About to begin the Journey

2

Comments

  • Ingrid K
    Ingrid K Member Posts: 813
    Welcome to our little corner of the internet

    Fishman "T"

    Welcome, glad you found us.  Others have told you the major things to be aware of.  Most important is to stay off GOOGLE !!  it can scare the crap out of you for sure.  Read and heed the comments above from Phrannie, Pat, Greg, Kent, Matt, etc. who all have first hand advice from their own battles. 

    Check out the SUPERTHREAD.   It is the most comprehensive list of helpful tips you will find anywhere.  Thanks to many warriors ahead of us for putting the info together and keeping it current (Sweetblood and Skiffin).

    We have all "been there, done that" so probably the best advice I can give you is......ASK PLENTY OF QUESTIONS.   Although many of us had sligthly different cancers (mine was tongue), the radiation treatment experience is pretty much the same, so we are all experts and very happy to help in any way we can.

    EAT, EAT, EAT....I think you got that part OK if your planning on a Philly cheesecake fix. 

    Treatment sucks, but it is bearable (with enough pain meds !!).  I was 2 years older than you when I started the journey and all in all I am doing great... You will too !

    Wishing you the best....and looking forward to future posts.

     

     

  • Skiffin16
    Skiffin16 Member Posts: 8,301 Member
    My Fish is Bigger Than Yours....

    Oooops.I mean Greg's..., LOL.

    Welcome T, and ummm...hang on for the ride.

    Like mentioned, don't be that concerned with odds and statistics at this point...way too many factors controlling those numbers.

    I was STGIII SCC Tonsils, and a lymphnode..HPV+. They took out the tonsils, did the famous nine weeks of Cisplatin, Taxotere and 5FU, then your schedule of seven weeks of concurrent weekly Carboplatin, and 35 daily rads.

    For me (and comparing your MD's comments), the tonsils were far worse than treatment.... It was just intense and a week or so long. The rads recovery is much longer, and less painful.

    But you can at least somewhat eat and taste with the tonsil surgery.. Taste and saliva are out the window for several months with the rads.

    I did have a power port (two plus years worth), but no PEG.

    I switched over to mainly Ensure Plus mid-way through and a few weeks after rads..., less pain, more bang for the buck calories wise..., plenty of water, and a few sliced peaches to keep the throat muscles working, and drugs, LOL.

    Also, the unkown primary...several here that have went that route too.

    BTW;

    Grouper

    My fish is bigger than yours, LOL...

    One of the original founding members of the "Abi-Normal Clan"...

    Oh, and BTW..., my original Dx and Tx was in early 2009...clean and clear since... Hang in there, maintain and positive attitude, keep your humor, and that'll cover at least 50% of your success.

    Best ~ John

     

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member
    Skiffin16 said:

    My Fish is Bigger Than Yours....

    Oooops.I mean Greg's..., LOL.

    Welcome T, and ummm...hang on for the ride.

    Like mentioned, don't be that concerned with odds and statistics at this point...way too many factors controlling those numbers.

    I was STGIII SCC Tonsils, and a lymphnode..HPV+. They took out the tonsils, did the famous nine weeks of Cisplatin, Taxotere and 5FU, then your schedule of seven weeks of concurrent weekly Carboplatin, and 35 daily rads.

    For me (and comparing your MD's comments), the tonsils were far worse than treatment.... It was just intense and a week or so long. The rads recovery is much longer, and less painful.

    But you can at least somewhat eat and taste with the tonsil surgery.. Taste and saliva are out the window for several months with the rads.

    I did have a power port (two plus years worth), but no PEG.

    I switched over to mainly Ensure Plus mid-way through and a few weeks after rads..., less pain, more bang for the buck calories wise..., plenty of water, and a few sliced peaches to keep the throat muscles working, and drugs, LOL.

    Also, the unkown primary...several here that have went that route too.

    BTW;

    Grouper

    My fish is bigger than yours, LOL...

    One of the original founding members of the "Abi-Normal Clan"...

