has anyone NOT used a peg?

2

Comments

  • Rick2924
    Rick2924 Member Posts: 23
    Skiffin16 said:

    Rough Road
    It's a rough road no matter, I also had 7000cGy or rads, whatever the unit is they measure, concuurent with Carboplaten. But in addition I had nine weeks of Cisplaten, Taxotere and 5FU.

    Sorry to hear of your reoccurance, how long after the initial treatment did the reoccurance show?

    Did you also have high or mulitple doses of chemo before or after the concurrent? Interesting the differing methods of treatment we all have for similar cancers.

    Thanks for sharing your experience as well....

    John

    TX
    John:
    They found my recurrance 14 months after I ended radiation. Before the radiation I had 3 cycles of induction chemo-72 hours each of Cisplatin, Taxotere and 5FU on an inpatient basis. I had 10 days off between each cycle. I had a selective neck dissection (levels II, III, IV). Path report looks good.
    Rick
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Rick2924 said:

    TX
    John:
    They found my recurrance 14 months after I ended radiation. Before the radiation I had 3 cycles of induction chemo-72 hours each of Cisplatin, Taxotere and 5FU on an inpatient basis. I had 10 days off between each cycle. I had a selective neck dissection (levels II, III, IV). Path report looks good.
    Rick

    skiffin
    thanks, john. i am still having trouble posting. grrrrrrr. i am about ready to put my foot thru my lap top screen. @#$%^&*in thing! my sicilian temper doth boil over........
  • stevenl
    stevenl Member Posts: 587

    skiffin
    thanks, john. i am still having trouble posting. grrrrrrr. i am about ready to put my foot thru my lap top screen. @#$%^&*in thing! my sicilian temper doth boil over........

    Sicilian
    Sicilian EH? Now I know what I like about you. Fuget about it.

    Steve
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    skiffin
    thanks, john. i am still having trouble posting. grrrrrrr. i am about ready to put my foot thru my lap top screen. @#$%^&*in thing! my sicilian temper doth boil over........

    Bella Ragazza
    LOL, you know my name is actually Guiseppi..although it's my last name some how....
  • SASH
    SASH Member Posts: 421 Member
    Going through treatment without peg
    I went through 10 weeks of radiation with 10 simultaneous chemos without a PEG. I dropped from 230 pounds to 135 fully clothed. I am over 6'1" so it wasn't a good look. Because of the pain of swallowing, which I did daily, but even after radiation was over it was very painful and the amounts I was able to swallow were smaller each day. By the end I was taking in a single glass of Gatorade for a total of 70 calories.

    I would agree that you would want to take in as much by mouth during treatment, but having the PEG as a backup when it is too painful is a good alternative. I wish I had it now that it is all behind me as I think I might have tolerated treatment a bit better if I was able to keep my strength up by getting in a decent amount of calories per day.

    At one point one of the Rad Onc wanted to have the tube put in because I was losing too much weight, but I refused. If it gets to that point, please don't refuse and still get as much by mouth as possible but you can supplement with the tube. This will keep the muscles active but might limit the pain your husband may be while trying to swallow.
  • JULIA DRIVER
    JULIA DRIVER Member Posts: 1
    PEG
    Hey JEN, I am currently in treatment for vocal cord cancer, SCC Stage 1. I have had 31 radiation treatments to my neck and I did not have a PEG. I have lost no weight and in my 7th week of treatment, I am still eating, just have to chew carefully and take it slow. I have not had to take much in the way of pain meds at all. Everyone reacts differently. I have a pretty high pain thresh hold and knew all along if I needed to, I could get a PEG at any time. I am aware that I fall in probably the 10% of people that breeze through this. My treatment is the IMRT, my lymph nodes in my neck were treated for 5 weeks, 5 days a week and now only my larynx is being treated in what is called the "boost". Feel like I am so close to completing treatment now, I would not put in a PEG and I have a few extra pounds I could afford to lose. A lot of getting through this is attitude and determination. My RO thinks one of the reasons I have done so well is the fact that I am still eating "real food" and staying well hydrated. I actually have gained 5 lbs. I was told to eat at least 3,000 calories a day and I have enjoyed every minute of it. Hope all goes well for your husband. This is survivable.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member

