My Sweetheart has cancer

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Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    You had us prepared

    Phrannie,

    You had us well prepared for alot along this wild cancer ride.

    Like you he dislikes Aquaphor, prefers Calendula and I just went straigt to the Burts Bees.  Warning....it comes in different colors.

    He is not fond of either Boost or Ensure (very sweet) so I purchased a Ninja blender and chop everything and add protein powder.  Lots of fruit smoothies at the moment.  I know it will get worse though and this will not work for too long. I will need to find something he likes since Dr. Kaplan really wants him swallowing as much as possible.

    Thanks again for all the great tips.  I'm sure you will hear from me again soon.  Take care.

    Christine

    Survival

    Just as a side note....

    Ensure and Boost have tons of calories, minerals and vitamins..., more than likely much more than you or he can pack in than real food at the time.

    There will come a point that you/he, will just be consuming calories for survival, and water for hydration...

    Enjoyment from either food or water will be non-existant..., for several weeks.

    Just throwing that out there..., there is going to be a period where he either can't taste, doesn't like the taste, or just doesn't feel like taking in calories or hydration..., both will land him in the hospital before you realize it.

    Not trying to discourage you, and do all that he can tolerate for as long as can be, but realize it might change over time, and that's when you do whatever you have to do to survive.

    Staying ahead of the game is key...

    Best,

    John

  • HelenBack
    HelenBack Member Posts: 87 Member

    You had us prepared

    Phrannie,

    You had us well prepared for alot along this wild cancer ride.

    Like you he dislikes Aquaphor, prefers Calendula and I just went straigt to the Burts Bees.  Warning....it comes in different colors.

    He is not fond of either Boost or Ensure (very sweet) so I purchased a Ninja blender and chop everything and add protein powder.  Lots of fruit smoothies at the moment.  I know it will get worse though and this will not work for too long. I will need to find something he likes since Dr. Kaplan really wants him swallowing as much as possible.

    Thanks again for all the great tips.  I'm sure you will hear from me again soon.  Take care.

    Christine

    Orgain

    Just want to put another plug in for a product called Orgain. It's a sort of natural, food-based, answer to boost and ensure. It's really not too sweet. I don't know why those others have to be sooo sweet. Making your own is ideal but I always have these on hand for those unexpectedly long doctors appointments and whatnot. 

    They are a bit more expensive, but you can shop around online to get a better price. Usually, they sell for about 3 dollars each and if I see them at a price closer to 2 dollars, I snatch 'em up.

    Are you guys doing rads at stanford? They sell it in the cafeteria if you want to try it first. 

    I swear, I don't work for thje company, but I'm a fan. 

    glad to hear you guys are doing okay.

    Jon will start his last week on monday. he's doing great and we can't wait to ring that bell!

    Helen

  • Christine Gabrielle
    Christine Gabrielle Member Posts: 20
    HelenBack said:

    Orgain

    Just want to put another plug in for a product called Orgain. It's a sort of natural, food-based, answer to boost and ensure. It's really not too sweet. I don't know why those others have to be sooo sweet. Making your own is ideal but I always have these on hand for those unexpectedly long doctors appointments and whatnot. 

    They are a bit more expensive, but you can shop around online to get a better price. Usually, they sell for about 3 dollars each and if I see them at a price closer to 2 dollars, I snatch 'em up.

    Are you guys doing rads at stanford? They sell it in the cafeteria if you want to try it first. 

    I swear, I don't work for thje company, but I'm a fan. 

    glad to hear you guys are doing okay.

    Jon will start his last week on monday. he's doing great and we can't wait to ring that bell!

    Helen

    Thanks for the Tip!

    Helen,

    Thank you for the tip about Orgain.  Alan's complaint is that both Ensure and Boost are very sweet.  I guess radidation hasn't killed that taste bud just yet.  Chemo kicked him in the butt this last week but he is starting to regain a little energy.  We walk daily to hopefully keep his energy up.  We are going to JMMC and Contra Costa Oncololgy for his Chemo and Radiation. 

