Scared- please read

13

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  • CherieLW
    CherieLW Member Posts: 472
    #42
    TracyLynn72 said:

    Have a nice dinner tonight..

     

     

    and tell him to eat, eat, eat!!  No one warned me I could lose all sense of taste and that I'd have nasty mouth sores.  If I had known I would have eaten a LOT more before starting treatment...and enjoyed every bite!  :)

    The small milestones have made things MUCH easier for me because I feel like I meet a "goal" each week.  My techs tell me every treatment "one day at a time, there's another one done" and that makes me smile each time!

    Honestly, radiation doesn't feel like anything.  It's like getting an xray, you hear noises and you have to be still, but you don't really feel anything.  It's the side effects that you "feel" more than anything.  Tell him to always be upfront with his doctors and if he needs medicine...get it and use it.  No shame in that at all!  I use the magic mouthwash and it's fantastic.  I also rinse every hour or so with 1 quart of water, 1 tbsp salt, and 1 tbsp baking soda.  My trouble right now is eating.  I can't taste anything and so everything tastes like snot to me.  Gross, I know, but true. 

    Let him know about this site, he might enjoy reading up on things, too.  I hope you have a very nice dinner and keep things upbeat.  He's going to have tough times, we all do, but he's going to come out of this stronger and well!  

     

     

    It would have been nice to

    It would have been nice to know that I'm sure!  My dad's doc said he could lose taste for awhile.  How long have you been unable to taste?  I hope that improves for you sooner the better! Thanks again, we will have a great time!  I told mom about this site and I'm going to tell my sister too.  I find it very helpful as I'm sure they will too.

  • CherieLW
    CherieLW Member Posts: 472
    #43
    peggylulu said:

    Hi Cherie ,

    I'm glad that you found this board . Everyone on here , as you know are so knowledgable and so happy to help! I am a "Newbie" and can't offer a lot , but I can tell you that you don't feel anything during Radiation treatments . The worse part is having to wear a mask that they make for you so that you can't move your head . After the first few times it didn't bother me as much. Then after a few treatments it starts to feel more and more like a bad sunburn but they will tell you what to use for that. I started useing Aquaphor (you can buy it at any Drug store or Wal-mart.) at the very start of treatments and I never had any blisters or sores.I used it twice a day once after treatments ( they don't want anything on the neck before treatments)and again at bedtime. It feels very greasey and some on here didn't like that but it didn't bother me. If his gets bad there are some other creames that others used that will help more.  I hope this helps .

     

     

    Peggy

    Thanks for the info Peggy!

    Thanks for the info Peggy! I'm going to write down everyones suggestions. Can you tell me about how long chemo and radiation take?  I'm sure chemo may be longer for some depending on strength... Thanks again,  everyone's so nice and willing to help.   I appreciate it.  Best of luck to you. 

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #44
    CherieLW said:

    Thanks Deb, I'm trying to

    Thanks Deb, I'm trying to work on that relaxing thing.  

    My dad thought he had a sinus infection that wouldn't go away for a long time.  When he did finally go to the doc they tried several antibiotics and nothing.  I hope me just putt8ng that out there it will encourage others to get checked out if they think something isn't right or it doesn't go away.  Im trying to look at it positively,  they caught it early. Congrats on your anniversary!   3 years cancer free is great!   I will pray that it stays that way!  :)

     

    Hi Again, Cherie

    You have a question buried somewhere above, asking what the difference is between a PEG Tube and a "G" Tube.  They both perform the same function, i.e. they both supply liquid food directly to the stomach.  PEG stands for "percutaneous endoscopic gastronomy" which means installation of the tube is a simple outpatient process where they send an "endoscope" (and then the tube) down the throat, and all the way into the stomach.  Then they make a small incision, and pull out the end of the tube, so that the end of the tube sticks out through the tissues and skin (percutaneous).  The tube stays in place because it has a bit of a balloon, or a flare at the end still in the stomach.  Removal is a simple process of de-inflating any balloon stoppers, and just jerking the tube out.  A "G" tube, or gastric tube is similar but requires surgery to install and surgery to remove, and stitches.  Both tubes have the little connector on the outside end, through which a syringe, or a gravity feeding bag, or a pump feeding bag can be connected. I had a pump on mine.  Made it simple.

    Keep those questions coming.  That is what we are here for.

    Deb

  • ToBeGolden
    ToBeGolden Member Posts: 695
    #45
    On the Light Side

    For chemo, your dad will need to become an expert on the 100-yard dash to the rest room while attached to the IV-stand. Seriously, always know the location of the two closest rest rooms. And the caregiver can scout whether they are unoccupied before the patient makes the trip. (This is intended to be somewhat funny.) Rick.