    PEG
    Hey JEN, I am currently in treatment for vocal cord cancer, SCC Stage 1. I have had 31 radiation treatments to my neck and I did not have a PEG. I have lost no weight and in my 7th week of treatment, I am still eating, just have to chew carefully and take it slow. I have not had to take much in the way of pain meds at all. Everyone reacts differently. I have a pretty high pain thresh hold and knew all along if I needed to, I could get a PEG at any time. I am aware that I fall in probably the 10% of people that breeze through this. My treatment is the IMRT, my lymph nodes in my neck were treated for 5 weeks, 5 days a week and now only my larynx is being treated in what is called the "boost". Feel like I am so close to completing treatment now, I would not put in a PEG and I have a few extra pounds I could afford to lose. A lot of getting through this is attitude and determination. My RO thinks one of the reasons I have done so well is the fact that I am still eating "real food" and staying well hydrated. I actually have gained 5 lbs. I was told to eat at least 3,000 calories a day and I have enjoyed every minute of it. Hope all goes well for your husband. This is survivable.

    Welcome
    Welcome, Julia. Glad to hear they caught your C very early, and you are doing so well. Reckon you woulda mentioned Chemo if you also got that, and you didn't- so you didn't. Must advise you that the standard of H&N is Chemo and Rads, and hope your ENT and Rad Dr. are correct in their diagnosis of your C condition. I truly do hope that is not due cause for concern with you going forward. Were you treated at a major cancer med center?

    Please understand, Julia, that "real food," isn't an option for most of us during much of the time of our treatment, and some even beyond treatment. With my Chemo delivery, I wasn't given an option as to whether or not to get a PEG and Port- and they had to be installed before any treatment. I was told this with my very first Onco office visit, Julia, because of the Chemo delivery they had planned for me, with full H&N rads (20 places/session). I was also told I'd be on morphine. That was my very first office visit, Julia, and they had a real good idea where this would take me. And they were right. Real Food stopped being an option at the end of week #1. Pancakes did enter my life late in week #9, if I remember right. Nutrition is critical for all who go thru C&R, and the common sense of a PEG for the C&R of H&N is an easy thing to figure. Again, I am happy for you, and truly do hope your ENT is correct in his diagnosis of your C condition- as I'm sure we all are. As we all were happy for MaryRC, truly, we are happy for you, too, Julia.



    kcass
  • staceya
    staceya Member Posts: 720
    Kent Cass said:

    Welcome
    Welcome, Julia. Glad to hear they caught your C very early, and you are doing so well. Reckon you woulda mentioned Chemo if you also got that, and you didn't- so you didn't. Must advise you that the standard of H&N is Chemo and Rads, and hope your ENT and Rad Dr. are correct in their diagnosis of your C condition. I truly do hope that is not due cause for concern with you going forward. Were you treated at a major cancer med center?

    Please understand, Julia, that "real food," isn't an option for most of us during much of the time of our treatment, and some even beyond treatment. With my Chemo delivery, I wasn't given an option as to whether or not to get a PEG and Port- and they had to be installed before any treatment. I was told this with my very first Onco office visit, Julia, because of the Chemo delivery they had planned for me, with full H&N rads (20 places/session). I was also told I'd be on morphine. That was my very first office visit, Julia, and they had a real good idea where this would take me. And they were right. Real Food stopped being an option at the end of week #1. Pancakes did enter my life late in week #9, if I remember right. Nutrition is critical for all who go thru C&R, and the common sense of a PEG for the C&R of H&N is an easy thing to figure. Again, I am happy for you, and truly do hope your ENT is correct in his diagnosis of your C condition- as I'm sure we all are. As we all were happy for MaryRC, truly, we are happy for you, too, Julia.



    kcass

    I may end up with a PEG even
    I may end up with a PEG even at this late point, (6 weeks after rads)as it is SO hard to maintain nutrition. And I mean maintain in the wrong sense,as in not continue to lose weight. I was reading (did I see it here somewhere first?) that 20% of head and neck patients due of malnutrition rather than of their disease..
    It is a lot harder than I thought it would be not to lose weight.
    Stacey
  • Ibuild4u
    Ibuild4u Member Posts: 5
    To Have or NOT to have PEG TUBE...??
    Jen,
    My husband has NPC/SCC/T1/N2/MO Stage 3...We fought for two weeks NOT to have the PEG installed..until his weight started dropping drastically.. We are through Chemo and Radiation and 5-FU as of April 12th? Thank God we had a "proactive" Radiation Oncologist..!!. My husband has lost 85 pounds to date,and still has the feeding tube. The 5-FU Treatment totally reaks havoc on his mouth and takes 2-3 weeks to even swallow without Morphine,and Carafate Rinse.We stick strictly to the Nurtren #1, and #2 being feed through the tube due to a clogged tube and another having to be installed (painful)..I do add protein powder to the nutren trying to boost his muscle repair...But we FLUSH..FLUSH..FLUSH..with water after each feeding.Please know we did not want the tube either...But if you take care of it..It will be your Husband"s second "best friend" (besides you)..We are hoping our Journey is coming to an end"God Willing".. You will find this site a respite those long nights at the Hospital when you need a "friend"