    Helen I am so happy that Jon is doing well and that you are nearing the end of this journey. We have met so many wonderful people on this path and I'm sure you have as well.  Let me know when we can start celebrating, we will have a toast to Jon and his success (and yours).

     

    Cheers!

    Christine

  • phrannie51
    phrannie51 Member Posts: 4,716
    Skiffin16 said:

    Survival

    Just as a side note....

    Ensure and Boost have tons of calories, minerals and vitamins..., more than likely much more than you or he can pack in than real food at the time.

    There will come a point that you/he, will just be consuming calories for survival, and water for hydration...

    Enjoyment from either food or water will be non-existant..., for several weeks.

    Just throwing that out there..., there is going to be a period where he either can't taste, doesn't like the taste, or just doesn't feel like taking in calories or hydration..., both will land him in the hospital before you realize it.

    Not trying to discourage you, and do all that he can tolerate for as long as can be, but realize it might change over time, and that's when you do whatever you have to do to survive.

    Staying ahead of the game is key...

    Best,

    John

    Just seconding what John has said....

    by the time he gets 3/4 of the way thru rads the chances are he won't be able to taste anything any way, especially sweet.  Longtermsurvivor taught me about counting the gulps it takes to get a can down.  I don't like the taste of either no way Jose...but once taste was on the way out, I just counted the gulps....usually 10 to 13 and the deed was done....calories are in, and I don't have to worry about it again for a while.  There were two things I was terrified of going into treatment....starving to death and losing my swallower.....I didn't heed the warnings about hydration well enough, and found myself on the other end of a bag several days in a row....dehydration makes a person so weak, so sick, feel so bad I didn't know what was going on with me.  Once rehydrated it was night and day....I didn't allow that happen again, when I couldn't drink water, I was pouring it down my tube by the clock.....had to give up drinking when thirsty, eating when hungry.....gotta do it by the clock to keep up with the body's needs.

    p

  • Bootsierose82
    Bootsierose82 Member Posts: 4
    My husband was diagnosed with snuc recently

    Hi , my husband was diagnosed with sinal nasal undiffericiated carcinoma recently 4-17 13. We have had to travel 7 hours for his treatment in Dallas Texas. He has already started treatment  on Monday with radiation and chemo. He  has been given the nausea meds already but he is still very nauseated. Is this normal? The nurse at the Dr. Office says its important for him to take the nausea meds. He was also prescribed Ativan for anxiety . Does Ativan also help with nausea also?  He is also having some constipation problems , I guess because of all the meds he is taking ( painkillers and nausea meds) I just need advice on how to help him through this. He was very healthy before all this happened.    Thanks any advice is truley appreciated.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    My husband was diagnosed with snuc recently

    Hi , my husband was diagnosed with sinal nasal undiffericiated carcinoma recently 4-17 13. We have had to travel 7 hours for his treatment in Dallas Texas. He has already started treatment  on Monday with radiation and chemo. He  has been given the nausea meds already but he is still very nauseated. Is this normal? The nurse at the Dr. Office says its important for him to take the nausea meds. He was also prescribed Ativan for anxiety . Does Ativan also help with nausea also?  He is also having some constipation problems , I guess because of all the meds he is taking ( painkillers and nausea meds) I just need advice on how to help him through this. He was very healthy before all this happened.    Thanks any advice is truley appreciated.

    Welcome ....

    All of what you mention is common, but he also doesn't have to stay nauseated. If  his meds aren't working, let them know and try something different.

    Myself and others that had multiple doses of chemo simultaneous were given Emend, best stuff ever, but expensive and you only take it each day of the first three.

    During concurrent like your hubby I had Zofran, or phennigrin or similar..., just to knock the edge off.

    One thing that I highly recommend, stay very, very well hydrated. That will make you sick and put you in the hospital quick..., lack of hydration.

    The anxiety meds work great for the mask if he's having issues, worked like a charm for me, but after a week I could handle the routine without meds..

    Stay a head of the pain and you'll be much better off...

