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  • Steve5
    Steve5 Member Posts: 147
    #42
    Ruben and Jude said:

    It's Scary!

    Steve,

    God Bless You! It is scary. I was scared out of my wits for my husband. He is 59 and was diagnosed in February after finding a buldge (lymph node) on the left side of his neck. Needle biopsy revealed it was cancer. After several other diagnostic tests and then a tonsillectomy, it was found that his left tonsil was cancerous. He HAD Stage IV, HPV+ P16 cancer. He underwent 35 rounds of radiation treatment with 3 concurrent rounds of chemo. It was no piece of cake, no picnic, BUT he endured and survived.

    6 weeks after his last treatment, his PET scan revealed No Evidence of Disease (NED). Typically there is some residual left over because of the radiation.... but his PET show NOTHING.... nada. Praise God.

    Our faith in God grew. We depended on Him to guide and direct the treatment. We did everything the doctors recommended.  You may feel like you're alone, but you're not, ever. 

    Stay strong. Be a warrior. You can, and you will do this. There is light at the end of the tunnel.

    Best regards.

    Jude (and Ruben)

    It's Scary

    Jude and Ruben that is wonderful!! God Bless you - Thank you for your support - it really means alot!  I am looking forward to that light at the end of the tunnel - I am looking for a rebirth in Spring of new life - I have had my pre -op, I will have my PET monday and then get a port, PEG intalled this week and meet with rad oncol and oncol next week  - so like all of the great people here who have responded and helped I wil get a plan on the treatment - right now I believe it will be cisplatin each week and radiation daily for 6-7 weeks.  I can't wait to earn my righ to say NED!!  Thank you and everyone for not lettng me be alone - I am definitely drawing strength from all of you.

    God Bless

    Steve

  • Steve5
    Steve5 Member Posts: 147
    #43
    CivilMatt said:

    Plan is set

    Steve,

    See you are moving faster already.

    As the start of treatments draws nearer, you make want to check-out the Superthread for items all H&N members may need.  There is an extensive list in there.  I think I counted once and I had 22 or 24 of the things listed (you want to be over prepared, like 3 spare tires over prepared).

    Also, I had my first post scan at 12 weeks and it was clean.

    Hopefully, you will have an uneventful 8 to 10 weeks, but remember there are lots of meds and common sense tricks and tips to get you over the rough spots.  Virtually, nobody gets all the uncomfortable side effects, really!

    You will be ok,

    Matt

    Working and Driving

    Matt and others - what about working during treatments - the first week or two, how about driving to treatments, my wife and I are wondering what in general it will be like after the first two weeks and whether everyone keeps going to work early in the treatment and cannot later, and whether you always need a ride to treatments - my ride will be 90 minutes each way to and from, thanks - just wanted to get some more eductation and prepared.  PET scan tomorrow, Rad Oncol this week, port, and PEG install end of week - you are right for some reason this is a plan getting going and seems like it is a small step forward - I am working on thinking this through now one day at a time

    Can I ask one more question - why do I feel so good - I can do anything right now like there is nothing wrong - walk, talk, ride, drive, chop logs, rake leaves, go to games - but then this lump in my neck - okay just talking this through and like I said helps to write it out - appreciate everyones input to get better prepared - am reading the superthread and taking notes - really helpful

    Thanks for any input and your continued strength

    Steve

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #44
    Steve5 said:

    Working and Driving

    Matt and others - what about working during treatments - the first week or two, how about driving to treatments, my wife and I are wondering what in general it will be like after the first two weeks and whether everyone keeps going to work early in the treatment and cannot later, and whether you always need a ride to treatments - my ride will be 90 minutes each way to and from, thanks - just wanted to get some more eductation and prepared.  PET scan tomorrow, Rad Oncol this week, port, and PEG install end of week - you are right for some reason this is a plan getting going and seems like it is a small step forward - I am working on thinking this through now one day at a time

    Can I ask one more question - why do I feel so good - I can do anything right now like there is nothing wrong - walk, talk, ride, drive, chop logs, rake leaves, go to games - but then this lump in my neck - okay just talking this through and like I said helps to write it out - appreciate everyones input to get better prepared - am reading the superthread and taking notes - really helpful

    Thanks for any input and your continued strength

    Steve

    you kind of have to take this as it comes

    I have had complete radiation twice.  The first time, I worked every day throughout treatment. I was very tired, and slept a lot, but I was able to carry on with a reduced schedule.  This is likely as good as it gets.  The second rads was harder, as i had some pain issues too.  I still drove myself to and from rads every day, preferring to do it myself.  I didn't work during second rads, but I could have, albeit on a very reduced schedule.  I should say I had absolutely no complications whatsoever to either therapy.  Others have not fared as well, and with complications, all bets are off.  I had contingency plans in case of problems both times. 

     

    pat

  • Steve5
    Steve5 Member Posts: 147
    #45
    Ruben and Jude said:

    It's Scary!