    He began with 35 straight days radiation...Mixed with (3) rounds of concurrent Chemo ( I think they try to bring you to the brink of dying to kill the Cancer)...It has been brutal...We had Cisplatin until he lost 50% of his hearing,and Oncolgists said one more round and he could lose 100%. Third round was Carboplatin..

    If I can give you any advice..It would be to tell your Husband he MUST be his own "medical advocate"..ASK what and why,at the Dr's Office,as well as while he is in the Hospital..Sometimes the Nurses might get frustrated..But a Good Oncolgist" does NOT..

    OUR prayers are with you as you begin your Journey..May you be blessed with BEST Medical Team to make this journey more tolerable..!!
  • sweetblood22
    sweetblood22 Member Posts: 3,228

    PEG
    Hey JEN, I am currently in treatment for vocal cord cancer, SCC Stage 1. I have had 31 radiation treatments to my neck and I did not have a PEG. I have lost no weight and in my 7th week of treatment, I am still eating, just have to chew carefully and take it slow. I have not had to take much in the way of pain meds at all. Everyone reacts differently. I have a pretty high pain thresh hold and knew all along if I needed to, I could get a PEG at any time. I am aware that I fall in probably the 10% of people that breeze through this. My treatment is the IMRT, my lymph nodes in my neck were treated for 5 weeks, 5 days a week and now only my larynx is being treated in what is called the "boost". Feel like I am so close to completing treatment now, I would not put in a PEG and I have a few extra pounds I could afford to lose. A lot of getting through this is attitude and determination. My RO thinks one of the reasons I have done so well is the fact that I am still eating "real food" and staying well hydrated. I actually have gained 5 lbs. I was told to eat at least 3,000 calories a day and I have enjoyed every minute of it. Hope all goes well for your husband. This is survivable.

    julia
    I am thrilled that you are having minimal side effects with your radiation. That is beyond outstanding! I pray everyday that those in treatment are somehow spared the serious physical pain I went thru. I have never, ever in my life have been in more physical pain than when I went thru radiation. I am not a whimp. Prior to this experience I had never even taken anything stronger than an ibuprofen. I had a biopsy under my tongue that required 7 stitches and toughed it out without a pain killer. With my rads I was on 75mcgs of Fentanyl, and there were times I was delerious with pain.


    I am not trying to be confrontational or anything, but I am sort of taking exception with:

    "A lot of getting through this is attitude and determination. My RO thinks one of the reasons I have done so well is the fact that I am still eating "real food" and staying well hydrated. I actually have gained 5 lbs. I was told to eat at least 3,000 calories a day and I have enjoyed every minute of it. Hope all goes well for your husband. This is survivable."

    Yes a great deal of surviving cancer is a great attitude and determination. I can assure you I am made of steel, and rocks; with everything I have been thru in my life I would have been toast years ago if I wasn't. BUT a body has physical limitations. People react different ways. When your throat closes because of radiation damage all the determination in the world will not help you swallow, believe me. There were times I had to stand over the sink because my mouth would not stop bleeding. I mean BAD. One day going home in the car the roof of my mouth slagged off in a sheet. Beyond painful. There was no way I could eat or drink.


    I maintained my weight thru radiation and the complications came after. I tried like heck to gain weight before radiation, and ate like a madwoman, but did no good. I also put a ton of water in me, and still got dehydrated and also struggled with my potassium level.

    My doctors said they never saw a patients mouth as bad as mine, period. I could not eat or drink for months. I am still unable to eat, and I will say I am pretty miserable about it. If I could eat because of my sheer will, grit and determination that I have in me, I would be nawing on a huge cheesesteak right now from my favorite Italian place. Trust me.

    Apologies if I am coming off like an ****, but I have seen too many patients with great grit and resolve down to 88lbs like me. I just want to make the point again that too many head and neck cancer patients die of malnutrition.

