Week 3 almost done (Monday)

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RottiesMom
RottiesMom Member Posts: 167
in Head and Neck Cancer #1

Having a rough time with this last chemo.  I am really annoyed and going to get  in touch with the coordinator who we met at my first chemo and said if we had any problems to call him.

I had chemo tues and was fine wed.  Thurs I felt lousy.  I threw up my protein drink and was so tired went back to bed. I woke up at 12:30...had to be at radiation at 2:15.  Took a shower and left, still not able to eat or drink.  Had radiation and Thursdays I see the radiation oncologist.  He is very pleased with treatment and said at the dose I'm getting cancer won't survive.  Also said things are going to get a lot worse but am handling it well.  I told him about not eating or drinking in and he said yes go upstairs to get an iv fluid push.  I go upstairs and the one who sits at the desk on the infusion side said Dr Keogh isn't in, but I will send out one of the assistants.  I sit down and after 10 minutes she comes out.  She says...well its late and going to take 2 hours and I have to get approval from the insurance company.  What???  So I went to sit and wait. This was 3:00.  3:30 she still hadn't come out and I had to throw up. I went to the desk and said I can't wait. I walked out and had the dry heaves on the outside lawn.  (She did tell me I could take both Phenergan and zofran the same time and shorten the hours between doses.)  I went home.  She called at 4:30!! She said I could come in at 1:00 Friday for fluids.  What??? I would have been sitting there for an hour and 1/2 waiting to hear i could get fluids Friday??  That wouldn't work because i have radiation at 2:15. I am so angry.  First I am supposed to be drinking 2 quarts of water after chemo as cisplatin destroys your kidneys and you have to flush out medicine...I hadn't had anything to drink since Wednesday night!!  My doctor us going to hear about this too!  I feel like I'm trying to play catch up.

I'm dealing with the effects of radiation...been using the magic mouthwash, also rinsing with baking soda/salt mixture.  I do have mucous build up, food has lost its taste, some mouth/throat sores, fatigue.  If I could just get rid of this nausea.

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  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited July 2016 #2
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    rough go of it

    RottiesMom,

    Let’s hope that juggling with your treatments doesn’t happen again.  Usually, your team is in tune with your side effects and things go much smoother.  Do you have someone that can be vocal for you?

    Constant flushing of the system is an important aspect to drinking water and shouldn’t be overlooked.

    Now you know some of their flaws and what your body needs to get through this.  They should not have dropped the ball.  You have to be your own personal advocate I am sorry to say.  Treatments are hard enough.

    I look forward to better reports from you.

    Take care,

    Matt

  • RottiesMom
    RottiesMom Member Posts: 167
    #3
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    Yes

    My chemo dr was out that day and i didn't talk to the infusion nurses.  I didn't want to make a scene as there were other cancer patients there and didn't want to upset them. I was told by the infusion nurses and my doctor that if I threw up even once to come in.  With all the anti nausea meds there is no reason for that.  At that point i was so nauseous and tired I just wanted to go home.  My doctor and the guy I told you about...they are going to hear about this!  

    Joanne

  • Kari2007
    Kari2007 Member Posts: 108
    #4
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    Hope it gets better

    I'm sorry you had such a rough time this week, Joanne. Have they given you Lorazepam (Ativan) for nausea at all? With my first chemo, I got compazine, some kind of steroid, zofran, and lorazepam and was taking all of them round the clock - didn't have any nausea. Are they also given you Amend (Emend?) with your chemo? That stuff lasts a week. I wonder if since you and I are on the same dosing of cisplatin, if you could try some of the things I have. 

    Kari

  • LiseA
    LiseA Member Posts: 266
    #5
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    Joanne, so sorry you're

    Joanne, so sorry you're feeling terrible. I can't believe the frustrations you must deal with on top of not feeling well. Are you at one of the major cancer hospitals?  Your experience reminds me of what my sister went through at one of our local hospitals. We were always fighting with them to do what needed to be done. Hope things are resolved early in the week. Thinking of you. If all else fails, go to the ER for that IV. 