    We were all in perfect health, other than having cancer...

    He'll make it through, it's rough, but very doable...

    Check out the SuperThread, it has tons of excellent information...

    Best ~ John

  • Bootsierose82
    Bootsierose82 Member Posts: 4
    Skiffin16 said:

    Welcome ....

    All of what you mention is common, but he also doesn't have to stay nauseated. If  his meds aren't working, let them know and try something different.

    Myself and others that had multiple doses of chemo simultaneous were given Emend, best stuff ever, but expensive and you only take it each day of the first three.

    During concurrent like your hubby I had Zofran, or phennigrin or similar..., just to knock the edge off.

    One thing that I highly recommend, stay very, very well hydrated. That will make you sick and put you in the hospital quick..., lack of hydration.

    The anxiety meds work great for the mask if he's having issues, worked like a charm for me, but after a week I could handle the routine without meds..

    Stay a head of the pain and you'll be much better off...

    We were all in perfect health, other than having cancer...

    He'll make it through, it's rough, but very doable...

    Check out the SuperThread, it has tons of excellent information...

    Best ~ John

    Nauseated hubby

    Thanks so much for the advice. He got up this morning feeling a little better. I will most definitely chek out the threads and stay on top of things. Thank you for the warm welcome and God bless!

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Nauseated hubby

    Thanks so much for the advice. He got up this morning feeling a little better. I will most definitely chek out the threads and stay on top of things. Thank you for the warm welcome and God bless!

    No Problem...

    Post up your question on a new thread and you'll get many more welcomes and responses I'm sure...

    The SuperThread is the first thread on this forum, compiled by many with tons of links and great sources of info...

    Best,

    John

  • ET@cowboy
    ET@cowboy Member Posts: 15

    Great News Pat

    Thanks alot for calming my nerves on this issue.  My husband had his surgery one week ago today, came home late Sunday and has walked around the block 3 times every day since.  He is swallowing pretty well at the moment and that is with reconstruction to his neck/throat.  He is a young 63 year old with a bit of weight he can afford to lose.  So I will not press him on the feeding tube issue.  Thanks again Pat.

     

    Christine

    TORS

    Good morning,  I had Tors in Feb and neck dissection in march. same issues with the carotid artery and neck reconstruction. Once he feels good pack on the weight before Radiation. I wouldn't believed radiation would be more painful than surgery but it is. After surgery you begin to heal. During Rad it gets worse the longer it goes. HPV+ SCC is extremely treatable. The info on this site is spot on. The side effects will come just pray for less intense ones. Even though it is hard at times remain positive. Its like a bad ride at an amusement park. Everyone here will tell you it will get better. Good luck with the rest of the trip.

  • ET@cowboy
    ET@cowboy Member Posts: 15

    Great News Pat

    Thanks alot for calming my nerves on this issue.  My husband had his surgery one week ago today, came home late Sunday and has walked around the block 3 times every day since.  He is swallowing pretty well at the moment and that is with reconstruction to his neck/throat.  He is a young 63 year old with a bit of weight he can afford to lose.  So I will not press him on the feeding tube issue.  Thanks again Pat.

     

    Christine

    TORS

    Good morning,  I had Tors in Feb and neck dissection in march. same issues with the carotid artery and neck reconstruction. Once he feels good pack on the weight before Radiation. I wouldn't believed radiation would be more painful than surgery but it is. After surgery you begin to heal. During Rad it gets worse the longer it goes. HPV+ SCC is extremely treatable. The info on this site is spot on. The side effects will come just pray for less intense ones. Even though it is hard at times remain positive. Its like a bad ride at an amusement park. Everyone here will tell you it will get better. Good luck with the rest of the trip.

