Oral Cancer

2

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  • Wade1
    Wade1 Member Posts: 30 Member


    I had my appointment last Wednesday at my Oral surgeon. At my consult before Wednesday he asked if I wanted to be numbed or put under. He asks because most of my doctors know I try to do a lot of things with the least amount of medications. I chose numbing. He said that would work because my teeth shouldn't be in there that well. I chose incorrectly. Once he Started cutting, yanking and drilling he told me that the teeth where very healthy and in my gums and jaw bone securely. He said he didn't expect that.

    After 3 he stopped and said my teeth where to tough to remove so he couldn't get me numb enough. He told me to come in the next morning (Last Thursday) and he'd put me completely under and remove the rest.

    Wednesday he told me my radiation oncologist had called and wanted most of the other side out. My oral surgeon said he didn't think some needed out because they could withstand radiation.

    They put me under Thursday and removed 9 more so 12 in total. He left my front teeth and some upper and lower on the non tumor side to help chew. But I lost a few on that side plus my 4 molars.

    I've been pretty sore the past couple days. I haven't had to take a percocet yet. My prescription Ibuprofen has kept it tolerable. Not saying I didn't come close to taking Percocet but I've managed without so far.

    So I know after multiple teeth extraction you have to wait 14-21 days before Radiation treatment. Plus I have to wait a little while after multiple teeth extraction for my baseline hearing test. Then I'll have another consultation with my radiation oncologist. I would guess it's to make my mask.

    I don't think I'll see Radiation or Chemo treatment till the new Year since I'll be about ready for it during the holidays.

    It least I feel like I'm moving forward though with getting everything done that my radiation oncologist and my Chemo oncologist/Hematologist want done before treatment.

    Take care everyone. My prayers are with you all.

    Wade

  • Wade1
    Wade1 Member Posts: 30 Member
    edited December 2023 #23

    I got my nausea medicine to have when I start my treatments of radiation and chemo the week after Christmas.

    One is Zofran, well it the generic ondansetron. Thing is, my insurance company will only give me 9 pills. That lasts 3 days. I was reading though how that restriction insurance companies put on ondansetron is not good for patients because there's none left for 4 days in case of breakthrough nausea from radiation or chemo therapy.

    Has anyone found a work around for this?

    8 mg's is the highest dose I think. So in the beginning at least I can't cut them in half down to 4 mg's to last longer because I need to take 8 mgs every 8 hours.

    Tomorrow I go for my my radiation simulation where they'll make my mask and whatever else. In the afternoon I have my baseline hearing test.

    Thank you,

    Wade

  • Swoosh13
    Swoosh13 Member Posts: 84 Member

    Hi Wade,

    My husband’s radiation/chemo treatments were from 9/5 through 10/24. He had a 30 day supply (30 pills) of 8 mg tabs, said to take every 8 hrs for breakthrough nausea. He did not really need them every day. He also didn’t have much breakthrough nausea from the chemo so I guess that’s why. Also because Ondansatron is a very inexpensive generic drug, I don’t see why your insurance company would restrict it. I’d suggest going back to your dr who should be able to get you more.

    Our dr also prescribed Dexamethasone (a steroid) on just Day 1 of chemo and for just the next 3 days after. He had 7 weekly Cisplatin so again Dexamethasone for 4 days every week. Finally one more drug for nausea if/as needed … Olanzapine. One per day, usually around 8:00 pm as it could make you drowsy.

    All of these drugs (I think) were generic, and very inexpensive for us. He even ended up getting one refill (30 days) on his Ondansatron, but he never finished it.

    His doctors and nurses kept him relatively nausea free. They also told us they hung a bag of anti-nausea med (like Ermed or something) right b/4 every chemo infusion to last for 2 days.

    Hope this helps, I’d suggest asking the dr who prescribed your Odansatron for a larger supply. You have enough to worry about rather than running out and going back and forth to your pharmacy during treatment.

    Best Wishes,

    Swoosh13/Gail

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member

    Yes, Wade, in fact, you are moving forward even though at times it doesn't seem like much. All these things need to be done to give you accurate and safe treatment. Wow, you must have good teeth, but if your oncologist thinks they should be out I am sure he has a good reason. It sounds like your oncologist and oral surgeon came to some sort of consensus on the matter. Between oral readiness, blood tests, scans, mask making, etc, etc. it takes a bit till actual treatment starts, I believe it was about a month till I started treatment after cancer was first found by an ENT.

    As far as your medications go get with your care team and share your concerns with them. During my treatment, I never remember being short on any medications. If I was getting into a situation with them I would contact my docs or my Nurse Navigator. I was under the impression that I would not have to worry about pain meds or any other prescription during my cancer situation they made sure I was not lacking to get me through this cancer situation and treatment. No one should have to worry about not having enough meds during cancer treatment and recovery.