    Oh, and BTW..., my original Dx and Tx was in early 2009...clean and clear since... Hang in there, maintain and positive attitude, keep your humor, and that'll cover at least 50% of your success.

    Best ~ John

     

    Nice Fish!

    Hi John,

    Thanks for the note. I've been hearing a lot about the reading and the statistics. I realize now that I'm "me" and not a number. I'm also hearing a lot of that "hang on" verbiage. My Dr. said this will be worse than the sore throat from the tonsillectomy. But then I had biopsies done too and that added to the pain. It's the energy level and unexpected setbacks that concern me the most. I want to work (desk job speaking on the phone). I need to work both financially and mentally. When I'm busy, I'm not thinking about "Jack" or how I'm feeling. My work can be somewhat fast paced and that's a good thing but I do have lulls in the action. 

    Many have stated to have a plan B in case of that but I don't know how to even begin to do so. Right now I'm just pissed about all of this. I want to kick Jack's behind for butting into my life. 

    Good news is I got the go ahead for a 2nd opinion at Johns Hopkins for this Friday. They'll be going over all the pathology reports, samples etc. They'll be checking again for HPV. I want to be sure what I'm about to do is the best way to approach this and they're one of the best in the country. 

    They're currently scheduling the treatments locally. I suspect I'll be starting next week. I tried Ensure (YUCK!) ~lol~ I plan on mixing my own with whey protein, glutamine, aminos, flax or fish oil and vitamins along with fruit for carbs. As it stands now, I won't be doing the port or the feeding tube unless I need to. 

    That is one heck of a fish! I do mostly fresh water. I live in the Shenandoah Valley and the Shenandoah River and streams have some great fishing and some of the best scenery in the country. The streams are stocked year round with trout and there are native brookies as well in many of the mountain streams. 

    It's encouraging to know so many have done so well. I plan on being one too! 

    Thanks again and here's to hooking up with a lunker!

    Fish On!

    "T"

     

  • Grandmax4
    Grandmax4 Member Posts: 723
    fishmanpa said:

    Nice Fish!

    Hi John,

    Thanks for the note. I've been hearing a lot about the reading and the statistics. I realize now that I'm "me" and not a number. I'm also hearing a lot of that "hang on" verbiage. My Dr. said this will be worse than the sore throat from the tonsillectomy. But then I had biopsies done too and that added to the pain. It's the energy level and unexpected setbacks that concern me the most. I want to work (desk job speaking on the phone). I need to work both financially and mentally. When I'm busy, I'm not thinking about "Jack" or how I'm feeling. My work can be somewhat fast paced and that's a good thing but I do have lulls in the action. 

    Many have stated to have a plan B in case of that but I don't know how to even begin to do so. Right now I'm just pissed about all of this. I want to kick Jack's behind for butting into my life. 

    Good news is I got the go ahead for a 2nd opinion at Johns Hopkins for this Friday. They'll be going over all the pathology reports, samples etc. They'll be checking again for HPV. I want to be sure what I'm about to do is the best way to approach this and they're one of the best in the country. 

    They're currently scheduling the treatments locally. I suspect I'll be starting next week. I tried Ensure (YUCK!) ~lol~ I plan on mixing my own with whey protein, glutamine, aminos, flax or fish oil and vitamins along with fruit for carbs. As it stands now, I won't be doing the port or the feeding tube unless I need to. 

    That is one heck of a fish! I do mostly fresh water. I live in the Shenandoah Valley and the Shenandoah River and streams have some great fishing and some of the best scenery in the country. The streams are stocked year round with trout and there are native brookies as well in many of the mountain streams. 

    It's encouraging to know so many have done so well. I plan on being one too! 

    Thanks again and here's to hooking up with a lunker!

    Fish On!

    "T"

     

    just wanted

    to welcome you to the group, good luck with your treatment and recovery...

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member
    Grandmax4 said:

    just wanted

    to welcome you to the group, good luck with your treatment and recovery...

