Teeth, saliva and thyroid cancer

forme
forme Member Posts: 1,161 Member
edited March 2014 in Head and Neck Cancer #1
Hi All,
I have been following your posts on teeth and find it eye opening. I have had thy ca 2 previous times with mets. Now having third relaspe. Onc told me that the salivary damage from the rads I received can't be prevented. She never mentioned long term problems such as teeth damage. I have had tons of issues since the rads. Broken teeth , infections etc. Never had any trouble before the rads. I am set to have more rads in Nov. But am so scared of more problems. Someone mentioned Amifostine to protect the salivary function. As of today, I already have low saliva. Any thoughts and or suggestions would be so helpful. Thanks ...
Lisha

PS My onc says all thy ca is head/neck ca and I seem to fit in with so many of your posts. Hope you don't mind me dropping in..

Comments

  • Greg53
    Greg53 Member Posts: 849
    #2
    Welcome
    Welcome to H&N forme. Great group of folks here. Sorry to hear about your reoccurance. We've got several folks here who are survivors after several reoccurances. Also have several who used the Amifostine. I did not use it but wish I had been aware of it prior to my treatments. If it would have only saved a small percentage of saliva, it would have been worth it for me. I'm 5 months out and still pretty dry. I'm sure some of those who used the Amifostine will answer soon.

    Welcome to the site and keep posting.

    Positive thoughts!

    Greg
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi forme
    I used the amifostine on my first C treatment and I do believe it works to help prevent damage to the salivary glands. I also have all the problems with the teeth and wish I would have pulled them before doing the first treatment, but was never told by my doc that I needed to.

    Take care I too am a third timer on this cancer stuff and life after the third time is still very good.
  • forme
    forme Member Posts: 1,161 Member
    #4
    Greg53 said:

    Welcome
    Welcome to H&N forme. Great group of folks here. Sorry to hear about your reoccurance. We've got several folks here who are survivors after several reoccurances. Also have several who used the Amifostine. I did not use it but wish I had been aware of it prior to my treatments. If it would have only saved a small percentage of saliva, it would have been worth it for me. I'm 5 months out and still pretty dry. I'm sure some of those who used the Amifostine will answer soon.

    Welcome to the site and keep posting.

    Positive thoughts!

    Greg

    many years
    Hi Greg,
    It has been 13 years since I last had the rads. This year was the first year that I didn't take a large glass of Ice water with everywhere. I still have to have water around, but find myself drinking a lot less. It has been difficult, so little saliva. My original onc. didn't bother telling me about too many side effects, since he had little faith I would survive.. Ha to him... Of cours now, I am so scared all over again. More rads mean more problems with the lack of saliva. I really want to keep the teeth I still have. I have read about the amifostine and issues with it. I'll just have to ask the new onc and see what she thinks..
    Peaceful healing..
    Lisha
  • forme
    forme Member Posts: 1,161 Member
    #5
    Hondo said:

    Hi forme
    I used the amifostine on my first C treatment and I do believe it works to help prevent damage to the salivary glands. I also have all the problems with the teeth and wish I would have pulled them before doing the first treatment, but was never told by my doc that I needed to.

    Take care I too am a third timer on this cancer stuff and life after the third time is still very good.

    Amifostine
    Hi Hondo,
    I read that there are a lot of side effects with the amifostine. Did you experience any, and if you did, were they doable. Right now I am dealing with the reoccurance of the thy ca and also a lymphoma dx. I am not so afraid of the ca, but of the after effects. Fuzzy brain, no saliva, crappy teeth, loss of taste etc. I sometimes think that the Drs just want to get you through tx, when your done they forget about you and the lasting problems we are left with. I guess I needed to vent a little. Thanks for listening..
    peaceful healing..
    Lisha
  • hilde451
    hilde451 Member Posts: 229 Member
    #6
    forme said:

    many years
    Hi Greg,
    It has been 13 years since I last had the rads. This year was the first year that I didn't take a large glass of Ice water with everywhere. I still have to have water around, but find myself drinking a lot less. It has been difficult, so little saliva. My original onc. didn't bother telling me about too many side effects, since he had little faith I would survive.. Ha to him... Of cours now, I am so scared all over again. More rads mean more problems with the lack of saliva. I really want to keep the teeth I still have. I have read about the amifostine and issues with it. I'll just have to ask the new onc and see what she thinks..
    Peaceful healing..
    Lisha

    no saliva
    I have non-hodgkins follicular lymphoma stage 4, I had 20 radiation treatments
    in 04, I do brush with biotene Toothpaste. they also have gum too. It does help me quite a lot. At least there is no side effects.
    I hope that helps. Hilde
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #7
    forme said:

    Amifostine
    Hi Hondo,
    I read that there are a lot of side effects with the amifostine. Did you experience any, and if you did, were they doable. Right now I am dealing with the reoccurance of the thy ca and also a lymphoma dx. I am not so afraid of the ca, but of the after effects. Fuzzy brain, no saliva, crappy teeth, loss of taste etc. I sometimes think that the Drs just want to get you through tx, when your done they forget about you and the lasting problems we are left with. I guess I needed to vent a little. Thanks for listening..
    peaceful healing..
    Lisha

    Amifostine
    I had the shots every day before rads. I went in down a salivary gland because they removed my left one during my neck dissection. I was instructed to take a benedryl and tylenol before rads. It can spike a fever and cause a rash. I had the shots on the backs of my arms. I thought it hurt and burned like heck. But I might be whimpy. The shots also left black and blues. I never got a fever but I did get a rash a couple of times. If either happens you are supposed to call your RO. Also it can lower your blood pressure. They are supposed to take it before and then after rads. My pressure is usually low.

    I am as dry as dust now, so I don't even want to know how bad I would be with out those shots.

    Best of luck to you, Lisha.

    Sweet.
  • forme
    forme Member Posts: 1,161 Member
    #8
    sweetblood22 said:

    Amifostine
    I had the shots every day before rads. I went in down a salivary gland because they removed my left one during my neck dissection. I was instructed to take a benedryl and tylenol before rads. It can spike a fever and cause a rash. I had the shots on the backs of my arms. I thought it hurt and burned like heck. But I might be whimpy. The shots also left black and blues. I never got a fever but I did get a rash a couple of times. If either happens you are supposed to call your RO. Also it can lower your blood pressure. They are supposed to take it before and then after rads. My pressure is usually low.

    I am as dry as dust now, so I don't even want to know how bad I would be with out those shots.

    Best of luck to you, Lisha.

    Sweet.

    Info
    Hi Sweet,
    Thanks for your input on the amifostine. Every bit of info helps me along. I bruise really easy, low platelets don't help the matter. I just want to try and save what little I have in saliva function.
    Peaceful healing..
    Lisha
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #9
    forme said:

    Info
    Hi Sweet,
    Thanks for your input on the amifostine. Every bit of info helps me along. I bruise really easy, low platelets don't help the matter. I just want to try and save what little I have in saliva function.
    Peaceful healing..
    Lisha

    I bruise like fruit because
    I bruise like fruit because of my Fanconi Anemia. If you bruise easily then the shots may bruise you. It's worth it tho if it helps keep some saliva.

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