| Joined: Feb 2013 Posts: 53 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Feb 2013 Posts: 53 | I have just begun viewing these forums and am thankful to all of you for your helpful information. I was diagnosed in 2010 with a squamous cell carcinoma of the alveolar ridge requiring the removal of gum and four teeth. I recovered well and life was back to normal until I discovered a new tender spot and had a recurrence in November, 2012. I had surgery to remove more gum tissue and three more teeth, followed by radiation. Again, I have recovered well and am 4 weeks post radiation. I am a 57 year-old female, ran 5 days per week, never smoked and rarely have a glass of wine. I have lost about 12 pounds (now about 95 pounds but I'm only 5 feet tall), and am just now able to eat solid food again. I don't have any trouble with chewing, but everything tastes so bad, it's hard to keep eating. Is there anything which is recommended to improve the chances of taste buds coming back? Thank you so much!
Teacher Karen DX: SCC of right maxillary alveolar ridge, 9/2010. Surgery 11/2010, removal of 4 teeth and gum. Surgery 11/2012, removal of 3 teeth and gum. IMRT 1/2013-2/2013 Surgery 1/2015 retromolar trigone resection; removal of 1 tooth and gum. Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection. Cetuximab based chemoradiation 64.8 Gy to resection bed. Surgery 6/19/2018 Right inferior maxillectomy, bilateral low palate resection | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Welcome Karen. There is more to taste than than just eating. It it involves memory, sight, hearing, scent, texture, and the 5 taste senses, sweet, sour, bitter, salt, and umami, so to get the most out of the taste experience, try as many aspects as possible should be utilized.
Radiation damages, sometimes permanently, the salivary glands, mainly the parotid gland that produces thin saliva. Saliva is intracal in taste, so in time, salivary function may return, and other glans may compensate for the parotid gland not producing enough. Stimulating saliva production, may improve taste, and there are ways to help this from medications, to drinking lemon water, water, chewing gum, smelling lemons, even looking at food, smelling it cook, increaes salivary flow.
Radiation, and chemo also damages nerves, and other fast acting cells, like taste buds. The tongue has syncopes that transmit taste impulses to the brain, so once this improves, so will taste. Taste buds typically have a 10-14 day life cycle, and continuously die off, and are replaced. Chemo and radiation just destroys them faster than they can be replaced. In addition, radiation continues working 6 weeks post treatment, so when chemo and radiation is stopped the body can start repairing itself.
Some people have more taste buds than others. You can see the taste buds by placing a small drop of blue food coloring on the tongue. The more taste buds you have, the more you can taste.
Hot foods, spicy, sharp texture, and acidic foods can dull the taste senses. I eat food warm, room temp or cold. Also, mucositus, thrush, dry mouth, certain medications, can hamper taste, as well as pain, ulcers disturb your eating.
I tried a buffet to see what foods I like best, which continuously changes, improves over time. There is also a link here from ChrustineB for "easy eating foods", and another post for various cookbooks for situations like ours.
I also use certain techniques to improve flavor of food, especially umami, which transcends into all other taste senses. If you ever ate something, and could not figure it out, it is probably had umami in it..anchovies, mushroom, soy sauce, hard cheese, etc. I make a umami powder to cook with, and may try to develop my own unique type to improve taste, if I ever get the energy.
I hope this helps.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Feb 2013 Posts: 53 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Feb 2013 Posts: 53 | Thank you Paul, for the useful information. I did not realize radiation continued working for six weeks post treatment. I will continue to try different foods to see what works best. Any other suggestions would be greatly appreciated. Thanks!
Teacher Karen DX: SCC of right maxillary alveolar ridge, 9/2010. Surgery 11/2010, removal of 4 teeth and gum. Surgery 11/2012, removal of 3 teeth and gum. IMRT 1/2013-2/2013 Surgery 1/2015 retromolar trigone resection; removal of 1 tooth and gum. Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection. Cetuximab based chemoradiation 64.8 Gy to resection bed. Surgery 6/19/2018 Right inferior maxillectomy, bilateral low palate resection | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Karen, sorry to read about what you've been through but glad you've come out the other side! Paul is one of the most knowledgeable and thoughtful people here and I always learn from his posts. He's given a wonderful primer on taste.
