Three Years, and Counting

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Comments

  • stayingpositive
    stayingpositive Member Posts: 89
    #22
    So many posting this got pushed to page two
    I've been keeping up with page one stuff so much I haven't even gone to the second page or even past that. I can't wait till I can say the same thing you've posted. The rad doc did mention to my wife on the last session that he had "tripled" the normal radiation doses the last week of my therapy, so whats "normal" ??? Also the onco said he is double dosing me on the Interferon for the first four weeks (5x a week), I didn't ask him what a normal dose was and since i'm doing it for 48 weeks 3x a week after intial month, why the heavy kick-start?
    Dang yet another thing i've got to write down....

    Keep staying positive

    Bill
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #23
    stayingpositive said:

    So many posting this got pushed to page two
    I've been keeping up with page one stuff so much I haven't even gone to the second page or even past that. I can't wait till I can say the same thing you've posted. The rad doc did mention to my wife on the last session that he had "tripled" the normal radiation doses the last week of my therapy, so whats "normal" ??? Also the onco said he is double dosing me on the Interferon for the first four weeks (5x a week), I didn't ask him what a normal dose was and since i'm doing it for 48 weeks 3x a week after intial month, why the heavy kick-start?
    Dang yet another thing i've got to write down....

    Keep staying positive

    Bill

    Melanoma
    Did they do any surgical removal of the lump by your ear? Read up some about melanoma, and what your's is classified as. Most of us have Small Cell that's a bit different. Seems logical to me that if they did no surgical removal of your lump, then your team is trying to blast it to smithereens with the rads, but that's just a guess. Hope it works for you.

    Have two co-workers who are on Interferon right now as part of their hepatitus treatment, and they've told me it kicks the snot out of them in terms of sapping their energy. They only take it once a week, and feel it for days afterwards. I got no clue of what their actual doseage is, but are getting it once/week for a year. I see a lot of Europe frowns on Interferon, but part of that might be the expense of Interferon therapy. Am aware that back in 2008 England, with their government healthcare, only was allowing for one PS/CT per person (with the original diagnosis), and cost is the alleged reason.

    Hopes and Prayers, Bill

    kcass
  • stayingpositive
    stayingpositive Member Posts: 89
    #24
    Kent Cass said:

    Melanoma
    Did they do any surgical removal of the lump by your ear? Read up some about melanoma, and what your's is classified as. Most of us have Small Cell that's a bit different. Seems logical to me that if they did no surgical removal of your lump, then your team is trying to blast it to smithereens with the rads, but that's just a guess. Hope it works for you.

    Have two co-workers who are on Interferon right now as part of their hepatitus treatment, and they've told me it kicks the snot out of them in terms of sapping their energy. They only take it once a week, and feel it for days afterwards. I got no clue of what their actual doseage is, but are getting it once/week for a year. I see a lot of Europe frowns on Interferon, but part of that might be the expense of Interferon therapy. Am aware that back in 2008 England, with their government healthcare, only was allowing for one PS/CT per person (with the original diagnosis), and cost is the alleged reason.

    Hopes and Prayers, Bill

    kcass

    Yes on the surgery
    Yeah, they removed the lump behind my ear (lymphnode) surgically and 48 others down my neck, leaving a 12 inch scar to boot. My throat is so sore from the radiation i'm wondering why the didn't offer a tube, it actually feels like they tried to burn out my tonsils. I hate it but i'm forcing myself to swallow and eat knowing the Interferon is gonna drain me and leave me not wanting to do anything but sleep and since i'm on it for the next year i'll probably drop 30 pounds and already i'm at what I need to be at 5 foot 10 inches i'm 150 pounds, so if I drop 30 pounds i'll be like 120 and dangerously thin.
    I'm going to have to inject myself three times a week after the initial month double dose sessions, so I guess the hepititus is not as agressive a treatment?

    The onco said it would make me feel like I have a really bad hangover and i'll not want to even get out of bed. So if your co-workers are only getting once a week and have a down time of two days then my 3x a week is going to put me out for the year.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #25
    stayingpositive said:

    Yes on the surgery
    Yeah, they removed the lump behind my ear (lymphnode) surgically and 48 others down my neck, leaving a 12 inch scar to boot. My throat is so sore from the radiation i'm wondering why the didn't offer a tube, it actually feels like they tried to burn out my tonsils. I hate it but i'm forcing myself to swallow and eat knowing the Interferon is gonna drain me and leave me not wanting to do anything but sleep and since i'm on it for the next year i'll probably drop 30 pounds and already i'm at what I need to be at 5 foot 10 inches i'm 150 pounds, so if I drop 30 pounds i'll be like 120 and dangerously thin.
    I'm going to have to inject myself three times a week after the initial month double dose sessions, so I guess the hepititus is not as agressive a treatment?

    The onco said it would make me feel like I have a really bad hangover and i'll not want to even get out of bed. So if your co-workers are only getting once a week and have a down time of two days then my 3x a week is going to put me out for the year.

    Hep
    Yes, to the Hepititus being less aggressive (no rads). They're both on another medicine, too, besides the Interferon. Both still work 48-53 hour weeks, but it is a bit of a struggle. They each seem kinda "groggy" most all of the time, and shows in their speech. One is a foreman, and does sit at his desk a lot. Know each has to get a weekly blood test, too, as there's some risk that might show up in the blood reading.

    As for the PEG- that's for the Dr to know best. Realize, Bill, that there are Drs out there who seem very biased against the PEG. And, a number of them have admitted they were wrong, at the expense of their Patients, when their condition gets so bad that they have the PEGs installed late and during treatment, with the added risk of infection due to the compromised immune system with chemo. Maybe your ENT should check your throat out? I know I didn't see my ENT even once during tx. As with all- keep your Drs in the Loop as to exactly how you are physically doing, so they know and can help as best they can.

    kcass
  • stayingpositive
    stayingpositive Member Posts: 89
    #26
    Kent Cass said:

    Hep
    Yes, to the Hepititus being less aggressive (no rads). They're both on another medicine, too, besides the Interferon. Both still work 48-53 hour weeks, but it is a bit of a struggle. They each seem kinda "groggy" most all of the time, and shows in their speech. One is a foreman, and does sit at his desk a lot. Know each has to get a weekly blood test, too, as there's some risk that might show up in the blood reading.

    As for the PEG- that's for the Dr to know best. Realize, Bill, that there are Drs out there who seem very biased against the PEG. And, a number of them have admitted they were wrong, at the expense of their Patients, when their condition gets so bad that they have the PEGs installed late and during treatment, with the added risk of infection due to the compromised immune system with chemo. Maybe your ENT should check your throat out? I know I didn't see my ENT even once during tx. As with all- keep your Drs in the Loop as to exactly how you are physically doing, so they know and can help as best they can.

    kcass

    ENT
    Yeah my ENT doc seen me the day before the onco, I told him about my sore throat and he told me yes the radiation will do that, but I would recover. He seemed more worried about the muscle/nerve dmg in my shoulder and arm. When I opened my mouth to show my onco my throat, he kinda cringed and said, yup! its red and scrathy in there, want some pain meds? and he gave me a script for "majik mouthwash", which numbs up your throat/mouth/teeth, and makes it difficult to swallow. I'm already having difficulty swallowing so I don't need my throat being so numb I can't do it at all. Besides I would really freak out if I couldn't swallow (I have always been that way).

    Staying positive

    Bill
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #27
    GREAT NEWS
    Kent, you are an inspiration and a source of motivation to all who have not yet reached that milestone in time.

    We really are individually treated and not all one lump sum statistic.

    Enjoy!!

    Mike

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