Why is salivary gland regeneration necessary? Patients undergoing radiation for oral cancer often have the salivary glands radiated, leading to a life of saliva deficiency. Saliva cleans the mouth and aids in digestion. The worst part about losing saliva is lack of sleep from continually awakening to moisten the mouth.
There is no medicine that replaces saliva in a successful way. Most oral cancer survivors say it’s the worst part about treatment. However, in June 2010 when I lectured in Athens Greece for HASCOCC (Hellenic Association of Supportive Care of the Oral Cavity in Cancer), I learned from Monique Stockman, RDH, PhD from the University Medical Center Groningen in Holland about their phenomenal saliva remedy for patients who have undergone radiation to the neck.
In Athens with my sister Abby (L) and daughter Elena (R)
With mice as their subject, they remove the stem cells from the salivary gland BEFORE treatment for cancer. The stem cells are replaced AFTER treatment concludes. What did they find? New salivary glands grew! They believe that just like the mice, the salivary glands in humans will grow back, too! I got chills up and down my spine thinking about how many survivors could have a better quality of life!
Just this week, an article came out about similar research on salivary gland regeneration in the U.S. I hope future oral cancer patients can benefit from this potential treatment.
Comments 69
It’s been almost 4 years since I underwent
Chemo and radiation for squamous cell carcinoma
of the upper palate.I was never told that my salivary
glands would be destroyed as a consequence.
Is there any hope of growing back these glands
I have been using a feeding tube ever since.
I’m thankful I’m alive, but the quality of my life
is terrible.can you advise me on what I can do?
I’ve given up with the doctors at Mass. Eye & Ear.
Thank you.
Author
Hi James, Did you see this post about Neil Arnold and how he eats by mouth? https://www.sixstepscreening.org/pain-the-most-common-symptom-of-oral-cancer/. We all have to figure out creative solutions to stay alive and live well….you are a perfect example and inspiration! Keep educating others about what you do to stay positive. It’s infectious!
James,
I’m a 64 year old man, 2.5 years out from 7 weeks of radiation & Erbitux chemo for squamous cell carcinoma of the right tonsil that moved to 2 lymph glands. I had the feeding tube during the treatment & for a few months after. Was depressed till I finally another way to get food. I now nourish with shakes made with 4 Ensures, blueberries, pineapple, strawberries, peaches, honey, a scrambled egg, an avocado, banana, peanut & almond butter, hummus, & yogurt. Tastes like vanilla shake. I drink about 45 oz’s a day. Blood work is better than it’s ever been. Lack of saliva makes it almost impossible to eat food. but the real issue that almost no one gets is the complete lack of joy for food anymore. I don’t even get hungry anymore, which is weird. It’s just fuel now, but if you can go to the shakes, you can get the damned tube out,. That alone will greatly improve your lifestyle. You’ll want to socialize again, go out, see friends, be you again.
The library is a great place to start for books on shakes & smoothies. Beats the hell out of that God- awful tube, & you’ll feel a lot less like a victim with it out. That’s important for your spirit. Your body was cured by the treatment, but you have to fix your head. No pill for that.
Let me know how it goes, James. Good Luck.
Author
Thanks for sharing….powerful line: “Your body was cured by the treatment, but you have to fix your head. No pill for that.” Check out the post I just made on that subject.
Your comments about the tube are spot on. Just awful. I had radiation the base of my tongue. The bit you swallow with. Lived on the PEG tube for a while then onto shakes and then fatty foods or melting cheese on everything. I hope things have improved since then for you. Dry throat while sleeping is my big issue. I have Oralube and tape my mouth shut with Micropore tape so I breath through my nose.
Wow! After reading that you elevated my mood. My salivary glands seem to be trying to come back but I still have cotton mouth, weird tastes of food that I loved and hard to differentiate between salt and sugar.
I drink about 1-2 quarts of water a day but I still feel cotton mouth most of the time.
I tried Biotene, but that is good for around a half an hour. Water is much better.
I welcome any suggestions!
Lou
Author
Hi Lou, How long ago did you finish radiation? Check out these resources for dry mouth: https://www.sixstepscreening.org/wp-content/uploads/2018/02/Dry-Mouth-Products-2018.pdf. Keep trying different ones until you find one that works.
I had IMRT in 2003. My xerostomia and hyposalivation is unbearable! I recently signed up for a study at the NIH, but didn’t qualify, because my parotids produced 0% stimulated and unstimulated. What else can I try? I’ve already tried Evoax, Saligen, and accupuncture.