    I firmly believe we all make our treatment decisions, and if someone decides against a PEG, hey that's cool. But don't think that if you have serious grit, and determination to keep eating, that will be enough to be able to keep swallowing, because sometimes it isn't.
  • staceya
    staceya Member Posts: 720

    julia
    I am thrilled that you are having minimal side effects with your radiation. That is beyond outstanding! I pray everyday that those in treatment are somehow spared the serious physical pain I went thru. I have never, ever in my life have been in more physical pain than when I went thru radiation. I am not a whimp. Prior to this experience I had never even taken anything stronger than an ibuprofen. I had a biopsy under my tongue that required 7 stitches and toughed it out without a pain killer. With my rads I was on 75mcgs of Fentanyl, and there were times I was delerious with pain.


    I am not trying to be confrontational or anything, but I am sort of taking exception with:

    "A lot of getting through this is attitude and determination. My RO thinks one of the reasons I have done so well is the fact that I am still eating "real food" and staying well hydrated. I actually have gained 5 lbs. I was told to eat at least 3,000 calories a day and I have enjoyed every minute of it. Hope all goes well for your husband. This is survivable."

    Yes a great deal of surviving cancer is a great attitude and determination. I can assure you I am made of steel, and rocks; with everything I have been thru in my life I would have been toast years ago if I wasn't. BUT a body has physical limitations. People react different ways. When your throat closes because of radiation damage all the determination in the world will not help you swallow, believe me. There were times I had to stand over the sink because my mouth would not stop bleeding. I mean BAD. One day going home in the car the roof of my mouth slagged off in a sheet. Beyond painful. There was no way I could eat or drink.


    I maintained my weight thru radiation and the complications came after. I tried like heck to gain weight before radiation, and ate like a madwoman, but did no good. I also put a ton of water in me, and still got dehydrated and also struggled with my potassium level.

    My doctors said they never saw a patients mouth as bad as mine, period. I could not eat or drink for months. I am still unable to eat, and I will say I am pretty miserable about it. If I could eat because of my sheer will, grit and determination that I have in me, I would be nawing on a huge cheesesteak right now from my favorite Italian place. Trust me.

    Apologies if I am coming off like an ****, but I have seen too many patients with great grit and resolve down to 88lbs like me. I just want to make the point again that too many head and neck cancer patients die of malnutrition.

    I firmly believe we all make our treatment decisions, and if someone decides against a PEG, hey that's cool. But don't think that if you have serious grit, and determination to keep eating, that will be enough to be able to keep swallowing, because sometimes it isn't.

    Sweetblood..when did your
    Sweetblood..when did your complications start after rads? About 3 weeks post rad are when things started getting worse for me. I will go in next week and see if we can ID anything fixable. I remember the big tongue slough--it came off it strips. As I was spitting it out in the sink, I though this does not make sense! I am up 2 pounds to 91..but I keep losing it again. It seemed that it had been been getting a bit better for you for a while. One day you mentioned eating a very tasty wrap..does it go up and down?
    Thanks
    Stacey
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    staceya said:

    Sweetblood..when did your
    Sweetblood..when did your complications start after rads? About 3 weeks post rad are when things started getting worse for me. I will go in next week and see if we can ID anything fixable. I remember the big tongue slough--it came off it strips. As I was spitting it out in the sink, I though this does not make sense! I am up 2 pounds to 91..but I keep losing it again. It seemed that it had been been getting a bit better for you for a while. One day you mentioned eating a very tasty wrap..does it go up and down?
    Thanks
    Stacey

    hey stacey
    It might be tasty. i dunno. Everything still tastes like salty wall paper paste to me. Uhmm, somedays I can get a "whole wrap" down. Takes at least an hour. It is tough, lemme tell you. Not really enjoyable to eat. Painful. I choke and gag. But man I keep trying. I keep trying to eat different stuff thinking one day I will find the holy grail. Something "sweet" can eat and swallow that tastes good.

    Lemme see I think maybe it started 3 or so weeks after I stopped? I had a wicked peak of pain and nasty side effects after they stopped radiation and I continued to cook. It was most unpleasant. I then got gaggy. Massive dry heaves. Then that led to nausea. All of a sudden every time I put in a can, right back out it came. I have no clue what happened, but it snowballed, and I went from 125-130 to 88lbs. They really should have gotten me that pump earlier. I do much better with it going in slowly. It is a pain in the **** to be hooked up for 12 hours tho.

