| | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hello All: I ordered several boxes of OraMoist from the Internet. I got them yesterday, and I cannot stand to have the thing stuck to the roof of my mouth  , so I'll be happy to give them to one of you guys who like them. Just send me your address via email, and I will send them to you. ( [email protected]) julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Same here. I have one box with one missing.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Me too, one box, one missing!!! I thought it would be great stuff.... NOT! I guess if it works for someone then that's wonderful but it sure didn't for me.
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Don't they test this crap on people BEFORE they send it to market? It's just hard to imagine anyone liking these things cemented to the roof of your mouth for 2 to 4 hours. After a brief period I was desperately trying to scrape it off and I thought I was going to tear my skin!
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | So much for trying to give them away. If I'm not mistaken, I think I have another order coming from where I accidentally ordered from two places, duh. Hey, I know. How 'bout handing them out for Halloween  julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Hahaha Julieann! I'm willing to try them, in fact, I went looking for them today at CVS but they didnt have any.
I bought some other product to try, it's TheraBreath mouthwetting lozenges. I took one (out of the 100) and it did the job but burned my tongue so bad, my eyes were watering!LOL Must have been the mint flavor....my tongue is still very sensitive. If anyone wants to try them, I can mail ya a few to try.
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | LOL they must be good. What the heck are they anyway?
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | My daughter bought me some grape juice at Put In Bay near Cleveland, Oh. I tried it last nite. WOWIEEEE what a burn that put in this sensitve mouth. My sister took that Bottle home today after she washed her clothes. The bottle was pretty anyway.
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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Elizabeth, I have a similar issue to what you described. I recently stumbled into a new pack of Biotene "Apple Mint" flavor Gum. I live on Biotene Gum so I thought, "Great" be a nice change and maybe a litle bit of flavor will come through. Oops, burnt like the dickens and breaks my mouth out. LOL Love the Biotene products but this one didn't work out too well for me (And of course I bought a bunch). I guess we all just have to keep experimenting. Live and learn. Jim, I'm glad to hear you admired that pretty new bottle-LOL.
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Steve send me a pack and I'll try it. My mouth is not sensitive at all so maybe a different flavor would be refreshing.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | I'm sorry to hear that everyone's having such negative results. They work fine for me while I sleep or when I'm on a long walk so I don't have to carry so much water with me. Well, different strokes.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Oct 2010 Posts: 15 Member | | Member
Joined: Oct 2010 Posts: 15 | My twin brother has been diagnosed with Stage 4 mouth, tongue, jaw, neck and vocal chord cancer. He is not a candidate for surgery nor chemo due to liver and kidney failure earlier this year. He is having problems with heavy amounts of saliva in his mouth. Has anyone found anything that will assist with this problem?
Twin brother Stage 4. Mouth, tongue, jaw, throat, neck and vocal chords. Not a candidate for surgery or chemo due to earlier health issues this year. He is opting for no treatment. He smoked and drank. Nutritional levels were not at their highest the last several years.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Saying that he is not a candidate for chemo or surgery but what about radiation? Without radiation and perhaps all 3 he will not survive. Where did he get this opinion? I would definitely get to a CCC for a second one. CCC's http://www.oralcancerfoundation.org/resources/cancer_centers.htm BEST CANCER HOSPITALS http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | 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 | Hi ohmybluz
My Alex suffered like this before treatment caused by his tumours (we think). We tried old fashioned antihistamines - the ones that make you sleepy, not the newer ones. Your pharmacist may have alternative ideas and steer you towards other anticholinergics that have "dry mouth" as a side effect. Because of the liver and kidney issues, drug therapy may not be an option and definitely needs the advice of the doctor or pharmacist.
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: Oct 2010 Posts: 15 Member | | Member
Joined: Oct 2010 Posts: 15 | Thanks Karen,
That is certainly a suggestion worth trying and I will ask his doctor. Anything that may make him more comfortable would be a blessing.
Lori
Twin brother Stage 4. Mouth, tongue, jaw, throat, neck and vocal chords. Not a candidate for surgery or chemo due to earlier health issues this year. He is opting for no treatment. He smoked and drank. Nutritional levels were not at their highest the last several years.
| | | | | Joined: Oct 2010 Posts: 15 Member | | Member
Joined: Oct 2010 Posts: 15 | David,
Due to his kidney and liver failure, he is 6'4" tall and now weighs 147 lbs. The radiation could do as much damage as it does good. His doctor did not rec radiation at this time and my brother would not opt for it anyway. It is in his mouth, tongue, jaw, throat, larynx and sinus. It is also in the salivary glands and mucous lining. He is not looking to be cured or even for any additional time. He just does not want additional suffering.
