| 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
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