    Steve,

    God Bless You! It is scary. I was scared out of my wits for my husband. He is 59 and was diagnosed in February after finding a buldge (lymph node) on the left side of his neck. Needle biopsy revealed it was cancer. After several other diagnostic tests and then a tonsillectomy, it was found that his left tonsil was cancerous. He HAD Stage IV, HPV+ P16 cancer. He underwent 35 rounds of radiation treatment with 3 concurrent rounds of chemo. It was no piece of cake, no picnic, BUT he endured and survived.

    6 weeks after his last treatment, his PET scan revealed No Evidence of Disease (NED). Typically there is some residual left over because of the radiation.... but his PET show NOTHING.... nada. Praise God.

    Our faith in God grew. We depended on Him to guide and direct the treatment. We did everything the doctors recommended.  You may feel like you're alone, but you're not, ever. 

    Stay strong. Be a warrior. You can, and you will do this. There is light at the end of the tunnel.

    Best regards.

    Jude (and Ruben)

    It's Scary

    Jude and Ruben - and others who can comment - what are the two months like after treatment ends as far as do you need a caregiver during the day alot, has anyone been home with younger children during this period like 9 year olds on some days - just preparing and scheduling as best we can to prepare for these times.

    Thanks

    Steve

  • wild willy
    wild willy Member Posts: 63 Member
    #46
    HOPE

    welcome steve. i dont have any words of wisdom but i do have some words of hope. if its any help to you i am almost 4 yrs out and doing pretty good. i am 3 months out from 74 yrs old and and just got back from my 3rd yr wilderness elk hunt. rode horseback and packed in the rockies. havent missed but one yr because of C. i am horseback almost every day and work on my 20 acre ranch/farm every day . its not easy and never will be but doable. i can eat most anything,no taste but can swallow. getting my saliva back slowly. as you can see it will take time but you can do it.dont expect overnight progress it will come in small steps. hope this helped.

  • lornal
    lornal Member Posts: 428
    #47
    Steve5 said:

    It's Scary

    Jude and Ruben - and others who can comment - what are the two months like after treatment ends as far as do you need a caregiver during the day alot, has anyone been home with younger children during this period like 9 year olds on some days - just preparing and scheduling as best we can to prepare for these times.

    Thanks

    Steve

    after treatment

    For 2 months after treatment, I was still going to the hopital 3-4 times a week for fluids. I did not have a feeding tube.  Now that I know what they are like, I wish I did

    Fortunately, my husband wasn't working, so he has mom, dad, and caregiver.  After 2 months, I did go back to work - parttime at first, and then full time.  But it was several more months before I started participating in the kids activities - mine were 10 and 15 at the time.  I worked, came home, ate something, and went to bed - probably for 3-4 months.

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #48
    Steve5 said:

    It's Scary

    Jude and Ruben - and others who can comment - what are the two months like after treatment ends as far as do you need a caregiver during the day alot, has anyone been home with younger children during this period like 9 year olds on some days - just preparing and scheduling as best we can to prepare for these times.

    Thanks

    Steve

    You Know Best...

    You'll know best when you get to that point...

    You know yourself better than we do.., for me I worked entriely from home during my treatment, and it was very doable..., computer work... 

    But the several weeks post Tx, I did have much less energy and needed a lot more rest. 

     

    I couldn't have catered to children around the clock for sure..., LOL.. But in all honesty, I don't think even at nearly five years post Tx I could deal with handling children 24/7.

    Anyways, my thoughts is that you more than likely can take care of the kids most of the time, but you are going to have to rest yourself also...

    Best,

    John

  • Tanager75
    Tanager75 Member Posts: 89 Member
    #49
    Welcome

    A DAY AT A TIME.  This thought helped me contain my anxiety if you have any.  It is a really weird experience coming up.  I lost some ability to do some things but really came to appreciate what was important for my life.  I'm sending positive thoughts your way.

     

    Peace,

     

    mark

  • Steve5
    Steve5 Member Posts: 147
    #50
    CivilMatt said:

    Plan is set

    Steve,

    See you are moving faster already.

    As the start of treatments draws nearer, you make want to check-out the Superthread for items all H&N members may need.  There is an extensive list in there.  I think I counted once and I had 22 or 24 of the things listed (you want to be over prepared, like 3 spare tires over prepared).

    Also, I had my first post scan at 12 weeks and it was clean.

    Hopefully, you will have an uneventful 8 to 10 weeks, but remember there are lots of meds and common sense tricks and tips to get you over the rough spots.  Virtually, nobody gets all the uncomfortable side effects, really!