  • peggylulu
    peggylulu Member Posts: 375
    #46
    CherieLW said:

    Thanks for the info Peggy!

    Thanks for the info Peggy! I'm going to write down everyones suggestions. Can you tell me about how long chemo and radiation take?  I'm sure chemo may be longer for some depending on strength... Thanks again,  everyone's so nice and willing to help.   I appreciate it.  Best of luck to you. 

    I didn't have

    any Chemo but seems every one is different on here . I had surgery and Radiation . I had 33 treatments , one a day 5 days a week . It was about 6 weeks . I am about 7 months out of treatments and have not gotten my salavia sp ? back and very little taste . I mostly eat soups and Ensure and for some reason Ice Cream with Dr. Pepper taste pretty normal.

    Peggy

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #47
    CherieLW said:

    It would have been nice to

    It would have been nice to know that I'm sure!  My dad's doc said he could lose taste for awhile.  How long have you been unable to taste?  I hope that improves for you sooner the better! Thanks again, we will have a great time!  I told mom about this site and I'm going to tell my sister too.  I find it very helpful as I'm sure they will too.

    very early on

    I lost my taste after the first week of rads.  Totally gone.  Nothing.  The mouth sores appeared at the same time.  I was like "what in the world???"  That's why I'm so glad I found this site.  Everyone is very encouraging, but also very honest. 

    I hope y'all are having a GREAT dinner and evening together :)

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

    On the Light Side

    For chemo, your dad will need to become an expert on the 100-yard dash to the rest room while attached to the IV-stand. Seriously, always know the location of the two closest rest rooms. And the caregiver can scout whether they are unoccupied before the patient makes the trip. (This is intended to be somewhat funny.) Rick.

    Pee King...

    and the reason that I was labeled the PeeKing on my very first day....

    JG

  • CherieLW
    CherieLW Member Posts: 472
    #49
    TracyLynn72 said:

    very early on

    I lost my taste after the first week of rads.  Totally gone.  Nothing.  The mouth sores appeared at the same time.  I was like "what in the world???"  That's why I'm so glad I found this site.  Everyone is very encouraging, but also very honest. 

    I hope y'all are having a GREAT dinner and evening together :)

    Wow, that's pretty fast.  I

    Wow, that's pretty fast.  I can't even imagine what that would be like and then trying to maintain nutrition at the same time. Hope your mouth heals.  Thx we had a great night,  them they returned to my place to watch a funny movie.  Makes me feel good to see him smile and laugh.  Of course I broke down for a minute,  which is disappointing bc I need to be very positive for him.  He knows he needs to do this.  

  • CherieLW
    CherieLW Member Posts: 472
    #50
    D Lewis said:

    Hi Again, Cherie

    You have a question buried somewhere above, asking what the difference is between a PEG Tube and a "G" Tube.  They both perform the same function, i.e. they both supply liquid food directly to the stomach.  PEG stands for "percutaneous endoscopic gastronomy" which means installation of the tube is a simple outpatient process where they send an "endoscope" (and then the tube) down the throat, and all the way into the stomach.  Then they make a small incision, and pull out the end of the tube, so that the end of the tube sticks out through the tissues and skin (percutaneous).  The tube stays in place because it has a bit of a balloon, or a flare at the end still in the stomach.  Removal is a simple process of de-inflating any balloon stoppers, and just jerking the tube out.  A "G" tube, or gastric tube is similar but requires surgery to install and surgery to remove, and stitches.  Both tubes have the little connector on the outside end, through which a syringe, or a gravity feeding bag, or a pump feeding bag can be connected. I had a pump on mine.  Made it simple.

    Keep those questions coming.  That is what we are here for.

    Deb

    Deb, thanks once again for

    Deb, thanks once again for giving me valuable information.  I am so glad I found this site,  you all have been through it and it's so nice that you can help others through it too.  How long do people typically have to have a feeding tube?  Is it just temporary?  One thing that I love about my dad is that he had handled this news better than the rest of us.  I don't know if it was that way for you,  but I really admire how strong he is.  I know that it won't be cake,  but I have more faith that he will recover quickly. . Thx again :)

  • CherieLW
    CherieLW Member Posts: 472
    #51
    ToBeGolden said:

    On the Light Side

    For chemo, your dad will need to become an expert on the 100-yard dash to the rest room while attached to the IV-stand. Seriously, always know the location of the two closest rest rooms. And the caregiver can scout whether they are unoccupied before the patient makes the trip. (This is intended to be somewhat funny.) Rick.

