Just Another Newbie

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txeagle_54
txeagle_54 Member Posts: 15
in Esophageal Cancer #1
For those of you who have not clued in yet, God has a sense of humor! I was diagnosed with type 2 diabetes in 2001. In 2004 I was diagnosed wtih Fibromyalgia. Now on march 16 ,the day before my wife's birthday, I was rushed to the hospital because I was puking blood. Had an endoscopy done but there was too much blood to be sure . A second endoscopy was performed a week later. Then a ct scan. Then my oncologest gave us the dreaded news on April 1st no less! Stage IV EC. I won't bore you all with the roller coaster ride this has been. Y'all know it as well as I do.
The odd thing is that I will be doing great, no pain,no bad side effects,no problems with anything til my DR would ask about a specific thing I would report I was having no problem then boom! Not only would I develope the problem but I would wind up in the hospital.
I had an abcess in my lower bowl,5 days in icu. I foolishly ate a piece of chicken tender,2 days in hospital endoscopy to remove blockage and IV fluids for dehydration.
Last week a pronounced case of hand and foot syndrome,no hospital time but lost 2 more days of work.
I had a ct scan with contrast done yesterday morning . I have my 5th chemo infusion scheduled for tuesday pending the ct scan results.
As I read through some of the posts someone suggested a journal be kept. I very strongly agree! A journal has many uses,keep up with appointments,drugs and procedures.and last but not least it helps to keep up with when the side effects ensue. For instance I know that I have an infusion every three weeks.Two days after the infusion I become cold sensitive. Icannot eat drink or touch anythind under room temp. That really bites (summer in Texas and no iced tea????) But I have about 10 days at the end of a cycle I can eat about anything and it tasts good too. You can also track anything different you are feeling so you can discuss it with your care givers.

What lies ahead for me? Only God knows. I'm no Quitter nd will fight this any way I can.



My name is Ron and I lift my huge glass of iced tea to all who are on this voyageof the unknown and uncertain future with me. Thank God we are not alone. I also salute those of you that care and support a loved one,family member,or good friend. Without your love and support we would be in over our heads.

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  • BMGky
    BMGky Member Posts: 621
    #2
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    Sorry for your diagnosis
    Wow! You've had your hands full. Glad you found this site. Sorry for the circumstances that brought you here. There are many Stage IV members in this group who have excellent information to give you as you continue your treatments. I know they will soon be posting. Please keep posting so members can help. You gave good information about possible side effects. I had not seen that particular "cold sensitivity" mentioned before. All information and nuances of the treatment and care are helpful. Caregiver to husband Stage IIB 15 months post-op.
  • Unknown
    Unknown
    #3
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    This comment has been removed by the Moderator
  • txeagle_54
    txeagle_54 Member Posts: 15
    #4
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    BMGky said:

    Sorry for your diagnosis
    Wow! You've had your hands full. Glad you found this site. Sorry for the circumstances that brought you here. There are many Stage IV members in this group who have excellent information to give you as you continue your treatments. I know they will soon be posting. Please keep posting so members can help. You gave good information about possible side effects. I had not seen that particular "cold sensitivity" mentioned before. All information and nuances of the treatment and care are helpful. Caregiver to husband Stage IIB 15 months post-op.

    i shall post more soon i must get ready for work now if it is slow tonight i will try to get back here. thank for the welcome
  • txeagle_54
    txeagle_54 Member Posts: 15
    #5
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    unknown said:

    This comment has been removed by the Moderator

    Y'all made me smile today I shall get back asap with the details you asked about I must get ready now for work while I still have a job! Ron
  • txeagle_54
    txeagle_54 Member Posts: 15
    #6
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    BMGky said:

    Sorry for your diagnosis
    Wow! You've had your hands full. Glad you found this site. Sorry for the circumstances that brought you here. There are many Stage IV members in this group who have excellent information to give you as you continue your treatments. I know they will soon be posting. Please keep posting so members can help. You gave good information about possible side effects. I had not seen that particular "cold sensitivity" mentioned before. All information and nuances of the treatment and care are helpful. Caregiver to husband Stage IIB 15 months post-op.

