loads of questions

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  • Kskokko
    Kskokko Member Posts: 42
    #22
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    Heartburn

    has anyone managed the heartburn with Zantac rather than tums?

  • Kskokko
    Kskokko Member Posts: 42
    #23
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    Nibble

    i understand the need to nibble.    Any suggestions?    what is something bland that I can go to, and has some caloric or nutritional value?    Sometimes bothe sweet and salty do not appeal to me.   

    Bland with calories that I can nibble all day?

  • Kskokko
    Kskokko Member Posts: 42
    edited April 2017 #24
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    mapdan said:

    it will get better

    Kent, I too am new here but went through the same cancer as you. I am 58 years old. Just got my feeding tube out yesterday as a matter of fact. You will survive this. It is a pain in the butt for a while and just gets to be part of you. Rely on it when you need it. My radiation treatments ended last October 2016 (35 treatments - 7 chemo treatments) Stay positive by all means. Life will be different to say the least but life is an adventure anyway. Good luck

    Tube

    why is your tube coming out three months after treatment?

  • Kskokko
    Kskokko Member Posts: 42
    #25
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    Kskokko said:

    Nibble

    i understand the need to nibble.    Any suggestions?    what is something bland that I can go to, and has some caloric or nutritional value?    Sometimes bothe sweet and salty do not appeal to me.   

    Bland with calories that I can nibble all day?

    Animal crackers

    Bland, but no calories 

  • Kskokko
    Kskokko Member Posts: 42
    edited April 2017 #26
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    G tube

    Anyone familiar with this product?   

    NelMed G Tube Holder Catheter Size: 30" - 45" H https://www.amazon.com/dp/B003DQMB0K/ref=cm_sw_r_cp_tai_Cqc4ybWGDTRGA

    I ordered it today.  

  • MMDowns
    MMDowns Member Posts: 318
    edited April 2017 #27
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    Kskokko said:

    Mmdowns

    that is good to know.  I was told to take the prochlorpirazine at the first sign, then another tab later.   It just leaves me so foggy i can barely function.   I am hoping the nausea subsides so I can manage with a few tums.    

    Is that the only anti nausea

    Is that the only anti nausea meds that was prescribed to you? My husband takes Zofran and it doesn't leave him groggy. It's been a god send.  Maybe ask your oncologist for a prescription for Zofran if possible?

  • MMDowns
    MMDowns Member Posts: 318
    #28
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    Kskokko said:

    G tube

    Anyone familiar with this product?   

    NelMed G Tube Holder Catheter Size: 30" - 45" H https://www.amazon.com/dp/B003DQMB0K/ref=cm_sw_r_cp_tai_Cqc4ybWGDTRGA

    I ordered it today.  

    Yes! we have one. Love it!

    Yes! we have one. Love it! Makes the peg tube manageable. 

  • MMDowns
    MMDowns Member Posts: 318
    edited April 2017 #29
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    Kskokko said:

    Nibble

    i understand the need to nibble.    Any suggestions?    what is something bland that I can go to, and has some caloric or nutritional value?    Sometimes bothe sweet and salty do not appeal to me.   

    Bland with calories that I can nibble all day?

    Can you tolerate some Ensure

    Can you tolerate some Ensure or boost? Another product that is high in protein that could help are smoothies made by Bolthouse Farms. They are found at most grocery stores in the health area. The high caloric and protein ones are the best. Or some chicken noodle soup. It's full of protein and the broth is soothing to the stomach.  Eggs are good.  Again, bland but good protein. Those are some suggestions. 

  • Kskokko
    Kskokko Member Posts: 42
    #30
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    MMDowns said:

    Yes! we have one. Love it!

    Yes! we have one. Love it! Makes the peg tube manageable. 

    Thank you

    i wish the surgeon made me aware of this when I had the g tube installeD.    The tube is difficult to deal with.   Currently I cut a hole in a tshirt.  I pass the tube through and pin it to the outside of the shirt.   More manageable. I look forward to getting this belt.   

    Few understand that the surgery, chemo and rad are just part of the proBlem.   There is a huge psychological burden of the loss of things you take for granteD.     The belt may allow me to dress and move more comfortably.   

  • SuzJ
    SuzJ Member Posts: 427 Member
    edited April 2017 #31
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    Kskokko said:

    Heartburn

    has anyone managed the heartburn with Zantac rather than tums?

    Zantac

    currently going thru it same as you, I already took a med for GERD before this, but I have added Zantac back in because the heartburn was just a "bit" too much

  • MMDowns
    MMDowns Member Posts: 318
    #32
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    Kskokko said:

    Thank you

    i wish the surgeon made me aware of this when I had the g tube installeD.    The tube is difficult to deal with.   Currently I cut a hole in a tshirt.  I pass the tube through and pin it to the outside of the shirt.   More manageable. I look forward to getting this belt.   

    Few understand that the surgery, chemo and rad are just part of the proBlem.   There is a huge psychological burden of the loss of things you take for granteD.     The belt may allow me to dress and move more comfortably.   

    You're right! There's a lot

    You're right! There's a lot that we take for granted that we are forced to look at when faced with this cancer.  You will adjust. My husband has and is still adjusting to new issues that arise. However, there are meds and nurses and dr.'s. That can help. Hang in there! 