    Thanks GMax

    Thanks GMax

  • Vee1
    Vee1 Member Posts: 59
    Dad says "Hi"

    Hello,

    I write for my Dad (maybe the oldest member???) at 94 he is being treated with radiation only for floor of mouth SCC.  You are at the right place.  You will read about ideas, tips, tricks, and good ol' fashioned motivation to keep you going.  You'll soon find a core group that will only have your best interests in sight.

     

    They are here and they care.

     

    -V

  • CivilMatt
    CivilMatt Member Posts: 4,690 Member
    being honest

    T,

     

    What is “alternate plan” or “plan B”?

     

    Let me put it this way, I spent weeks whispering and virtually every afternoon after treatments sleeping. 

     

    Treatments kicked my butt in some areas and not in others.  I truly hope you kick Jack’s butt and enjoy as smooth a ride as possible.

     

    Best,

     

    Matt

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

    Nice Fish!

    Hi John,

    Thanks for the note. I've been hearing a lot about the reading and the statistics. I realize now that I'm "me" and not a number. I'm also hearing a lot of that "hang on" verbiage. My Dr. said this will be worse than the sore throat from the tonsillectomy. But then I had biopsies done too and that added to the pain. It's the energy level and unexpected setbacks that concern me the most. I want to work (desk job speaking on the phone). I need to work both financially and mentally. When I'm busy, I'm not thinking about "Jack" or how I'm feeling. My work can be somewhat fast paced and that's a good thing but I do have lulls in the action. 

    Many have stated to have a plan B in case of that but I don't know how to even begin to do so. Right now I'm just pissed about all of this. I want to kick Jack's behind for butting into my life. 

    Good news is I got the go ahead for a 2nd opinion at Johns Hopkins for this Friday. They'll be going over all the pathology reports, samples etc. They'll be checking again for HPV. I want to be sure what I'm about to do is the best way to approach this and they're one of the best in the country. 

    They're currently scheduling the treatments locally. I suspect I'll be starting next week. I tried Ensure (YUCK!) ~lol~ I plan on mixing my own with whey protein, glutamine, aminos, flax or fish oil and vitamins along with fruit for carbs. As it stands now, I won't be doing the port or the feeding tube unless I need to. 

    That is one heck of a fish! I do mostly fresh water. I live in the Shenandoah Valley and the Shenandoah River and streams have some great fishing and some of the best scenery in the country. The streams are stocked year round with trout and there are native brookies as well in many of the mountain streams. 

    It's encouraging to know so many have done so well. I plan on being one too! 

    Thanks again and here's to hooking up with a lunker!

    Fish On!

    "T"

     

    Once you begin treatment

    it is absolutely imparitive that you run anything you're putting into your body by your Oncologist.  That means the smoothies you're planning.....antioxidents are a total no no.  Weird I know...but the rad doc explained to me, that just like they help your good cells fight disease, they also help cancer cells regenerate.....working against the radiation you're getting.  Just promise you'll take your recipie to the Dr. first, ok? Smile

    p

    PS...yup Ensure tastes like crap....however, once you start treatment, you can't taste it anyway.  When your throat is really sore, knowing you're going to get 550 calories in only 8 to 10 swallows makes it a nice bang for your buck.

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member

    Once you begin treatment

    it is absolutely imparitive that you run anything you're putting into your body by your Oncologist.  That means the smoothies you're planning.....antioxidents are a total no no.  Weird I know...but the rad doc explained to me, that just like they help your good cells fight disease, they also help cancer cells regenerate.....working against the radiation you're getting.  Just promise you'll take your recipie to the Dr. first, ok? Smile

    p

    PS...yup Ensure tastes like crap....however, once you start treatment, you can't taste it anyway.  When your throat is really sore, knowing you're going to get 550 calories in only 8 to 10 swallows makes it a nice bang for your buck.

    Hi P,

    I actually discussed that at the initial consultation with my chemo doc. I was a personal trainer (part time) and natural body builder for many years. No vitamin A, C or E. I know about the antioxidents. Glutamine and othe amino acids have been shown to help boost the immune system as well as preserve muscle. The proteins in whey are more readily absorbed. I'll need to get fat in my diet and flax seed oil is a "good" fat. Fruits and veggies are essential and recommended. 