  • Christine Gabrielle
    Christine Gabrielle Member Posts: 20

    My husband was diagnosed with snuc recently

    Hi , my husband was diagnosed with sinal nasal undiffericiated carcinoma recently 4-17 13. We have had to travel 7 hours for his treatment in Dallas Texas. He has already started treatment  on Monday with radiation and chemo. He  has been given the nausea meds already but he is still very nauseated. Is this normal? The nurse at the Dr. Office says its important for him to take the nausea meds. He was also prescribed Ativan for anxiety . Does Ativan also help with nausea also?  He is also having some constipation problems , I guess because of all the meds he is taking ( painkillers and nausea meds) I just need advice on how to help him through this. He was very healthy before all this happened.    Thanks any advice is truley appreciated.

    This is what worked for us!

    Good morning!

    You have just described what we have been living through the last 2 weeks. We have been told to really stay ahead of the nausea so he takes Prilosec every morning.  There is something in it that curbs nausea and doesn't have the same effects as other nausea meds.  As you have found out one of the biggest side effects is constipation. You need to ask your husbands nurse these questions as he may need something to move his bowels immediatley. But here is what we are doing to stay ahead of the problem. Be sure and ask his Dr. or Nurse prior to trying any of this.

    • He eats a oatmeal with prunes for breakfast (somedays he can only get Ensure down) so this is only when he can swallow well
    • He takes 2 Colace - 100mg  (stool softener)
    • 1 glass of Miralax
    • If he feels bound up he takes both the Colace and Miralax in the evening as well.

    The Ativan will help him relax and sleep, that in itself seems to help him not to feel sick.  As with your husband, my husband Alan is very healthy other than this.

    The people in this discussion board are wonderful, this is where I come for all my answers and they always seem to have the right one.  They have lived this and survived it!  God bless everyone of them.

    Christine

  • Bootsierose82
    Bootsierose82 Member Posts: 4
    Skiffin16 said:

    Welcome ....

    All of what you mention is common, but he also doesn't have to stay nauseated. If  his meds aren't working, let them know and try something different.

    Myself and others that had multiple doses of chemo simultaneous were given Emend, best stuff ever, but expensive and you only take it each day of the first three.

    During concurrent like your hubby I had Zofran, or phennigrin or similar..., just to knock the edge off.

    One thing that I highly recommend, stay very, very well hydrated. That will make you sick and put you in the hospital quick..., lack of hydration.

    The anxiety meds work great for the mask if he's having issues, worked like a charm for me, but after a week I could handle the routine without meds..

    Stay a head of the pain and you'll be much better off...

    We were all in perfect health, other than having cancer...

    He'll make it through, it's rough, but very doable...

    Check out the SuperThread, it has tons of excellent information...

    Best ~ John

    Nauseated hubby

    Thanks so much for the advice. He got up this morning feeling a little better. I will most definitely chek out the threads and stay on top of things. Thank you for the warm welcome and God bless!

  • Bootsierose82
    Bootsierose82 Member Posts: 4

    This is what worked for us!

    Good morning!

    You have just described what we have been living through the last 2 weeks. We have been told to really stay ahead of the nausea so he takes Prilosec every morning.  There is something in it that curbs nausea and doesn't have the same effects as other nausea meds.  As you have found out one of the biggest side effects is constipation. You need to ask your husbands nurse these questions as he may need something to move his bowels immediatley. But here is what we are doing to stay ahead of the problem. Be sure and ask his Dr. or Nurse prior to trying any of this.

    • He eats a oatmeal with prunes for breakfast (somedays he can only get Ensure down) so this is only when he can swallow well
    • He takes 2 Colace - 100mg  (stool softener)
    • 1 glass of Miralax
    • If he feels bound up he takes both the Colace and Miralax in the evening as well.

    The Ativan will help him relax and sleep, that in itself seems to help him not to feel sick.  As with your husband, my husband Alan is very healthy other than this.

    The people in this discussion board are wonderful, this is where I come for all my answers and they always seem to have the right one.  They have lived this and survived it!  God bless everyone of them.

    Christine

    Feeling a little better

    Christine, 

                 Good afternoon! thanks for the advice, I will definitely try all you have suggested. We are mixing Ensure with ice cream and a little milk,he seems to like it. I'm trying my best to keep him hydrated , he seems to like Gatorade to water. Thanks again  for all this info. God bless !