    Thanks for the update. You are making progress Wade just keep moving forward.

    Wishing You The Best. Take Care, God Bless

    Russ

  • Wade1
    Wade1 Member Posts: 30 Member

    Hi swoosh13 and Russ. Thanks for sharing your knowledge.

    They are telling me that once they get me and the machine ready the treatment is only a couple minutes. It will go basically from one side of the jaw to the other. Is that true about the time it takes?

    Next door at my chemo Dr they tell me it will take the most of the day for Cisplatin. Which will be one day a week. Compared to radiation which is 5 days a week.

    They told me that they have to administer pre meds before chemo. What are those for?

    Thanks and God Bless.

    Wade

  • Swoosh13
    Swoosh13 Member Posts: 84 Member

    Hi Wade,

    My husband’s radiation/chemo treatments were from 9/5 through 10/24. He had a 30 day supply (30 pills) of 8 mg tabs, said to take every 8 hrs for breakthrough nausea. He did not really need them every day. He also didn’t have much breakthrough nausea from the chemo so I guess that’s why. Also because Ondansatron is a very inexpensive generic drug, I don’t see why your insurance company would restrict it. I’d suggest going back to your dr who should be able to get you more.

    Our dr also prescribed Dexamethasone (a steroid) on just Day 1 of chemo and for just the next 3 days after. He had 7 weekly Cisplatin so again Dexamethasone for 4 days every week. Finally one more drug for nausea if/as needed … Olanzapine. One per day, usually around 8:00 pm as it could make you drowsy.

    All of these drugs (I think) were generic, and very inexpensive for us. He even ended up getting one refill (30 days) on his Ondansatron, but he never finished it.

    His doctors and nurses kept him relatively nausea free. They also told us they hung a bag of anti-nausea med (like Ermed or something) right b/4 every chemo infusion to last for 2 days.

    Hope this helps, I’d suggest asking the dr who prescribed your Odansatron for a larger supply. You have enough to worry about rather than running out and going back and forth to your pharmacy during treatment.

    Best Wishes,

    Swoosh13/Gail

  • Swoosh13
    Swoosh13 Member Posts: 84 Member

    Hi Again Wade,

    My husband told me it takes about 5 min to position him on the rad table to line things up and then about 10-15 more min of the actual rad machine passing back and forth over him. Total no longer than 20 min.

    Then as for his weekly Cisplatin, he got oral Dexamethasone (steroid helping against inflammation) and Ondansatron (by mouth prior to chemo) finally a bag of an anti-nausea drug called something like “Ermed.” The nurse told us that would stay in his system for 2 days. Total infusion time 5-6 hours max. Hopefully you will get a nurse education class BEFORE you start your treatment to go over all meds (how to use them), possible side effects, etc. The nurses were great. I always went with on any infusion days just in case he didn’t feel up to driving but only drove one day out of the 7. He drove to most rads himself but I went with on Dr/lab days, twice weekly.

    Hope that helps, feel free to ask questions!

    Swoosh13/Gail

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member

    Wade those are usually antinausea meds if I am correct. As you think of things like this jot it down so you can also ask the chemo nurse about the premeds. She can tell you for sure and there may be something more in there besides antinausea. Also if you have the interest start a notebook and jot down important info such as the type of chemo drugs you get and how often, when the treatments started, and when this whole thing started.

    Wishing You The Best

    Take Care, God Bless

    Russ

  • goffrey
    goffrey Member Posts: 57 Member

    If you are getting the once a week Cisplatin it shouldn't take more than about 31/2 to 4 hours. They give you anti nausea medication and steroids typically. The radiation length of time depends on if you are getting Proton or Photon radiation. I had proton so mine could take up to 45 minutes a session because after each dose I would have to wait for the person in the next room to get theirs up to 4 people and then the next round.

  • Wade1
    Wade1 Member Posts: 30 Member

    Hi all.

    I'm not healing that great from having 12 healthy teeth removed.

    After 2 weeks the pain got worse. I went to the O surgeon Thursday and it's hard for him to see if the gums or whatever are infected because of the swelling from the gums and my tumor so he went ahead just to be safe and put me on Keflex. Where my last tooth was (a molar) on my tumor side on the bottom gum felt rough and it was irritating under my tounge. He couldn't get my tongue pulled out and over enough to see under the back of it. He was worried about adding to the pain.

    But from him trying wow did it flare up whatever that pain was. I know now what it is.

    When I got home I decided I need to see what was going on. Yes everything is packed in there because of things swollen. But I used a tongue depresser and a Thor pen light as another depresser. I was able to get all the way back on that side and I seen what all the tongue pain was about. On the right side of my tounge and underneath is a ulcer. I'm guessing the white circle is about 12 mm in diameter and then it's red around it.