Author
Hi Destiny,
Try some more products! There is a lot on the market. Here is a list:
Artificial Saliva- Carboxymethylcellulose or hydroxymethylcellulose solutions
(Mimics natural saliva, does not stimulate salivary gland production)
Entertainer’s Secret® (KLI Corp) spray
Glandosane®(Kenwood/Bradley) Spray
Moi-Stir® (Kingswood Labs) spray, swabs
Optimoist® (Colgate -Palmolive) spray
Saliva Substitute® (Roxane Labs) Liquid
Salivart® (Gevauer) preservative-free aerosol
Salix® (Scandinavian Natural health and beauty) Tablets
V.A Oralube® (Oral Dis.Res. Lab)sodium-free; liquid
Xero-Lube® Artificial Saliva (Scherer) sodium-free; spray
Mucopolysaccharide Solutions: spray
MouthKote® (Parnell) spray
Salivary Stimulants (sialogogues)
Natrol Dry Mouth Relief (Natrol and Amarillo Biosciences) lozenges
Salese (Nuvora) Lozenges
Xylimelts® (orahealth) time release oral disc
OraMoist® Quantum Health
Act Dry mouth Lozenges ( J&J)
Sugar-free chewing gums (various vendors)(aim for 100% xylitol)
Xylitol, (gums, candies, lozenges, sprays)(look for Spry, Ice chips, Zellies, Dr. Johns)
Amorphous Calcium Phosphate (ACP), (Enamelon tooth gel)
Recaldent (GC America, Cadbury) Toothpaste, gum
Salivary Enzyme Replacement
Biotene Products (GSK) Contains three primary salivary enzymes – Glucose Oxidase,
Lactoperoxidase, and Lysozyme, sodium laurel sulfate free. Toothpaste, mouthwash, gum
Oralbalance (GSK) gel
CankerX (Sunstar Butler) gel
Lozenges and Discs
(listed above in stimulants too)
Oramoist™ dry mouth treatment patch (Quantum Health)
Salese™ dry mouth lozenges (Nuvora)
Xylimelts™ moisturizer and salivary stimulant (OraHealth)
Prescription Salivary Stimulants
NeutraSal-Supersaturated Calcium Phosphate Rinse (OraPharma)
Pilocarpine: Stimulates residual salivary glands, solution, gel or tablet form (Salagen)
Cevimeline: Increases exocrine gland secretions, tablets (Evoxac)
Anathole trithione: Simulates exocrine gland secretions (Sialor)
Eva Grayzel,
Which of these products are for use when someone is sleeping? Which ones are over the counter and which are prescription?
It’s been almost 2 years since I underwent Chemo and radiation for squamous cell carcinoma of the upper palate.I was never told that my salivary glands would be completely destroyed as a consequence. Is there any hope of growing back these glands? It has been unbearable living without saliva. I’m thankful I’m alive, but the quality of my life is terrible. Can you offer any help at all please? Is there any options or solutions for me? The doctors have been no help.
Thank you. Greg
Author
Greg,
There is some research on regrowing salivary glands with stem cells after radiation, but that is way in the future. Right now, the only hope for comfort is with products and there are many on the market. Keep trying different ones until you find one that works. I will email you a complete and current list. Also, it would be helpful to connect with others in the same situation to learn how they cope. Would you like me to connect you with a few people I know? The Oral Cancer Foundation Patient Forum is another way to get advice. Eva
My radiation was completed 09/16. After effects are much worse than the cancer itself. But, I’m thankful I was cured. I talk as if i’ve had a stroke with my mouth constantly feeling drawn up. Dry mouth does not get better. Water is constantly with me. I don’t feel like I can kiss my wife decently.
At times I feel despair and just want to give up. Products last only a matter of minutes. Salegen helps very little. My dental problems are on the rise and I only have 2 exams left on my dental insurance. I fear loosing teeth. I buy trident gum with xylitol by the case and suck on sugarless candy. Lemon drops have been suggested but I fear further erosion of teeth by acid.
Do you know of any studies or trials seeking participants? Any ideas or solutions? Im ready to travel wherever to seek help.
ROY
Author
Roy, There is hope – don’t give up! Know that you are not alone with frustration due to lack of saliva. I will email you a list of products. Keep trying different products until you find one that works. Here is my oral hygiene regimen, thanks to Dr Ellie Phillips, I have come to find great benefit in starting with Closys to neutralize the acid in my mouth, then brush with Crest, (the old plain paste version with no additives). I follow that with my Waterpik. Then, I by rinse with Listerine Anticavity (Blue) also with no additives like Tartar Control or Whitening. Using a mouthwash with alcohol prevents growth of bacteria. I need to dilute it with water because it’s just too strong for my oral tissue. Then just before bed, I rinse with ACT to leave fluoride on my teeth. Phew – I know that sounds like a lot, but I get through it in reasonable amount of time. While rinsing, I clean up my countertop, tweeze a hair or fold a towel.
If I hear of any studies on people with dry mouth from radiation, I will let you know!
Hi Eva
Thank you for the information. Please keep me informed of any options or news. This is so difficult.