  • RottiesMom
    RottiesMom Member Posts: 167
    #6
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    Thanks

    This is one of the best hospitals here.  They are associated with the Levine Cancer Institute.  I have had surgeries here (I have pelvic organ prolapse and have had 12 surgeries to date for it, 4 at this hospital).  Their care is excellent, I think this assistant was the problem.  She was more concerned with the time of day, the time the iv push would take and calling my insurance company. (I should have called, in 5 minutes I would have found out I was approved.)  Kari, I know they give me anti nausea meds, steriods before the cisplatin.  The infusion nurses told me if what I have isn't working come in..there are other things they can give me!!  Maybe those are the meds you have.  Only I couldn't get past that assistant!!  Monday I'm calling the guy I was telling you about and ask to meet with him.  This won't happen again.  Thanks for your encouragement and support.

    Joanne

  • Josephwc
    Josephwc Member Posts: 69
    #7
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    I can't imagine the pain and frustration

    Joanne

    I read your words and feel for you.  I can't offer any suggestions but I can say I truly hope it gets easier to deal with it all.  Will keep reading about your recovery and please do know that you aren't alone.  All the best to you.  

     

    Chin up you are a trooper!

    Joseph

  • cardoza33
    cardoza33 Member Posts: 81
    edited July 2016 #8
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    LiseA said:

    Joanne, so sorry you're

    Joanne, so sorry you're feeling terrible. I can't believe the frustrations you must deal with on top of not feeling well. Are you at one of the major cancer hospitals?  Your experience reminds me of what my sister went through at one of our local hospitals. We were always fighting with them to do what needed to be done. Hope things are resolved early in the week. Thinking of you. If all else fails, go to the ER for that IV. 

    No matter where you are,

    No matter where you are, there are times you will run into a person who is either having a bad day at their job and take it out on you or are just an a$$hole.  You are going through cancer so screw them, you may not feel capable of dealing with it due to your condition, but take someone with you who will advocate on your behalf.  I am usually the one who will deal with issue like this, but my wife (who is the most calm, sweet person ever) was always with me to advocate.  I was nausaus my entire treatment and for several month into my recovery.  No one was ever able to tell me why. I tried all the meds mentioned inclusing ativan.  I would suggest not taking ativan as it caused me anxiety or at least just read up on it before you take it so you know about it.  I had no idea what it was and wanted to take whever they gave me to stop throwing up.   I feel for you and hope it will go away.

  • cardoza33
    cardoza33 Member Posts: 81
    #9
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    LiseA said:

    Joanne, so sorry you're

    Joanne, so sorry you're feeling terrible. I can't believe the frustrations you must deal with on top of not feeling well. Are you at one of the major cancer hospitals?  Your experience reminds me of what my sister went through at one of our local hospitals. We were always fighting with them to do what needed to be done. Hope things are resolved early in the week. Thinking of you. If all else fails, go to the ER for that IV. 

    No matter where you are,

    No matter where you are, there are times you will run into a person who is either having a bad day at their job and take it out on you or are just an a$$hole.  You are going through cancer so screw them, you may not feel capable of dealing with it due to your condition, but take someone with you who will advocate on your behalf.  I am usually the one who will deal with issue like this, but my wife (who is the most calm, sweet person ever) was always with me to advocate.  I was nausaus my entire treatment and for several month into my recovery.  No one was ever able to tell me why. I tried all the meds mentioned inclusing ativan.  I would suggest not taking ativan as it caused me anxiety or at least just read up on it before you take it so you know about it.  I had no idea what it was and wanted to take whever they gave me to stop throwing up.   I feel for you and hope it will go away.

  • RottiesMom
    RottiesMom Member Posts: 167
    #10
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    I'll get through this

    Thanks for the advice and encouragement!   My husband was with me and when she said about checking insurance he said some things to her, but she didn't seem to care...it was just sit over there.  If this ever happens again, I sit down and call that guy.  I have his card in my wallet!  Still fighting the nausea, but between the Phenergan and zofran at least I can get some liquids down.

    Joanne

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