checking in with a few questions

sharon 1
sharon 1 Member Posts: 50
in Head and Neck Cancer #1

Hi everyone! I am doing so much better than I was!! Thank God! I do have a couple of questions tho. I have terrible xerostomia and my oncologist just doesnt seem to take serious. Anyone ever have a prescription that helped? It just makes me feel that now that I am out of txs and hes gotten paid BIG BUCKS, that hes now done with me as far as after effects.  Also I still have leg and foot numbness that he does treat with 5 mil oxy and 5 mil of alprazolm. I must say that if I dont use these 2 togather it becomes umberable. He said he doesnt think that it is neourapathy because it didnt start until almost a month or so until afte chemo. I am tired of taking all this oxycodone because it constipates me terrible and I have to take them 3 times a day. Any ideas? 

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    agree

    He's not taking you as seriously as you need.

    I know of no time limit for the beginning of side effects.

    Oxycodone is not the only pain reliever available: opiates constipate most people.  Make sure your doctor is addressing that.  My husband's neuropathy is treated with gabapentin.

    If you have or can find a good general physician or be referred to a pain specialist, that would be good.

    Oncologists are there to get rid of or control of the cancer.  After their job is done I believe your long term pain management is best handled by other doctors.

    At least talk to your GP about pain management.

  • wmc
    wmc Member Posts: 1,804
    #3
    Agree too

    He seems as he wants another Dr to take care of that and is brushing you off to an extant. It can take some time for some side effects to show them self. Most pain pils do hace the side effect of constipation. You have to always take softners and Laxitives, I know I do or I get real backed up. Like you have to take probiotics or eat yogurt if on antibiotics as they kill good and bad bacteria. Some times I wished the doctor had to go through this and maybe he would finily understand. Until he walks in your shoes he has no idea. My wife did have a very good heart doctor and really did understand, he too had a heart attack.

    Bill

  • MrsBD
    MrsBD Member Posts: 615 Member
    #4
    Acupuncture

    Acupuncture worked for my dry mouth. It might also help with your other symptoms. I had weekly sessions during my cancer treatment and for a few weeks afterward. It's been several months since the last treatment and I have very little trouble with a dry mouth. I do drink plenty of water and use Biotene rinse before bedtime. It's good to hear you are doing better!

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #5
    also agree

    Sharon 1,

     

    It sometimes takes a while to tame the side effects. I have been working on them for 3+ years post and still learning to deal with them.

    As said, medications can be a literal pain in the butt, but you learn to deal with it (with the other meds or fruits or vegetables or fiber).

    It looks like good advice above.

    Good luck,

    Matt

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #6
    Sharon1, i just want you to

    Sharon1, i just want you to know i"m praying for you.  Besides the side effects of treatments and pills, the docs can also be a royal pain in the a$$.  I'm sorry you're having the additional problems.  Maybe you should get curt with him to awaken him to your needs.  Or then again, maybe you should try honey....lol.  I hope you find a way to deal with him and make him take you seriously.  We all know that even though tx is over, a whole new set of problems begin.

    God bless you,

    dj

  • sharon 1
    sharon 1 Member Posts: 50
    #7
    debbiejeanne said:

    Sharon1, i just want you to

    Sharon1, i just want you to know i"m praying for you.  Besides the side effects of treatments and pills, the docs can also be a royal pain in the a$$.  I'm sorry you're having the additional problems.  Maybe you should get curt with him to awaken him to your needs.  Or then again, maybe you should try honey....lol.  I hope you find a way to deal with him and make him take you seriously.  We all know that even though tx is over, a whole new set of problems begin.

