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Symptoms and Diagnosis Jump to new posts
Re: Bump on Tongue Ssl Yesterday at 11:08 PM
Mine is also under my tongue in the back. It’s not hard and has not grown in over a year.
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Currently in Treatment Jump to new posts
Re: Chemo protocol and excessive saliva gmcraft Yesterday at 10:14 PM
My husband also had base of tongue cancer HPV+ and he received Cisplatin as well as seven weeks of radiation . Because John’s cancer was at the higher stage, he had 70 grays of radiation. It was a harsh and tough treatment. John developed DVT after the second dose of Cisplatin and did not get the third dose. We were reassured that it would not impact the outcome as the Cisplatin acts as a radio-sensitizer. He never got a Tracy although he had a feeding tube. Did your husband have surgery? My understanding was that his cancer was in a location not easily reached. The doctor actually joked about having to break his jaw and cutting out his tongue. I didn’t find it very funny, needless to say. Instead of excessive saliva, he had the typical dry mouth that patients who have radiation get, together with loss of taste. So, I can’t really answer your question about that. I hope this is a bit helpful for you although I know I haven’t answered all your questions.

My husband’s cancer was base of tongue, but it was not in the oral tongue. It’s in the oropharynx.
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Introduce yourself Jump to new posts
Re: New user - caregiver sandyseaweed 04-20-2021 04:28 PM
Everything is restricted right now because of Covid so there's only support for him in the waiting room with other patients. I'm not even allowed in the waiting room during his radiation or even be with him during his infusion frown So it's one reason why I came onto this site. I do know another survivor, but everyone is different and he didn't have all the side effects my husband is going through. Thanks for the advice!!
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Introduce yourself Jump to new posts
Re: Surgery tlc356 04-20-2021 12:46 PM
I have found that doctors, as they should, want to tell us about all the potential problems that may possibly happen. That doesn't mean they will happen. That said, I don't know what you should bring other than a smile.

I don't know if they said anything about RND (radical neck dissection), but if they perform one, be prepared for a neck scar.

Things will look better in a few weeks if my experience is anything to go on.
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Long-Term physical and QOL Issues related to treatment Jump to new posts
Spitting Saliva When Speaking StephenS 04-18-2021 10:50 AM
Although I’m happy to be alive 17 years after my initial diagnosis of oral cancer, I have experienced a host of long term side effects from treatment. Throughout these years I’ve been able to “get over” many insecurities and have learnt to cope with the others. What I’m finding most embarrassing —I cannot speak without spewing saliva everywhere. I experienced this problem prior to having all my teeth extracted however it’s severity has greatly increased since then. People move away from me when I am trying to engage in conversation, even my doctors. I can clean my tablet and phone screens, yet after a very short time using the phone on speaker, I can see a filthy, spot covered screen; and even my tablet. I don’t usually speak at my tablet, so I’m figuring the spray comes out even when just exhaling. Has anyone else experienced this, and if so please tell me how you handle this. Thanks.
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Introduce yourself Jump to new posts
Re: New user - tongue cancer - borderline radiation tlc356 04-17-2021 12:46 PM
Ray: When I was being advised about radiation, initially there was mention of a feeding tube and physical limitations (no work, sports etc.) which was more than I wanted. A different level with few restrictions was proposed that I went through with, so my advice is to understand the costs involved with your treatment. Also, remember that free advice is worth what you pay for it.
Also if your cancer was not from HPV, learn about the role even mild alcohol use plays in this issue. You'll fight this all your life. With very good care and great attention on your part, that should be a long time. Best of luck, Tom
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Oral Cancer Recurrence Jump to new posts
Re: Back again. 11 years later Mokie 04-16-2021 06:51 AM
So sorry to read about this situation. If the Zofran (Ondansetron) and other oral anti-nausea medications don’t seem to be working, maybe eating small spoons of crushed ice chips would give some relief. I’m not sure if they actually know why ice chips works for nausea, but on occasion it does give relief as long as it’s not contraindicated with what’s going on orally with him.
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Introduce yourself Jump to new posts
Re: Introduction tlc356 04-14-2021 12:24 PM
Garvin: Welcome. I recently had radiation on my lip and since a shield was placed inside the lip, my mouth was not involved. Therefore, I can't tell you much about when you can eat but I can tell you that for six weeks after treatment I experienced pain and discomfort. After that things got better so I will guess that you may be able to anticipate the same sort of ball park. My radiation ended in January and while reminders of it exist, they are tolerable.
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Currently in Treatment Jump to new posts
Re: Onset of mouth sores Paan 04-11-2021 07:49 AM
Hello Donvilla,most of problems with radiation side effects start after 10 days to 2 weeks,ask your Dr to give you magic mouthwash that will help you with pain and do warm water rinses with salt and soda you can find the appropriate mixing amount on this site do those like 10 times a day the more the better hope this helps
I started getting bad burns coconut oil helped me.
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Introduce yourself Jump to new posts
So Happy To Have Joined This Forum KathDE 04-10-2021 01:58 PM
Good Morning. My 84 year old mother had mandible surgery in January. I am eager to become more educated.
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Long-Term physical and QOL Issues related to treatment Jump to new posts
Lymphedema on right leg Meli 04-09-2021 08:57 PM
I have had swelling in my right leg, same side as cancer and neck dissection, for several years. Have had blood tests and X-rays and ultrasounds and physiotherapist check it all out with nothing showing up as a problem and so they suspect it’s Lymphedema. I’m going to see a specialist nurse massage therapist in a few weeks to get it assessed.