    cold sensetivity
    the cold sensetivity is profound in my case. anything under room temp be it food ,drink,door handles grabbing a cold door handle is like gragging a porkypine myspelling sometimes is rough. so anyway right after an infusion of oxlliplatin i get out the gloves and resign myself to about 10 days of dodging the needles and pins . sigh warm diet dr pepper aint too bad.
    i need to check in with a couple more folks then hit the sack. twas a looooooong 12 hrs last night and have 2 more 12 hr shifts staring me in the face !
  • txeagle_54
    txeagle_54 Member Posts: 15
    #7
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    BMGky said:

    Sorry for your diagnosis
    Wow! You've had your hands full. Glad you found this site. Sorry for the circumstances that brought you here. There are many Stage IV members in this group who have excellent information to give you as you continue your treatments. I know they will soon be posting. Please keep posting so members can help. You gave good information about possible side effects. I had not seen that particular "cold sensitivity" mentioned before. All information and nuances of the treatment and care are helpful. Caregiver to husband Stage IIB 15 months post-op.

    cold sensetivity
    the cold sensetivity is profound in my case. anything under room temp be it food ,drink,door handles grabbing a cold door handle is like gragging a porkypine myspelling sometimes is rough. so anyway right after an infusion of oxlliplatin i get out the gloves and resign myself to about 10 days of dodging the needles and pins . sigh warm diet dr pepper aint too bad.
    i need to check in with a couple more folks then hit the sack. twas a looooooong 12 hrs last night and have 2 more 12 hr shifts staring me in the face !
  • txeagle_54
    txeagle_54 Member Posts: 15
    #8
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    unknown said:

    This comment has been removed by the Moderator

    darn it
    sighs yall aint gonna believe this but I have been typing for an hour trying to answer your questions. All at once my screen flickered and poof it all wen away out in never never land. I promise to get all your answers and then some but it may be mon night or tuesday night after my infusion. it was a long 12 hrs last night and i have 2 more lookin at me sat and sun night mon morning i shall collapse in bed yeppers maybe mon night
  • Daisylin
    Daisylin Member Posts: 365
    #9
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    txeagle_54 said:

    darn it
    sighs yall aint gonna believe this but I have been typing for an hour trying to answer your questions. All at once my screen flickered and poof it all wen away out in never never land. I promise to get all your answers and then some but it may be mon night or tuesday night after my infusion. it was a long 12 hrs last night and i have 2 more lookin at me sat and sun night mon morning i shall collapse in bed yeppers maybe mon night

    gotta hate that....
    You may want to remember to highlight and copy your responses before you post them. this site is great, but the "poof, it's all disappeared" thing happens often. If you have it copied, you can just repost it and send it again.

    Hope you are having a good day, and that you are tolerating the infusions well.
    Chantal
  • Ericalynn
    Ericalynn Member Posts: 200
    #10
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    txeagle_54 said:

    darn it
    sighs yall aint gonna believe this but I have been typing for an hour trying to answer your questions. All at once my screen flickered and poof it all wen away out in never never land. I promise to get all your answers and then some but it may be mon night or tuesday night after my infusion. it was a long 12 hrs last night and i have 2 more lookin at me sat and sun night mon morning i shall collapse in bed yeppers maybe mon night

    Poof
    The same thing happened to me the first time I tried to post something. I now write my post in word and copy & paste the finished product to the post. A little extra work on the front end but much less frustration when the system eats all of your hard work. Added bonus for me SPELL Check (terrible speller) LOL
    Get some sleep-12 hours shifts are rough!
    Erica
  • cher76
    cher76 Member Posts: 292
    #11
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    Fellow Texan
    Ron,
    Howdy, and welcome to our site. I always feel strange saying "welcome" as this is not a place I would wish on my worst enemy, but we are glad you have found us none the less. We also are from Texas. My husband,Rickie, aged 54, was diagnosed stage IV with mets to the bones in October 2010. We have been receiving treatment at MD Anderson, as we live in the very southern tip of our great state and felt Houston was the best place to treat this. Rickie started out with TFOX treatment, then was on a clinical study involving a placebo, and is currently taking a second round of Erbitux and Irinotechan. For these two rounds we have had our doctor at MDAnderson prescribe the treatment, and our oncologist at home administers it. This has worked out well for us, and we have all scans and testing done at MDA. I will not tell you that this has been an easy journey, but we are doing well. Since October Rickie has lost over 100 lbs, but in some ways that has helped as his blood pressure has gone down to normal. You have to keep an eye out for the silver linings! He also is not a "quitter" and is determined to fight this with all he has. Would like to know where you are being treated and "compare"notes. So far we have not found anyone else near us dealing with this. Our future may be uncertain, but we know that "through Him, all things are possible!"
    Cheryl
  • txeagle_54
    txeagle_54 Member Posts: 15
    #12
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    cher76 said:

