Onco visit

osmotar
osmotar Member Posts: 1,006
I have an appointment today with my onco, to go over the PET scan results from last week, this visit will also be where she tells me what my course of treatment will be, my nerves are on edge and I have to remind myself to take deep breaths. I've got my "35 questions" printed to take with me. A good friend is going along, I call him my wing man.It's going to be a long day here in the office until it's time to leave for the appointment, any advise , words of wisdom?

Linda

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Alcohol and Drugs
    LOL, sorry, just teasing of course....

    Just think of it as your game plan of attack....

    She'll tell you the specifics, more than likely the type of drugs involved and the side effects, etc...

    Morethan likely she'll prescribe one of these two or a combination... Nine weeks (three week cycles) of chemo with multiple chemo drugs, or concurrent weekly chemo for 6 - 7 weeks. This is usually one type of chemo weekly with daily rads. If you are lucky like I was, you'll get both....LOL, teasing. Anyways, that seems to be what the large majority on here get, or some deriviative.

    Nothing much will probably help with your anxiety, but just know this is the beginning of your journey. Once you get started, it's all surivial mode...you'll do fine.

    Surround yourself with positive people and positive thoughts...you can beat this.

    Thoughts & Prayers,
    John
  • osmotar
    osmotar Member Posts: 1,006
    Skiffin16 said:

    Alcohol and Drugs
    LOL, sorry, just teasing of course....

    Just think of it as your game plan of attack....

    She'll tell you the specifics, more than likely the type of drugs involved and the side effects, etc...

    Morethan likely she'll prescribe one of these two or a combination... Nine weeks (three week cycles) of chemo with multiple chemo drugs, or concurrent weekly chemo for 6 - 7 weeks. This is usually one type of chemo weekly with daily rads. If you are lucky like I was, you'll get both....LOL, teasing. Anyways, that seems to be what the large majority on here get, or some deriviative.

    Nothing much will probably help with your anxiety, but just know this is the beginning of your journey. Once you get started, it's all surivial mode...you'll do fine.

    Surround yourself with positive people and positive thoughts...you can beat this.

    Thoughts & Prayers,
    John

    hahahah....ok, perhaps no
    hahahah....ok, perhaps no alcohol or drugs. A new journey for sure.

    Linda
  • jim and i
    jim and i Member Posts: 1,788 Member
    osmotar said:

    hahahah....ok, perhaps no
    hahahah....ok, perhaps no alcohol or drugs. A new journey for sure.

    Linda

    Linda,
    Not sure if you have

    Linda,

    Not sure if you have left for the appointment yet but wanted to tell you that it is stressful and scary and you probably want to hurry up and get started so it will be done, yet afraid of the treatment st the same time. Jim was very agitted at first because he had some set backs to starting treatment, but eventually we have settled into a routine. As you have probably seen in other posts, everyone is different in side effects and treatments. Hopefully you trust your treatment team and know they are doing the best for you. But, keep informed. I believe knowlede ia power and it gives you some security when you know the how, where, when and why.

    You are in my prayers.

    Debbie
  • osmotar
    osmotar Member Posts: 1,006
    Visit
    To start I admit to being very anxious about todays visit for results of PET scan, I had one of my "wing me" meet me at the doctors office. I have some amazing friends who I met thru work and have taken it upon themselves to walk this journey with me. WELL, the recent PET showed the cancer was no where else, other than the lump in my neck, which has grown in size but nothing major. Believe me the weight seemed to lift from my chest, and I could finally take a breath. As my onco said this is very treatable, it won't be easy but heck, in my whole life I don't think I every took the easy..I'm a bit of a type A personality and will have to learn to ask for help, etc. Anyway , I get my first chemo infusion this coming monday, TPF as the doc said, Cisplstin,Taxutere(sp), and 5FU, plus anti nausea meds,including a pump for the next 4 days , then disconnected on friday. I even had blood draw today using the chemo port, WOW, no needle sticks in an arm that has small veins that roll..the chemo techs..what a nice group of people. As the doc said this is the mother of all treatments, won't be easy, but it's a start and I have no where to go bur forward 1 day at a time. My next best news; all of my family is back east, I called to tell my daughter the results of my visit, and she told me she and my 6 year old grandaughter are flying out this thursday to spend my b-day with me, plus they will be here for my 1st treatment, It was supposed to be a surprise , but daughter realized they my get to my house before I do, so she was forced to tell me, of course every one back east all knew of the surprise, next I have a 19 year old neice ( who is in college,sophmore) who went to her mom(my youngest sister) and father and told them she she spoke to her advisor , and asked if she could take her college classes on line this semester, so she could come to AZ and help me..what a kid..my sister also went to her employer and is discussing working on line so she can come to AZ to help...WOW..again..and then ther is my 80 yr old mother who will be flying out with my niece. I always knew I had a great family...but for them to do all of this...as my sister said we are in this together. Right now I am on an endorphin high.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    osmotar said:

