Advice Please

vickyd123
vickyd123 Member Posts: 16
in Head and Neck Cancer #1

 

Hi Everyone,

 

 

 

My husband has had 15 out of 30 rads.  Yesterday he went in for his appt with the Chemo onc and was told he was being switched off Cisplatin to carboplatin. He was quite disappointed because he thought cisplatin was suppose to give him the best chance. He has stage 4A BOT. Only one lymph node. The doc said they caught it really early and said it was T-1 tumor. The cisplatin caused some hearing loss and tinnitus. His blood test came back and one of the results was still too low so they also set it back a week. Not to mention he also has a nasty cold. So rather than only two more chemo treatments he goes once a week for 5 more. Is it usual to give carbo with nothing else? Seems whenever I see carbo it’s always with 5fu.

 

 

 

Also, he has completely quite eating solid food. I bought some protein powder from a sports store and it’s loaded with calories and protein. It has 600 calories in 3 scoops. I use 2 scoops -400 cal, 125ml of hagen daz strawberry ice cream -270 cal, a cup of milk-160 cal and 2 tbsp of whipping cream for a total of 930 calories. I make it three times a day and he reluctantly drinks it. So almost 2800 calories a day and he’s still losing a bit of weight? It’s so frustrating I feel like ripping my hair out. This is what I use http://www.dymatize.com/store/p/286-Elite-Mass-Gainer-6-Pound.html If anyone doesn’t think this is okay can you please let me know. We have an appt with a nutritionist next week but not until Friday.

 

 

 

Also, he is taking 2 extra strength advil every 4 hours with 2extra strength Tylenol in between which really helps for pain. They gave him T3’s and he said other than making him feel wonky they do absolutely nothing for pain. To me it seems like a lot of pills. We see his rad onc on Monday so hopefully they can figure something better out.

 

 

 

Thanks for any advice!  

 

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Carboplatin is used

    just about as often as Cisplatin, I think.  And for those that are suffering hearing loss and other side effects from Cisplatin, Carbo is a great replacement.  They are both "platin" chemos.  Many people get their chemo's weekly....it's kind of up to the different Drs. on how they want to do it....weekly, or the large dose every 3 weeks.  This is more a pain in the butt appointment wise....but good for side effects.  They mix Carbo with 5FU when they hit the tumors before rads....I had 5FU with Cisplatin for adjuvant chemo.  Carboplatin is the "go to" when Cisplatin side effects get to be too much.

    I think it's a rare person who gets through this without any weight loss....yes, he probably could use more calories, but that's pretty much all of our story.  We reach a point where getting the bare minimum is all we can do.  I had a tube, but even with that...towards the last 10 days of rads.....and then the 2 months of adjuvant chemo, I was lucky getting 1200 calories in a day....Don't pull your hair out....he's doing good, and so are you!!

    If the Tylenol and Advil are working, then great....if we were looking at a lifetime of taking all these NSDAIDs it would be another story....this is a temporary thing, so I wouldn't worry about the amount of pills.  I would ask the Onc for something stronger tho, than Tylenol 3's....I had liquid Oxy....I didn't use it all the time, but when things got dicey, I had it on hand.   

  • Sailor123
    Sailor123 Member Posts: 97
    #3
    Hi Vicky:
    I understand your

    Hi Vicky:

    I understand your frustration.  There are many ways to skin a cat and none of us really knows which is best.  I had Cispatin 2 treatments.  I also had BOT and lymph node involvement.  I had requested Erbitux because I read it was the best chemo for this particular cancer.  My docs rejected my request and as it turns out the Cisplatin seems to have done the job.  I don't know anything about the other chemo you mentioned.

    I have experienced hearing loss and ringing in my ears but it seems to be getting better.  I'm doubtful it will ever be fully restored but I can live with it.

    It sounds like your doing really well getting the maximum calories in him.  I'm glad he's able to drink anything at this point.  I wasn't able to.  You didn't mention a feeding tube so I guess its really good he's still swallowing.

    I blended a smoothie daily with a raw egg yolk, beets, carotts, keifer, whey, avocado, orange and apple, and many other immune boosting ingredients.  This went into my feeding tube and I lived on it exclusivley for about 6 months.  The nutritionist I saw was a joke.  All they wanted me to take was formula made in a lab.  It had no nutritional value and was loaded with sugar which should be avoided during treatment.  Things will come up, like nutrition, and you will be wise to rely on your own instincts.  The professionals don't always know best.

    Its understandable that you want to pull your hair out.  This is a tough road to travel.  It gets a lot better, but not before it gets worse.  I'm 9 months post treatment and feel REALLY good finally.  I never thought I would get here, but little by little it happens.

    Hang in there.

    Shirley

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
    hi vickiy, I just want to

    hi vickiy, I just want to tell you I am praying for your hubby.  I don't know anything about chemo as I only had rads but i would think the docs know what they're doing and your hubby will be fine. I hope he gets over the cold soon and is feeling much better.

    God bless you,

    dj

  • wmc
    wmc Member Posts: 1,804
    #5
    Extra Strength TYLENOL..acetaminophen Over dose

    Please do not take over 3000mg acetaminophen in 24 hrs. You can do major damage to your liver.