    I didn't notice if anyone

    I didn't notice if anyone answered this,  but how long does chemo typically last?  I want to be there the day dad goes in,  but can't take off work d/t just returning from breaking my leg so I will be visiting him that day after work. Also, do you feel bad the day of chemo or is it worse the following week?  It would be great to hear your inputs on this. 

  • Netracer61
    Netracer61 Member Posts: 14
    #52
    CherieLW said:

    I didn't notice if anyone

    I didn't notice if anyone answered this,  but how long does chemo typically last?  I want to be there the day dad goes in,  but can't take off work d/t just returning from breaking my leg so I will be visiting him that day after work. Also, do you feel bad the day of chemo or is it worse the following week?  It would be great to hear your inputs on this. 

    What was you fathers diagnosis?

    What was your father diagnosed with? Esthesioneuroblastoma?  If so I can probably answer qustions you may have. Stay positive, keep the faith and know your family is in our prayers.

  • Netracer61
    Netracer61 Member Posts: 14
    #53
    CherieLW said:

    I didn't notice if anyone

    I didn't notice if anyone answered this,  but how long does chemo typically last?  I want to be there the day dad goes in,  but can't take off work d/t just returning from breaking my leg so I will be visiting him that day after work. Also, do you feel bad the day of chemo or is it worse the following week?  It would be great to hear your inputs on this. 

    What was you fathers diagnosis?

    What was your father diagnosed with? Esthesioneuroblastoma?  If so I can probably answer qustions you may have. Stay positive, keep the faith and know your family is in our prayers.

  • Netracer61
    Netracer61 Member Posts: 14
    #54
    CherieLW said:

    I didn't notice if anyone

    I didn't notice if anyone answered this,  but how long does chemo typically last?  I want to be there the day dad goes in,  but can't take off work d/t just returning from breaking my leg so I will be visiting him that day after work. Also, do you feel bad the day of chemo or is it worse the following week?  It would be great to hear your inputs on this. 

    What was you fathers diagnosis?

    What was your father diagnosed with? Esthesioneuroblastoma?  If so I can probably answer qustions you may have. Stay positive, keep the faith and know your family is in our prayers.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #55
    CherieLW said:

    Deb, thanks once again for

    Deb, thanks once again for giving me valuable information.  I am so glad I found this site,  you all have been through it and it's so nice that you can help others through it too.  How long do people typically have to have a feeding tube?  Is it just temporary?  One thing that I love about my dad is that he had handled this news better than the rest of us.  I don't know if it was that way for you,  but I really admire how strong he is.  I know that it won't be cake,  but I have more faith that he will recover quickly. . Thx again :)

    Cherie....there is no set time

    limit on the tube.  Generally, it stays in until a person is able to get enough food in them per day to either maintain thier weight or gain some after treatments are over.  I had mine in for 7 months....the last 2 of which I never used it.  I wasn't gaining weight, tho....so they kept it in (it didn't make sense to me, tho....since I wasn't going to use it for food, when I could swallow fine....I think they thought I'd eat more if they refused to take it out....blackmail Laughing).....

    Some folks have a lot harder time getting food down after rads, tho....the one thing that is truly consistant with HNC is everybody's experience is a little different.....

    p

  • CherieLW
    CherieLW Member Posts: 472
    #56
    Netracer61 said:

    What was you fathers diagnosis?

    What was your father diagnosed with? Esthesioneuroblastoma?  If so I can probably answer qustions you may have. Stay positive, keep the faith and know your family is in our prayers.

    I can't remember the exact

    I can't remember the exact diagnosis.  Docs did tell him that is highly curable and not staged.  I don't know if that helps.   I will try to find out exact name tomorrow. I don't believe it's the type you mentioned but thank you.  How has treatment been for you and how are you doing now?  Thank you and you will also be in my prayers! I can't wait to put these next few months behind us. 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #57
    CherieLW said:

    Deb, thanks once again for

    Deb, thanks once again for giving me valuable information.  I am so glad I found this site,  you all have been through it and it's so nice that you can help others through it too.  How long do people typically have to have a feeding tube?  Is it just temporary?  One thing that I love about my dad is that he had handled this news better than the rest of us.  I don't know if it was that way for you,  but I really admire how strong he is.  I know that it won't be cake,  but I have more faith that he will recover quickly. . Thx again :)

    Cherie, nobody recovers quickly....

    It's a battle that none of us have ever encountered before..., and survived, LOL.

    My saying, and don't take this wrong..., "If the cancer doesn't kill you, the treatment will come close"... It's very rough, but also very doable and very survivable.

    Don't get wrapped around the PEG.... I didn't have one, as others haven't either... I survived and never suffered at all by not having one... Others swear they wouldn't have survived...