    Fellow Texan
    Ron,
    Howdy, and welcome to our site. I always feel strange saying "welcome" as this is not a place I would wish on my worst enemy, but we are glad you have found us none the less. We also are from Texas. My husband,Rickie, aged 54, was diagnosed stage IV with mets to the bones in October 2010. We have been receiving treatment at MD Anderson, as we live in the very southern tip of our great state and felt Houston was the best place to treat this. Rickie started out with TFOX treatment, then was on a clinical study involving a placebo, and is currently taking a second round of Erbitux and Irinotechan. For these two rounds we have had our doctor at MDAnderson prescribe the treatment, and our oncologist at home administers it. This has worked out well for us, and we have all scans and testing done at MDA. I will not tell you that this has been an easy journey, but we are doing well. Since October Rickie has lost over 100 lbs, but in some ways that has helped as his blood pressure has gone down to normal. You have to keep an eye out for the silver linings! He also is not a "quitter" and is determined to fight this with all he has. Would like to know where you are being treated and "compare"notes. So far we have not found anyone else near us dealing with this. Our future may be uncertain, but we know that "through Him, all things are possible!"
    Cheryl

    welcome y'all
    Hmmmmm Brownsville or Port Isabel Maybe farther inland? McAllan Mission? No matter What most other folks here do not understand unless they have tried to drive across Texas is the shear size of our great state. And yes I would wish this site on my worst enemy because there are so many helpful folks here that there is literally someone here for everyone to help,hug,inform,or just cry with you when it gets to be too much.The only reason i am not being treated at md anderson is the dr i have here did his internship there and is still on the trials board . there is nothing that i qualify for at this time i too being a big Texan have lost almost 50 lbs in four months. and wouldn't miss another forty or so.
    I am being treated by dr James Uwyeki about 5 min from my home. We live about 25 miles south of austin inn a town called Kyle. One of tthe fastest growing areas in the USA. 5 years ago there were about 3000 folks here , today there is over 40,000.
    my treatment is on a 21 day cycle ,I get an infusion of oxaliplatin,epirubicin,some liquid dexamethasone and some nausea juice and iv fluids to chase it down. the next day I take pill form dexamethasone, more antinausia pills 3 xeloda 500mg each once in the morning and once in the evening. ofcourse protonics. by the way the steroid stuff drives mt blood sugat over the moon! I go in tomorrow morning tues 7/18 for my next infusion. i had a ct scan thursday so i will find out if things are shrinking or growing or spreading. i shall let everyone know tomorrow night if I dont feel too bad. I really need to write some more of the great folks here and try to answer some of their questions. feel free to give me a shout here if you need to talk or even just vent Ron
  • txeagle_54
    txeagle_54 Member Posts: 15
    #13
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    Ericalynn said:

    Poof
    The same thing happened to me the first time I tried to post something. I now write my post in word and copy & paste the finished product to the post. A little extra work on the front end but much less frustration when the system eats all of your hard work. Added bonus for me SPELL Check (terrible speller) LOL
    Get some sleep-12 hours shifts are rough!
    Erica

    thanks for the advice between my fat fingers and lack of formal training in typing9was once asked if i used the correct fingers to typr with. I said I reckon so they are the only ones i got??
  • txeagle_54
    txeagle_54 Member Posts: 15
    #14
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    Daisylin said:

    gotta hate that....
    You may want to remember to highlight and copy your responses before you post them. this site is great, but the "poof, it's all disappeared" thing happens often. If you have it copied, you can just repost it and send it again.

    Hope you are having a good day, and that you are tolerating the infusions well.
    Chantal

    I find it more amusing to not use spell check for 2 reasons 1 some mispelled words in the wrong places really makes for an interesting conversation 2 it helps keep up my facade of being a dumb old country hick.......smiling
  • txeagle_54
    txeagle_54 Member Posts: 15
    #15
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    unknown said:

    This comment has been removed by the Moderator

    sighs did it again
    could i get y'all e mail addy i want to answer all your questions mine is
    txeagle_54@hotmail.com
    i do not mind giving it out ,I have friends in high and low places if someone messes with my account.....

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