Greg
Hi,
My dad finished up chemo/radiation treatment in Sept 2017. He, like many comments listed, has no saliva from the radiation. He can’t sleep straight through the night due to stuffiness, which is also related to the radiation. He is discouraged, eating is still a job for him. Can you recommend products that might help? We have done the whole line of Biotene. Thank you, Ang.
Author
Angela, I just updated a comprehensive list of dry mouth products here: https://www.sixstepscreening.org/wp-content/uploads/2018/02/Dry-Mouth-Products-2018.pdf. Let me know which products work for you!
Still suffering from radiation-induced xerostomia.
Still ready to scream at the doctors who suggest “candies/gums”, because they have no idea what 0% from the parotids after 10 minutes of stimulation means or they don’t listen or they can’t comprehend the severity of the issue.
I’m checking into getting the xeros pump, because it can provide liquid at night. Has anyone else tried it?
Author
I sent you a direct email last time you wrote, but it looks like you never received. Have you seen this list: https://www.sixstepscreening.org/wp-content/uploads/2018/02/Dry-Mouth-Products-2018.pdf. I sleep with a a Camelbak (Either the flip-top spill-proof bottle, or even better, the one for skiers/hikers. It’s a backpack with a hose. You bite on the end to get the water.) Notice, there are prescriptions meds for producing saliva, too. I’ve never heard of the pump!
I am having trouble coping with the dry mouth. It’s horrible!!! I miss real food too!!! How do you cope? I need my quality of life back!!
Author
Where were you treated? How long was the delay in your diagnosis?
I can’t believe you have been doing this for 20 years! Omg! I don’t know if I can keep up with this struggle. I know how you feel.
Author
Betty, I got lucky. This year, I no longer sleep with a water bottle. My saliva has improved over time. Some doctors think the HyperBaric Oxygen therapy helped. However, I know too many people like you. Keep trying different products. Don’t give up. Look here: https://www.sixstepscreening.org/wp-content/uploads/2018/02/Dry-Mouth-Products-2018.pdf
What did you need hyperbaric oxygen therapy? I have read an article about this man in Australia getting Hyperbaric therapy for radiation improved dry mouth and he feels positive.
Author
I had HBOT for a split lip that didn’t heal. I had another series of treatments before implants in my radiated bone. I do feel that the treatments improved my saliva production. The docs didn’t expect that as a byproduct of treatment, but I would say the treatments helped.
Please try virgin coconut oil. Swish it for 5 to 10 minuites inside you mouth 3 times a day. My radiation oncologist suggested it to my husband after 36 exposures to radiation. It worked for him.
I due to have chemo and radiation therapy for tonsil squamous cell carcinoma and I’m considering not having the treatment due to losing my saliva – I just cannot imagine life like that. Add that to all the other horrific side effects!
Author
Julia,
Ultimately, it’s your choice. Even if you are in your 80’s, have no support network, live far from your the cancer center, don’t have loved ones (children and grandchildren) to live for, even then, having NO treatment at all for this disease, will be, nicely put, an unpleasant end. If you just do surgery, the results can be disfiguring.
Has your SCC been tested fo HPV? If it’s positive which is very likely, research shows that radiation and chemo is VERY effective. Survivors have many good years after treatment.
I had IMRT (Intensive modulated radiation therapy). It’s a targeted treatment. It’s the standard of care these days, and even more efficient and less damaging the when I had treatment 20 years ago. They were able to block my salivary gland on the opposite side and I produce saliva. I eat normally, taste normally (on one side), and produce saliva on one side, enough to feel normal in my mouth. Now, it didn’t happen right away. There is a recovery period. Everyone is different, some take longer, some take less time to resume a normal life. Know that most who endure this treatment, which isn’t easy, go on to live full lives and manage the side effects with different products and habits.
Life is bittersweet. You may decide to endure the effects of treatment in exchange for teaching all those who know you and love you about what it means to be a friend; what it means to be a part of a family; empower everyone with a positive attitude during challenging times….now that’s a lesson most don’t learn unless they go through something like this with someone they love. Beyond the treatment, there is so much learning, love, compassion, and life lessons to be gifted.
I will help you through it, along with other friends who have been through the same. We are a mighty group who feel the power of helping others as a way to make the difficult treatment worth enduring. So email me directly. Or call/text me. Know that you are not alone and most of us will tell you it’s so worth it to have more years of life on this earth.
An ‘attitude of gratitude’ is the way to get through it. Do you have enough blessings in your life to fuel your strength to get through it?
I am at about 90 days from radiation and chemo for the same squamos cell carcinoma listed by many above. I still have the same dry mouth and still eat from a PEG tube. The frustration is great with not being able to eat solid food for for almost 5 months now. This is quite discouraging but knowing that most take at least six months to recover still gives me hope.