That said, everyone is different. My personal experience was that my sweet tooth returned more quickly than anything else. That is, it never actually went away. I found that the only things I was able to eat once I was able to eat solid food again - this was maybe 6 months after beginning RT - were completely bland and practically tasteless.
I made myself basic vegetable soup. Oatmeal. Blender stuff with milk, peanut butter, protein powder, yogurt, banana, etc. There are lists here on the forum I believe.
Shall I assume that you're getting your calories from nutritional drinks? I lived on those completely for 6 months and still make a meal of same at least once or twice a week.
Keep trying stuff and follow Paul's advice as much as you can. And keep coming back here with any and all questions.
Sending good thoughts your way.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | 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 | Karen, welcome to OCF! At this point you are very early in the recovery mode so your sense of taste still has lots of time to recover. It can take up to 2 full years for some people to completely bounce back from radiation treatments. During that time you will still need to push for at least 2500 calories every single day and at least 48 oz of water. Since you are so tiny, you may try to take in even more to help you recover. I would also suggest picking up some high protein whey powder. Its available at any drug store. It mixes easily in water or any liquid and will help you to heal faster. here is a list of easy to eat foods, it might help with some different food ideas which are easier to eat. East to Eat Foods List Best wishes with your continued recovery!! 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: Feb 2013 Posts: 53 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Feb 2013 Posts: 53 | Thank you Christine. So many of your posts have been very helpful on this forum. I am rather impatient about wanting my taste to return. I want to return to work (I teach autistic preschoolers), but I know I need my energy to be 100% before I can attempt that. Have there been any studies done which suggest certain vitamins or foods help to stimulate recovery of the taste buds? Thanks again.
Teacher Karen DX: SCC of right maxillary alveolar ridge, 9/2010. Surgery 11/2010, removal of 4 teeth and gum. Surgery 11/2012, removal of 3 teeth and gum. IMRT 1/2013-2/2013 Surgery 1/2015 retromolar trigone resection; removal of 1 tooth and gum. Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection. Cetuximab based chemoradiation 64.8 Gy to resection bed. Surgery 6/19/2018 Right inferior maxillectomy, bilateral low palate resection | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Zinc gluconate supplement may help. Check with dr.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 .. yes my naturopath suggested zinc as well. It is also a time thing. It simply takes time for your tastebuds to regenerate and heal. I am 22 months post radiation, and 25 post surgery. Most of my taste has returned and probably 50 % of my saliva. My sweet is still somewhat illusive. And fruit finally tastes almost normal (minus some of the sweet) Regardless, it simply takes time. I also had acupuncture that helped. But it doesn't work for everyone. best of luck and congrats on getting through it.
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: Feb 2013 Posts: 53 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Feb 2013 Posts: 53 | Thank you for your insights, David. Yes, I drank Scandi shakes during the toughest two weeks post radiation. I can't stomach Ensure or Boost, but found the Scandi shakes were a better consistency. I feel blessed to have had very little pain during and post radiation, so I guess I just need to keep plugging away until the taste returns  Thanks again.
Teacher Karen DX: SCC of right maxillary alveolar ridge, 9/2010. Surgery 11/2010, removal of 4 teeth and gum. Surgery 11/2012, removal of 3 teeth and gum. IMRT 1/2013-2/2013 Surgery 1/2015 retromolar trigone resection; removal of 1 tooth and gum. Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection. Cetuximab based chemoradiation 64.8 Gy to resection bed. Surgery 6/19/2018 Right inferior maxillectomy, bilateral low palate resection | | | | Joined: Feb 2013 Posts: 53 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Feb 2013 Posts: 53 | Thanks Cheryld and Paul. I have begun taking zinc chewable tablets and I see my radiologist tomorrow so will confirm that that is a good idea. Thanks!
Teacher Karen DX: SCC of right maxillary alveolar ridge, 9/2010. Surgery 11/2010, removal of 4 teeth and gum. Surgery 11/2012, removal of 3 teeth and gum. IMRT 1/2013-2/2013 Surgery 1/2015 retromolar trigone resection; removal of 1 tooth and gum. Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection. Cetuximab based chemoradiation 64.8 Gy to resection bed. Surgery 6/19/2018 Right inferior maxillectomy, bilateral low palate resection | | |
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