Start tomorrow...didn't see it coming...

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  • delnative
    delnative Member Posts: 450 Member
    #42
    Irishgypsie said:

    Just wanted to add my wishes!
    Hi, Just wanted to add my wishes. Just got the 2nd dose of ciplatin wed; i'm so glad i got the peg. Mark is lucky to have such a great team member. We'll make it! I have 12 more doses to go with one more cisplatin! I just pray it's all worth it!! :)

    Charles

    Emend
    Dittos what Pam said about Emend.
    They pumped enough Cisplatin into me to make a bracelet and a couple of rings, and I think I only threw up twice.
    Please, check it out. Some insurers won't cover it because it's very expensive, but boy, is it worth it.
    Best of luck, and prayers headed your way.

    --Jim in Delaware
  • miccmill
    miccmill Member Posts: 248
    #43
    delnative said:

    Emend
    Dittos what Pam said about Emend.
    They pumped enough Cisplatin into me to make a bracelet and a couple of rings, and I think I only threw up twice.
    Please, check it out. Some insurers won't cover it because it's very expensive, but boy, is it worth it.
    Best of luck, and prayers headed your way.

    --Jim in Delaware

    Thinking of you both
    Kim, I talked to our Hem/Onc Pharmacist at the hospital I work for and he says patients get good results with Emend but also says Aloxi (palonosetron) produces good results for patients receiving Cisplatin.

    Good luck.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #44
    Kimba1505 said:

    Fatigue Nausea, Dry mouth and Stubborn...HELP
    I would say these are the biggest issues. Nausea is from the chemo and should be working itself out soon. (Only to reappear, I know).
    I am having trouble having Mark realize how much he needs to to drink and eat. I get that when nausous the body's instinct is to NOT EAT. But his nausea does not get worse with eating, and he is taking 3 anti-nausea meds. But the drinking...I just went over with him the information from radiation about drinking 64 oz. a day and how dehydration can make you have dry mouth, nausea, and fatigue. It almost seems like he has to find it out for himself; and then we are in a "reacting" place; not the proactive place I have been developing. It is a personal stubborness, or a denial, or a little of both.
    I will take helpful suggestions from care givers and all of you fighting or who have fought and perhaps had to learn the hard way or overcome your own barriers.
    He gets the PEG on Wednesday and then his resistance to eating and drinking will be a little easier for me to overcome.
    It is not a dynamic of our typical relationship for me to push, bully, or insist. This is new territory...and it really matters.
    Jen, I will PM you for recipe swapping. He has very specific requirements for his protein shakes that has made things challenging too. (No milk, not too sweet, too gritty). Sometimes things that are good for you don't taste good!

    Ginger Ale
    Kim, you might try a little ginger ale in helping with Mark's nausea also....

    With me it was more a mental thing usually. Still not easy to over come though. Just thinking of having to have another chemo visit would tend to make me feel nauseaous, even though I never got sick.

    As for the de-hydration...if Mark gets sick from being de-hydrated, he more than likely won't do it again. Beleive me, been there, done that...it's really a bad feeling, and that's if you catch it before it gets too bad.

    I know they have mentioned Emend, which I did have for the three days each time for the heavy chemo (Cisplaten, Taxotere and 5FU), but for the weekly Carboplaten during radiation, they only gave me Zofran.

    The Emend is great, but pricey somewehre in the range of $150 for each capsul. I know that it's worth it if your sick though. The Zofran did knock the edge off somethimes, but not always.

    Sometimes I'm sure Mark probably just becomes a little resistant, it's easy to do when you don't really have any control on your body and they things it's going through. Unfortunately that's just the way it is at this time. You can make it as easy as possible, or as rough as you can stand it.

    Best,
    John
  • Kimba1505
    Kimba1505 Member Posts: 557
    #45
    miccmill said:

    Thinking of you both
    Kim, I talked to our Hem/Onc Pharmacist at the hospital I work for and he says patients get good results with Emend but also says Aloxi (palonosetron) produces good results for patients receiving Cisplatin.

    Good luck.