Author
Patrick, It takes time. It’s really important to try to drink/chew so your muscles don’t forget how to do it. Swelling therapy is not uncommon for us survivors. Can you try to eat a little bit? Or drink?
here are loads of products on the market to help with dry mouth. Keep trying to products until you find one that works. There is a long list here: https://www.sixstepscreening.org/oral-cancer/resources-for-survivors/. I used to sleep with a camelbak spill-proof, flip-top water bottle, strategically placed between two pillows behind my head….now I don’t need it anymore. My saliva has increased over the years. But just on the one side where it wasn’t fully radiated. So when my mouth is dry, I roll over to my side with surgery side down, and I can feel drops of saliva come out from my working gland.
With dry mouth, it’s REALLY important to have good hygiene. Your saliva aids in digestion and cleaning your mouth. Do you use a Waterpik?
Hi Eva
I had radiation and Chemo (Cysplatin ? Got some nice tinnitus from that ) I had less radiation on the left side top saliva glanss so chewing gum helps. I found a product here in Australia that works well: Oralube by Orion. I have 3 pumps of it at night and tape my mouth shut with 2 inch 3M micropore tape so that I breath through my nose and I can now get 8 hours sleep most night. I only get about 1 hour if I go to sleep without it. You can even sip some water through the tape if you need to. I also find it important to breath through me nose during the day when I am awake. I had radiation on the base of my tongue and lymph glands on both sides. Thanks for the list of other products.
Author
Steve, I recently learned about taping the mouth to force nose breathing to help alleviate dry mouth. I’m impressed with whomever suggested that to you! A doctor? Or did you think of that on your own?
For many years, I slept with a spill-proof, tip-top water bottle strategically placed behind my pillow. I could drink without lifting my head using one hand. Fortunately, I no longer need to drink at night! Hyperbaric oxygen may have helped. I had 3 series over the years for various dental complications.
Can you email me the list of products? My uncle is dealing with this same issue.
Author
I’ll email it directly. Here is the link: https://www.sixstepscreening.org/wp-content/uploads/2018/02/Dry-Mouth-Products-2018.pdf
Hello..I am 69 days out from radiation from right tonsil cancer that spread to my right lower parotid gland ( 2 masses)…I started using a feeding tube 3 weeks into treatment…I had to stop chemo at week 4 out of 7 treatments, because I had near fatal reaction to it and was hospitalized, but I finished 35 radiation treatments..I am scheduled to have my follow up PETSCAN September 22, 2018 in a few weeks! ..I was taking in 3 Boost shakes with 20 grams protein per shake through a feeding tube..I lost 100 lbs…I was still having to get hydration IVs plus taking in Boost shakes..I had complications with my feeding tube, and when I went to see the Gastro doctor, I told her to take the tube out, and she told me if I couldn’t maintain liquid intake, she would have to put another feeding tube in…I thought, “no way am I having another feeding tube in!”..so it was sink or swim…each day, I started out taking one sip at a time..one swallow at a time! I would finish the whole shake, then I would rinse out the 8 oz. Shake bottle and fill it half way with water 4 oz. ! I did this 2 times a day starting out 1 in the morning, and 1 at evening plus 4 oz. Water with each shake..I did this for a week..week 2, I would sip 8 oz. Of shake..sip by sip..and 8 0z. Of water…I found it easier to drink from the shake bottle not a straw, and I would tuck my chin forward with each swallow…week 3 I got braver, and I tried to take 2 consecutive swallows..once I could do this, I gained confidence and began doing consecutive swallows..each week there was improvement, but I was determined to not get another feeding tube! Once I was taking in 3 8oz. shakes and 3 8 0z. Water, I was able to dc out of getting hydration IVs…I had my check up with my radiology oncologist about a month out from the last treatment..he instructed me to not be afraid to try yogurt, pudding, it was thick, but I began to make homemade soups! The first soup was a copy cat Zuppa Toscano..I wasn’t able to eat the potatoes, meat, or kale, but boy did I love the broth! Sip by sip…one sip at a time! I made different homemade soups..my taste buds responded better to homemade soups..the canned soups were so nasty! I made a Creamy Ham and Potato Soup..sip by sip..I made about 4 different homemade soups before I made a Corn Chowder…I ate each piece of potato! I would take small bites from 1 piece of potato and would chew eat and use the broth to swallow it down! Once I could do this, I began eating the corn! Chew and chew and use a spoonful of broth to get it down! Sip by sip..piece by piece..spoonful by spponful! And it works! I am 69 days out and I am eating EVERYTHING! I have trouble with chicken breast meat because it is dry, so I opted for thigh meat..and I used my processor to pulse steak and ate a little sub! Small portions is the key, I ate a pan fried hot dog and toasted the bun on each side with some veg. Oil in the pan..I can eat a whole hot dog with a chopped onion, mustard and relish and homemade potato salad..the potatoes are cooked soft..just bite of a small bite, chew,chew