    Visit
    To start I admit to being very anxious about todays visit for results of PET scan, I had one of my "wing me" meet me at the doctors office. I have some amazing friends who I met thru work and have taken it upon themselves to walk this journey with me. WELL, the recent PET showed the cancer was no where else, other than the lump in my neck, which has grown in size but nothing major. Believe me the weight seemed to lift from my chest, and I could finally take a breath. As my onco said this is very treatable, it won't be easy but heck, in my whole life I don't think I every took the easy..I'm a bit of a type A personality and will have to learn to ask for help, etc. Anyway , I get my first chemo infusion this coming monday, TPF as the doc said, Cisplstin,Taxutere(sp), and 5FU, plus anti nausea meds,including a pump for the next 4 days , then disconnected on friday. I even had blood draw today using the chemo port, WOW, no needle sticks in an arm that has small veins that roll..the chemo techs..what a nice group of people. As the doc said this is the mother of all treatments, won't be easy, but it's a start and I have no where to go bur forward 1 day at a time. My next best news; all of my family is back east, I called to tell my daughter the results of my visit, and she told me she and my 6 year old grandaughter are flying out this thursday to spend my b-day with me, plus they will be here for my 1st treatment, It was supposed to be a surprise , but daughter realized they my get to my house before I do, so she was forced to tell me, of course every one back east all knew of the surprise, next I have a 19 year old neice ( who is in college,sophmore) who went to her mom(my youngest sister) and father and told them she she spoke to her advisor , and asked if she could take her college classes on line this semester, so she could come to AZ and help me..what a kid..my sister also went to her employer and is discussing working on line so she can come to AZ to help...WOW..again..and then ther is my 80 yr old mother who will be flying out with my niece. I always knew I had a great family...but for them to do all of this...as my sister said we are in this together. Right now I am on an endorphin high.

    Linda - Very Similar Treatment
    I had very similar treatment....

    STGIII SCC Tonsil (primary) Cancer, a single lymphnode (secondary) on the same side..HPV+.

    Nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU, the 5FU was in the pump and taken off each Friday morning.

    Then I also had an additional seven weeks of weekly Carboplatin, Amifostine Injections in my stomach just before each of the 35 daily rads sessions.

    Agreed, very doable, extremely rough diet......

    You type A personality will get you through it....but don't be stubborn on the meds, if you need them ask for them.

    My chemo MD is awesome, she told me upfront, "Anything your going through, let me know, I have something for it...", and she always did...

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    osmotar said:

    Visit
    To start I admit to being very anxious about todays visit for results of PET scan, I had one of my "wing me" meet me at the doctors office. I have some amazing friends who I met thru work and have taken it upon themselves to walk this journey with me. WELL, the recent PET showed the cancer was no where else, other than the lump in my neck, which has grown in size but nothing major. Believe me the weight seemed to lift from my chest, and I could finally take a breath. As my onco said this is very treatable, it won't be easy but heck, in my whole life I don't think I every took the easy..I'm a bit of a type A personality and will have to learn to ask for help, etc. Anyway , I get my first chemo infusion this coming monday, TPF as the doc said, Cisplstin,Taxutere(sp), and 5FU, plus anti nausea meds,including a pump for the next 4 days , then disconnected on friday. I even had blood draw today using the chemo port, WOW, no needle sticks in an arm that has small veins that roll..the chemo techs..what a nice group of people. As the doc said this is the mother of all treatments, won't be easy, but it's a start and I have no where to go bur forward 1 day at a time. My next best news; all of my family is back east, I called to tell my daughter the results of my visit, and she told me she and my 6 year old grandaughter are flying out this thursday to spend my b-day with me, plus they will be here for my 1st treatment, It was supposed to be a surprise , but daughter realized they my get to my house before I do, so she was forced to tell me, of course every one back east all knew of the surprise, next I have a 19 year old neice ( who is in college,sophmore) who went to her mom(my youngest sister) and father and told them she she spoke to her advisor , and asked if she could take her college classes on line this semester, so she could come to AZ and help me..what a kid..my sister also went to her employer and is discussing working on line so she can come to AZ to help...WOW..again..and then ther is my 80 yr old mother who will be flying out with my niece. I always knew I had a great family...but for them to do all of this...as my sister said we are in this together. Right now I am on an endorphin high.

    Hi Linda

    Sorry I missed all your posting as I been out on Vacation in Honduras. Sounds like you got everything under control and have a lot of very good support coming your way.