    Having gone thrugh the tonsillectomy I have an idea what the throat pain is about. I have some Ensure I bought to try and if worse comes to worse I'll choke that down ~gag~  Not being able to taste is going to be very weird indeed. 

    Thanks P!

    "T"

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member
    CivilMatt said:

    being honest

    T,

     

    What is “alternate plan” or “plan B”?

     

    Let me put it this way, I spent weeks whispering and virtually every afternoon after treatments sleeping. 

     

    Treatments kicked my butt in some areas and not in others.  I truly hope you kick Jack’s butt and enjoy as smooth a ride as possible.

     

    Best,

     

    Matt

    Plan C

    Hi Matt,

    That's what I'm afraid of. I had a day or so where I could barely speak above a whisper after the tonsillectomy and that was no picnic. I'm going to have to fight through the fatigue no matter what. No work means no $$$. No $$$ means bills don't get paid. I'm one of many Americans who live paycheck to paycheck with no more than a few months in reserve. Also, no work means no insurance and I can't afford it on my own. 

    I was uninsured when I had the 1st heart attack and surgery. Between that and a bad divorce it put me in a hole I couldn't dig out of. I recently rectified that and I refuse to allow that to happen again! After 5 years I finally had gotten to the point of not sweating the monthly bills. After 15 years, I came out of music retirement and the last two years have been amazing. I played over 110 gigs last year on top of my day gig. Performing has been money for my soul. I enjoy my day job (music business related) and I found a partner in life who blesses me immensely every day. I have too much going for me to allow Jack to take it all away. 

    I know I'm walking into an unknown. I hear you and many others concerning the fatigue and I can't begin to imagine what it will be like but I don't have a plan B. Truly, if there are things I could and should be looking into in the event I get my legs taken out from under me, I'd like to know.  

    "T"

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member
    Vee1 said:

    Dad says "Hi"

    Hello,

    I write for my Dad (maybe the oldest member???) at 94 he is being treated with radiation only for floor of mouth SCC.  You are at the right place.  You will read about ideas, tips, tricks, and good ol' fashioned motivation to keep you going.  You'll soon find a core group that will only have your best interests in sight.

     

    They are here and they care.

     

    -V

    Tell Your Dad...

    Hi V,

    Please tell you Dad Hi from me and to keep on keepin' on! Thanks for the welcome :) 

    "T"

     

  • Skiffin16
    Skiffin16 Member Posts: 8,301 Member
    Work...

    I'm not so sure how your throat is going to hold up say mid-rads to a few weeks after if you need it for work...

    But doing computer work or office work in general is very doable in some cases.

    For me, I mainly do all computer related work in office. So I was allowed to work from home and connect to my office computers. I did that all of 2009 through August, going back in office after Labor Day 2009.

    I didn't miss any reports, projects or deadlines...

    But it wasn't a typical 9 - 5, I had dates and times that I need to have work done. So I am liberable enough to work when I feel like it and rest when needed.

    On chemo days, pumped full of roids, I might start work in the evening and work all night, resting the next day..then return to the daily routine unitl next chemo session.

    The rads will start zapping your energy...or more so the lack of energy from reduced calorie intake and energy to recover.

    So drink a lot of those Ensures or energy drinks... Just remember, it's nothing to do with taste or pleasure... It's strictly calorie intake and hydration...nothing else. You can try healthy solutions whatever, but for me, you have to get in calories and hydration...worry about the other stuff after you survive treatment.

    BTW, there are a lot of healthy solutions and food related links on the SuperThread.

    Best ~ John

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member
    Skiffin16 said:

    Work...

    I'm not so sure how your throat is going to hold up say mid-rads to a few weeks after if you need it for work...

    But doing computer work or office work in general is very doable in some cases.

    For me, I mainly do all computer related work in office. So I was allowed to work from home and connect to my office computers. I did that all of 2009 through August, going back in office after Labor Day 2009.

    I didn't miss any reports, projects or deadlines...

    But it wasn't a typical 9 - 5, I had dates and times that I need to have work done. So I am liberable enough to work when I feel like it and rest when needed.