    Eeew. Your tongue peeled off? Woman, that is worse than the roof of the mouth I think. My tongue is still killin me. Feels scalded. So many foods still burn my mouth. My mouth is already in pain, and then you stick something in it and try an chew, and it just aggrevates it, and makes it more painful. It sucks. I used to love Vitamin water, cause I hate normal water. I cannot even tolerate that. Burns like heck. I drink Bolthouse farms Mocha Cappuccino, and Hazelnut drinks. They actually make my tongue feel better. I also get the Strawberry Banana, Blue Goodness, and the Berry Boost. When I drink the fruit ones I add a tiny Hagen Daz vanilla ice cream. 250 cals! Sometimes I get almond milk for something different. I like the chocolate.

    I do better if I eat alone. I really have to concintrate. LOL. My dad made me come up and try raviolis a couple sundays ago. I warned them I could gag and cack at the table. Might not be pretty. They said fine. But then my neices friend was there. I am like, great. I could not get the ravioli down. I ended up choking on it. Then it kills me cause I can't eat it and I have to look at it. Sometimes I try to put stuff in my chopper, or emulsifier and puree it first. I have such a bad gag reflex with mushy stuff, that it usually doesn't work. Plus it is hard to find things that don't burn my mouth. It is really frustrating.

    I just realized you said you had felt worse at three weeks. I'll tell you, it throws you for a loop that you continue to get worse before you get better after treatment. It's tough. Hang in there sweat pea. You will probably be okay in time. Don't forget, I was down a salivary gland before going in to radiation. Plus I have that stupid blood disorder, so I am sure that has made it harder for me. I think since it has basically been a year since I stopped treatment that this will probably be as good as I am going to get. Grrr.

    I was up to 98 or 99, and then I dropped down to 93 cause I was so stressed about that stupid mamogram. I swear it takes forever to gain, and three days to lose. WTH?

    Keep trying Stacey. If you need to get the peg, then you get it. You do what you gotta do kiddo. You know I am pulling for you. You can always feel free to vent to me. Anything I can do to help. Sorry for the long babble. I think I am over tired. LOL me and my little monster went to PetCo today. I got Noah a front carrier. We then went shopping at my old store to see my former employees. Have not seen them forever!!!! Then I put a blanket over him, and he looked like a baby, and we went into Wallyworld. LOL But then he got hot, and stuck his head out, and it was so funny when people saw him. LOL I know that they must have thought I was insane. He got too hot, and I had to take the blanket down. I figured screw it what are they gonna do kick me out? It said companion dogs were welcome. He has been my THERAPY for the last year. LOL. The check out lady thought he was so cute. I could see he was getting cranky at this point, and a bit growly. So I smiled at the lady and said, "Yes he is. He is my therapy dog. Can't pet him while he is working." LOL. I am tired from lugging his chubby keister for three hours. Maybe I can sneak him in the movies next time I go. Then I won't be by myself. I am so lame.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Ibuild4u said:

    To Have or NOT to have PEG TUBE...??
    Jen,
    My husband has NPC/SCC/T1/N2/MO Stage 3...We fought for two weeks NOT to have the PEG installed..until his weight started dropping drastically.. We are through Chemo and Radiation and 5-FU as of April 12th? Thank God we had a "proactive" Radiation Oncologist..!!. My husband has lost 85 pounds to date,and still has the feeding tube. The 5-FU Treatment totally reaks havoc on his mouth and takes 2-3 weeks to even swallow without Morphine,and Carafate Rinse.We stick strictly to the Nurtren #1, and #2 being feed through the tube due to a clogged tube and another having to be installed (painful)..I do add protein powder to the nutren trying to boost his muscle repair...But we FLUSH..FLUSH..FLUSH..with water after each feeding.Please know we did not want the tube either...But if you take care of it..It will be your Husband"s second "best friend" (besides you)..We are hoping our Journey is coming to an end"God Willing".. You will find this site a respite those long nights at the Hospital when you need a "friend"

    He began with 35 straight days radiation...Mixed with (3) rounds of concurrent Chemo ( I think they try to bring you to the brink of dying to kill the Cancer)...It has been brutal...We had Cisplatin until he lost 50% of his hearing,and Oncolgists said one more round and he could lose 100%. Third round was Carboplatin..

    If I can give you any advice..It would be to tell your Husband he MUST be his own "medical advocate"..ASK what and why,at the Dr's Office,as well as while he is in the Hospital..Sometimes the Nurses might get frustrated..But a Good Oncolgist" does NOT..

    OUR prayers are with you as you begin your Journey..May you be blessed with BEST Medical Team to make this journey more tolerable..!!

    Being your own advocate....
    Couldn't agree more...