    Glad to have you here.
    Hondo
  • osmotar
    osmotar Member Posts: 1,006
    Hondo said:

    Hi Linda

    Sorry I missed all your posting as I been out on Vacation in Honduras. Sounds like you got everything under control and have a lot of very good support coming your way.

    Glad to have you here.
    Hondo

    Hondo,
    Don't know about

    Hondo,

    Don't know about having everything in control, but I have truly been blessed by who ever guides me with a truly amazing family dynamics.

    Linda
  • osmotar
    osmotar Member Posts: 1,006
    Skiffin16 said:

    Linda - Very Similar Treatment
    I had very similar treatment....

    STGIII SCC Tonsil (primary) Cancer, a single lymphnode (secondary) on the same side..HPV+.

    Nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU, the 5FU was in the pump and taken off each Friday morning.

    Then I also had an additional seven weeks of weekly Carboplatin, Amifostine Injections in my stomach just before each of the 35 daily rads sessions.

    Agreed, very doable, extremely rough diet......

    You type A personality will get you through it....but don't be stubborn on the meds, if you need them ask for them.

    My chemo MD is awesome, she told me upfront, "Anything your going through, let me know, I have something for it...", and she always did...

    Best,
    John

    Every time I read the "5FU"
    Every time I read the "5FU" I have to laugh to myself, it's not the numeric , it's the alpha characters, I think thats the adeptation I will take towards this cancer :). Yes , our treatments sound very similar, question, the pump that you have for 4 days, and returned each friday, is it a hinderance in everyday activities? Sleeping , showering , driving, etc?
  • Jahnsart
    Jahnsart Member Posts: 41
    osmotar said:

    Visit
    To start I admit to being very anxious about todays visit for results of PET scan, I had one of my "wing me" meet me at the doctors office. I have some amazing friends who I met thru work and have taken it upon themselves to walk this journey with me. WELL, the recent PET showed the cancer was no where else, other than the lump in my neck, which has grown in size but nothing major. Believe me the weight seemed to lift from my chest, and I could finally take a breath. As my onco said this is very treatable, it won't be easy but heck, in my whole life I don't think I every took the easy..I'm a bit of a type A personality and will have to learn to ask for help, etc. Anyway , I get my first chemo infusion this coming monday, TPF as the doc said, Cisplstin,Taxutere(sp), and 5FU, plus anti nausea meds,including a pump for the next 4 days , then disconnected on friday. I even had blood draw today using the chemo port, WOW, no needle sticks in an arm that has small veins that roll..the chemo techs..what a nice group of people. As the doc said this is the mother of all treatments, won't be easy, but it's a start and I have no where to go bur forward 1 day at a time. My next best news; all of my family is back east, I called to tell my daughter the results of my visit, and she told me she and my 6 year old grandaughter are flying out this thursday to spend my b-day with me, plus they will be here for my 1st treatment, It was supposed to be a surprise , but daughter realized they my get to my house before I do, so she was forced to tell me, of course every one back east all knew of the surprise, next I have a 19 year old neice ( who is in college,sophmore) who went to her mom(my youngest sister) and father and told them she she spoke to her advisor , and asked if she could take her college classes on line this semester, so she could come to AZ and help me..what a kid..my sister also went to her employer and is discussing working on line so she can come to AZ to help...WOW..again..and then ther is my 80 yr old mother who will be flying out with my niece. I always knew I had a great family...but for them to do all of this...as my sister said we are in this together. Right now I am on an endorphin high.

    I am too
    Hi Osmotar...I too live in Phoenix...Let me know if you need anything. I live in the North Valley and will be glad to do what I can for you...
  • osmotar
    osmotar Member Posts: 1,006
    Jahnsart said:

    I am too
    Hi Osmotar...I too live in Phoenix...Let me know if you need anything. I live in the North Valley and will be glad to do what I can for you...

    Thank you so much, and if
    Thank you so much, and if there is anything I can do for you, please don't hesitate. I read your bio..I never had any symptoms, just found a small lump in the tight side of my neck around April 1st, and here I am today.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    osmotar said:

    Every time I read the "5FU"
    Every time I read the "5FU" I have to laugh to myself, it's not the numeric , it's the alpha characters, I think thats the adeptation I will take towards this cancer :). Yes , our treatments sound very similar, question, the pump that you have for 4 days, and returned each friday, is it a hinderance in everyday activities? Sleeping , showering , driving, etc?

    FU
    Yep, my thoughts exactly......LOL

    It takes a little getting use to, also if you have cats, they apparently like the odor and want to chew the hose... So unless you want your cat to have a healthy dose of chemo, keep an eye out.

    As for the pump, it get's a little annoying mainly because you hear it squirt a dose in you about every 30 seconds or so...I was glad to get it off and heal on my own a little.