    My advise, do what the MD's prescribe..., they are the pros..

    There will be plenty of other things that will come up that are much more important and that will challenge you more...

    Best,

    John

  • CherieLW
    CherieLW Member Posts: 472
    #58
    Skiffin16 said:

    Cherie, nobody recovers quickly....

    It's a battle that none of us have ever encountered before..., and survived, LOL.

    My saying, and don't take this wrong..., "If the cancer doesn't kill you, the treatment will come close"... It's very rough, but also very doable and very survivable.

    Don't get wrapped around the PEG.... I didn't have one, as others haven't either... I survived and never suffered at all by not having one... Others swear they wouldn't have survived...

    My advise, do what the MD's prescribe..., they are the pros..

    There will be plenty of other things that will come up that are much more important and that will challenge you more...

    Best,

    John

    Thanks for answering my

    Thanks for answering my questions I am just never had to deal with this before like this.  I guess I just am curious.  I just have no idea what he will be capable after all of this.  

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #59
    CherieLW said:

    Thanks for answering my

    Thanks for answering my questions I am just never had to deal with this before like this.  I guess I just am curious.  I just have no idea what he will be capable after all of this.  

    My Guess...

    He will be as capable of everything he was before cancer...

    None of us have had to go through this before, LOL..., and hopefully never again.

    You sound just like many newbies here, and think exactly as I did once...

    When I heard I had cancer.... first thing I thought of was pale, frail, no haired people that eventually whithered away and died...

    That is far from reality these days..., if you have to have cancer, now is the time..., best meds, best MD's, best technology... This cancer is very curable for most of us...

    I gaurantee, by this time next year, you are going to be so cancer eductaed, that you can't even imagine it right now...

    If your dad is like the rest of us, more than likely he is going to be a better person for having had it...

    Things that were once huge, not so much now days... Things that were low priority before, are most important now...

    John

  • phrannie51
    phrannie51 Member Posts: 4,716
    #60
    CherieLW said:

    I didn't notice if anyone

    I didn't notice if anyone answered this,  but how long does chemo typically last?  I want to be there the day dad goes in,  but can't take off work d/t just returning from breaking my leg so I will be visiting him that day after work. Also, do you feel bad the day of chemo or is it worse the following week?  It would be great to hear your inputs on this. 

    The chemo reaction is another

    individual thing.  Some folks feel nausiated for a while after, others not so much.  What's really important is that he take his anti-nausea meds...and not wait to feel sick to take them.  My Oncologist gave me a schedule to adhere to, and I did.  I'd feel kind of crappy for 5 or 6 days, then things would turn around for the next two weeks. 

    Your dad will be doing what he has always done once treatment is over....and then some (can has a way of handing us the revelation that life isn't forever, so we make decisions to do things that we always wanted but never seemed to have time for).  I went back to work 6 weeks after my last treatment, and generally my life has gone back to where it was before I was diagnosed.

    p

  • yensid683
    yensid683 Member Posts: 349
    #61
    CherieLW said:

    I didn't notice if anyone

    I didn't notice if anyone answered this,  but how long does chemo typically last?  I want to be there the day dad goes in,  but can't take off work d/t just returning from breaking my leg so I will be visiting him that day after work. Also, do you feel bad the day of chemo or is it worse the following week?  It would be great to hear your inputs on this. 

    How long does chemo last?

    Saying 'it depends' is a poor response, but it does depend on the drug and the individual.

    I had induction chemo to start, 5 days as an in-patient on continual high dose infusion.  I had three separate meds, one day each for two of them and then 3 days for the last.  I don't want to be alarmist, but the after effects lived up to their stereotypes for me.  They gave me all kinds of meds to ameliorate the side effects, but they didn't do a lot for me.  It took about a week and a half to feel more 'normal' after an induction session.

    When I was in rads, it was a single weekly session at the infusion center.  I would get a regular IV started, they'd draw blood and see what my chemistry was and sometimes they'd run a liter of normal saline before they'd administer the erbitux, and sometimes they wouldn't. 

    If they ran only the erbitux, it was about an hour and a half or so, if they ran the fluids and the erbitux, it was about 3-4 hours.  I was usually there at lunch time and surprising me to no end, they supplied lunches!  Sandwiches, chips, soda pop or water, and fruit.  I could do a sandwich in the first couple of treatments, but once the sore throat and dry mouth showed up, it was just soda and apple sauce for me. 

    Erbitux had virtually no side effects for me save an acne like skin rash that for a 58 year old man was slightly embarassing.  My oncologist prescribed an anti-biotic cream that cleared it right up.

    You're worrying yourself way too much about this Cherie, don't borrow trouble if you don't need to....

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