    I know I was blessed with not having such a terrible time considering I didn't have a PEG. I did have 5FU pumped through me 24/7 for three separate weeks. Also had three rounds of Cisplaten, with three rounds of Taxotere thown in for good measure. Then seven rounds of Carboplaten, Oh and don't forget the 30+ injections of Amifostine before each of the 35 head shots of radiation from the IMRT rotating to nine different locations to my throat as I was strapped to the table....LOL.

    I asked questions, seeked experience from others (CSN H&N is awesome), gave most of the doctors and nurses a fit...(when I could get away with it).

    When I go in (as like yesterday - port flush), they laugh and say, "OH NO, here comes trouble", and the newbies just going though treatment look at me strangly....LOL. I know what they're in for, where they're heading, been there, done that....ask me about.

    Cheers to all of us Survivors....

    John
  • staceya
    staceya Member Posts: 720

    hey stacey
    It might be tasty. i dunno. Everything still tastes like salty wall paper paste to me. Uhmm, somedays I can get a "whole wrap" down. Takes at least an hour. It is tough, lemme tell you. Not really enjoyable to eat. Painful. I choke and gag. But man I keep trying. I keep trying to eat different stuff thinking one day I will find the holy grail. Something "sweet" can eat and swallow that tastes good.

    Lemme see I think maybe it started 3 or so weeks after I stopped? I had a wicked peak of pain and nasty side effects after they stopped radiation and I continued to cook. It was most unpleasant. I then got gaggy. Massive dry heaves. Then that led to nausea. All of a sudden every time I put in a can, right back out it came. I have no clue what happened, but it snowballed, and I went from 125-130 to 88lbs. They really should have gotten me that pump earlier. I do much better with it going in slowly. It is a pain in the **** to be hooked up for 12 hours tho.

    Eeew. Your tongue peeled off? Woman, that is worse than the roof of the mouth I think. My tongue is still killin me. Feels scalded. So many foods still burn my mouth. My mouth is already in pain, and then you stick something in it and try an chew, and it just aggrevates it, and makes it more painful. It sucks. I used to love Vitamin water, cause I hate normal water. I cannot even tolerate that. Burns like heck. I drink Bolthouse farms Mocha Cappuccino, and Hazelnut drinks. They actually make my tongue feel better. I also get the Strawberry Banana, Blue Goodness, and the Berry Boost. When I drink the fruit ones I add a tiny Hagen Daz vanilla ice cream. 250 cals! Sometimes I get almond milk for something different. I like the chocolate.

    I do better if I eat alone. I really have to concintrate. LOL. My dad made me come up and try raviolis a couple sundays ago. I warned them I could gag and cack at the table. Might not be pretty. They said fine. But then my neices friend was there. I am like, great. I could not get the ravioli down. I ended up choking on it. Then it kills me cause I can't eat it and I have to look at it. Sometimes I try to put stuff in my chopper, or emulsifier and puree it first. I have such a bad gag reflex with mushy stuff, that it usually doesn't work. Plus it is hard to find things that don't burn my mouth. It is really frustrating.

    I just realized you said you had felt worse at three weeks. I'll tell you, it throws you for a loop that you continue to get worse before you get better after treatment. It's tough. Hang in there sweat pea. You will probably be okay in time. Don't forget, I was down a salivary gland before going in to radiation. Plus I have that stupid blood disorder, so I am sure that has made it harder for me. I think since it has basically been a year since I stopped treatment that this will probably be as good as I am going to get. Grrr.

    I was up to 98 or 99, and then I dropped down to 93 cause I was so stressed about that stupid mamogram. I swear it takes forever to gain, and three days to lose. WTH?

    Keep trying Stacey. If you need to get the peg, then you get it. You do what you gotta do kiddo. You know I am pulling for you. You can always feel free to vent to me. Anything I can do to help. Sorry for the long babble. I think I am over tired. LOL me and my little monster went to PetCo today. I got Noah a front carrier. We then went shopping at my old store to see my former employees. Have not seen them forever!!!! Then I put a blanket over him, and he looked like a baby, and we went into Wallyworld. LOL But then he got hot, and stuck his head out, and it was so funny when people saw him. LOL I know that they must have thought I was insane. He got too hot, and I had to take the blanket down. I figured screw it what are they gonna do kick me out? It said companion dogs were welcome. He has been my THERAPY for the last year. LOL. The check out lady thought he was so cute. I could see he was getting cranky at this point, and a bit growly. So I smiled at the lady and said, "Yes he is. He is my therapy dog. Can't pet him while he is working." LOL. I am tired from lugging his chubby keister for three hours. Maybe I can sneak him in the movies next time I go. Then I won't be by myself. I am so lame.