and use one sip of water to flush it down! .. I have to toast breads…I eat microwave scrambled eggs, because they are softer..I eat buttered toast without crust…I drink hot tea to get breakfast down with each bite..you have to do that because of dry mouth…you have to push yourself..dont be afraid..sip by sip and bite by bite..start out with broth and slowly graduate yourself..you can do it! I found my greatest help to be my electric tooth brush..I brush before every meal..I use a soft bristle brush for my top and bottom gums, roof of my mouth, and tongue..my taste buds have returned! But I am doing frequent mouthcare..every 2-3 hours, because I dont like the paste that builds up…I rinse and rinse and gargle and garfle until I feel my teeth and mouth are clear of paste..it helps with taste…and I am actually enjoying food again…it took awhile to get my brain to register hunger and an appetite, but keep trying! Dont give up..I have to live with dry mouth, I carry a water bottle EVERYWHERE! Even grocery shopping! But I am alive! I can live with that! And so can you! Small steps at a time! I hope this helps somebody to begin to live your life again! I also wear a C-PAP machine at night for sleep apnea..that was a challenge, but it lets me sleep 4 hours until all the water consumption alerts my bladder! Then I get up and sit in my recliner and look at my facebook a little, get tired and listen to music or Bible teaching on youtube and end up falling back to sleep with my earphones for a few more hours! Without my c-pap! Keep pushing and trying! Dont give up! Prayers for you all! We will get through this!
Author
What an inspiring story! When there is a will, you can accomplish more than imaginable. You may like the product Closys. It’s a mouth rinse that neutralizes the PH in your mouth. I prefer the standard variety (not the Silver or the one with additives). Thank you so much for sharing. I hope others will see this and know it’s possible!
My younger brother died last year October 2017 from cancer as well..he was never sick! He got symptoms, went the the hospital, and 11 days later died from cancer that had spread in his lungs, liver, brain…there have been 3 of us siblings within a few years of each other who had cancer, and my mom died years ago from Pancreatic cancer that had spread to all her major organs…it has been a terrible few years, but two of us are still here! Thank God!
Eva, my sister who is also a cancer survivor, gave me a journal at the beginning of my journey, and I didn’t journel in it until I hit recovery period…I wanted to be able to write a book at the end of it all, and at the time in the beginning, I had a title for it and everything, but the recovery period took it in a whole other direction, and I ended up writing 3 cookbooks for head and neck cancer patients! I am now checking into publishing a cookbook!
Author
Please get in touch with Carl about your cookbooks: Ginkgoone@aol.com
Author
I saw this article in the NYTimes and thought it could be useful for you publishing your book: https://www.nytimes.com/2018/12/10/smarter-living/how-to-finally-write-your-nonfiction-book.html
Eva…my husband had head and neck cancer in 2009…he survived when given only 15 % survival rate…however blessed we are. To have him with us he is leading a life of misery…no salivary gland activity at all..They also removed all his teeth…his tongue is shriveling up and is effecting his speech which effects his work…he is my love and I’m desperate to find some form of relief for him…he also has severe mucous and candida …please if there’s any knowledge you can share that could offer him some relief, I would be truly appreciated…all my best Sissy Grimsley
Author
Sissy, Just want to be sure you saw this resource list: https://www.sixstepscreening.org/wp-content/uploads/2018/02/Dry-Mouth-Products-2018.pdf. Keep trying different products until he finds one that works! Has your husband had a second opinion? Where do you live? You can email me privately: eva@sixstepscreening.org
Wow, i’m so glad I stumbled into this information site. I’m about 45 days from radiation chemo for HPV positive I was told I would lose my salivary gland on the left side and maybe the right side would come back. Dry mouth totally sucks. I have been using the Xylimelts from OraCoat through the day and especially when I’m sleeping which work pretty well but you have to keep replacing them you just stick them on your teeth. also I’ve been using Biotene which isn’t lasting as long as they say it does. Gum doesn’t work very well but I’m gonna keep trying it. I’m going to go try the hyperbaric & continue my acupuncture. I’m still waiting for my tongue to heal and one of the sores to go away in my throat. I don’t think I could tape my mouth closed but that is sure a interesting approach.
Certain things burn my tongue wine burns my mouth which is sad because I collect wine, I hope someday I can drink my red wine again.
For years I have lived to eat and it’s really frustrating because you can’t taste food but my daughter says that you have to eat to live. High ph of over 7.8 water works much better than lower ph, I found one water with a ph of 10 which got me through treatment and still helps. Seafood works great I can taste Seafood, not sure why yet, syrup on pancakes with lots of butter.
I am very interested to see if anybody has published a cookbook on foods and and neck cancer treatment.
