1/2 way there

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Raddude
Raddude Member Posts: 84
in Head and Neck Cancer #1

I read these boards often, but rarely comment as I am going through what most are asking or commenting about.

Today is day 20 of 35 rads and round 6 of 7 erbitux treatments. So far, I have begun losing taste, had some issues with rash due to erbitux, and some raw skin issues around neck. I did have a peg put in just in case and have not really needed to use it but have for certain things that the taste is off or now doesn't taste like i thought it would. For me that has been the strangest thing. Your mind remembers how certain foods taste and you think that sounds good and I could probably eat that...you get it and it doesn't even come close to tasting like that anymore, lol. I am grateful for all of you and I will keep my head up and keep pounding to get through. The other issue I have and was wondering if anyone has gone through this. I was prescribed fentanyl patches. They are pretty low dose, Ii think12's. I do have some throat pain that some relief would make it much easier to sleep through the night. Long story short. These patches made me very sick and I ended up throwing up all that I ate or drank. Of course I have not had any more patches but was wondering if others have had this reaction?

Stay positive and keep pounding.

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  • swopoe
    swopoe Member Posts: 492
    #2
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    You have come so far! Way to

    You have come so far! Way to go! The taste thing is funny, from what my husband said. hardly anything tasted right. But it will come back. No advice on the fentanyl, as my husband didn't have that. But you are half way there- chin up and keep going!

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
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    Painkillers...

    Every painkiller has the potential to make a person sick to their stomach.  I was given liquid Hydrocodone to put in my tube...and I'd throw it up within a very short time.  Tell your Oncologist that the Fentinal makes you sick, so he can try something else.  You'll most likely find something to ease the pain, and allow you to keep your dinner at the same time.  There are many many other pain killers out there!

    Good luck, and hang in there!!

    p

  • wmc
    wmc Member Posts: 1,804
    #4
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    You're doing good.

    I never had radiation or the chemo. Just surgery which took my larynx and 86 lymph glands. With my air all going through my neck and none through the nose, it affected tast and smell. Well I have no smell, I opened a jar of fresh garlic and can't smell anything. So I put some on the steak I cooked and then my wife walked in. She had tears in her eyes and asked If I had enough garlic? Well when I ate it I knew I had wat too much, and paid for it all night long. So much of eating is sight, smell, and tast. It takes all three working to really enjoy it. I do have my tast but I noticed it has changed some, so I guess it is due to loss of smell. Just something I have to get used to as I can walk in to a room and bleach was spilled and I never know it, until my lungs burn. 

    In most cases you will get some if not most and even all your yast back over a few months to a year. You are doing really good and remember, you are winning the fight.

    Bill

  • the_wife
    the_wife Member Posts: 184
    #5
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    Good to hear from

    Good to hear from you, Raddude. Sounds like you are doing well, considering. My husband used the fentanyl patches at a larger dose in addition to liquid oxycodone around the clock. He was constantly nauseous during treatment and for a long time afterwards, but I don't think it was from the pain meds. I think it was just from the chemo (cisplatin). He had a really hard time of it. But yes, check with your doc. They always seem to have something else for you to try. 

    Taste ... hmmmm - that is still a problem for my hubby and he is almost 5 months out. So far he has not regained either his hunger or his sense of taste. But I know that is highly individual and takes a looooong time for it to come around. I can't wait for the day when he says "This tastes good" or just plain normal. Someday...

    Keep up the good work! Stay focused and you'll be done before you know it!

     

     

  • tomb247
    tomb247 Member Posts: 54
    #6
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    Check your Dose

    Check the dose and make sure they are building up from the low end. It took about a week and a half for me to find the correct patch dose. I was also on liquid hydrocodone and lidocaine gargle.  Did you start the patch prior to a meal. I am not sure the time it takes to get fully into your system but it may be like a regular medicine and if it was hours between meals and the patch was starting to saturate your system, maybe this caused nausea. Just a thought. Good luck and keep us posted on how things are going.

    Peace and Prayers your way,

    Tom

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #7
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    57%

    Raddude,

    Don’t kid yourself; you’re 7% more than halfway.  You’re on the downhill side.

    For me, I used magic mouthwash for mouth, tongue and throat discomfort.  I went through six bottles of the stuff and drank every drop of it.  I had a whole procedure before bedtime, gargle with the salt & baking soda mixture then take it a hit of the magic mouthwash jump into bed.

    I used to take a swig of the magic mouthwash while out in the parking lot of the radiation facility.  It worked well for me.

    Week three was the end of my good taste, the last hamburger I had before the taste buds signed off.

    I am almost 4 years post and things have come a long ways toward improvement to my new normal.

