@streetlite What virus did the doctor say it was? What has the oncologist said? Did either of them mention a yeast infection? It’s a very common infection when you’ve had chemo.
Today, you can start using a salt and soda mouth rinse several times a day. Mix 1/4 tsp salt with 1/4 tsp baking soda in warm water. Swish and rinse your mouth really well. Make it fresh every time. I used this and it made everything better. But DO ask your doctors about the white coating in your mouth just in case you need medicine
Will you let me know what the doctors say?
I had the feeding tube put in about 3 weeks into radiation, lo-dose chemo. The white coating on my tongue and upper palate stared about 5 weeks into radiation and very painful if something touched them. Doctor told me everything would disappear the day radiation stopped. I believed him. Now late February, feeding tube long removed and I'm still confined to eating soup, eggs and other soft foods. Is their no cure for this virus, no medicines in this day and age?
My husband had very painful whitish mouth ulcers after immunotherapy and surgery. They seemed to come on very quickly right after the surgery. He was being treated for thrush but there was no resolution. Finally put him on prednisone and some oral steroid "rinse and spit" solutions. They did a biopsy and found he had Lichen planus. This is not a common occurence. Did they culture or biopsy you sores? The dermatologist is the one who diagnosed this. We also made our dentist aware and she was helpful as well. I hope you get resolution as I know how difficult and painful my husband's ulcers were/are.
Thank you for your prompt, Becky. I have asked my doctors in Dec., after chemo and radiation what was going on. They said no worries it would disappear shortly. Wrote to my radiation doctor in Jan. because it seemed to be getting worse. He gave me a mouthwash name to buy online. Didn't work. Saw them both (chemo and rad docs) and neither of them had a solution except time. I will try your advice and I appreciate it.
By the way, I am being treated at a top hospital in Bangkok, Thailand. Originally from Philadelphia.
I had the feeding tube put in about 3 weeks into radiation, lo-dose chemo. The white coating on my tongue and upper palate stared about 5 weeks into radiation and very painful if something touched them. Doctor told me everything would disappear the day radiation stopped. I believed him. Now late February, feeding tube long removed and I'm still confined to eating soup, eggs and other soft foods. Is their no cure for this virus, no medicines in this day and age?
@streetlite What virus did the doctor say it was? What has the oncologist said? Did either of them mention a yeast infection? It’s a very common infection when you’ve had chemo.
Today, you can start using a salt and soda mouth rinse several times a day. Mix 1/4 tsp salt with 1/4 tsp baking soda in warm water. Swish and rinse your mouth really well. Make it fresh every time. I used this and it made everything better. But DO ask your doctors about the white coating in your mouth just in case you need medicine
Will you let me know what the doctors say?
Sore mouth and tongue after finishing radiation 3 weeks ago. 24 hours a day I feel a burning/numbness inside my mouth and especially on my tongue.
Today when I woke up my togue was covered in white.
Still feeding thru tube because everything is painful to put in my mouth.
Feels like a mouth full of chili peppers.
I had the feeding tube put in about 3 weeks into radiation, lo-dose chemo. The white coating on my tongue and upper palate stared about 5 weeks into radiation and very painful if something touched them. Doctor told me everything would disappear the day radiation stopped. I believed him. Now late February, feeding tube long removed and I'm still confined to eating soup, eggs and other soft foods. Is their no cure for this virus, no medicines in this day and age?
Hi! I had Hodgkins and I remember those burns! No joke and I’m so sorry he is going through all that pain. I used a cream called Silvadene and it was prescribed by my radiologist. The skin in my underarms basically just slid off and this was the ONLY thing that helped . ❤️
I am about to start the same treatment that you had. I see that you had this in May of 2022. I would love to hear your experience, the good and the bad.
Hi, I can tell you that I was one of the fortunate ones, and that I was able to force myself to continue eating, even though I have the blisters and pain in my throat in addition to the lack of taste. They do prescribe medication to numb the throat as well as pain, medication to try and assist in eating solid food. Because of this, I was able to avoid a feeding tube and only dropped 6 pounds. I was able to continue to eat sold food and had to endure some pain. Just part of the deal. U can of course blend you food or protein drinks to help. I had significant burns on my neck from the radiation and used a medicated soak, called Domeboro which you soak a sterile cloth in the solution and apply it to the area . In addition, I had seven rounds of chemotherapy high doses of cisplatin that I tolerated reasonably well. I was a little fatigued afterwards for a few days, but fortunately, no nausea or vomiting and no other side effects from the treatment. I don’t want to sugarcoat the experience,It was hell just know that and be prepared and lean on whatever support is needed. I am six months in remission and pray that it continues. The side effects that I’m still suffering is a dry mouth(not horrible) my lymph nodes swell so I use a machine daily to reduce the swelling which helps tremendously. I have to do a daily fluoride treatment because the radiation significantly damages the teeth. My hair has grown back where I was radiated however, I have no facial hair on my neck.(not a bad thing since my wife does not like a beard.😝)
I have been told that again because of the treatment the thyroid needs to be monitored as the treatment can lead to thyroid cancer. Overall, I can tell you at this point I am thriving and doing very. One thing that I might suggest is to not buy things in bulk because your taste do change I found that to be the case with Gatorade, that I would take to stay hydrated however, even though it didn’t have the familiar taste, it had an awful metallic taste, and I was like unable to continue to drink it. The same was true for some high protein drink, and I had to shop for some thing that I could stomach. I did everything that my doctors, nutritionist, therapist, and nurses requested of me, and I was very diligent in doing all the exercises and EVERTHING they asked I had complete trust and faith in what they told me and I would recommend that as difficult as it may be as times that you do the same. My personal belief is that had I not gone to the Mayo, I would not be writing to you today. I pray that your treatment goes as well as can be expected, and that your results are very good. Feel free to reach out and I will provide whatever information I can.