Twin brother Stage 4. Mouth, tongue, jaw, throat, neck and vocal chords. Not a candidate for surgery or chemo due to earlier health issues this year. He is opting for no treatment. He smoked and drank. Nutritional levels were not at their highest the last several years.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I'm very sorry that he is to this point. I would check with Hospice and make sure he has ample strong pain meds. This cancer will not be kind to him in consuming his life so please be prepared for the worse.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Oct 2010 Posts: 15 Member | | Member
Joined: Oct 2010 Posts: 15 | Unfortunately, even in just the last two days, we see the difference. Hospice came in today.
Twin brother Stage 4. Mouth, tongue, jaw, throat, neck and vocal chords. Not a candidate for surgery or chemo due to earlier health issues this year. He is opting for no treatment. He smoked and drank. Nutritional levels were not at their highest the last several years.
| | | | | Joined: Oct 2010 Posts: 15 Member | | Member
Joined: Oct 2010 Posts: 15 | I am a speech pathologist and I fully understand what my brother's death will involve. My mother, on the other hand, does not and can not emotionally prepare herself for what is to come.
She handles a crisis with emotion, I try to deal with what is front of me and if I must, emote later.
We are a good team but I know better than to interfere with her coping mechanisms....nor she with mine. We each have our way. The critical point is assisting my brother and he does not much want to help anyone including himself. He waits until he is in pain to take pain medication. At that point, it is rather ineffective. He does not want to eat but will not say if that is due to lack of appetite, pain, or bad taste. It is difficult to know how to proceed. please help if you can offer insight.
Twin brother Stage 4. Mouth, tongue, jaw, throat, neck and vocal chords. Not a candidate for surgery or chemo due to earlier health issues this year. He is opting for no treatment. He smoked and drank. Nutritional levels were not at their highest the last several years.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Lori I wish I didn't have any "insight" into this issue but your post evoked vivid memories of flying out to San Francisco to visit my little brother who was dying at the age of 35 from HIV (not HPV). I have no easy answers just sympathy. He was miserable in the hospital. When we wheeled him out for some fresh air, he sobbed seeing his skeletal reflection in the glass window. The only thing that cheered him up was the joint of marijuana I smuggled in to him. Unfortunately, that's not usually an option. Dealing with your Mom is another story. It's hard to know what words to say. Some of the writings on end of life at the link at the bottom may help. One excerpt deals with the patient not eating which you know as a speech pathologist but your Mom may not [quote]It can be very upsetting to your family to see you eating less. For them, your interest in food may represent your interest in life... Loss of appetite and being unable to eat (together called anorexia) happens to more than 8 out of 10 of cancer patients before death. It is normal in the last months of life for parts of your body to start slowing down and eventually shut down. When you feel like eating less, it is not a sign that you want to leave life or your family. It is just a normal part of the dying process. [/quote] Nearing End of Life You sound like a wonderful sister and caregiver. Charm
Last edited by Charm2017; 10-30-2010 07:00 AM. Reason: typos
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Oct 2010 Posts: 15 Member | | Member
Joined: Oct 2010 Posts: 15 | Charm,
Thank you so much for your kind words and thoughts. They are more appreciated than I can express.
Twin brother Stage 4. Mouth, tongue, jaw, throat, neck and vocal chords. Not a candidate for surgery or chemo due to earlier health issues this year. He is opting for no treatment. He smoked and drank. Nutritional levels were not at their highest the last several years.
| | | | | Joined: Oct 2010 Posts: 15 Member | | Member
Joined: Oct 2010 Posts: 15 | Has anyone encountered a loved one with delerium early in the morning? My brother does not seem to know exactly where he is and has begun hallucinating. It lasts for about an hour and is usually shortly after he awakens. After that, back to normal.