    Matt

  • oldvampswyfe
    oldvampswyfe Member Posts: 10
    #8
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    First of all I am impressed that you have the energy to post

    When oldvamp and I started this journey, he was prescribed morphine and lorazapam, plus 2 anti-nausea meds.. lets say he just had a very bad out of body experience and I was at the other end of it. He had chemo hiccups, so was precribed another anti nausea drug on top of the other two.  After a couple of days I took him off the both the ant_idepresant and pain med.. we went to see the doctor, they told us to take him off of both (LOL, of course we did that prior).. So they re-prescribed oxy... needless to say he couldn't swallow it, so prescribed liquid (that's when the midnight strolls came into our reality..we had another bad reaction..so he pretty much went cold turkey for a few weeks.. his chemo doc was in shock, so he prescribed the fent path (12.5).. that went okay so he prescribed the 25 fent patch along with the 12.5 (just in case) and dilaudid as a prn for pain.  There were no side effects.  But pain meds can cause a heck of a lot of stomach issues.  Like us, you may have to play around to find the right cocktail for you.  We were already half way through it, plus, before the doctors came up with the right mix of drugs

    Your doctor can prescribe an anti-nausea med for you.  My sis, being a little holistic like myself, chose mint tea..it helped until it didn't help any more.

    Keep your chin up.. you are half way there.. and that deserves a huge hug and an bigger atta boy..it will get better.. right now it just doesn't seem like it.

     

     

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
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    Halfway

    That is great you are now going downhill, it gets real bumpy right at the end, just keep telling yourself how many more are left and do the last one standing on your head. On the PEG just keep it ready to go if needed, when or if it becomes too hard to eat by the mouth, put it in old PEGGY she will get you the rest of the way. Sorry on the fentanyl patches I never used them so can’t say nothing good or bad about them.

     

    Tim           

  • MrsBD
    MrsBD Member Posts: 615 Member
    #10
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    Fentanyl

    You're more than halfway done and it sounds like you've been doing well. Like you, I was prescribed Fentanyl patches (25s) for the pain from radiation treatments. I had Erbitux too. They also gave me Hydrocodone and magic mouthwash to use as needed. That and the excess mucus really upset my digestive system. Ginger tea helped for a while, and eventually I tried anti-nausea medication, but it wasn't very effective. What did help was acupuncture. It amazed me that I never lost my sense of taste and have almost normal saliva today.  Because I didn't have a PEG or any desire to eat, it was hard to get enough nutrients, but by the grace of God, I made it. Explore the options with your doctors and you'll find something that works for you.

  • Barbaraek
    Barbaraek Member Posts: 626
    #11
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    I have been thinking of you

    Raddude! Actually I think of everyone here, but especially those who are "on the bus" so to speak, because oftentimes they are on such a bumpy ride.

    You are doing great...more than halfway! I am so glad you opted for some traditional therapy after weighing your options and I hope those radiobeams and the Erbitux are annihilating those cancer cells. Pain is so evil. I hope that they can find a pain reliever that works and that you can tolerate well. It amazes me that at one point my husband was on 150mcg fentanyl patch and it still didn't alleviate his pain. I cannot wrap my head around the courage it takes to go through the ordeal that you all undergo. You are indeed warriors.

    Keep focusing on the next step, the next breath, the next minute and you will make it to the end of that bus ride. Prayers and well wishes for you...

    Barbara

  • kdot2003
    kdot2003 Member Posts: 143
    #12
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    Almost done!

    You are almost done!! Yes the bus ride gets bumpy at the end but its the end!!!  Counting the days!!

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #13
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    kdot2003 said:

    Almost done!

    You are almost done!! Yes the bus ride gets bumpy at the end but its the end!!!  Counting the days!!

     

     

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #14
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    Raddude

    You're doing well for just over halfway through the radiation ordeal. I lost my taste way before this point but as we state often, everyone is different. Once you lose the taste for something don't try and force yourself because it is one of your favorites, I was told after treatment and you're on the mend you may never acquire your taste back for that item. One thing I never got my taste back for is sausage, I still enjoy smoked in a good stew but all the reast fresh or breakfast links, just ain't the same.

    Can't help you with the fentanyl, I was on oxycodone.

    As you stated "keep pounding" the finish line is in sight. When you cross it the feeling is like no other.

          Jeff

  • kdot2003
    kdot2003 Member Posts: 143
    #15
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    Hi Raddude, 
    I didnt have

    Hi Raddude, 

    I didnt have patches but used the liquid Hydrocodone.  Nausea and vomiting all the time with the Cisplatin so not sure what exactly caused the sickness sometimes.  Just sick in general.  Your doc can certainly try different things for the pain without the side effects.  You will need something good for the end.  Sounds like you are doing great though and yes youre on the downhill slope!!!!!  I counted the weeks and it was so much better with the end in sight

    Karen

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