    Emend
    John, Pam, Jim and Mic he has had the Emend. Also Zofran, Dexatron and Compazine. His neausea is described as "mild" or "low grade". Eating does not make him feel worse. John, I think I am up against something in his head, like you said. I put up a new thread inquiring about the psychological shift from healthy to helpless. I do not want him to learn anything the hard way...but there is a stubborness in this man that I have seen before.
    Thank you for your input.
    Kim
  • staceya
    staceya Member Posts: 720
    #46
    Kimba1505 said:

    Emend
    John, Pam, Jim and Mic he has had the Emend. Also Zofran, Dexatron and Compazine. His neausea is described as "mild" or "low grade". Eating does not make him feel worse. John, I think I am up against something in his head, like you said. I put up a new thread inquiring about the psychological shift from healthy to helpless. I do not want him to learn anything the hard way...but there is a stubborness in this man that I have seen before.
    Thank you for your input.
    Kim

    Good Luck with everything. I
    Good Luck with everything. I sort of had a generalized low grade "poisoned" feeling that lasted for weeks. Usually when things bother me, I take a nap. This has always worked well in the past, but it sure didn't work with this. I went to bed and didn't eat or drink and was making a downward spiral. After a bit, water tasted less like sweat (now it tastes fine) and I could get down some chocolate boost. I didn't have a peg because (well because I am an idiot).. and there was a lot of stress. When he gets the peg, at least you will have less worries, but as everyone has said he still needs to take food orally.
    Does any liquid taste at ALL tolerable...At the very worst (I think week 5..it was liquids only, but milk and boost were too milky, and juices burned, some diluted gatorade was tolerable. Everyone has been through similar and keep marching on. It WILL get better..
    Stacey
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #47
    staceya said:

    Good Luck with everything. I
    Good Luck with everything. I sort of had a generalized low grade "poisoned" feeling that lasted for weeks. Usually when things bother me, I take a nap. This has always worked well in the past, but it sure didn't work with this. I went to bed and didn't eat or drink and was making a downward spiral. After a bit, water tasted less like sweat (now it tastes fine) and I could get down some chocolate boost. I didn't have a peg because (well because I am an idiot).. and there was a lot of stress. When he gets the peg, at least you will have less worries, but as everyone has said he still needs to take food orally.
    Does any liquid taste at ALL tolerable...At the very worst (I think week 5..it was liquids only, but milk and boost were too milky, and juices burned, some diluted gatorade was tolerable. Everyone has been through similar and keep marching on. It WILL get better..
    Stacey

    Sweat....
    LOL, Staceya, I think you are the only other person (me included) that actually desctibed water tasting like sweat...LOL. Water is usually the only thing that really quinches my thirst. During the rads and concurrent chemo even water tasted like sweat....like you (a year post) now it tastes good again and like water...yeah.
  • Greg53
    Greg53 Member Posts: 849
    #48
    Skiffin16 said:

    Sweat....
    LOL, Staceya, I think you are the only other person (me included) that actually desctibed water tasting like sweat...LOL. Water is usually the only thing that really quinches my thirst. During the rads and concurrent chemo even water tasted like sweat....like you (a year post) now it tastes good again and like water...yeah.

    Tastes like...
    Sounds like how I described magic mouthwash.....tastes like a 3 week old dead carp that a cat has peed on and mixed in with battery acid to make it liquid
  • Kimba1505
    Kimba1505 Member Posts: 557
    #49
    Greg53 said:

    Tastes like...
    Sounds like how I described magic mouthwash.....tastes like a 3 week old dead carp that a cat has peed on and mixed in with battery acid to make it liquid

    Good to laugh.
    LOL.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #50
    Greg53 said:

    Tastes like...
    Sounds like how I described magic mouthwash.....tastes like a 3 week old dead carp that a cat has peed on and mixed in with battery acid to make it liquid

    No Taste
    See Greg, sometimes it just isn't so bad not having the ability to taste things.... of course it's nice when it comes back.

    JG
  • j3rey
    j3rey Member Posts: 57
    #51
    Skiffin16 said:

    No Taste
    See Greg, sometimes it just isn't so bad not having the ability to taste things.... of course it's nice when it comes back.