Twin brother Stage 4. Mouth, tongue, jaw, throat, neck and vocal chords. Not a candidate for surgery or chemo due to earlier health issues this year. He is opting for no treatment. He smoked and drank. Nutritional levels were not at their highest the last several years.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Perhaps the side effects from pain meds?? The only time I experienced this was when Bill was hospitalized toward the end of treatment and they were giving him morphine IV. He was seeing bugs crawling on the sheets and said that "they" were washing down the room walls with a hose. Once home and off the morphine, no "visions"
Hugs, Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Oct 2010 Posts: 15 Member | | Member
Joined: Oct 2010 Posts: 15 | It's possible, but he is only on hydrocodone and does not take more that 2 doses of that per day (if we get him to take 2...often times only one). I am thinking the cancer in mets to the brain or liver. No real way of knowing since he wants no treatment. When the delerium starts it is that he does not know where he is (he may be at home but thinks we are in a grocery store) or having conversations with folks who are not there. Given that he is really not eating much of anything though, the meds may ultimately be the cause. Thanks Deb
Lori
Twin brother Stage 4. Mouth, tongue, jaw, throat, neck and vocal chords. Not a candidate for surgery or chemo due to earlier health issues this year. He is opting for no treatment. He smoked and drank. Nutritional levels were not at their highest the last several years.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Lori,
If his nutrition is compromised, this can also be a "sugar" related issue. Blood sugar issues can cause lots of dementia type behaviors.
I am so sorry...this has got to be so hard. I know you said he is opting for no treatment but how about supportive measures such as proper pain meds and fluids and food supplements?
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Lori, I am so sorry to read your story about what is happening with yoru brother. I cant even begin to imagine how hard it must be for you and your family to watch this happen right before your eyes. Im sure you all must feel so helpless. Im very very sorry!!!! One thing that should be a huge help is hospice, its good that they are there helping him.
One medication that may be helpful for his pain is the fentanyl patch. It gets changed every 3 days, its much easier to keep him painfree with a steady dose of medicine. Ask the doc. Im not very familiar with hospice policies or if they can get a different medication, but maybe they could help with the patch.
Prayers to you and your brother.
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: 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 | Off to Glasgow soon so this will be a quick response. Low sodium (salt) is also a cause of "confusion" especially if someone has poor kidney function. Given your brother has issues with kidneys I would be taking him the doctor for blood tests. All the other suggestions are good ones too, and no matter what, it needs a trip to the doctor.
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: Oct 2010 Posts: 15 Member | | Member
Joined: Oct 2010 Posts: 15 | All,
Thank you so very much for your input. It has helped in ways that I can not begin to explain. My brother, gets a bit weaker each day. That said, this weekend he chooses to be with a lovely
woman from his complex. My mother has concerns (because she can not control this)I don't. My thought is that he is an adult and deserves time alone when possible. This is probably the last possible weekend. So, Mom comes to my house this weekend and my brother is with his Lady Love. The End
Twin brother Stage 4. Mouth, tongue, jaw, throat, neck and vocal chords. Not a candidate for surgery or chemo due to earlier health issues this year. He is opting for no treatment. He smoked and drank. Nutritional levels were not at their highest the last several years.
| | | | | Joined: Oct 2010 Posts: 15 Member | | Member
Joined: Oct 2010 Posts: 15 | Christine,
Thank you so much for your kindness and suggestions. He is failing quickly so we will see what time allows us. Thank you for your compassion and caring.
Lori Lee
Twin brother Stage 4. Mouth, tongue, jaw, throat, neck and vocal chords. Not a candidate for surgery or chemo due to earlier health issues this year. He is opting for no treatment. He smoked and drank. Nutritional levels were not at their highest the last several years.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Lori Lee feel free to pm me if you need an ear or a shoulder x
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Lori, thats what OCF is all about. We care about each other. We celebrate our successes and all band together when times are tough. We are here for you. Hope today is an easier day for your brother and family.
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: Oct 2010 Posts: 15 Member | | Member
Joined: Oct 2010 Posts: 15 | Liz,
Thank you so much for that offer. For this moment in time, my brother is keeping the status quo. No real change but no real pain (thankfully). He has not had any delerium in the last few days either but continues not to eat. The mucous build up in his mouth is very heavy and does interfere with his speech. We will see if the suction machine helps.
Twin brother Stage 4. Mouth, tongue, jaw, throat, neck and vocal chords. Not a candidate for surgery or chemo due to earlier health issues this year. He is opting for no treatment. He smoked and drank. Nutritional levels were not at their highest the last several years.
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