The Oral Cancer Foundation Support Forum

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After Treatment Issues - immediate post treatment
10 hours ago
he has taken prilosec and similar stuff for over 20 yrs. He did admit that a lot of his problem is that he eats and then lays down. He has done that for over 20 yrs too. I'm supposed to pick up some patches for the nausea. They suggested he use the numbing stuff and/or Tylenol for the pain of swallowing since he won't take pain meds prescribed and try to start swallowing more than water.

Dec 18th is his PET scan. Dec 20th is the follow up with the oncologist and radiologist. I've got to call to find out when the appt with ENT is scheduled.

Other than nutrition, there are no other plans in place other than follow up every so many months.
2 20 Read More
Alternate feeding solutions, PEG
Yesterday at 01:42 PM
Sorry for your loss, Snowflake. I gave the formula to a local hospice. They were happy to take it.
3 38 Read More
Introduce yourself
11-14-2018 11:01 PM
So glad to hear this Rayster! You sound more positive and in control now too. Radiation treatment will bring it's own set of difficulties so come back for advice and encouragement. Christine will tell you to eat all your favorite foods now, pack it in! She will also tell you to pack in the calories while in treatment and how to do it. Hang in there, you're doing great!
20 1,070 Read More
Symptoms and Diagnosis
11-14-2018 04:36 AM
Only a biopsy will tell the doc exactly what the tumor is made up of. Taking a tiny sample of tissue directly from the tumor will give much more info than any kind of scan which is pretty much an enhanced photo.

Since Im not a medical professional, my understanding is very limited about all the different scans. From what I know, a CT is very quick pic and works best for bones while MRIs are best for muscles (soft tissue). MRIs take much longer (around 45-50 minutes) than CTs and may have contrast (dye) added for even greater clarity.

Hopefully whatever you have going on is not cancerous! Please let us know how you make out. Good luck!!!
12 255 Read More
Medications, Treatment, Procedures
11-14-2018 04:13 AM
thank you. I guess some realty might hit the fan. I don't know if he messed up his health with 3 months of starvation or not. It's just scary.
2 34 Read More
Symptoms and Diagnosis
11-14-2018 03:39 AM
I would ask your doctor for a biopsy especially if he continually tells you to "watch it" for any changes. I found that to be one of the hardest things my doc could ask me to do because then I was constantly feeling it and looking in mirrors, etc. To me it changed every time my eyes blinked! I was not one of those "be sensible and watch for any changes" type people. Once explaining this to my doctor I was given biopsies whenever I found a lump. Three out of four times I had a recurrence. I'm now recuperating from my third recurrence - and I will recuperate!

Never walk away from your doctor appointment wishing he/she would have done something - always ask them to do it...
1 46 Read More
Introduce yourself
11-12-2018 05:54 PM
ERK, no apologies needed! We do the best we can with the info given. Sometimes we dont understand complex things due to not working in the medical field.

Oral cancer (OC) patients are often depressed. This can even spread over to their caregivers as well. If at all possible, ask the doc if there is anyone your father can speak to there about his depression. He may need to take some sort of meds to manage his depression or anxiety. Its nothing to be ashamed of... most OC patients go thru this. This is important!!! Without getting help, your father may have this hanging around for a long time. Finding someone who talks to cancer patients will definitely help him to better understand what being a cancer survivor is and all those feelings are perfectly normal. Some have compared going thru OC to PTSD. One excellent thing about OCF is finding yourself among those who have been thru similar things with OC and have successfully beat it. Being here to talk about everything helps others who are alone and afraid, just having someone who ":gets it"... REALLY gets it goes a very long way in helping the patient to better accept everything.

