Just started treatment - NEED ADVICE

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welding2
welding2 Member Posts: 6
edited June 2017 in Head and Neck Cancer #1

My husband was diagnosed a year ago with unknown primary SCC.  He waited until about 6 weeks ago to do another exploritory surgery for the primary.  FOUND IT at the base of the tongue!!  They were able to remove it with clear margines.  He is taking weekly cesplatin and daily rad for 6 weeks.  First dose of chemo was on Monday and radiation started Wed.  He is so sick!  Does anyone have any suggestions?  I don't know if he will make it through it if he is this sick the whole time. 

Also, we got many opinions on the diagnosis and treatment, all around the country.  They were all the same, radiaiton and chemo.  But we lucked out and the radiation doctor in our local facility use to work at one of the specialty clinics we went to.  So, he is getting treated locally.  But no one has said anything to us about how to prevent side effects.  What is this lotion?  I looked at the list of the essential things to have in the read only forum and I only knew what to do with a few of them.  Please give us some advice on how to get through this....  He doesn't have a feeding tube.

Comments

  • bebo12249
    bebo12249 Member Posts: 181 Member
    #2
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    Which side effects is he

    Which side effects is he experiencing and which treatment is he receiving at home?

  • welding2
    welding2 Member Posts: 6
    #3
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    bebo12249 said:

    Which side effects is he

    Which side effects is he experiencing and which treatment is he receiving at home?

    He's horribly nausous.  He is

    He's horribly nausous.  He is getting both chemo and radiation at our local cancer clinic.

  • caregiver wife
    caregiver wife Member Posts: 234
    edited June 2017 #4
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    Nausea

    There are prescription medications to control nausea.  Aquaphor is often used for radiation.  Others, too.  It can be a bit of trial and error.  Do not hesitate to call your doctor/treatment center when you are in need of help.  They cannot predict what side effects different patients will have.  There is always a learning curve for everyone that goes through their own personal  journey.  Please come back and let us know how he is doing, or when you have other questions.

    Crystal

  • SuzJ
    SuzJ Member Posts: 427 Member
    edited June 2017 #5
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    whats he been prescribed?

    He should have steroids for 3 days with chemo, phrochloperazine for nausea, and odansetron for nausea. (thats what I had)

    For radiation, keep his neck creamed up whenever he's not being microwaved.

    Good Luck!

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
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    This was my nausea schedule

    during chemo.

    7 AM.....Zofran

    8 AM.....Emend (for the 2nd and 3rd days after day 1 chemo)

    10 AM.....Compazine.

    1 PM....Ativan

    4 PM....Zofran

    7 PM.....Compazine.

    Bedtime....Ativan

    The Emend was given the first day with my chemo...then I took it for the next three days orally.  This is a big gun anti-nausea drug.  I did the Zophran, Compazine, and Ativan until nausea completely abated (usually the 3rd or 4th day).  ASK for these drugs if they didn't automatically give them to you.

    For the neck burns....I tried Aquafor, but it was too greasy for my tastes....I used Aloe 99 and Calendula Cream.  I put the Aloe on and let it dry then applied the Calendula.  

    p

  • soonermom
    soonermom Member Posts: 155
    edited June 2017 #7
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    Nausea