    You can take 800mg motron for pain, or two Advill but I would not take Tylenol inbetween. If the pain it that much he should have his Dr go with Norco  and it has less acetaminophen, which can do major and life threating damage once you go over 3000mg in 24 hrs. Just my opion, but feeling wonky is a lot better than liver damage. If he is taking two inbetween at every four hrs he's at 6000mg.[At least cut it back to one @500mg]

    Sorry he is in so much pain, but there are more OD on acetaminophen than any other meds.

    Bill

  • vickyd123
    vickyd123 Member Posts: 16
    #6
    Thanks Bill, I am glad you

    Thanks Bill, I am glad you brought that to my attention. After reading your post I asked him how much he was actually taking and realized that he was indeed taking way too much. He just started the tylenol two days ago along with the advil so it hasn't been long. He's going to take one instead of two and not as often. He sees his doc on Monday so we'll be asking about something better to manage his pain. Thanks to everyone for all the great information. It is very helpful and much appreciated. I guess I have to be more realistic about all this. I am a fixer of problems by nature and I really thought I could fix this. Well, maybe not fix it, but somehow I thought I could get him through with no weight loss and I see now I can't make him drink my 1000 calorie drinks no matter how hard I try. And I can't alleviate the pain with all my "remedies" I'm going to worry myself into a breakdown if I don't stop. This is a real test for me. I'm a little OCD when it comes to control, and this is so far out of my control that it's causing me a huge amount of anxiety.

    Thanks again!

     

  • wmc
    wmc Member Posts: 1,804
    #7
    vickyd123 said:

    Thanks Bill, I am glad you

    Thanks Bill, I am glad you brought that to my attention. After reading your post I asked him how much he was actually taking and realized that he was indeed taking way too much. He just started the tylenol two days ago along with the advil so it hasn't been long. He's going to take one instead of two and not as often. He sees his doc on Monday so we'll be asking about something better to manage his pain. Thanks to everyone for all the great information. It is very helpful and much appreciated. I guess I have to be more realistic about all this. I am a fixer of problems by nature and I really thought I could fix this. Well, maybe not fix it, but somehow I thought I could get him through with no weight loss and I see now I can't make him drink my 1000 calorie drinks no matter how hard I try. And I can't alleviate the pain with all my "remedies" I'm going to worry myself into a breakdown if I don't stop. This is a real test for me. I'm a little OCD when it comes to control, and this is so far out of my control that it's causing me a huge amount of anxiety.

    Thanks again!

     

    This is VERY hard on the caregiver....

    You are doing what ALL loved ones try to do. Take care of him, you know he is in pain and you just want to make it stop. That is normal. This is very hard on the caregiver. What you can do to help is what you are doing, being there for him and asking questions. When he goes to the Dr it is better if you go with him, as the Dr might say something that throughs him and he will forget all questions he had. Write them down and hand them to the Dr. I did and He wrote the answers on the paper for me.

    Remember you both need to take one day at a time. You need to make sure you get rest so you can be there for him. With you worring and not getting the rest you need is not good for anyone. You both will get through this. 

    Bill

     

  • donfoo
    donfoo Member Posts: 1,771 Member
    #8
    you're dong fine

    There are three things to focus on; nutrition - hydration - pain mangement.

    I love you use protein powders, wish many more would get on that program. When the body is under tremendous stress as cancer treatments the body works extra hard to rebuild itself and consumes a lot more than during normal times. So the figure of 2500-2800 calories is really a figure that barely maintains weight while under stress. It has been reported that the body consumes over 5,000 calories at times so it is no wonder why virtually everyone loses weight no matter how much they eat. Just stick with the high calorie diet. Does not matter if it is fat or protein but those have twice the caloric density than carbs. Personally, if one is struggling to swallow a cup of liquid, why on earth would you drink fruit juice? Drinking the same volume of protein delivers twice the calories.

    Make certain he is getting plenty of fluids. At least 48 ounces a day. There is no faster way to the ER than to let body fluid level drop too far and it is far to easy to let it happen. I tried hard to stay on top of fluids but over the course a few days lapse, ended up in ER for saline to get me back. And does it make you feel great! lol You need to watch fluid intake very carefully and if you feel he is not getting the minumum amount every day, insist on getting a regular visit to get a couple units of saline once a week or as needed.

    Pain mangement - There is no reason to waste time trying to manage cancer treatment related pain with consumer medications. You are playing major league ball and need major league pain meds to even up the match. Don't be afraid of getting addicted or feeling hypocritical dosing on morphine or whatever, just make sure the doctor is fully aware of the level of pain that needs to be managed and make sure he gets sufficient medication to combat the pain. There is no reason to have pain all the time. In fact, pain prevents the body from healing quickly so get the pain under control.

    Carbo is a platinum based chemo and most all studies show it is as effective as cisplatin.  I had induction chemo for nine weeks prior to rads. Taxotere, Cisplatin, and 5FU. A truly evil combination but by the end of the 3 3 week cycles the final report stated the tumors were basically gone (shrunken). The folloiwng rads ensure they were dead for good.

    This battle is something control freaks just have to resign themselves to being in the 3rd row of the minivan. Not great visibility forward and certainly no access to pedals or steering wheels. Just be as educated on the journey and shout out when it looks like you are veering off the road and hopefully course corrections get you back on the less bumpy part of the road. Don't expect to see any smooth tarmac until about 4 weeks post tx.

    Hang in there.

    Don

     

     

     

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