Just remember when asking questions... Im very sorry but our site is made up of regular people just like you. We do not have medical degrees, years of medical education or clinical patient experience. Our replies come from living thru different experiences as patients or caregivers. That said, we may not be able to always answer your detailed medical questions. Not only this wouldnt be fair to you or your father if we would try guessing what the doctor means by writing certain things. Best to keep a journal with running log of questions to ask the doc on the next visit unless yoru fathers health changes and he needs to go in sooner. Ofter after finishing rads, patients will feel abandoned when they are used to seeing their medical team daily to not seeing them for weeks. Dont worry! Those docs still are on your fathers case so dont be afraid to call and ask questions or take him back for a check up if he isnt doing very well. In case this hasnt been explained yet ... the first 2-3 weeks post rads are the absolute hardest of this entire thing. Radiation is cumulative and continues working well after treatments have ended. This is why the first 2-3 weeks post rads patients continue to get worse before one day they wake up feeling only slightly less crappy which we refer to as "crawling out of the tunnel". Its when they have finally discovered they really are making progress, very slow progress but still they have made some improvements.

Intake MUST be increased or your father will struggle far more than he should. It very quickly turns into a very bad cycle of not eating due to it being difficult and having no appetite, not making progress and constantly playing catch up. Eventually when patients are not taking in enough to maintain their current situation they will become malnourished and dehydrated making an imminent hospitalization almost a certainty. Ive been down that road myself and felt so horrible I thought I was actually dying and was in the first stages of my body shutting down. I was not in good shape but not dying, just feeling terrible from not taking in enough. Every single day, your father must take in at least 2500 calories and 48-64 oz of water. If he is still losing weight when taking in that much then he will need to increase it to 3000 calories or even more., The more he can do the easier this entire thing will be for him. Its NOT easy to eat when you have lost your sense of taste and are having the side effects of rads like sore throat, sores in the mouth, no appetite, etc. But the patient MUST overcome those things and push to eat. If they wont or cant then a feeding tube is often the only option to get nutrition. When patients finish rads, they usually do feel pretty lousy. If they've lost a considerable amount of weight, that in itself tells everything... their intake is much too low and must turn around right away. A nasal tube may be the easiest for your father as its more of a temporary thing. Most patients will begin having their sense of taste of a few things come and go after about a month post rads. This can further cause depression when patients think they're finally making progress with being able to taste something and it tastes as it should. But then after a couple bites their sense of taste is back to what it had been... everything tasting burnt or like cardboard or charcoal.

As far as bloodwork, Im sorry but I do not know much info about that. One thing Ive noticed in almost all OC patients is their white counts (needed to fight infection) as are the red counts usually very low where some (myself included) have had to get procrit shots to help boost the patients blood counts back up. Those shots can come with side effects too.

As far as a path report, we may not always be able to interpret it correctly without having medical backgrounds. To me it appears your father may need to have further surgery to remove lymph nodes or maybe it means that he had 2 out of 24 removed that were cancerous? Im very sorry but Im not able to guess what these things are supposed to means. As part of my follow up 9 years post cancer, twice a year I still get bloodwork (checking my thyroid levels) and chest xray (to monitor "a spot" on my lung. For me the "spot" has not changed in over 6 years so it isnt anything I worry about. In fact I rarely remember I have it.

Hang in there!!!
3 194 Read More
After Treatment Issues - immediate post treatment
11-11-2018 10:23 PM

I don't think anyone in these Forums would pass judgement on you. It sounds like you've been going through a lot and no one else knows how bad it is because we're not the ones living it.

Hopefully, once he hits rock bottom, he'll start listening to you, his doctors, etc.

Please keep posting....
7 166 Read More
Eating, Speech, Swallowing, and Alternative Feeding
11-11-2018 09:59 PM
Hi Deb,

When did you have the tube placed? I've had mine since Feb 2018 and was told it needs to be replaced every 3 months (which I do religiously). I've had problems with nausea (from the chemo) so I take anti-nausea pills every morning and every afternoon to keep it at bay. I've also had problems with granulation (tissue and blood vessels that form around the feeding tube) which is extremely painful. The only way to get rid of it once it appears is to use silver nitrate (prescription) which is also extremely painful but once it calms down it does get rid of the granulation. Keeping the area dry around the tube combats the granulation. If movement of the tube bothers you, have you tried taping the tube to your body so it doesn't move (swing back and forth while you walk, etc)? That works for me.

I hope this helps you!