    You will be ok,

    Matt

    Plan getting set

    Matt and others - met with the Rad Oncologist today - laid out that I will be getting 7 weeks of rad and chemo once per week Mon,Tues or on a Wed - 2 Gy a shot - the rads will only take 5 minutes but the doc says to plan an hour for each treatment - a CAT scan on each one to make sure they line it up right - he went over all the side affects - it was good to have all of you providing information so that it wasn't a complete smack in the face as to what might and is coming down the line - showed me a mask -looked like a fencers mask and told me it will go to my shoulders to keep them from moving around - offered valium for me since I am a little claustrophobic - needed an open MRI for a back issue versus the other kind - told me pain meds for my throat so that I would continue to take in liquids and keep the swallowing up - you all know the rest - tomorrow is the port and PEG and salivary gland move (on the good side) - next week dentist - the two weeks before I go in to prepare for treatment - simulation - did all of you have to wait that long - sorry - alot in this, but again helps to write, perhaps I should take this to the blog or this okay to keep it here

    Thanks everyone - I read the CSN daily to prepare, see how and what others are doing and take strength from you guys - my wife and I are now making sure we use the "one day at a time" rule whenever we talk about preparing and what is coming and after

    Steve

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #51
    Steve5 said:

    Plan getting set

    Matt and others - met with the Rad Oncologist today - laid out that I will be getting 7 weeks of rad and chemo once per week Mon,Tues or on a Wed - 2 Gy a shot - the rads will only take 5 minutes but the doc says to plan an hour for each treatment - a CAT scan on each one to make sure they line it up right - he went over all the side affects - it was good to have all of you providing information so that it wasn't a complete smack in the face as to what might and is coming down the line - showed me a mask -looked like a fencers mask and told me it will go to my shoulders to keep them from moving around - offered valium for me since I am a little claustrophobic - needed an open MRI for a back issue versus the other kind - told me pain meds for my throat so that I would continue to take in liquids and keep the swallowing up - you all know the rest - tomorrow is the port and PEG and salivary gland move (on the good side) - next week dentist - the two weeks before I go in to prepare for treatment - simulation - did all of you have to wait that long - sorry - alot in this, but again helps to write, perhaps I should take this to the blog or this okay to keep it here

    Thanks everyone - I read the CSN daily to prepare, see how and what others are doing and take strength from you guys - my wife and I are now making sure we use the "one day at a time" rule whenever we talk about preparing and what is coming and after

    Steve

    steve, glad you have a plan

    steve, glad you have a plan and that you felt you were prepared to hear what the doc had to say on side effects.  the valium is a good idea.  some others here used that or something else to help them.  i hope the port and peg are no big deals.  i know the peg is easy but i didn't have a port so not sure about that.  good luck at the dentist.  i hate the dentist worse than any type of doctor  Yell.  many here had to wait for their tx to get started so don't feel alone.  you didn't write/say too much.  you can never write/say too much here.  that's why we're all here, to listen to each other and help however we can.  so please write as much and as often as you want!  be sure to continue to use the "one day at a time" rule, it really does help.  take care.

    God bless,

    dj

  • alligatorpointer
    alligatorpointer Member Posts: 131
    #52
    Steve5 said:

    Plan getting set

    Matt and others - met with the Rad Oncologist today - laid out that I will be getting 7 weeks of rad and chemo once per week Mon,Tues or on a Wed - 2 Gy a shot - the rads will only take 5 minutes but the doc says to plan an hour for each treatment - a CAT scan on each one to make sure they line it up right - he went over all the side affects - it was good to have all of you providing information so that it wasn't a complete smack in the face as to what might and is coming down the line - showed me a mask -looked like a fencers mask and told me it will go to my shoulders to keep them from moving around - offered valium for me since I am a little claustrophobic - needed an open MRI for a back issue versus the other kind - told me pain meds for my throat so that I would continue to take in liquids and keep the swallowing up - you all know the rest - tomorrow is the port and PEG and salivary gland move (on the good side) - next week dentist - the two weeks before I go in to prepare for treatment - simulation - did all of you have to wait that long - sorry - alot in this, but again helps to write, perhaps I should take this to the blog or this okay to keep it here

    Thanks everyone - I read the CSN daily to prepare, see how and what others are doing and take strength from you guys - my wife and I are now making sure we use the "one day at a time" rule whenever we talk about preparing and what is coming and after

    Steve

    One day at a time

    Steve, you seem to be taking everything in stride and have prepared yourself as well as anyone is able to. Your treatment schedule seems to be falling into the timeline most patients experience with the pre-treatment preps taking a few weeks before the first actual radiation/chemo day. Most patients find that the oncology nurses quickly become like extended family.  They are another source of reassurance and strength as well as someone you can reach out to at all hours of the day or night since one of them will most likely be oncall and respond to the emergency phone number you will be given.  The good CSN members posting here will continue to support you with information and encouragement as you move forward "one day at a time". Some of them have soft pockets where you can find comfort when you need to be carried over some rough spots.  The discussion threads will be easier to follow if you frequently "post a new forum topic" as the conversation evolves with the progression of your treatment. Starting a new topic section each time that you post updates or questions makes it easier to find the latest comments and replies without having to scroll through a long thread.  Will be thinking of you tomorrow and hoping you have an easy time with the Port, PEG, and salivary gland procedures.  

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