    On chemo days, pumped full of roids, I might start work in the evening and work all night, resting the next day..then return to the daily routine unitl next chemo session.

    The rads will start zapping your energy...or more so the lack of energy from reduced calorie intake and energy to recover.

    So drink a lot of those Ensures or energy drinks... Just remember, it's nothing to do with taste or pleasure... It's strictly calorie intake and hydration...nothing else. You can try healthy solutions whatever, but for me, you have to get in calories and hydration...worry about the other stuff after you survive treatment.

    BTW, there are a lot of healthy solutions and food related links on the SuperThread.

    Best ~ John

    I know one thing!

    Hi John,

     

    I know one thing... I won't be singing for a while! My goal is to be ready to perform by May. If my treatment is done in early March that should be doable (I hope!). I speak on the phone for a living. I'm essentially I'm the voice for the company, guiding customers through the process of manufacturing CD's, DVD's etc. Fortunately, this is a slow time of year. I take maybe 20 calls or so a day. I can deal with horseness. A whisper for a voice won't work. I probably could work from home but I like being here believe it or not and I need the distraction :) 

    From what I'm hearing, I'm gonna feel it right after the treatment and it will only worsen as time goes on and even afterwards for a while. My plan was to get my rads first thing in the morning at 7:30 then go to work afterwards. My chemo is going to be on Fridays and will take a couple of hours so I'd be in at around Noon or so (later if I need additional IV fluids). Also, Fridays are the slowest day of the week so if I'm really hurting I can take the day off. My employer is very supportive.

    I'm already experiencing a loss of appetite, mostly from stress. I've lost about 20 pounds since October between the heart attack and the tonsillectomy but I'm still a solid 212 @ 5'10". I've already started supplementing with the shakes. My primary physcian said not to worry too much about the low fat heart healthy regime during treatment as I'm going to need every bit of energy I can get.

    As far as hydration... I really like the Powerade Zero drinks. Basically flavored water with B vitamins and eletrolytes. I know I won't taste it soon enough but any feedback on that?

    I've been checking the Super Thread and indeed, it's chock full of info. I also had my partner join the site. She could use the info and support on the Caregivers thread.

    I truly appreciate all the kind words, advice and info. I'm glad to have found you all!

    "T"

  • CivilMatt
    CivilMatt Member Posts: 4,690 Member
    fishmanpa said:

    I know one thing!

    Hi John,

     

    I know one thing... I won't be singing for a while! My goal is to be ready to perform by May. If my treatment is done in early March that should be doable (I hope!). I speak on the phone for a living. I'm essentially I'm the voice for the company, guiding customers through the process of manufacturing CD's, DVD's etc. Fortunately, this is a slow time of year. I take maybe 20 calls or so a day. I can deal with horseness. A whisper for a voice won't work. I probably could work from home but I like being here believe it or not and I need the distraction :) 

    From what I'm hearing, I'm gonna feel it right after the treatment and it will only worsen as time goes on and even afterwards for a while. My plan was to get my rads first thing in the morning at 7:30 then go to work afterwards. My chemo is going to be on Fridays and will take a couple of hours so I'd be in at around Noon or so (later if I need additional IV fluids). Also, Fridays are the slowest day of the week so if I'm really hurting I can take the day off. My employer is very supportive.

    I'm already experiencing a loss of appetite, mostly from stress. I've lost about 20 pounds since October between the heart attack and the tonsillectomy but I'm still a solid 212 @ 5'10". I've already started supplementing with the shakes. My primary physcian said not to worry too much about the low fat heart healthy regime during treatment as I'm going to need every bit of energy I can get.

    As far as hydration... I really like the Powerade Zero drinks. Basically flavored water with B vitamins and eletrolytes. I know I won't taste it soon enough but any feedback on that?

    I've been checking the Super Thread and indeed, it's chock full of info. I also had my partner join the site. She could use the info and support on the Caregivers thread.

    I truly appreciate all the kind words, advice and info. I'm glad to have found you all!