    God bless you,

    dj

    after effects and oncoligists

    Debbie, I am going to UW Cancer in Madison Wi. Its supposed to be one of the best here in the mid-west and I honestly understand that these patients arent there for the common cold and that they are busy, BUT through all of my chemo txs, I NEVER got in under 1 to 1/12 hrs-just to begin the treatments. When this neuropathy first started it was on Sunday and by Monday I was in really in rough shape. I couldnt even think straight so I called when they opened to speak with him about it. He didnt return my call for 5 hours and that was after calling 2 more times just waiting! Finally after the 3rd time I admit I was harsh and told the nurse that I was in horrible distress and that I NEEDED HELP NOW! I mentioned to her that he had all ready made his money form the txs and how I felt about being ignored. 10 minutes later he finally called, called in the prescriptions and like I said, I could literally feel the numbness and pins and needle feeling leave my body. By then it had spread from my left side to my right side from toes, feet,arms and mind. I couldnt even think because of the distress.  Any how I know that this combination works and when I called for a refill for another problem I was having (thrush), he had left a nurse a message that I could go to my general practioner for them. I have spoken with my primary care dr and hes going to take over my prescriptions from now on.  I dont like being on oxycoton, but I have looked up the side effects of gabapetin and they scare me much more. Anyhow, if I could now recieve some help with this dry mouth and nose Xerotoma(?) I would be a happy cancer patient. The dryness keeps me up sipping water and going to the bathroom all nite. I do take a sleeping pill, but doesnt do much good when I am wakened so often. I have tried the Stoppers, Biotene, but would really like to know if there is something that really works!! Ive been finished with treatments 4 mo now. Thanks everyone for your advice. I laughed at your reference to the honey attitide tho Deb. I am about honeyed out.LOL 

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #8
    sharon 1 said:

    after effects and oncoligists

    Debbie, I am going to UW Cancer in Madison Wi. Its supposed to be one of the best here in the mid-west and I honestly understand that these patients arent there for the common cold and that they are busy, BUT through all of my chemo txs, I NEVER got in under 1 to 1/12 hrs-just to begin the treatments. When this neuropathy first started it was on Sunday and by Monday I was in really in rough shape. I couldnt even think straight so I called when they opened to speak with him about it. He didnt return my call for 5 hours and that was after calling 2 more times just waiting! Finally after the 3rd time I admit I was harsh and told the nurse that I was in horrible distress and that I NEEDED HELP NOW! I mentioned to her that he had all ready made his money form the txs and how I felt about being ignored. 10 minutes later he finally called, called in the prescriptions and like I said, I could literally feel the numbness and pins and needle feeling leave my body. By then it had spread from my left side to my right side from toes, feet,arms and mind. I couldnt even think because of the distress.  Any how I know that this combination works and when I called for a refill for another problem I was having (thrush), he had left a nurse a message that I could go to my general practioner for them. I have spoken with my primary care dr and hes going to take over my prescriptions from now on.  I dont like being on oxycoton, but I have looked up the side effects of gabapetin and they scare me much more. Anyhow, if I could now recieve some help with this dry mouth and nose Xerotoma(?) I would be a happy cancer patient. The dryness keeps me up sipping water and going to the bathroom all nite. I do take a sleeping pill, but doesnt do much good when I am wakened so often. I have tried the Stoppers, Biotene, but would really like to know if there is something that really works!! Ive been finished with treatments 4 mo now. Thanks everyone for your advice. I laughed at your reference to the honey attitide tho Deb. I am about honeyed out.LOL 

    good

    I'm glad you are getting help, Sharon.

    Because my husband received daily shots to prevent, dry mouth was not a major complaint.  Jim used Biotene rinse and spray at bedtime.  Had his problem worsened, we would have consulted his dentist.

    Gabapentin - give it a try, Sharon.  It works well for my husband's nerve damage pain and my daughter's pain from multiple sclerosis.  Jim also takes Cymbalta for nerve pain as well wearing a fentanyl patch and uses percocet for break through pain.  To counter nausea from all the meds, Zofran was added.

    The key seems to be in finding the right combo of pain relievers for the individual without overwhelming the system.  For some, the road back involves trying different things until you find the right plan for you.  Your new normal requires patience to achieve the very best plan for you.

     

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