    JG

    You are all amazing
    I love that your humor continues. It gives a lot of hope to those of us just getting started. :)
    Jen
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #52
    j3rey said:

    You are all amazing
    I love that your humor continues. It gives a lot of hope to those of us just getting started. :)
    Jen

    Positive Attitudes
    Jen, you are right in humor and positive attitudes...it makes a huge difference. I am and always have been a jokster and low profile class clown I guess. I can find humor in most any situation, though it might take a while for it to surface under some conditions, LOL....

    Anyways, like you mentioned before, surround Mark and yourselve with positive people. When I was going through treatment I always had someone that wanted to share an experience of someone they knew or know with an illness. I would always stop them and tell them if it didn't end positive, that I'd prefer them to tell me late down the road.

    You can see people at the treatment centers and the difference in ones that are positive and smiling versus the ones that are negative and grumpy. I usually tried to lighten them up a little, sometimes all it takes is a little light humor and a kind word. Sometimes though you just can't get through to them.

    It's like a dog in a fenced yard. A long time ago, I read water and electric meters. I classified dogs in three catagories, nice ones, bad ones and ones you aren't sure about. They'll just look at you and then wait until you get in the yard and then try to bite you....

    But sometimes the not sure dogs just needed a little kindness from me first, and it made a difference on how they accepted me.

    Anyeways, surround yourselves with positive people at this time as much as you can.

    Faith, Family & Friends,
    John
  • finz2lft
    finz2lft Member Posts: 43
    #53
    port installed
    I have squmous cell cancer of left cervical node with occult primary tumor. The Radiologist thinks he knows where the primary is and has ordered another biopsy of tounge and nose area. I have my port installed tomorrow morning. Does that hurt,they have not told ne much. Then PEG, then Dentist, then 35 radiation treatments and 7 chemo treatments. I am not scared, but I am worried about the pain associated with this treatment and how and what to eat and drink. Any help or suggestions. I am still in shock to say the least as I had it all affirmed 2 weeks ago.
  • Kimba1505
    Kimba1505 Member Posts: 557
    #54
    finz2lft said:

    port installed
    I have squmous cell cancer of left cervical node with occult primary tumor. The Radiologist thinks he knows where the primary is and has ordered another biopsy of tounge and nose area. I have my port installed tomorrow morning. Does that hurt,they have not told ne much. Then PEG, then Dentist, then 35 radiation treatments and 7 chemo treatments. I am not scared, but I am worried about the pain associated with this treatment and how and what to eat and drink. Any help or suggestions. I am still in shock to say the least as I had it all affirmed 2 weeks ago.

    Start a new thread
    finz2lft, You have great questions particular to your situtation. I suggest you start a new thread to get all the feedback from the many people who have traveled this road.
    My partner, Mark, has SCC of the left tonsil, had surgery to remove the tonsil and surrounding area, and surgery to remove all his lymph nodes on the left side of his neck, plus the muscle. He began chemo and radiaiton last week and gets his PEG tomorrow. He will probably not have a port in that his chemo is in 3 doses.
    Shock is normal and then you get your head around it and do what you have to do. They say Head and Neck cancers are some of the most curable; but the treatment process, I am sorry to say, is refered to as "brutal".
    You are wise to find yourself here, in that there are folks at all stages of the process. People who are at the beginning who you can relate to, people currently in treatment, who can lead you, and people who have overcome and stay to reassure you.
    Start a thread so all here can get to know you and start getting an amazing amount of support and information that can only strengthen you as you move forward.
    My best to you on this journey,
    Kim
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #55
    finz2lft said:

    port installed
    I have squmous cell cancer of left cervical node with occult primary tumor. The Radiologist thinks he knows where the primary is and has ordered another biopsy of tounge and nose area. I have my port installed tomorrow morning. Does that hurt,they have not told ne much. Then PEG, then Dentist, then 35 radiation treatments and 7 chemo treatments. I am not scared, but I am worried about the pain associated with this treatment and how and what to eat and drink. Any help or suggestions. I am still in shock to say the least as I had it all affirmed 2 weeks ago.

    FINZ2LFT
    Finz, I started a thread for you....

    John

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