    It's hard to shower with, so I'd soak in the tub with it hanging over the side...the tube is about 4' long or so. Although, my wife insisted that when I soaked in the tub, the odor from all of that chemo smelled like a big medicine bag. I thought the 5FU made me smell more like a cat urine litter box....nice, huh.

    With the fanny pack, I could put it under my shirt and the tube under it so that it didn't get caught on anything or be that noticeable.

    Sleeping, I slept on the couch mainly as I was up a lot between water and urinating, then our two chocolate labs thought thy needed to pee also, so had to take them out...geeesh.

    I would just take it off and and lay it beside me either on the couch or floor next to me, never had any problems. But I think under the conditions you are subconsciously aware.

    Driving wasn't a problem either, most of the time I adjusted it and just carried it slung over my shoulder. Taking it off and sitting it next to me... In the car/truck I'd set it on the console area. I had my left shoulder dislocated several years ago (motorcycle crash), so the port is on my right side, didn't interefere with the drivers seat belt.

    Usually late Thursday night it'll start beeping when it runs out. they'll show you how to clamp it off and turn the pump off, very easy.

    When you go in on Friday, they'll take it off, flush the port and you might get fluids for hydration.

    Not sure on your insurance, but I had to battle a little the first time because they wanted to charge me out of netwrok for the pump...60/40 instead of 80/20.

    Got it straight though....

    JG
  • osmotar
    osmotar Member Posts: 1,006
    Skiffin16 said:

    FU
    Yep, my thoughts exactly......LOL

    It takes a little getting use to, also if you have cats, they apparently like the odor and want to chew the hose... So unless you want your cat to have a healthy dose of chemo, keep an eye out.

    As for the pump, it get's a little annoying mainly because you hear it squirt a dose in you about every 30 seconds or so...I was glad to get it off and heal on my own a little.

    It's hard to shower with, so I'd soak in the tub with it hanging over the side...the tube is about 4' long or so. Although, my wife insisted that when I soaked in the tub, the odor from all of that chemo smelled like a big medicine bag. I thought the 5FU made me smell more like a cat urine litter box....nice, huh.

    With the fanny pack, I could put it under my shirt and the tube under it so that it didn't get caught on anything or be that noticeable.

    Sleeping, I slept on the couch mainly as I was up a lot between water and urinating, then our two chocolate labs thought thy needed to pee also, so had to take them out...geeesh.

    I would just take it off and and lay it beside me either on the couch or floor next to me, never had any problems. But I think under the conditions you are subconsciously aware.

    Driving wasn't a problem either, most of the time I adjusted it and just carried it slung over my shoulder. Taking it off and sitting it next to me... In the car/truck I'd set it on the console area. I had my left shoulder dislocated several years ago (motorcycle crash), so the port is on my right side, didn't interefere with the drivers seat belt.

    Usually late Thursday night it'll start beeping when it runs out. they'll show you how to clamp it off and turn the pump off, very easy.

    When you go in on Friday, they'll take it off, flush the port and you might get fluids for hydration.

    Not sure on your insurance, but I had to battle a little the first time because they wanted to charge me out of netwrok for the pump...60/40 instead of 80/20.

    Got it straight though....

    JG

    No cats, but 2 boxer boyz ,
    No cats, but 2 boxer boyz , brothere, 3yrs old, who think anything not nailed down is theirs. As for the smell,,yewee.., but in the bigger picture..it is what it is.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    osmotar said:

    No cats, but 2 boxer boyz ,
    No cats, but 2 boxer boyz , brothere, 3yrs old, who think anything not nailed down is theirs. As for the smell,,yewee.., but in the bigger picture..it is what it is.

    My Girls
    Kali and Jasmine, chocolate lab sisters that are five...;;

    K&J - Pups

    K&J - Chillin

    Best,
    John
  • osmotar
    osmotar Member Posts: 1,006
    Skiffin16 said:

    My Girls
    Kali and Jasmine, chocolate lab sisters that are five...;;

    K&J - Pups

    K&J - Chillin

    Best,
    John

    too cute. Yiska (Navajo for
    too cute. Yiska (Navajo for Night has passed) white, with some brown, Shilah (Navajo for brother), brindle. I'll have to take some pics and display.
  • palmyrafan
    palmyrafan Member Posts: 396
    Advice
    Yes, don't forget to breathe. Deeply. It allows oxygen to get to your lungs, heart and brain and slows down your heart rhythm, thereby allowing you to relax. I would also take a bottle of water with you; especially if you have a lot of questions. When we get nervous or scared, sometimes our mouths get dry and we find it hard to find our voice.

    Good for you for taking a friend. Make sure you either have a mini-tape recorder or a notebook (with pen/pencil) your friend can take notes in.

    Remember, no question is too lame or stupid. There are only unasked questions. You have the right to get the answers to those questions, so don't be intimidated.

    Good luck!