    Sweetblood,
    Thanks so much

    Sweetblood,
    Thanks so much for the info..
    Your dog sounds very sweet!!I used to have a siamese cat that I carried in a front pack in the house because she would meow and meow if you didn't carry her around. At least I could use my arms when she was in the snugli and my kids thought it was hysterical..
    The tongue (it was only the underneath part) was much more disgusting than painful, although the throat made up for any pain I might be missing! Sorry about the ravioli, I grew up in an Italian neighborhood in Brooklyn and hope to eat ravioli again some day.
    I will try the almond milk.
    What was your old store?
    Thanks again
    Stacey
  • turtle08
    turtle08 Member Posts: 2
    peg
    hi jen.i'm almost three years out of treatment.i really wasn't given an option about having a peg.it was also about the last thing to be removed.having said all that-it was the right way to go.i hated it,but it was the best for me.lots of hurdles ahead of you-so if the drs. think it will help-then that's the way to go.i know how your husband feels-i was the same way.best of luck to you both.wish i had found this site when i first started my little adventure.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    turtle08 said:

    peg
    hi jen.i'm almost three years out of treatment.i really wasn't given an option about having a peg.it was also about the last thing to be removed.having said all that-it was the right way to go.i hated it,but it was the best for me.lots of hurdles ahead of you-so if the drs. think it will help-then that's the way to go.i know how your husband feels-i was the same way.best of luck to you both.wish i had found this site when i first started my little adventure.

    No Option, and 3 Years!
    Also not given an option, that does make the "three years" exceptionally sweet to read, turtle08. Would like to know of your Chemo delivery- which Chemo(s), and how were they delivered- drips? And what was the time involved in the Chemo delivery?

    And which were you- NPC, tongue, tonsil, larynx, etc.?

    Still have my PEG (had since 1/29/09), but am seeing a Surgeon on Tuesday about getting it yanked- by either him, or me. Kept my mask, as so many others also have, and am thinking I'll take the PEG home with me, too. Best friend there for a couple months, you know.

    Glad to hear of your success, Turtle08.

    kcass
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    staceya said:

    Sweetblood,
    Thanks so much

    Sweetblood,
    Thanks so much for the info..
    Your dog sounds very sweet!!I used to have a siamese cat that I carried in a front pack in the house because she would meow and meow if you didn't carry her around. At least I could use my arms when she was in the snugli and my kids thought it was hysterical..
    The tongue (it was only the underneath part) was much more disgusting than painful, although the throat made up for any pain I might be missing! Sorry about the ravioli, I grew up in an Italian neighborhood in Brooklyn and hope to eat ravioli again some day.
    I will try the almond milk.
    What was your old store?
    Thanks again
    Stacey

    stacey
    I missed your post. Oops. Siamese are funny, they are so vocal! They are cool cats.

    I managed a shoe store called, The Shoe Dept. They also have Shoe Show, Alteir Shoes, and Shoebilee.

    Today I kind of tasted my food. :) I softened a 6" corn tortilla in butter in a skillet, sprinkled with montery jack and colby cheese, a little bit of pureed pinto beans, a bit more cheese, guacamole, and rolled up. Topped it with a coleslaw salad I made with cabbage and carrots, sour cream, curry powder and a tiny bit of ranch dip. It was hard to get down, took 45 minutes, but i did it. :) Noah got one bite. he is lucky, cause he usually gets nothing. I have found that a little sour cream seems to coat my tongue and make things bearable instead of burny.

    I also bought other new things to try. I think Kent i think it was, said pancakes were good for him. I am going to try one with a big glass of milk. I actually also had a treat of some chocolate cake! A couple of bites. I also had some zucchini. I want my dad to cook it for me. It will taste better. lol.
  • staceya
    staceya Member Posts: 720

    stacey
    I missed your post. Oops. Siamese are funny, they are so vocal! They are cool cats.

    I managed a shoe store called, The Shoe Dept. They also have Shoe Show, Alteir Shoes, and Shoebilee.

    Today I kind of tasted my food. :) I softened a 6" corn tortilla in butter in a skillet, sprinkled with montery jack and colby cheese, a little bit of pureed pinto beans, a bit more cheese, guacamole, and rolled up. Topped it with a coleslaw salad I made with cabbage and carrots, sour cream, curry powder and a tiny bit of ranch dip. It was hard to get down, took 45 minutes, but i did it. :) Noah got one bite. he is lucky, cause he usually gets nothing. I have found that a little sour cream seems to coat my tongue and make things bearable instead of burny.