    My husband is 10 weeks post treatment.  He really stuggled with both nausea and then side effects from the drugs phrannie51 listed to treat the nausea.  I think you will find that everyone has a different repsonse to the chemo and so what we tell you worked for us might not work for you.  However, what I can say is that as the caregiver you absolutely must be very agressive in monitoring the side effects and intervening before they get difficult to control.  I will say in the beginning we did not repsond quickly enough and forcefully enough to the nausea and then ended up with unpleasant issues like losing 9lbs in 3 days, getting dehydrated and ending up in the ER and a litany of other issues I won't detail.  It is serious business is what I am trying to say.  There were times when my husband sadly just went through times when he did not have the physical energy and/or mental energy to deal with his symptoms without my support. Sometimes he was not even aware of symptoms he was having.  I kept records of everything and sometimes he simply could not recall what had happened accurately enough to report it to the medical team nor did he have the energy. For us it did get very hard but we got through it and you will too.  Bottom line maintaining hydration and nutrition was a constant and I mean constant struggle for him. Other sailed though treament with far fewer side effects.   We had open standing orders for fluids after each treatment and had to use those more and more as time went on.  The two main side effects he struggled with were constipation and drowsiness/mental decline (especially from Ativan).  There were others but those were two that about took him down because they made hydration and nutrition diffcult.  You will find your way through but speak up to the medical team about his side effects from treatment and any of the meds.  It can be a hard path, harder for some than others, but it is doable.  My husband has said numerous times that he would have died during with me advocating for him.  He had a difficult time during treatment but we are on the other side now.  You will get there too.  I am not trying to be negative or scare you but just make you aware that although it can be very hard and require a lot of support from you, you can get through it as a team.  We are having on going challenges after treatment but we are so grateful for the chance to beat this beast.  

  • Nancy24
    Nancy24 Member Posts: 72 Member
    #8
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    Nausea

    Make sure that they're giving him nausea meds with the chemo. And notify the medical oncologist immediately so that Ondandestron or other nausea meds can be prescribed. I was also my husband's caretaker and I agree that you have to be aggressive monitoring side effects and notifying oncologists until you find something that helps. 

  • welding2
    welding2 Member Posts: 6
    #9
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    Thank you

    Thank you everyone for your advice!  This has been truly helpful!

  • jpmsd
    jpmsd Member Posts: 14
    #10
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    phrannie51 said:

    This was my nausea schedule

    during chemo.

    7 AM.....Zofran

    8 AM.....Emend (for the 2nd and 3rd days after day 1 chemo)

    10 AM.....Compazine.

    1 PM....Ativan

    4 PM....Zofran

    7 PM.....Compazine.

    Bedtime....Ativan

    The Emend was given the first day with my chemo...then I took it for the next three days orally.  This is a big gun anti-nausea drug.  I did the Zophran, Compazine, and Ativan until nausea completely abated (usually the 3rd or 4th day).  ASK for these drugs if they didn't automatically give them to you.

    For the neck burns....I tried Aquafor, but it was too greasy for my tastes....I used Aloe 99 and Calendula Cream.  I put the Aloe on and let it dry then applied the Calendula.  

    p

    Hilarious that was nearly my

    Hilarious that was nearly my schedule as well. Be as proactive as possible. I occasionally snuck in a corner of a California brownie as well. 

    Still kept buckets and bags all over the house. Needed them occasionally too despite the regimen.

     

     

     

  • larrydsparks
    larrydsparks Member Posts: 9
    #11
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    my husband Larry just started treatment on Wednesday for (Oral Squamous cell carcinoma HPV 16 I believe its called) small tumor on base of tongue and 3 lymph nodes affected on right side of neck. he had his first round of chemo. He will start radiation on Wednesday after the 4th of july. He was very sick the day after and i jumped into action and got him back to the ocolgist office for IV fluids and stronger nausea meds. He is taking the Ativan and he is constipated and extremely tired. Can anyone help with recommendations for eating to keep energy levels up and helping with immun system and also help the constapation?

  • SuzJ
    SuzJ Member Posts: 427 Member
    #12
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    Miralax (get the OTC version)

    Miralax (get the OTC version)

  • soonermom
    soonermom Member Posts: 155
    #13
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    The Big C

    Your treatment team should have a protocol for you to follow for the constipation.  This became such a problem for my husband to the point it was interfering with hydration and nutrition that we made the decision to pay for a consult with our local GI doc. Best money we ever spent.  He changed what meds we were using for the constipation slightly and was much more aggresive in increasing the dosage of some of the meds because they were for temporary use.  The meds effect everyone differently but the Ativan caused my husband to be so sedated and mentally foggy that he was not awake and active enough to keep his intake adequate which caused a cascade of other issues.  They ended up changing my husband's pain protocol to put the use of Ativan down the line of meds so he only used it if other meds were not effective.   Just keep observing symtoms you see and ask for direction in how to modify if needed. 

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