| | 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 | Susan, I wrote a response to your other post about different medications to ask for. Its best to always begin your own new posts so that each member who makes a post will get their own answers to questions.
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: Dec 2010 Posts: 11 Member | | Member
Joined: Dec 2010 Posts: 11 | The site is confusing for computer illiterates. I just signed up yesterday I have a lot to work on but I'm grateful for this site and feedback.
Thank you
Have been undergoing biopsies since 2008 until last October it can back cancerous tumor 2c on right side of tongue. Had surgery to remove and also neck dissection. That was Nov. 8th. After that extensive dental work an now Currently undergoing radiation on my second week.
| | | | | Joined: Dec 2010 Posts: 11 Member | | Member
Joined: Dec 2010 Posts: 11 | Thank you David for your help. I know that is heat the RO told me too , it's too early. But I have the sores they are painful. I'm going to ask him for a pain killer and that magic mouthwash. That is what it is called?
No I do not have a peg thank goodness. I eat cottage cheese and plan macaroni boost and ensure. My energy level is decreasing and this medication for what RO called a yeast infection is making me dizzy.
Did u go thru the same thing?
Thank you gotta figure out the signature line
Have been undergoing biopsies since 2008 until last October it can back cancerous tumor 2c on right side of tongue. Had surgery to remove and also neck dissection. That was Nov. 8th. After that extensive dental work an now Currently undergoing radiation on my second week.
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | I would go a step further than David and recommened that you have your entire pain management program evaluated for efficacy. Morphine is typically given for "short term" pain relief and also for breakthrough pain. You will also need to be on a "long term" pain med, such as Fentanyl or Morphine time release patches. RO's and PCP's are terrible about prescribing these - talk to your MO or get a referal to a pain management specialist. Pain control is a basic patient right - demand it.
It is early for mouth sores, they typically start to show up in the third or fourth week. The yeast infection (AKA candidiasis) or Thrush, is common when the pH in the mouth changes for any reason, dry mouth, etc. This is probably the main source of your mouth pain. It would be a burning sensation, similar to mouth sores. You also didn't mention chemo - some chemo drugs, especially Cisplatin will exacerbate mouth sores.
Whatever you do, do NOT stop treatment. The odds of survival are greatly diminished if you do.
By the way, many of us here were misdiagnosed or diagnosed late. In the scheme of things many doctors (and dentists) never even see an OC patient during their entire practice. SCC is relatively rare - your form of OC I can count on one hand in the 8 years I have been here.
Last edited by Gary; 12-27-2010 02:45 PM.
Gary Allsebrook
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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: 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 | Hi your cancer sounds a lot like mine... your information is helpful and story inspiring. Hopefully things are going well for you.
Cheryl
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 2010 Posts: 4 Member | | Member
Joined: Nov 2010 Posts: 4 | Its strange the ENT DRS didn't do any biopsies surgery...
The mucoepidermoid CA is not common in people. I think yours high grade by the time the doctors diagnosed it? I also had high grade mucoepidermoid CA before two years the sublingual salivary gland, but the radiation treatments and side effects are the same for everyone!
As i understand with my team at Moffitt CA Center and my RO here is chemo which not used with this type of cancer as it does not respond to it.
As everyone suggested to make sure you are getting plenty of fluids and calories and protein! Supplements are great-- protein powder, ensure, boost, carnation.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Some ENT doctors DO do biopsies. The one I went to does them. There doesn't seem to be any hard and fast rule. Maybe some have had more training in that area. Mine also specializes in cancer patients.
Take care,
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: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | Ron's ENT did his biopsy and he's the one who did the glossectomy. i was there in the office when they did it. Ron went to his oncologist for his regular Lymphoma checkup and showed the doc his tongue, doc called in ENT in the office building to come take a look and he said "OH F" and Ron knew it wasn't good, shit I knew it was cancer when he finally showed me what was going on with his tongue, I bout shit! His oncologist gave him the specialist ENT in this field at the Cleveland Clinic main campus downtown Cleveland. Thank God for him and his team! But I still swear Ron had 9 lives!
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi Shelly,
I think we probably have all the same doctors. I had Dr. E too. I'm in San Francisco and was at UCSF as well. I'm so sorry you were misdiagnosed. I was too. Its very upsetting and frustrating. I hope you have a full recovery from this and that you won't be in discomfort for much longer. Feel free to PM me any time with questions.
Get well soon! Kate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Dec 2010 Posts: 14 Member | | OP Member
Joined: Dec 2010 Posts: 14 | Thank you! Isn't Dr. Eisele awesome. I adore him. I feel so validated when I see him. Like I'm a real person and not just a number. Take Care, Shelly
43,T1N0M0
Mucoepidermoid Carcinoma Int/high
9/10-1st surgery
10/13/10-2nd surg,UCSF Dr.Eisele rmv tumor,L floor mouth excised, muscle moved under chin,skin graft L thigh to cover. Neck disct 16 nodes
11/29/10-IMRT 30under chin
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