3 80 Read More
Long-Term physical and QOL Issues related to treatment
11-11-2018 07:02 PM
Yes, they called it as 'bite guard prosthesis', the one with teeth. The doctor said that it is to better align the jaw and it will not help in biting or speech 🤔
5 96 Read More
General Board
11-11-2018 01:15 PM

If anyone has not taken a few minutes to take this survey, PLEASE do. Its very simple and only takes a few minutes. Caregivers are able to participate as well. This survey is not limited to US residents. Anyone in any other country is able to take part in this survey. The only limitation is they must speak, read and write in English.

PER BRIAN... An important group is reaching out to OCF asking us to help them better understand the patient perspective on the process we all endure. This is a group which are the primary surgical team doctors in our treatment. In an endeavor to help them better interact with their patient populations and improve patient issues that may be discovered in a survey. This team is asking members of our forum and also in the OCF social media circles, to take their a survey which will help future patients by their doctors understanding much more of what patients endure after going thru OC and treatments for it.

If you have not yet taken the survey, please take a few minutes to help us to help those who will be diagnosed in the future have better medical care and understanding. Your input really is that important and is going directly to the right people who work with patients every day. At OCF we rarely ask anything from our patients/survivors or caregivers. This survey is important!!! Several OCF staff have spent hours helping to make the survey as easy as possible while still getting all the points in. Sadly there was an embarrassingly low number of participants which is why Im bringing this back up to the top. PLEASE help us to help others by providing your anonymous input.


*** Its very simple to participate! ***** . Send a brief email to ... with a something like....
[ "I found this survey on The Oral Cancer Foundations message board and as a survivor (patient or caregiver) Id like to participate in your oral cancer survey"

6 2,467 Read More
After Treatment Issues - immediate post treatment
11-10-2018 01:23 AM
Hi Michelle,

I currently have a feeding tube (stomach) and an open trach (stoma) and I'm able to shower without any issues. I do need to keep the stoma covered to avoid water getting inside (which causes you to cough since it's going into your lungs) but that's not too difficult to do - especially if they give you the "visor" that is used to help keep water out. My G tube only needs to be dried very well or you end up with granulation - which you need silver nitrate to get rid of (owe!).

I hope this helps somewhat...

2 98 Read More
Symptoms and Diagnosis
11-08-2018 04:50 PM
NOT a doctor here, but from the number of times this question has popped up just since I've been a member, I'd say yes, it is very common for it to reappear. You are absolutely doing the right thing by getting it checked, though. Peace of mind is worth everything. ((hugs)) and wishing the best possible news for you.
1 129 Read More
Medications, Treatment, Procedures
11-08-2018 03:54 AM
That is so helpful - thanks Paul B!!
6 323 Read More
Introduce yourself
11-07-2018 09:56 PM
I see you’re from Toronto, so am I. My husband was treated at Princess Margaret Hospital.

I think it’s a positive step to have an appointment to talk to your doctor about the new spot. It’s true that radiation has side effects, however, it depends on the dosage you are getting. So, if radiation is ever suggested, do ask the doctors about how many grays (unit of radiation) you will be getting and what the possible side effects are. They should be able to tell you. If you are worried about the radiation getting too close to your eyes, I can tell you that the radiation is very precise. In fact, they do a simulation session prior to radiation starting to check that it hits the spots it is supposed to and no more. So, they won’t hit your eyes by mistake.

Another point I would like to bring up is maybe you can ask your doctor next week when you see them if you can transfer to Princess Margaret Hospital — that is, if you can travel to PMH easily or treatment and the transfer is something you want. The reason i’m suggesting this is that PMH seems to have a larger Head and Neck Cancer Department with top notch surgeons and doctors/researchers. I am, however, by no means saying that Sunnybrook is less good, it has a very good reputation as well. We chose to go to PMH when my husband was diagnosed because he was diagnosed by doctors at Mount Sinai Hospital and he was automatically in line for treatment there. Of course, I don’t even know if our medical system allows you to transfer to PMH even if you prefer going there.

The other possibility is to find out from your doctors at Sunnybrook if they will let you do a consultation with the doctors at PMH, or if they themselves will consult with the doctors at PMH. Who knows, maybe there is someone at PMH who has seen this cancer before and knows what to do with it.