Connect
Like
Helpful
Hug
Google: Lichen Planus
Finally a name for the disease. Thank you.
My husband had very painful whitish mouth ulcers after immunotherapy and surgery. They seemed to come on very quickly right after the surgery. He was being treated for thrush but there was no resolution. Finally put him on prednisone and some oral steroid "rinse and spit" solutions. They did a biopsy and found he had Lichen planus. This is not a common occurence. Did they culture or biopsy you sores? The dermatologist is the one who diagnosed this. We also made our dentist aware and she was helpful as well. I hope you get resolution as I know how difficult and painful my husband's ulcers were/are.
Thank you for your prompt, Becky. I have asked my doctors in Dec., after chemo and radiation what was going on. They said no worries it would disappear shortly. Wrote to my radiation doctor in Jan. because it seemed to be getting worse. He gave me a mouthwash name to buy online. Didn't work. Saw them both (chemo and rad docs) and neither of them had a solution except time. I will try your advice and I appreciate it.
By the way, I am being treated at a top hospital in Bangkok, Thailand. Originally from Philadelphia.
-
Like -
Helpful -
Hug
1 Reaction@streetlite What virus did the doctor say it was? What has the oncologist said? Did either of them mention a yeast infection? It’s a very common infection when you’ve had chemo.
Today, you can start using a salt and soda mouth rinse several times a day. Mix 1/4 tsp salt with 1/4 tsp baking soda in warm water. Swish and rinse your mouth really well. Make it fresh every time. I used this and it made everything better. But DO ask your doctors about the white coating in your mouth just in case you need medicine
Will you let me know what the doctors say?
Is there a clinical name for the mouth virus?
I had the feeding tube put in about 3 weeks into radiation, lo-dose chemo. The white coating on my tongue and upper palate stared about 5 weeks into radiation and very painful if something touched them. Doctor told me everything would disappear the day radiation stopped. I believed him. Now late February, feeding tube long removed and I'm still confined to eating soup, eggs and other soft foods. Is their no cure for this virus, no medicines in this day and age?
Hi! I had Hodgkins and I remember those burns! No joke and I’m so sorry he is going through all that pain. I used a cream called Silvadene and it was prescribed by my radiologist. The skin in my underarms basically just slid off and this was the ONLY thing that helped . ❤️
-
Like -
Helpful -
Hug
2 ReactionsI used organic coconut oil on my chest and it worked wonders.
-
Like -
Helpful -
Hug
1 ReactionHi, I can tell you that I was one of the fortunate ones, and that I was able to force myself to continue eating, even though I have the blisters and pain in my throat in addition to the lack of taste. They do prescribe medication to numb the throat as well as pain, medication to try and assist in eating solid food. Because of this, I was able to avoid a feeding tube and only dropped 6 pounds. I was able to continue to eat sold food and had to endure some pain. Just part of the deal. U can of course blend you food or protein drinks to help. I had significant burns on my neck from the radiation and used a medicated soak, called Domeboro which you soak a sterile cloth in the solution and apply it to the area . In addition, I had seven rounds of chemotherapy high doses of cisplatin that I tolerated reasonably well. I was a little fatigued afterwards for a few days, but fortunately, no nausea or vomiting and no other side effects from the treatment. I don’t want to sugarcoat the experience,It was hell just know that and be prepared and lean on whatever support is needed. I am six months in remission and pray that it continues. The side effects that I’m still suffering is a dry mouth(not horrible) my lymph nodes swell so I use a machine daily to reduce the swelling which helps tremendously. I have to do a daily fluoride treatment because the radiation significantly damages the teeth. My hair has grown back where I was radiated however, I have no facial hair on my neck.(not a bad thing since my wife does not like a beard.😝)
I have been told that again because of the treatment the thyroid needs to be monitored as the treatment can lead to thyroid cancer. Overall, I can tell you at this point I am thriving and doing very. One thing that I might suggest is to not buy things in bulk because your taste do change I found that to be the case with Gatorade, that I would take to stay hydrated however, even though it didn’t have the familiar taste, it had an awful metallic taste, and I was like unable to continue to drink it. The same was true for some high protein drink, and I had to shop for some thing that I could stomach. I did everything that my doctors, nutritionist, therapist, and nurses requested of me, and I was very diligent in doing all the exercises and EVERTHING they asked I had complete trust and faith in what they told me and I would recommend that as difficult as it may be as times that you do the same. My personal belief is that had I not gone to the Mayo, I would not be writing to you today. I pray that your treatment goes as well as can be expected, and that your results are very good. Feel free to reach out and I will provide whatever information I can.
-
Like -
Helpful -
Hug
1 Reaction