Hard Palate Cancer

Kritter
Kritter Member Posts: 147

Hi, been awhile since I posted, but I have been on a lot reading and sympathizing, with everyone.

I finished Radiation on January 6th, and Chemo on Dec 15, 2014. They said from looking with a scope I was NED, on a couple of occasions.

But I wasn't.... I was all smiles and happiness until the 14th of May, when I got my new diagnosis. 

Cancer of the hard palate and nasal cancer again. Which were found during the CT scan and PET scan. So now here I go down another road. They have me on morphine ( MS Contin CR ) 30 MG, and oxycodone 10-325 for pain. I start Chemo tomorrow and then follow up down the road with surgery. 

Does anyone you know of or have had surgery on the hard palate?

Mine has ate a small hole all the way through my upper hard palate. Makes it very hard to swallow and try to keep things from going up my nose. My top denture plate is helping with this. Actually have less pain when it is in place then out of mouth. But still hard to eat as they won’t let me have a bottom plate until we fix the issue.  My weight is a concern, but I am trying harder than ever it get it back up some. As I don’t want another feeding tube. As I have gastro-paresis and my tummy doesn’t work right at times. 

Sorry I don't have more info on this yet, but hope too soon as I see the ENT tomorrow afternoon.

I will try to stay in touch and as I learn more I will post or have a family member post for me on bad days. 

Prayers and Hugs to all. Kritter

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    Oh Kritter....

    what a sh***y deal, I'm sorry you're going through this again!  There might be someone here who has had cancer of the hard palate, just can't think of anyone off the top of my head.

    Are you on Facebook?  There is an Oral Cancer group there with nearly 2000 members....you're bound to find someone there who has been through this.  Let me know if you are on FB, and I can hook you up with the group there. 

    p

  • MrsBD
    MrsBD Member Posts: 615 Member
    Oh, Kritter, I am so sorry

    Oh, Kritter, I am so sorry you have to go through this again! There have been some new drugs approved in the last few months so hopefully you'll have a better outcome. I will pray that your pain is managed, your stomach cooperates, and you'll get a real NED this time around.

  • wmc
    wmc Member Posts: 1,804
    Kritter, Kritter, Kritter.................

    I really thought you had slapped the beast hard enought the first time. Going to have to slap the S**t out of it this time. Sorry to hear about the hard plate. I beleave someone on here has had surgery to close it. You're in my thoughts and prayers...Still......

    Bill

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Kritter

    I am sorry to hear this but don’t you give up, you are a fighter and you will fight it till the end. Last year about this time I had was the doctors were calling Narcotic, it is some kind of flesh eating bug and there was nothing they could do to stop it. By the time is finished I ended up with a 2 inch hole in my soft palate that I can now see the back of the sinus wall in my head. The bad news it is trying to start up again, what I did last time that I believe stopped it was to use raw honey on it and that is what I am doing again. I do a nasal rinse using local raw honey then I use a Q tip with a long handle I made to put the honey right on the spot. So far it has not gotten any larger but the area is still reddish looking.

    You might want to have your doctor double check to see if it is cancer or Narcotic.

    I am praying for you.

    Tim

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    T&P

    Kritter,

    I am very sorry to hear this, but you have already started of plan to get rid of it.

    I wish you the very best.

    Matt

     

  • lornal
    lornal Member Posts: 428
    :(

    So sorry to hear this.  You'll be in my prayers.

    Lorna

  • Kritter
    Kritter Member Posts: 147
    Palate Cancer Update

    Thank you ! for all the kind words.

    I am feeling much better today after the ENT explained the procedure. The problem right now is finding a dentist that is qualified to do the surgery. They are actively looking.

    It seems I need a special denture plate made with a thicker layer to it to come up to meet my palate. And minor surgery to clean out the hole and fix bone further up in nose. 

    If they can eliminate the cancer and can't find a dentist I need I may be able to live with the teeth I have if I get a tighter fit and they give me back lower dentures. So there are possibilities. I am not giving up hope. As I learn more I will post so it may help others who may be facing this issue.

    Hondo thank you for the tip, I have some raw honey on hand and can get some more if I need it, certainly won’t hurt to try it and it tastes good too. I believe we are both in Louisiana. I am close to the Lake Charles area. I will ask the Doctors about what you have posted on the info. 

    Phrannie I am not on Facebook but I have a nephew that is that lives close to me and cares for me I will talk with him. The info would be greatly appreciated as at times I think the Doctors are even stumped dealing with the cancer I have, it is very rare I am told, but not * unbeatable* ! 

    I am just doing the Taxotere Chemo, trying to eat more, gain weight and waiting until they can find someone to help me. 

    Prayers and hugs ! Kritter

  • hwt
    hwt Member Posts: 2,328 Member
    Kritter said:

    Palate Cancer Update

    Thank you ! for all the kind words.

    I am feeling much better today after the ENT explained the procedure. The problem right now is finding a dentist that is qualified to do the surgery. They are actively looking.