All this you can find out by talking to your doctors at Sunnybrook. I am all for patients being proactive and advocate on their own behalf and your case, it seems to me, is one of those where you can benefit by talking to the doctors at length. Good luck and do keep us posted about your treatment so that we can all learn more about this rare cancer.
3 214 Read More
Introduce yourself
11-07-2018 01:19 PM
I can't help with the radiation part of your question but if you need the name of a Boston area dentist who did a great job for me with removable dentures (he does permanent implants too), let me know.
I was told by Dana Farber not to do implants due to the lower jaw/gum bone loss and the need to be able to inspect the gums. My regular dentist at first said he could help but was thrown completely off by my visibly altered jaw/gum, and flunked.

I located a dentist who was highly experienced with dentures and who worked closely with the dental lab to build a denture that really works well for me. He anticipated that they needed more information than a standard impression of my mouth so he also sent them pictures to help them understand. He anticipated another potential problem that would have made the denture work poorly and engineered a correction that solves it. If you need the contact information, let me know.
5 284 Read More
Caregiver / Co-Survivor Forum
11-06-2018 12:58 AM
So very sorry. That surely is a shock. ((hugs)) and prayers.
12 779 Read More
Oral Cancer Recurrence
11-05-2018 04:47 PM

Surgery in June went well and the spot was actually a bit of fungus called histoplasmosis. Since I don't have an active infection and my immune system is fine, they didn't want to do any treatment. So.. yay?! Grateful for the result but it was a weird one. They asked if I had been in any caves because apparently that's where this stuff grows which I have not been in any. But I have traveled a lot so it could be from a number of places.
I've got a follow up PET this Friday. Hope everything is still clear. It will actually be exactly 2.5yrs on Friday since I finished treatment.
Thanks for the support everyone
4 2,294 Read More
Caregiver / Co-Survivor Forum
11-04-2018 10:12 PM
oh my Valerie! I completely get it.

I talked to his oldest son today for 3 hours (he's 31 yrs old). We struggle with how much do you help a person who just attacks you when you are trying to help. My conscience guides me to put up with it and help him but you can only be beaten down so many times. I spend a lot of time with friends and at the coffee shop just for a break.

Someone at church who lost her husband to cancer and now has a SonIL with cancer for the second time talked with me and said she wonders if it's a bit of a man thing as both of those men in her life did/do the same thing. I don't like to put men or women in a category but often we do handle things differently in a crisis.

The thing is, husband is attacking the beloved son now too. We have no answers or direction and when I walk away for a few days, he ends up so sick I have to drive him to the ER. Hugs to you girl....we aren't physically suffering but emotionally being taken down. Cancer sucks.

I've told him that pride is going to kill him before the cancer does.
2 196 Read More
Introduce yourself
11-04-2018 03:06 PM
I'm Suzi, age 57 in Houston with a 2 year history of mouth sores. I assumed it was due to taking methotrexate for my Rheumatoid Arthritis, since I've been on and off that for roughly 20 years. I seemed to get more sores after each dental visit (complete upper and lower dentures in 2017) despite taking foluc acid with my mtx every week. I also contracted both herpes and HPV back in my teens when I wasn't quite so careful. My rheumatologist took me off the methotrexate back in June due to a pretty extreme number of sores in my mouth and GP put me on Valtrex, a dental paste and troches to dissolve orally 5 times a day.
At that time she noticed a lesson under my tongue, which I chalked up to being just another sore even though she told me to get it checked by an ENT and warned me it probably needed to be biopsied. Did I listen? Nope. Now I've found 2 more raised areas in my mouth and another whitish-patch which I wouldn't really call a sore. Went back on the Valtrex a week ago and no change. I'm back on the methotrexate, have added leucovorin. So, guess I'll be finding an ENT this week to find out if something is actually growing in there. And yes, I've been smoking for 40 years so I'm not very hopeful. Would be my luck I spend 20k on new teeth and end up with cancer. So glad I found this group and keeping my fingers crossed. That's my introduction!
0 140 Read More
Introduce yourself
11-03-2018 11:56 PM
Welcome to OCFm Donc! Sorry you have a need for our group but you will find info and support from other members who have gone thru this already. We'll do our best to help get your thru your recovery. The worst of everything is already behind you. Unfortunately as you've found out, recovery can take a LONG time!!! Recovery is so much harder than most patients think, full of ups and downs. Its full ofSo much of your journey depends on your intake. The better you do with intake, the easier things will be for you. Every day your intake goal should be at least 2500 calories and 48-64 oz of water. Taking in more certainly cant hurt, even 4000 or more right now is not too much. After everything you have been thru your body is currently using up an incredibly advanced amount of calories trying to repair itself after your cancer diagnosis.