Dr. Gave me a medication claiming it would stimulate saliva production but I haven’t tried it yet. I don’t like taking any more meds.
I have trays that I’m supposed to use every night for fluoride to go on my teeth. I too carry water everywhere.
Thanks to all for their comments, I’m going to try anything! Love this, thanks.
Author
Carl, Give yourself a little more time. I believe you will be able to enjoy your wine once again. Look into Closys mouth rinse to neutralize PH. Do you use Prevident toothpaste for the extra fluoride? A reviver told me he used to use Prevident but now buys CTx4 Gell 5000, because it’s $5 cheaper ($15/tube) and supposedly better. Also, do you use a Waterpik? Sleep with a Camelbak or some other easy way to drink water and not spill?
Keep up the constant effort to make life better!
Where can we find your cookbooks? They would be a good resource for all of us who are currently going through treatment or have been through treatment.
Author
I’ve sent Bridget a personal request to get more information. I’ll get back to y’all!
Hi guys . I am a 62 yr old male and am now 3.5 weeks post treatment. 33 radiation and 6 chemo for HPV p16 SCC. Nasty is as good as it gets. My front saliva glands have also been knocked out but I am noticing my big rear ones are getting better at providing. Chewing gum during the day. After reading a lot of these, I feel blessed. No feeding tube and back at work post 2 weeks. Until week 5, no matter how bland or metallic the water tasted, I ate and drank right the way through. Use your throat muscles or loose them! My taste buds are slowly coming back but I must admit I am a savoury man at the moment. As for sleeping with a dry mouth -it’s terrible. I bought a snoring strap that goes under my chin. The side straps saddle my ears and the Velcro allows for adjustment. It took a little while to get used to, but it keeps the mouth reasonably closed and I find myself waking up about 2-3 times a night which is a lot better than 6-7 . Also when going through the chemo/radiation, use the drugs. I found a good dose of liquid morphine before eating did the trick and the fentnyle patches were great. So don’t be afraid to dose up. It took me 3 days to quit the liquid morphine and 2 weeks to weed off the patches. I hope this helps others. All the best, Vinnie
Author
Vinnie, Thank you for sharing your story. Someone will read this and be comforted knowing they are not alone. I’m sure, as time passes, more and more people will be victimized by HPV+ cancer.
Hello Eva, I am currently working to get going on publishing my cookbook for cancer patients, and the thing I have to do now is to get pictures of my recipes! I regret that I didn’t think of it at the time I was making them! I could publush it without pictures, but that is no fun! Unfortunately, it will be a little while before it will come out…but I’m excited about it! I want to update my progress..I did have my follow up PETSCAN come back as showing no postive residual!, and last Friday I met with my Radiology Oncologist, and he did tell me, “I think you are on the other end of all this!” I thank and praise God for results…that quote that says, “You can’t see the forest for the trees” was true, because going through that experience you have to have courage and push through the fears and move forward no matter how bad it may seem, you always hope! I’m still hoping for my salava glands to kick in. My doctor told me he tried to save my glands, but we will see..I told my dictor,”I can live with dry mouth.” “I’m alive, I can live with that” I’m not out of the woods, but I AM! I will have to see my throat doctor every 3 months for 5 years, but I don’t feel that I’m “in the forest” anymore! There is a brighter side to all of this..have hope my friends..don’t give up! Ever! Look to the light…there are star lights in the dark…you are going to come out on the other side..I promise! Prayers and passion for all cancer victims!
Eva, thank you for your forum, and your lovely voice and for sharing your experience with us! You have big shoulders my friend! BIG!
I have been on this journey with you for two years. It all started with an Ear Ache! The ear ache turned out to be a cancerous growth inside my neck region, and that was pressuring my ear. The swollen lymph gland and other thick mass could not be explained until a CT Scan revealed the presence of a more Ominous Resident! There is where the adventure begin? What ensued was the engagement of my entire family, friends, minister, my God,, angels, saints, and fantastic medical practitioners to guide and support me and each other through this challenge. It is often said that Challenge and Opportunity are represented by the same Character in some Asian Scripts.
The will to survive and defeat the cancer was heavily shored up by my daughter’s unrelenting patience, research, insistence that I eat, where there was no appetite.
My next installment will contain some of the measures that she employed to spurn my appetite into action after the loss of Thirty Pounds following surgery and External Beam Radiation.
Author
Great to hear from you! What area of the world do you live in? I hope you continue your journey with a positive outlook which is most definitely leaving a legacy to the everyone who knows you about living life in gratitude.
Author
I can’t imagine going through oral cancer alone. You are lucky to have your daughter, your faith, and your fortitude! I hope to hear more good news about you.
