out on the ground. Other than all that... I guess it's OK.
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | Hi MaineWill: Good luck with the start of your radiation. I just finished mine on Monday. Seems like we have similar diagnosis. I went for a second opinion at Dana-Farber but ended up working with Bay State Cancer Center near my house. (Western Massachusetts, about an hour from my house.) How are you feeling overall? -Michelle
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
| | | | | Joined: Mar 2011 Posts: 131 Likes: 5 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Mar 2011 Posts: 131 Likes: 5 | I feel prety good. My mother is with me and she is a mess which is making it harder for me. Do you know if you were poorly or well differentiated? Did you have the DBL2 marker? They have told me that I need more powerful chome than most because of these factors (Taxol and Carboplatin) but I havn't started yet because I feel like I need to learn more about them.
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
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