Read thru posts and you will pick up tons of tips and helpful info. Hang in there and soon you will be almost back to normal or have found your new normal.

Best wishes!!!
1 243 Read More
Insurance and Financial Forum
11-03-2018 12:50 AM
i estimated $500,000 to a million before we got started. My dad thought I was crazy but then he's 83 yrs old and been to the doctor three times in his life...2 were accidents. I don't have any hotel stays but 35 days of driving 2 hours just for radiation. I don't think we will qualify to take medical expenses on our taxes because of the deductible.
10 860 Read More
Introduce yourself
11-02-2018 11:11 PM
Great that you’ve got good news.
18 1,159 Read More
Introduce yourself
11-01-2018 04:25 PM
My goodness, Paul! You sue have had a run of bad luck. You’re right to blame the neuropathy and hypotension on the cancer treatments. John, despite not having as many different treatments as you, had both hypotension and neuropathy, as well as hearing loss. Head and neck cancer is brutal.

I hope you’ll feel better soon.
10 867 Read More
Currently in Treatment
10-31-2018 10:50 AM
Sounds like your docs are taking very good care of you with the hydration and getting the PEG tube so quickly. Thats really great having the feeding tube done so quickly!!! You definitely need it!. Im sure you can tell the difference in how you feel losing so much weight so quickly. Its unbelievable how fast it can just melt right off you when going thru rads. Its not just water weight coming off, its muscle as well which can make you feel week and have much less stamina.

Theres many here who have gotten a PEG tube after their treatments began. Its just another tool to get us thru rads as easy as possible. You may be expecting to have outpatient surgery to place the PEG tube. Its pretty common for patients to stay at least one, sometimes 2 nights in the hospital. I ended up staying in too. You may be in some pain after the surgery so if you are hurting dont hesitate to ask about being admitted. Often patients are not given enough follow up care or support after getting their feeding tube, ask about having a visiting nurse to stop a few times a week to help you with learning how to use your feeding tube. Being new to the feeding tube you really will need a hand. You should be all set up to get your feeding tube supplies (drain sponges, syringes, paper tape and thru a medical supply company. The nurse will come out the day you first go home from the hospital and help you learn how to set everything up to do a feeding. That nurse will only be there once at your first dayThe hospital or your doc will get you set up with formula and all the accessories to go with the feeding tube. Make sure you get a kangaroo joey pump!!! Its not always offered so you may have to ask about it. By having the pump, you will be able to do feedings while you sleep or watch tv. Just make sure you are propped up with at least 2 pillows or in a recliner.

Heres a few more random tidbits about have a feeding tube...

-After a feeding you should sit still for at least 30 minutes. Ive found if you can sit still for an hour, the extra half hour will help your stomach to settle.

-Theres many prescription formulas out there. If you are nauseous or having trouble adjusting to the liquid diet you may need a different formula. I found Zofran helped tremendously with the stomach issues.

-The most common feeding tube problems can be easily fixed. If you are using the feeding pump, try slowing down the rate of delivery first. Anti-nausea meds help too. After trying these suggestions, if your still having trouble tolerating the formula you may need to switch to another formula.

-After feedings, flush the tube with at least 2 oz of water. This is an easy way to up your daily water intake.

Any questions or concerns just ask. Theres lots of feeding tube users here that can help you.

Best wishes!!!
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