    I also bought other new things to try. I think Kent i think it was, said pancakes were good for him. I am going to try one with a big glass of milk. I actually also had a treat of some chocolate cake! A couple of bites. I also had some zucchini. I want my dad to cook it for me. It will taste better. lol.

    I LOVE shoes!!
    Your lunch

    I LOVE shoes!!
    Your lunch sounds FAB! I am glad you were able to taste it.
    I might try some sour cream on things. How long was it before ranch dressing did not burn? I have not been able to have any dressing yet. Of course I am still mostly eating jello, so the dressing hasn't really been a factor!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    staceya said:

    I LOVE shoes!!
    Your lunch

    I LOVE shoes!!
    Your lunch sounds FAB! I am glad you were able to taste it.
    I might try some sour cream on things. How long was it before ranch dressing did not burn? I have not been able to have any dressing yet. Of course I am still mostly eating jello, so the dressing hasn't really been a factor!

    shoes
    oh sweetie, you and I would get along fab! I wish I had my own house and not crammed in one tiny beroom. Most of my things are in my storage shed. A lot of my shoes are there. :( I probably have 250? pairs??? I have a shoe fetish. There are people who when they see me automatically look at my feet to see what I am wearing. LOL. One man I know gave me a tiny book on shoes. GORGEOUS! Louboutins, Dior, LV, and beautiful shoes thru the ages. Amazing.

    When I was in treatment and would go thru the RO's office the girls would look over the counter to check out my shoes and outfit every day. Even the docs and nurses. One time I went "casual". (my usual style is smart casual, if I go casual, I am mostly dressy. I love skirts and dresses and lady like clothing.) Anyway, I wore a pair of camo pants, they tie at bottom, and I pulled them up a little, just below knee, a pair of straw and leather wedge thong sandals, a fushia t shirt and olive military style jacket. Anyway, the staff did not approve. LOL. I walked in that day, and passed out! LOL. They had to give me potassium and fluids that day. The one nurse said it was because I wasn't dressed to the nines like I always was. She said my body rebelled. They all were so nice there. A couple of the nurses gave me gifts on my last day! I was so touched! My step mom made TONS of cookies trays for everyone. They loved us. :)

    Actually, the ranch dressing still burns. I can't eat jello at all, that burns really bad for some reason. Water burns. Actually everything burns. I tried a sweet pickle the other day. That was stupid!
  • staceya
    staceya Member Posts: 720

    shoes
    oh sweetie, you and I would get along fab! I wish I had my own house and not crammed in one tiny beroom. Most of my things are in my storage shed. A lot of my shoes are there. :( I probably have 250? pairs??? I have a shoe fetish. There are people who when they see me automatically look at my feet to see what I am wearing. LOL. One man I know gave me a tiny book on shoes. GORGEOUS! Louboutins, Dior, LV, and beautiful shoes thru the ages. Amazing.

    When I was in treatment and would go thru the RO's office the girls would look over the counter to check out my shoes and outfit every day. Even the docs and nurses. One time I went "casual". (my usual style is smart casual, if I go casual, I am mostly dressy. I love skirts and dresses and lady like clothing.) Anyway, I wore a pair of camo pants, they tie at bottom, and I pulled them up a little, just below knee, a pair of straw and leather wedge thong sandals, a fushia t shirt and olive military style jacket. Anyway, the staff did not approve. LOL. I walked in that day, and passed out! LOL. They had to give me potassium and fluids that day. The one nurse said it was because I wasn't dressed to the nines like I always was. She said my body rebelled. They all were so nice there. A couple of the nurses gave me gifts on my last day! I was so touched! My step mom made TONS of cookies trays for everyone. They loved us. :)

    Actually, the ranch dressing still burns. I can't eat jello at all, that burns really bad for some reason. Water burns. Actually everything burns. I tried a sweet pickle the other day. That was stupid!

    Shoes are great--
    I love to

    Shoes are great--
    I love to go thrifting and find fun shoes. Every now and then, I buy a new pair of shoes. The ones in the picture are from Poetic License (check out their website-they have the coolest shoes) and they were a completing radiation gift from my aunt.
    I will take whatever cheering up I can get right now!
    I hope the pickle was good--I am not even close to brave enough to try.
    I would love a real sour pickle..we do not have any here in Montana.
    Also we had 3 inches of snow today-Fabulous!!