Has anyone had Lymphedema so far removed from their head and neck?

It causes swelling pain and discomfort in my foot, ankle and lower leg but has started causing pain in my knee and hip also.

Thanks Mel
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Symptoms and Diagnosis Jump to new posts
Re: Could new lump be lateral C2 process? Meli 04-09-2021 08:52 PM
Scan confirmed it was asymmetrical C2 spinous process plus scar tissue. No baddies, strange but great news.
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Eating, Speech, Swallowing, and Alternative Feeding Jump to new posts
Re: Best Prosthodontists for Palatal Obturators Teacher Karen 04-07-2021 04:10 PM
Thank you Connie for your reply! That is a good suggestion and I appreciate you sharing your experience. Hope all is well with your husband!
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Currently in Treatment Jump to new posts
Re: Chemo, nausea, energy gmcraft 04-07-2021 04:04 PM
I remember my husband had several courses of chemo. It was done at home and he took it in pill form. So, your experience is likely to repeat itself, but asking them for stronger anti emetics and take them before the queasiness starts is a good way to go.
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Introduce yourself Jump to new posts
Re: New caregiver Paan 04-05-2021 02:04 AM
Hello cinf, you have come to the great place here for support I got lot of info and courage from lot of posts from patients here,read as much as possible and ask any questions most likely someone will have answers or give you some directions,we are here to support you good luck.
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General Board Jump to new posts
Re: Two Years Out Nels 03-29-2021 10:06 PM

Congrats on making it through multiple long difficult treatments with such a positive attitude. Inspiring! I am nearly a year out from my surgery and about 9 months out from my last radiation treatment. Food and flavors get better constantly. I find something new about every couple weeks. For example, no way I could eat a grape at the height of my treatment. I grabbed one off the counter out of habit in my last week and quickly spit it out. It took a good 5 minutes to get that awful taste out. Now, I eat grapes again regularly, slowly, but regularly and they taste pretty good again. I can eat a cracker now! That was a mess the first time - took about half a glass of water to eat one cracker last fall.

Thanks for sharing your story. We persevere because we love and because we are loved. Stay safe and keep the faith.

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After Treatment Issues - immediate post treatment Jump to new posts
Re: Pain and blisters in mouth, when will it heal? gmcraft 03-29-2021 01:30 PM
Welcome to the forum. It sounds like you’re really bothered by the mouth sores. Unfortunately, they are a side effect of radiation and will take some time to heal — they will run their course. Have you been given some magic mouthwash by your doctor that you can use to numb the mouth pain. There are different formulations and it is on prescription so you need to speak to your doctor about it. I would suggest to search ‘mouth pain’ or ‘mouth sores’ on this forum, you will be able to read about how others have dealt with it.

As for how much the mouth pain hurts, different people have different pain tolerance and so you are unlikely to get a very precise answer that will reflect your experience.
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Medications, Treatment, Procedures Jump to new posts
Re: Surgery for Mandibulectomy after 22 years Robin A 03-24-2021 11:50 AM
Hi Maria, My husband had a scapula free flap performed in August 2020 for mandible reconstruction. The incision was surprisingly from his axilla to his belt line but healed well and immediate exercises helped with resuming full function of his arm and shoulder. Hope that helps.
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Introduce yourself Jump to new posts
Re: Hi Folks, Another Newbie Dizz_zzey 03-23-2021 07:09 PM
Welcome to the family. No question is a bad question
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Introduce yourself Jump to new posts
Re: New caregiver Dizz_zzey 03-23-2021 07:06 PM
As gmcraft said, swallowing exercises are the most effective way to maintain and strengthen a swallow. A good exercise is the effortful swallow. He needs to swallow (no liquid) but squeeze very hard with your tongue and throat muscles throughout the swallow.

Another exercise is to hold his breath, take a sip of water, swallow, and then cough hard. Do that 3 times in a row, 3 times a day. If he's not confident drinking, then he can do it without taking a sip, but he must do the rest (hold breath, swallow, cough)
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