    "T"

    might help

    T,

     

    I can buy you your afternoons (maybe).  Learn to wear the mask without anti-anxiety meds.  I never did like the mask, but with 1 Lorazapam we could co-exist for 25 minutes a day.  At least being on meds let me equit freaking out and instead checkout the room, count to 280 (start zap), listen to music, watch the line-up lasers, etc.

     

    Hey that is a big plus for you, music, pick something that makes you want to get up and work after your morning zap.

     

    Truly the best of luck,

     

    Matt

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member
    CivilMatt said:

    might help

    T,

     

    I can buy you your afternoons (maybe).  Learn to wear the mask without anti-anxiety meds.  I never did like the mask, but with 1 Lorazapam we could co-exist for 25 minutes a day.  At least being on meds let me equit freaking out and instead checkout the room, count to 280 (start zap), listen to music, watch the line-up lasers, etc.

     

    Hey that is a big plus for you, music, pick something that makes you want to get up and work after your morning zap.

     

    Truly the best of luck,

     

    Matt

    The Mask

    Hi Matt,

    Ugghhh... the Mask! That was a very unpleasent experience getting fitted. The only issue I have (and maybe once it's hardened it won't be the case), was being able to breath easy. I'm going to see if I can spray my nose with Afrin or something so my nasal passages are clear. If I can put some ear buds in and listen to music it'll make the time pass quickly....we'll see.

    Thanks!

    "T"

     

  • CivilMatt
    CivilMatt Member Posts: 4,690 Member
    fishmanpa said:

    The Mask

    Hi Matt,

    Ugghhh... the Mask! That was a very unpleasent experience getting fitted. The only issue I have (and maybe once it's hardened it won't be the case), was being able to breath easy. I'm going to see if I can spray my nose with Afrin or something so my nasal passages are clear. If I can put some ear buds in and listen to music it'll make the time pass quickly....we'll see.

    Thanks!

    "T"

     

    mask time

    T,

     

    Ear buds are most likely a NO!  Most have a music system, if not ask if you can bring a player of some sort.  I listened to 60’s & 7’s (oldies) rock.

     

    Breathing sometimes seems harder than it is.  Relaxing is the key, for me it was drugs, for others it is no big deal (bless their powers).

     

    The music really does help sooth the brain during this moment of over stimulation.

     

    You will do fine, just ask.  My technicians were my buds; they were extremely kind and helpful.

     

    Been there,

     

    Matt

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

    I know one thing!

    Hi John,

     

    I know one thing... I won't be singing for a while! My goal is to be ready to perform by May. If my treatment is done in early March that should be doable (I hope!). I speak on the phone for a living. I'm essentially I'm the voice for the company, guiding customers through the process of manufacturing CD's, DVD's etc. Fortunately, this is a slow time of year. I take maybe 20 calls or so a day. I can deal with horseness. A whisper for a voice won't work. I probably could work from home but I like being here believe it or not and I need the distraction :) 

    From what I'm hearing, I'm gonna feel it right after the treatment and it will only worsen as time goes on and even afterwards for a while. My plan was to get my rads first thing in the morning at 7:30 then go to work afterwards. My chemo is going to be on Fridays and will take a couple of hours so I'd be in at around Noon or so (later if I need additional IV fluids). Also, Fridays are the slowest day of the week so if I'm really hurting I can take the day off. My employer is very supportive.

    I'm already experiencing a loss of appetite, mostly from stress. I've lost about 20 pounds since October between the heart attack and the tonsillectomy but I'm still a solid 212 @ 5'10". I've already started supplementing with the shakes. My primary physcian said not to worry too much about the low fat heart healthy regime during treatment as I'm going to need every bit of energy I can get.

    As far as hydration... I really like the Powerade Zero drinks. Basically flavored water with B vitamins and eletrolytes. I know I won't taste it soon enough but any feedback on that?

    I've been checking the Super Thread and indeed, it's chock full of info. I also had my partner join the site. She could use the info and support on the Caregivers thread.

    I truly appreciate all the kind words, advice and info. I'm glad to have found you all!