I did it! I got through the treatment, 5 rounds of Cisplatin and 30 x rads. I do have SCC HPV-16 – Finished on the 21st sept, approx 9 weeks ago. I have all the usual side effects, tube was removed about four weeks after as I never used it because I was so scared I’d rely on it and loose my swallow.
I meditated and used hypnosis etc. I do have the dreaded dry mouth and yes I’m finding it hard but I’m glad I went through with treatment obviously!
I was engulfed with anxieties when first diagnosed and on reading all of the side effects.
Wow it’s been hard but wow it’ll be worth it when I find out I’m cured!
In fact I actually forgot I posted on here until I was searching for help for the dry mouth issue and saw my desperate post……..So I thought I’d reply and give you an update.
Author
Great news Julia! It’s great to know that meditation and hypnosis worked for you. With dry mouth, keep trying products until you find one that works for you.
Hi, I’m 9 months out of radiation and chemo for base of tongue cancer and my oncologist told me today that my saliva will never come back. Very depressing
Author
Jim, It’s human nature to focus on our losses. Losing the ability to produce saliva is a big loss, one which most people totally take for granted. first of all, know there are loads of products on the market to help. If one doesn’t work, keep trying until you find one that does. Here is a resource list: https://www.sixstepscreening.org/wp-content/uploads/2018/02/Dry-Mouth-Products-2018.pdf. It’s a human skill to focus on your gifts, a skill that needs constant exercise…So, what blessings can you tell me about?
My husband is 4 weeks out from 35 rounds of radiation and 2 rounds of chemo~cisplatin. He had squamous cell carsonoma. Base of tongue HPV positive.
He still has sore throat. How long can we expect that to last. He is swallowing ok but with pain. He had pain pills but does not seem to touch throat pain. Could this throat pain be related to dry mouth?
Author
Hi Debbie, Radiation to the neck is the hardest thing I ever went through in m life. But, it saved my life. It takes you close to unbearable, and then it’s over and hopefully, he will have years in return. The sore throat will last at least two weeks after treatment ends. It’s like the worst sore throat imaginable, but somehow one day at a time, he will get through it as did many other survivors and it becomes just a like a bad dream. He will forget how bad the pain was.
The best antidote is focussing on your blessings. It’s human nature to lament your your pain, your losses, and it’s a skill too focus on your gifts.
Hi Eva,
My sister has emailed me your blog. I have been reading the inspiring stories. I am 66yr old female. I have been combating SCC’s on my tongue for the last 18yrs. My surgeon has been with me all the way until this year when he retired. We still stay in contact.
One of your bloggers said she was deciding whether to have head and neck radiation treatment. 10 years ago, I did too! After an in-depth discussion with the Head/Neck surgeon about benefits and side effects, I decided NOT to have radiation treatment. For the next 10 years, I was closely monitored by my friendly local surgeon with Petscans and monthly appts. This year 2018 Feb, he surgically removed a small SCC from the base of my tongue. 4 mths later he removed a 2nd SCC from the top of my palate. I was forcibly told to accept radiation treatment.
I completed 6 weeks of radiation. Due to the positioning and sizes of the SCC, I did not require Chemo. I had a nasal feeding tube to ensured normal eating, swallowing and talking. I empathize with many of the comments about the side effects and withdrawing off the heavy opioid drugs which took me over 6 weeks after trying to go ‘cold turkey’.
I, too, struggle to see the ‘bright side’ although I had a very supportive partner, 4 daughters and my siblings, especially one sister. I had built up a team of professionals around me including an Acupunturist, Naturopath, GP, Maxifalicillo specialist and now a Psychologist. My friends and work colleagues were also trying to cheer me up. Dr’s recommended I retire as I would not be able to return to work for a year.
Now I am happier and counting my blessings. My main issue like everyone else is dealing with Dry mouth – lack of saliva… Like Bridget, I take it one step at a time or bite by bite. I had spoken to my Radiation oncologist who informed me they had completely knocked out my submandilibar and sublingual but my Parotid glands were not touched. I am now 14 weeks post radiation and hoping these will activate.
I am using a CPAP machine (sleep Apnea). This is a major problem post radiation with drying my mouth out instead of the humidifier assisting in moistening. The technician tinkered with it and now it is comfortable. I’m able to get some reasonable sleep. However, due to the amount of water and fluids I drink to assist in making my mouth comfortable, my bladder wakes me up. Water at first was not my friend and always made my mouth more dry and sore. Now I am able to drink it comfortably.
My radiation oncologist told me to drink more salty water to enable the glands to activate. I can not cry – the tear ducts and mucus glands in the nose have also dried out.
There is so much more I could say but I now look at how far I have come and how much I can share with family and friends and how much I owe to my daughters, sister and friends and my poor partner who is sharing my lows and highs.
I have sooooo much LOVE….
Eva, can you tell me out of the list of products that you have sent, what does NOT have peppermint or mint in them?