    So first off, does anyone know a good paste or barrier I can buy OTC for it. I can't even swallow because it hurts so bad.

    I couldn't get a pic with my phone as it's too hard to hold everything open and run a camera. Not enough room for two people.

    My wife called my surgeon today that I just seen yesterday and he suggested the normal stuff plus a script for mometasone Furoate. I recognized it as soon as my wife told me. It's a steroid cream my PCP gives me for poison ivy. My wife called it in. Our pharmacists that we have a good relationship with told us they have to label and tell us that it's not allowed in your mouth or eyes. So that was around 4pm. Our pharmacist told us to ask the doc again about it because it could have off label uses. Long story short everyone at my surgeons office was gone. I'm like dang who knows how long the office will be closed now because of Christmas.

    I made it all the way to the furthest extracted back molar with my finger. I know expose bone is normal after teeth extraction but I found a little piece of sharp bone sticking up about a 32nd of a inch (not muxh) above my gum. Reminds me of a piece of finger nail. Now I'm wondering if that's what gave me the abscess.

    Past 2 nights I've taken one Percocet and it helps with the gum pain Im having 3 weeks after 12 teeth where extracted. I told my surgeon yesterday that I'm regressing not progressing with pain. He wanted to see me that day. So I went. He didn't do a lot because of the swelling. Like I said though he did start me on Keflex. At least I can get a few hours sleep using a percocet.

    Now I can hardly swallow because of the painfulness of that ulcer.

    I need to get healed up more so I can start treatments on the 2nd. Surgeon told me yesterday well Thursday the exposed bones will heal.

    So if someone knows any good OTC or prescription ulcer meds I'd love to hear about them. I've tried even holding my tounge and trying to swallow. No luck. I've had a few mouth ulcers but not many in the past years. Maybe like 2 in 30 years. Been ages but I remember there's like a baking soda paste you can make and put on but I never had any luck with it helping.


    Thanks all for reading this. Sorry about me rambling on.

    Wade

  • goffrey
    goffrey Member Posts: 57 Member

    I had the same issues with really painful ulcers along the side of my tongue. Not a lot helped but one thing that did was Milk of Magnesia and swabbing it on the ulcer. I had ORN so I think that was part of it.

  • Wade1
    Wade1 Member Posts: 30 Member
    edited December 2023 #33

    Thanks Goffrey! That makes sense now as my surgeon told me to buy milk of magnesia and oralgel and a few other things. I was curious as to why he wanted me to drink milk of magnesia. LOL I guess he should've explained what I was suppose to do with it.

  • Wade1
    Wade1 Member Posts: 30 Member

    Goffrey, is Mylanta the same as Milk of Magnesia? Have you tried Mylanta?

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member

    Wade here is a web page that compares them side by side...

    Take Care, God Bless

    Russ

  • goffrey
    goffrey Member Posts: 57 Member

    You can use Mylanta also but I know Milk of Magnesia is more effective.

  • Wade1
    Wade1 Member Posts: 30 Member

    Thanks Goffrey. I'll get some Milk of if Magnesia then.

  • Wade1
    Wade1 Member Posts: 30 Member

    Hi everyone. I started my radiation and chemotherapy Tuesday. Had Chemo from 8 am to about 1:30 pm. I thought it went as good as possible. Was dog tired Tuesday night and went to bed pretty early. But I slept well. Yesterday I wasn't feeling that bad. I started noticing the read burn marks from my Radiation but it didn't bother me.

    Today is a different story. Like day and night compared to yesterday. I really feel like crap. Tired, light headed off and on, sick in my stomach and so on. I almost call d off radiation since it's almost a hour drive but I didn't. I went and got it done. They pushed me back to the radiation room in a transport chair. I greatly appreciated that.

    If I still can't eat anything later I'll try and take my nausea pill I have for breakthrough if the Zofran isn't getting it.

    Later.


    Wade

  • wbcgaruss
    wbcgaruss Member Posts: 2,471 Member

    Hello, Wade glad you have gotten treatment underway. This treatment can make you really tired especially the long days when you have an extended chemo or rads and chemo the same day. This treatment affects everyone differently but if you think something is not right tell your doctor or whoever you go in to see that day and that would probably be radiation. It sounds like it is a bit rough on you for 3 days but when you start this is all new on your system and that may be part of the effect. As you get days under your belt you will be able to gauge how you feel and be able to work with it. Don't forget, any questions or problems lean on your care team that's what they are there for.

    Wishing You The Best

    Take Care, God Bless

    Russ

  • Wade1
    Wade1 Member Posts: 30 Member

    I'm so glad things went well for him. They put all my steroids and other stuff in a IV before my Cisplatin. My first was Tuesday. By Thursday I was pretty sick. Was sick all day yesterday. Still rough today. No way once that chemo got to me Thursday I could've drove to radiation myself. Maybe it will get better. I hope.