    "T"

    Only time will tell....

    on the work front.  Everybody is different, and everybody's bodies take treatment in it's own way....getting the once a week chemo's on Fridays will give you the weekend to rest up, and get over any nausea you might have.  Also, that chemo once a week instead of every 3 weeks means you'll be getting a lower dose more often....that will help with the nausea, I think.  Just be sure to take your anti-nausea meds as directed....don't wait to feel sick to take them.  Your determination to continue work will also play into things.

    John (Skiffin) and I both had Amifostine each day before radiation, and it brings on a "sick" of it's own....you're not getting that so that's a plus in the energy department.  You might investigate how your company would feel with you working from home "just in case".....there may be days when....sure you can do the job, but you'd rather do it in your jams from your recliner.....just sayin. Laughing   

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member

    Only time will tell....

    on the work front.  Everybody is different, and everybody's bodies take treatment in it's own way....getting the once a week chemo's on Fridays will give you the weekend to rest up, and get over any nausea you might have.  Also, that chemo once a week instead of every 3 weeks means you'll be getting a lower dose more often....that will help with the nausea, I think.  Just be sure to take your anti-nausea meds as directed....don't wait to feel sick to take them.  Your determination to continue work will also play into things.

    John (Skiffin) and I both had Amifostine each day before radiation, and it brings on a "sick" of it's own....you're not getting that so that's a plus in the energy department.  You might investigate how your company would feel with you working from home "just in case".....there may be days when....sure you can do the job, but you'd rather do it in your jams from your recliner.....just sayin. Laughing   

    Thanks Guys!

    I don't know if I'll be getting Amifostine. They didn't mention it. I know I'll be getting anti nausea drugs at infusion and to take afterwards and to help with breakthrough nausea. You're right P, in that I'm getting lower doses of Cisplatin over a longer period of time, most likely due to my heart condition.

    I know it all remains to be seen how my body and psyche will react to all of this. I have my moments but for the most part I'm Ok with it. Like I mentioned in previous posts, I'm pissed more than anything else. How dare Jack come along and mess things up! I'll use that as a motivating force to defy that SOB and kick his tush to the ground ;)~ (I know... big talk from someone who hasn't been in the ring yet ~lol~) I do however like the idea of working from a comfy chair. In fact, my partner and I were out looking at recliners over the weekend. When I had the PET scan done, they put me in a really nice recliner and covered me with a warm blanket while the injection was working. It was quite comfy and I promptly passed out.

    Hopefully, they'll have music in the rad and chemo rooms. I know they did when I had the stents put in. Most of the stuff I listen to is much like what I play. I call it "eclectic acoustic ear candy". Classic stuff mostly from the 60's and 70's. Simon and Garfunkel, Jim Croce, acoustic Jethro Tull, Cat Stevens,songs from Scrubs etc. I'll have to burn a "chemorad mix" CD for treatments. 

     

    I do have a question for everyone...

    How long was it from the time you were diagnosed until you started treatment? I ask because it seems like this is taking forever. I was initially officially diagnosed on Nov. 30th and we're going on 8 weeks now. The tumor is growing. 3.1cm when initially seen in the CAT scan and now it's around 5cm. I'm actually starting to feel a "fullness" on the left side of my neck and the tumor is clearly visable. I just want to get going with this!

    Thanks again...

    "T"

  • donfoo
    donfoo Member Posts: 1,763 Member
    fishmanpa said:

    Thanks Guys!

    I don't know if I'll be getting Amifostine. They didn't mention it. I know I'll be getting anti nausea drugs at infusion and to take afterwards and to help with breakthrough nausea. You're right P, in that I'm getting lower doses of Cisplatin over a longer period of time, most likely due to my heart condition.

    I know it all remains to be seen how my body and psyche will react to all of this. I have my moments but for the most part I'm Ok with it. Like I mentioned in previous posts, I'm pissed more than anything else. How dare Jack come along and mess things up! I'll use that as a motivating force to defy that SOB and kick his tush to the ground ;)~ (I know... big talk from someone who hasn't been in the ring yet ~lol~) I do however like the idea of working from a comfy chair. In fact, my partner and I were out looking at recliners over the weekend. When I had the PET scan done, they put me in a really nice recliner and covered me with a warm blanket while the injection was working. It was quite comfy and I promptly passed out.