  • MMDowns
    MMDowns Member Posts: 318
    #33
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    SuzJ said:

    Zantac

    currently going thru it same as you, I already took a med for GERD before this, but I have added Zantac back in because the heartburn was just a "bit" too much

    How're you feeling? I hope

    How're you feeling? I hope you had a better weekend than last! 

  • Kskokko
    Kskokko Member Posts: 42
    edited April 2017 #34
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    Rad burn

    I have had twelve rad sessions.    How do I manage the burned neck?    I put lotion on it, but should I use cold packs?

  • MMDowns
    MMDowns Member Posts: 318
    #35
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    What lotion are you using?

    What lotion are you using?

  • Kskokko
    Kskokko Member Posts: 42
    #36
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    MMDowns said:

    What lotion are you using?

    What lotion are you using?

    Vanicream and aquaphor

    Vanicream and aquaphor

  • MMDowns
    MMDowns Member Posts: 318
    #37
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    It might be time to ask for a

    It might be time to ask for a presciption lotion.  My husband is finally using his.  His neck doesn't hurt but his dr. wanted hin to use it to prevent blistering. 

  • mapdan
    mapdan Member Posts: 33 Member
    #38
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    Kskokko said:

    Tube

    why is your tube coming out three months after treatment?

    sorry for late response on this.

    I had my tube taken out as I had quite using it after that long. I had it in from Aug 2016 until March 2017 and had enough of it. I vowed to drink ensure or boost and eat what I could to get that out of my stomach. Like all say my eating is an adventure now without taste buds and no saliva but I smile every day and happy to be enjoying life. These are small things to deal with now. You will get there. Be positive. On a bright note I had a beautiful lady help care for me through all of this and I asked her to marry me and she said yes so there is a life after all of what you are going through. So to all the caregivers out there I salute you. You go through as much as we do.

  • Kskokko
    Kskokko Member Posts: 42
    #39
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    Kskokko said:

    Rad burn

    I have had twelve rad sessions.    How do I manage the burned neck?    I put lotion on it, but should I use cold packs?

    Cold packs

    is it ok to use a cold pack after treatment?

  • Kapital
    Kapital Member Posts: 52 Member
    #40
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    skin burns

    Hi, My husband used Silvadene cream ( a prescription) at the end of his treatment, when his skin started to get weepy. He put it on, then covered the area with a large Telfa (a non stick type of dressing), and loosely held it in place with a scarf around his neck. It helped so much. Within a few days his skin had healed and he went back to pure Aloe and Aquaphor.

    I believe, cold packs would decrease blood flow, as it constrict blood vessels, perhaps inhibiting healing? (blood flow brings oxygen, which promotes healing) You may also risk the side effect of a frostbite type of burn. I would check with your doctor before using ice. 

  • Kskokko
    Kskokko Member Posts: 42
    #41
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    kskokko update

    If you go to my original post, you will see I had 6 cisplatin and 32 rad trreatments after the rad tonsillectomey and neck dissection.

    I had my last treatment on May 10 and have since been recovering from the trreatments.   When treatment is over, you are far from over, since the treatments do so much damage to the body   

    Here's the short tlist and where I am today

    I will have my follow-up PET scan on 7/25.   Until then they keep the chemo port in as a constant reminder

    I was able to maintain my weight during treatment.    I so hated the gastric tube that I would not use it, so kept pouring the calories in.

    THe gastric port was removed on May 22.   May it burn in Hell.

    Taste

    I had zero taste.   Food had temp and texture.   Since completing treatment some taste has returned and I was told that most would return within three months.   I have about a month to go.    I am able to eat almoast anything, but starches remain a challenge, and full taste has not returned.   Saliva volume was very low and what was there was thick so I would choke on it if I did not have water with me at all times.   Saliva is better.

    Nausea

    It was bad for a few weeks, but they found a combination of meds that worked.   Took several tries. As I reintroduce Real Food, I have bouts of acid reflux.   Since starting on Real Food again, I have lost five pounds

     

    Fatigue

    I tire so easily.    I am forcing myself to go to the gym every day and go to yoga.   I need to push myself and regain my strength and stamina.    I am not capable of much, but I am getting some cardio and some weight bearing exercise.  I don't see any other way of pushing past the fatigue.

    Peripheral Neuropathy

    THis started about the third chemo treatment and was stable until about two months after finishing treatment.    It went from mild to moderate.  It is not painful, but my hands and feet are numb and sore, it it sometimes moves up my arms, across my chestg and back and up my legs.    THe exercise is probably making the neuropathy worse in the short term.    My onc team thinks this will get better with time.   I have been referred to specialty PT for post cancer treatment.   

    Lymphedema

    THe neck tissue still feels like a steel belted radial despite daily stretching and massage.   The lymphedema has gotton worse recently, so this too goes to specialty PT.   Because the neck tissue is so hard, my tongue pulls to the left and I do daily tongue exercises.

    Hearing damage. 

    THe cisplatin damaged my hearing    I lost the range above 4000 Hz.   Also, and this is odd, I hear all women lisping.    THis has been confirmed by the audiologist and speech pathologist.    I thought my wife had developed a lisp until the speech pathologist explained this was part of the damage.

    THis has been a hard road.

     

     

     

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