    It seems I need a special denture plate made with a thicker layer to it to come up to meet my palate. And minor surgery to clean out the hole and fix bone further up in nose. 

    If they can eliminate the cancer and can't find a dentist I need I may be able to live with the teeth I have if I get a tighter fit and they give me back lower dentures. So there are possibilities. I am not giving up hope. As I learn more I will post so it may help others who may be facing this issue.

    Hondo thank you for the tip, I have some raw honey on hand and can get some more if I need it, certainly won’t hurt to try it and it tastes good too. I believe we are both in Louisiana. I am close to the Lake Charles area. I will ask the Doctors about what you have posted on the info. 

    Phrannie I am not on Facebook but I have a nephew that is that lives close to me and cares for me I will talk with him. The info would be greatly appreciated as at times I think the Doctors are even stumped dealing with the cancer I have, it is very rare I am told, but not * unbeatable* ! 

    I am just doing the Taxotere Chemo, trying to eat more, gain weight and waiting until they can find someone to help me. 

    Prayers and hugs ! Kritter

    Kritter

    So sorry to read this but it sounds like there is plenty of optomism for you. Last year I had a combo of taxol/erbitux. Not sure if Taxol is the same as Taxotere, but, if it is, I can say that it was much easier on me than the cisplatin was back in 2011. MUCH easier...I hope the same for you. 

    Stay strong! You will be in my prayers.

    Candi

  • avisemi
    avisemi Member Posts: 172
    Kritter,
    i was happy to see

    Kritter,

    i was happy to see your name again but then read your post. I'm so sorry you have to go through this again. Though the time before you were such an amazing example of strengh and good/positive attitude that I'm sure you got this covered again.  

  • lorig01
    lorig01 Member Posts: 83
    Dentist recommendation

    Hi. I am so sorry to hear that you have to do the battle again.   I am 3 years out from tonsil cancer and I see that you are looking for a dentist.  I live in Houston and my Dr's recommended that I remove all teeth prior to treatment.  I was distraught and finally one of the Oral surgeons sent me to Dr. Marruffo for a second opinion.  She did her internship at MD Anderson and has a lot of experience with cancer patients.  I met with her and I truly believe that she was the main reason that I came through this difficult treatment whole.  She taught me more about head and neck cancer than my other Dr's.  I remember her telling me about making a prothesis for a women who had cancer that made a hole in her palate so she could eat.  I am thinking that this may be the type of prothesis that you need?  If so, I know she can make this.  I cannot recommend her highly enough.  I am not sure where you are located in Louisiana but Houston may not be that far away for you.  Her info is below.    If you want to contact me personally fro any questions,  send me an email to [email protected] and we can exchange numbers.   My thoughts and prayers are with you.  Lori

     

    image

  • AndrewP16nose
    AndrewP16nose Member Posts: 23 Member
    I had my hard palate removed

    Hi Kritter. I developed a nasal SCC and had my central hard palate removed ( along with my upper jaw, 5 front teeth and nasal septum). I had all the removed tissue replaced with a obturator ( a fancy denture). This has closed over the palate hole fine and only occasionally does liquid get through the hole. Next week I'm going to have reconstructive surgery to replace the obturator with my fibula bone.

     

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    You know what....

    Thennies61 just posted about getting a denture for the top that is thicker to keep food from going up into his nasal caviety....so obviously he has found a dentist.

    http://csn.cancer.org/node/294750

    I have heard of many people getting the obturator that Andrew mentions, also.....Oh yes, Miss Kit.....this is doable....you're gonna kick some butt now....I can feel it!!

    p

  • Kritter
    Kritter Member Posts: 147

    I had my hard palate removed

    Hi Kritter. I developed a nasal SCC and had my central hard palate removed ( along with my upper jaw, 5 front teeth and nasal septum). I had all the removed tissue replaced with a obturator ( a fancy denture). This has closed over the palate hole fine and only occasionally does liquid get through the hole. Next week I'm going to have reconstructive surgery to replace the obturator with my fibula bone.

     

     

    Andrew

    Hi, wow you have given me so much hope. 

    I hope you are not in much pain? Is what you are going through with the surgeries painful?  I was in a lot of pain for a few weeks, but has since stopped. 

    I have top upper plate and no issues with anything getting in the hole unless I forget and drink with them out. Then it is more a surprise then anything. 

    Right now I am in chemo again for the new cancer they found in the nasal passage, from what I gather they want to eradicare the cancer before moving on. But I am under the impression that if what is working for me now with the plate I have why would I need to have suregery and new teeth? Unless the hole starts growing again. I think it was more radiation that caused it than the cancer. 

    I wish you the best and please keep in touch and let me know what is working for you.. Prayers and hugs... Kritter

  • Kritter
    Kritter Member Posts: 147

    You know what....

    Thennies61 just posted about getting a denture for the top that is thicker to keep food from going up into his nasal caviety....so obviously he has found a dentist.

    http://csn.cancer.org/node/294750

    I have heard of many people getting the obturator that Andrew mentions, also.....Oh yes, Miss Kit.....this is doable....you're gonna kick some butt now....I can feel it!!

    p

    Phrannie

    Thank you for the link. Interesting that I let things scare me now that wouldn't have normally done so in the past. 

