| Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | My RO told me to buy the drinkable aloe vera juice and use it every day; seems it has had numerous medical studies done on it with positive results reported often.
Most of the time I felt like I had a mouth full of copper pennies. Eventually it does get better. And I found sucking on lemon drops helped also.
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: May 2014 Posts: 22 Member | OP Member Joined: May 2014 Posts: 22 | Yes My Doctor advised I get it early. I have been trying to work but my voice I use at work and I don't know if I will have that use after this week. It seems my tongue is swelling, making eating and talking harder. I get a pep talk from my DR about use it or lose it! So I am drinking water and eating as much as I can. My teeth are in good shape and I have fluoride trays. Only issue is they gag me most of the time and I sometimes throw up the food I have eaten. Thanks for letting me speak about daily issues!! I hate to complain to my family. They are really worried. | | | | Joined: May 2014 Posts: 22 Member | OP Member Joined: May 2014 Posts: 22 | Thanks I am a 55 year old at 225 pounds. Lost four pounds last week. Your comments really explain what it takes. I am ready for this!! Best to you!!! | | | | 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 | At some point you may lose ALL taste... then it's just nothing. Which I suppose is better than metal. I found that natural foods. In their natural form tasted best. SO no processed foods with crap added. Fresh veggies (fruits were acidic and had NO sweetness so they were very bitter - still are) I'm a vegetarian so I can't speak to the meat but the less chemicals added the better the taste. Sores - you can try manuka honey it may help.
Hugs
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: May 2014 Posts: 22 Member | OP Member Joined: May 2014 Posts: 22 | Thanks funny watermelon seems the best right now. We did try pasta tonight. Whatever it is I just have to keep eating!!! I cranked up the water intake today, chemo on WED! | | | | 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 | Yeah watermellon is cool and usually sweet and bland so great - enjoy
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Watermelon is also one of the best sources of potassium you will be using a lot of on this journey. Enjoy it! Experiment with some smoothies. You may need them eventually. Watermelon works well in those too.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: May 2014 Posts: 22 Member | OP Member Joined: May 2014 Posts: 22 | I have been trying to figure out this HPV thing. I have been married to the same wife for 32 years. I am not a participant ever in what I am reading this is caused by. Where did this come from? Regardless, I will have this the rest of my life. My question is, will I ever be able to kiss my family again? I have avoided all physical contact with my family until I know what to do to protect them. Things changing rapidly.
Last edited by Vernon; 05-14-2014 01:38 AM.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Vernon - The short answer is most everybody gets it and for many, the immune system clears it on its own. Specifically re kissing: <<Oral HPV is not casually transmitted by sharing drinks or simple kissing on the lips. It is unknown if penetrating type kissing (French kissing) is capable of transferring an infection. HPV is not transferred by intimate objects such as sharing a spoon or on surfaces such as doorknobs.>> The above quote is found at the HPV link noted in your post above and if you go to the link about patients' questions re HPV, there is a wealth of information and all types of questions answered. I have had no direct experience with HPV but you will probably hear forms others who have. Meanwhile - I think you should keep kissing your wife - especially if you are good at it.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | 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 | As far as HPV goes, there is still much that is unknown about this disease. It is known to cause not only cancer of the oropharynx but also anal, cervical as well and genital warts. If between the ages of 12 and 26, the guardisil shot is available in a series of 3 shots. Getting children vaccinated prior to them reaching sexual maturity is their best bet at being protected against these diseases. Studies are being conducted to determine if the shot would help older, already exposed patients. Also a study is being done to see if lesser treatments can be given to HPV+ OC patients as they generally respond much better to certain OC treatments than non HPV patients. There is still so much to learn about HPV. 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 | | |
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