    Hopefully, they'll have music in the rad and chemo rooms. I know they did when I had the stents put in. Most of the stuff I listen to is much like what I play. I call it "eclectic acoustic ear candy". Classic stuff mostly from the 60's and 70's. Simon and Garfunkel, Jim Croce, acoustic Jethro Tull, Cat Stevens,songs from Scrubs etc. I'll have to burn a "chemorad mix" CD for treatments. 

     

    I do have a question for everyone...

    How long was it from the time you were diagnosed until you started treatment? I ask because it seems like this is taking forever. I was initially officially diagnosed on Nov. 30th and we're going on 8 weeks now. The tumor is growing. 3.1cm when initially seen in the CAT scan and now it's around 5cm. I'm actually starting to feel a "fullness" on the left side of my neck and the tumor is clearly visable. I just want to get going with this!

    Thanks again...

    "T"

    Joined the battle the same time

    >> How long was it from the time you were diagnosed until you started treatment? I ask because it seems like this is taking forever. I was initially officially diagnosed on Nov. 30th and we're going on 8 weeks now.  <<

    Hiya,

    I went to my initial visit the same day; 30 Nov. By 3 Dec I had an initial diagnosis. This week Thursday my case goes to the Cancer Tumor Board, Friday I seen the MO (second visit), scheduled for port a week from today, then induction chemo should start immediately.

    I agree it seems like it is a long process. My wife feels it far more actuely than I. For me, the time is passing really fast as I am doing a LOT of learning along the way, trying to get up to speed and informed as much as I can in order to understand what is being discussed and planned and able to ask the right questions.

    FYI - The final diagnosis did not come until the very end of December. A FNA was done mid December but a full biopsy was done under anaesthesia on the 26 Dec, Final report was a few days later. So it has not been so long for me.

    Hang in there, things will get started soon enough.

    Lastly, I had to smile when I read your comment about being pissed! I have a LOT of energy to FIGHT! It's like bring it on you POS. I am mad as hell and I am going to take you down and kick your **** to the end. 200% effort until I win or lose, although I have in my mind already the hands up victory pose!

    Don

     

     

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member
    donfoo said:

    Joined the battle the same time

    >> How long was it from the time you were diagnosed until you started treatment? I ask because it seems like this is taking forever. I was initially officially diagnosed on Nov. 30th and we're going on 8 weeks now.  <<

    Hiya,

    I went to my initial visit the same day; 30 Nov. By 3 Dec I had an initial diagnosis. This week Thursday my case goes to the Cancer Tumor Board, Friday I seen the MO (second visit), scheduled for port a week from today, then induction chemo should start immediately.

    I agree it seems like it is a long process. My wife feels it far more actuely than I. For me, the time is passing really fast as I am doing a LOT of learning along the way, trying to get up to speed and informed as much as I can in order to understand what is being discussed and planned and able to ask the right questions.

    FYI - The final diagnosis did not come until the very end of December. A FNA was done mid December but a full biopsy was done under anaesthesia on the 26 Dec, Final report was a few days later. So it has not been so long for me.

    Hang in there, things will get started soon enough.

    Lastly, I had to smile when I read your comment about being pissed! I have a LOT of energy to FIGHT! It's like bring it on you POS. I am mad as hell and I am going to take you down and kick your **** to the end. 200% effort until I win or lose, although I have in my mind already the hands up victory pose!

    Don

     

     

    The Waiting is the Hardest Part....

    Hi Don,

    Thanks for the note. Seems like we'll be heading into treatment within days of each other. I'm scheduled to see my dentist for a cleaning and flouride treatment tomorrow so I'll have that out of the way. I'm heading up to see my family and friends this weekend as I won't be able to for a while. When I get back I'm hoping to know my start date.

    I hear you about the fight! I'm not a violent man nor have I ever been, but if "Jack" were a person standing in front of me I'd go postal on him! Here's the fight and kicking butt!

    "T"