My mouth is ultra sensitive to peppermint and mint products…… I am in Australia (Albury New South Wales)
Author
You have it right! Focus on love to balance the feelings related to cancer and it’s side effects. It’s a skill that requires effort. So many can be inspired with the details of your story; thanks for sharing.
I don’t know what is available in Australia, but here are some suggestions:
Closys is the only product I know without a mint flavor. It neutralizes the PH in your mouth and I hear great things about the product and I use it myself: https://closys.com/our_products/?utm_source=google&utm_medium=cpc&utm_campaign=intent&gclid=Cj0KCQiAmafhBRDUARIsACOKERP-EC__3Pm3oKzVEk9wdk3vZ9E44bGS6kvk2n8YsxfYHOgrxtXU3DcaAmNIEALw_wcB
Anything with Xylitol will help. Try Xylitol gum and perhaps this mouthwash: https://www.xlear.com/store/spry-dental-defense/xylitol-mouth-wash.html
Try either of these 5x/day: https://www.neutrasal.com or https://forwardscience.com/salivamax
I had a tumor located in the Thyroid, had IRMT but no chemo, about 12 yrs ago when I was 70 yrs old. I don’t produce saliva and it causes a buildup of very thick mucus, which in turn causes choking when lying down, which is the cause of sleep apnea for me. Its not the dryness but the mucus which then causes me to urinate excessively at night. I use a CPAP machine with a humidifier which helps with the dryness but doesnt eliminate it. Anyone having excessive dryness should consider using a CPAP machine. Its like having a built in humidifier. I am also having trouble swallowing pills and sometimes food but there aren’t too many other choices but to keep trying. Thanks for all you’re doing.
Author
John, you are an inspiration! You are now 82, a twelve year survivor, and showing all the people who know you and love you about how to overcome challenges and live life with gratitude!
Have you heard of throat stretching? I have met a couple of survivors who could only swallow soft foods, but after the procedure, can swallow considerably larger portions. I’m sure the procedure is offered in the major cities around the country. Where do you live?
Thanks for recommending the CPAP machine. Have you tried a number of different dry mouth products? I wonder if you added Xylitol to the distilled water in the machine, would it help with the dryness? Worth a try!
I had to sleep upright during radiation treatments for the same reason you describe. We have one of those adjustable bed frames, so when I need a little elevation, I just push a button.
Wishing you many more years of health and finding solutions for the side effects of treatment.
Thanks for the reply. I realized I forgot to mention the other items in my regime. I have difficulty talking on occasions and difficulty swallowing, esp pills or capsules so I try to keep my throat and sinuses moist.
-I use a neti pot to moisten the sinuses during the day
– I found that Halls menthol drops work well for me. Several years ago they irritated my throat but now they’re ok. I use them a lot, esp when exercising
– I use a steam inhaler called MyPurMist that really works great to moisten from the mouth down into the lungs. It uses very little water and is self cleaning. This last feature is what makes it a keeper.
I’ve just started to try some of the products you’ve recommended so I’ll report on them in the future.
Finally, I’ve found a little relief (at least with sleeping through the night). I had a surgical treatment. Here it is an article about someone who tried it first:
https://www.indystar.com/story/life/diet-fitness/2015/01/03/saved-fat-woman-finds-relief-radiation/21231909/
Eva, Thank you for doing this blog, it has been very informative. I’m one of these people in the sense I had SCC HPV 16 at base of tongue. My last treatment for cisplatin was Aug 12 and the 34 th radiation on Aug 22, now it’s May 15th and wondering if my saliva and taste will ever come back. I just had my F/u Pet scan and go back to my Doctor ( an ENT) on the 21st and praying all is well. I’m hoping he can give me the best news. Sofar he said it’s gone from past CT scan and exams however human nature, it’s always in the back of our minds especially after another PET scan. I like many am still struggling with no saliva and no taste. I have to put pancake syrup in my oatmeal to taste a little maple flavor or three teaspoons of sugar in my tea or coffee. Some people or articles I’ve read say it could take well ones a year, now it’s about 8 months + since my treatments are over. I would love to stay in communication and even help in any way also from my experience. It was grueling but now the hard part is over and I am getting back to some of the things I love.
Author
Maryellen, glad to read your last sentence and how you are focussing on the positive and enjoying getting back to doing things you love. Everyone cancer is different, treatment effects people differently too. Over time, I hear taste returns, but for some it takes a couple of years. Think about when you break a bone or tear a tendon, it can literally be over a year until you don’t notice it any longer. Which city were you treated in?
Has anyone tried aloe water to help regenerate their salivary glands? Pros and cons? I have heard it tastes bad.
Author
Regenerate or stimulate? I can’t imagine it would do either. Let me know if you try it, or know someone who does and has some success.