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member

    Feeling a little better

    Christine, 

                 Good afternoon! thanks for the advice, I will definitely try all you have suggested. We are mixing Ensure with ice cream and a little milk,he seems to like it. I'm trying my best to keep him hydrated , he seems to like Gatorade to water. Thanks again  for all this info. God bless !

    Just remember that

    Boost and Ensure area mostly water.  The point being that, if oral intake is limited, and both calories and water are necessary, gatorade isn't a need.  I had a month or more when my mouth was so sore I had a real struggle getting anything down.  I didn't drink water, therefore, I drank boost.  I got in enough to handle my calorie needs AND my fluid needs at the same time.  Just a little thought for the future.   

     

    Pat

  • connieprice1
    connieprice1 Member Posts: 300 Member
    Treatment

    Christine,    My wife Connie had Base of Tongue Cancer. Her cancer was Stage 4 and was inoperable and she did chemotherapy & radiation. At first, we were heart broken to find out her cancer was inoperable. But after 1 week of chemotherapy Connie had a dramatic response to Chemotherapy and her swollen lymph nodes were reduced to normal size after her first treatment. We were overwhelmed with happiness that the chemo & radiation might just work. Connie was diagnosed with cancer Oct. 2010 and finished her last radiation treatments in Apr. 2011. She has had clean scans ever since. We have been blessed to be able to be living a "new normal" life and love to visit our grandkids every chance we get. Connie cannot eat spicy food but that is a small price to pay for life. Try to keep a positive attitude for your husband that he will get through this and hopefully he will get through his treatments and get back to a normal life. The treatment is rough but the reward of Life is worth it. A nurse told us at the beginning to just take treatment one day at a time. Remember prayer is powerful and your doctors and the Almighty God will get you through this. If he can eat right now, try to get him to eat as much as possible as weight loss will happen with treatment over time. We were against a peg tube at first but later Connie and I both knew she needed one inserted so she could get the invaluable nutrition as she got to where she could not eat. So hang in there and listen to your doctors and someday you will be looking back a this as a test of yours and your husbands love and relationship that will help you get through all the "ups and downs of treatment"           Wishing you both the Best, Homer & Connie Price

  • Christine Gabrielle
    Christine Gabrielle Member Posts: 20
    Nearly done!

    Only 4 more rads and one more Chemo.  This time next week Alan will be finished with his treatments.  He has done very well considering he opted not to have a PEG.  He has only lost 19lbs. his beer belly is now gone.  He plans on replacing it as soon as he gets some taste buds back. 

    I will never be able to thank all of you enough for your help through this process.  Your wisdom, suggestions and encouragement made this horrific ride so much more managable.  So many of your suggestions were the keys to his success and ability to manage without the PEG.  We understand that we still have a ways to go after treatment is finished, but it is the mending side and we are prepared because of you.

    God Bless everyone of you!

    Love,Christine

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Nearly done!

    Only 4 more rads and one more Chemo.  This time next week Alan will be finished with his treatments.  He has done very well considering he opted not to have a PEG.  He has only lost 19lbs. his beer belly is now gone.  He plans on replacing it as soon as he gets some taste buds back. 

    I will never be able to thank all of you enough for your help through this process.  Your wisdom, suggestions and encouragement made this horrific ride so much more managable.  So many of your suggestions were the keys to his success and ability to manage without the PEG.  We understand that we still have a ways to go after treatment is finished, but it is the mending side and we are prepared because of you.

    God Bless everyone of you!

    Love,Christine

    Awesome News...

    Always glad to hear great news...

    John

  • hwt
    hwt Member Posts: 2,328 Member
    Skiffin16 said:

    Awesome News...

    Always glad to hear great news...

    John

    Christine

    That is fantastic news. Other than a bout of thrush (I had several) my post tx time was rather uneventful. That's when my neck turned dark brown but never oozed or burned and I think week 3 I lost the hair between my ears in the back, otherwise, the healing process started fairly quickly for me. I hope the same for your husband.

    Candi