    I have decided to get off my tush and fight. No more wondering if I am going to be okay, just going to live my new life. 

    Getting rid of the cancer and if things are working now, let them work. I have no trouble with the hole as my top upper plate fits tight enough to allow no issues. So maybe I won't need more surgery or new teeth. If it is working, why mess with it my hubby says. 

    Thank again... Prayers and hugs!

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Kritter said:

    Palate Cancer Update

    Thank you ! for all the kind words.

    I am feeling much better today after the ENT explained the procedure. The problem right now is finding a dentist that is qualified to do the surgery. They are actively looking.

    It seems I need a special denture plate made with a thicker layer to it to come up to meet my palate. And minor surgery to clean out the hole and fix bone further up in nose. 

    If they can eliminate the cancer and can't find a dentist I need I may be able to live with the teeth I have if I get a tighter fit and they give me back lower dentures. So there are possibilities. I am not giving up hope. As I learn more I will post so it may help others who may be facing this issue.

    Hondo thank you for the tip, I have some raw honey on hand and can get some more if I need it, certainly won’t hurt to try it and it tastes good too. I believe we are both in Louisiana. I am close to the Lake Charles area. I will ask the Doctors about what you have posted on the info. 

    Phrannie I am not on Facebook but I have a nephew that is that lives close to me and cares for me I will talk with him. The info would be greatly appreciated as at times I think the Doctors are even stumped dealing with the cancer I have, it is very rare I am told, but not * unbeatable* ! 

    I am just doing the Taxotere Chemo, trying to eat more, gain weight and waiting until they can find someone to help me. 

    Prayers and hugs ! Kritter

    Kritter, i'm so sorry for

    Kritter, i'm so sorry for this bad news.  I'm also glad you're feeling better about the options/possibilities.  You are a tough cookie and I'm sure you will beat this again.  We will be here for you as you travel this bump in the road.  May God bless you, keep you strong and make you well.

    God bless you,

    dj

  • Cornelius57
    Cornelius57 Member Posts: 4
    Kritter said:

    Phrannie

    Thank you for the link. Interesting that I let things scare me now that wouldn't have normally done so in the past. 

    I have decided to get off my tush and fight. No more wondering if I am going to be okay, just going to live my new life. 

    Getting rid of the cancer and if things are working now, let them work. I have no trouble with the hole as my top upper plate fits tight enough to allow no issues. So maybe I won't need more surgery or new teeth. If it is working, why mess with it my hubby says. 

    Thank again... Prayers and hugs!

    Sugery

    Hi, I just had surgery, I have sinus cancer which they removed half of my palate, all my nasal passage, all my teeth, most of the inside of the right side of my mouth, my upper lip, the left side of my nose and 91 lymphnodes. Instead of the orbarator, they used a piece of skin from my leg to make a flap that will replaces my palate. My mouth is air tight so no leakage which is great. I would ask about the flap if surgery is involved.

  • jim and i
    jim and i Member Posts: 1,788 Member
    Kritter said:

    Phrannie

    Thank you for the link. Interesting that I let things scare me now that wouldn't have normally done so in the past. 

    I have decided to get off my tush and fight. No more wondering if I am going to be okay, just going to live my new life. 

    Getting rid of the cancer and if things are working now, let them work. I have no trouble with the hole as my top upper plate fits tight enough to allow no issues. So maybe I won't need more surgery or new teeth. If it is working, why mess with it my hubby says. 

    Thank again... Prayers and hugs!

    So sorry to hear you're in

    So sorry to hear you're in the battle again. Holding you in prayer.  Debbie

  • Kritter
    Kritter Member Posts: 147

    Sugery

    Hi, I just had surgery, I have sinus cancer which they removed half of my palate, all my nasal passage, all my teeth, most of the inside of the right side of my mouth, my upper lip, the left side of my nose and 91 lymphnodes. Instead of the orbarator, they used a piece of skin from my leg to make a flap that will replaces my palate. My mouth is air tight so no leakage which is great. I would ask about the flap if surgery is involved.

    Surgery

    Wow,I am so sorry you had to go through all that. What stage were you? I will certainly ask, but I think all they need to do with me is fix the hole, since I have no teeth due to pulling them. I believe that is the type of surgery they are talking about with me, as the hole is really not that large. Right now going through chemo as I am not a candidate for radiation anymore to shrink the cancer. Keep posting on how you are doing, sounds like they have  good plan in place for you. 

    Prayers and hugs... Kritter

  • Kritter
    Kritter Member Posts: 147
    jim and i said:

    So sorry to hear you're in

    So sorry to hear you're in the battle again. Holding you in prayer.  Debbie

    Battle

    Thank you!..I am adjusting, but atking it's time to understand i am a new person now. my heart goes out to you and yours as well,. Kritter