Dad's 1st chemo yesterday, rad begins wednesday

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  • CherieLW
    CherieLW Member Posts: 472

    No Peg Tube

    Cherie,

    So happy that you are feeling a little more positive, it's the best gift we can give our loved ones.  It shows we have strength, strength that they can lean on when they  need to.  Cherie, you are much younger than myself but I can tell you that once you get to the other side of this you will look in the mirror and see a much stronger woman than the one that stands there today. 

    No Alan did not want a PEG so he is going without one.  He has currently stopped eating normal food, however....I did get a scrambled eat down him earlier today.  He drinks Ensure Plus.  Remember Ensure Plus has an extra 100 calories in it,so it's worth the extra you pay for it.  We start week 5 of 6 weeks tomorrow and so far as long as it is in liquid form he can swallow it.  Interestingly enough sometimes liquid can be too thin and so we add something called "Thicken Up" to it so it's easier to swallow.  If you have an email or an iphone I would be happy to send you pictures of some of the things that have been so helpful. Here is my work email, you can use so your information can be kept private  clambert @nelsonhr.com.  I'm a Regional Recruiter in the San Francisco Bay area.  If you email me I will respond and send all my contact information in case you ever need anyone to just chat with.  Sometimes it feels good to chat with someone that understands what you're going through.

    Honestly the most helpful medication we got was the "magic mouthwash WITH lidocaine".  It numbs his mouth for 2 hours when he has sores, but he hasn't had any lately.  The first 'magic mouthwash" did not have the lidocaine and it wasn't helpful at all.  Also..."Silver Sulfadiazine"  has worked fabulously for his neck.  We started with Aqua Phor, but it was too greasy.  Phrannie said it would be but since the Dr. said to use it we did.  However the Chemo Doctor suggested this and Alan does not have any dry skin or flaking from the radiation.

    Hope this up coming week is kind to you.  Stay strong and positive!

    Christine

     

    Christine,
    Thank you for the

    Christine,

    Thank you for the info!  It is very helpful when I get advice to pass on to dad like this.  I was not sure I got your email correct, but mine is CherieLWillard@gmail.com  just so I know I'm right!  Thank you!  And again, is the stuff you use to thinken foods called thick it?  If so, I may be somewhat familiar with this as I had to use it working in the medical field. 

    And I'm trying to stay positive thanks!  Best wishes to you and Alan!

  • CherieLW
    CherieLW Member Posts: 472

    ron has stage 3 left tonsil

    ron has stage 3 left tonsil cancer with 2 lymph nodes  will have 39 rads with weekly cistplatin

    got his picc today and mask mapped for rads.

    starts everything on monday.

    I have met phrannie, T, skiffin and civil matt and hondo. they and many others have been a wealth of info.

    like you I was freaked and emotional the first week and trying to get a lot of info. then the cancer society sent him a packet telling him survival rates of 50% for 5 years, it was so outdated from 1998 to 2001, was so mad. thats when I got on here and started chewing ears off to get as much info as i could.

    I am a nurse at his primary care drs group, so have a lot of help and support to answer my questions , but they cant help with the answers like these ppl on these boards.

    I will be watching your dads progress closely and it sounds great so far. hope its statys that way.

    there are 2 others on here i chat with too, john and sandy and another person who is almost 4 years out ned. i am bad with names lately due to insomnia is all

    over the place. wonder why?!

    we have our arsenal ready, biotenes, stoppers 4 and xyletine came today. tons of whey protein, berries and yogurt , l-glutamine, mucinex, aquafir lotion.....

    so I guess we are ready to start. will add more once T and the rest post more.

    so keep up the faith, one day at a time is all we can do. we have to take care of ourselves (hard to do with worry) so we stay strong for them.

    god bless

    janet

    Janet,
    I'll be thinking of

    Janet,

    I'll be thinking of you and Ron today!  I'm sure aside from being nervous today, he will do great.  Then he will kind of know what to expect and hopefully you both can handle these trtments a little easier.  I think this website is truly priceless, it's helped prepare me for what to expect in the weeks ahead.  Knowing dad will wear down some, but hoping he stays busy because he has a lot ot work on! 

    I'll be praying for you both, I know this first day is especially hard. So much information is outdated!  I started googling at first to find out information, but I am so grateful I stopped and found this site.  It also will be really helpful that you have a lot of support! It's amazing what they can do since ten years ago.

    Thanks for wishing dad luck, he really has done great this first week.  Not slowed down a bit, out fishing everyday and working on the new house, mowing, going down to his farm (where he has all kinds of projects-not animals lol).  It's amazing how us all staying positive and knowing he's going to be okay is making a difference.  Just remember to keep your husbands spirits up!  

    Hope you are able to relax and find some comfort knowing your husbands going to pull through all these trtments okay!

    Thinking of you both extra today!  Keep me posted on how he does okay?

  • CherieLW
    CherieLW Member Posts: 472

    His first week

    is done! YAY!! Hope your dad is feeling good. 

     

    I hope you're doing ok this week, too. 

    Yes!  Trust me Tracy I'm

    Yes!  Trust me Tracy I'm counting down!  Still thinking of you and praying for you too!  Hope you are doing better than your last post from yesterday.  Hope you really think about everyones input.  Stay strong sweetie....wishing you the best!

  • CherieLW
    CherieLW Member Posts: 472
    CherieLW said:

    Yes!  Trust me Tracy I'm

    Yes!  Trust me Tracy I'm counting down!  Still thinking of you and praying for you too!  Hope you are doing better than your last post from yesterday.  Hope you really think about everyones input.  Stay strong sweetie....wishing you the best!

    Cherie's Mom - Thank You

    This is Cherie's Mother - Melissa - and I personally want to  thank everyone who has responded to Cherie and giving so much of themselves to encourage and support her and all of us.  This means so very much to me.  Wishing you all a healthy future.  Love to all.  Melissa

  • hwt
    hwt Member Posts: 2,328 Member
    CherieLW said:

    Cherie's Mom - Thank You

    This is Cherie's Mother - Melissa - and I personally want to  thank everyone who has responded to Cherie and giving so much of themselves to encourage and support her and all of us.  This means so very much to me.  Wishing you all a healthy future.  Love to all.  Melissa

    Cherie & Melissa

    Your Dad/Husband will do just fine with all of your love and support. We each have to have a reason to fight and it is easy to see where his reasons might be. I pray this is an easy journey for your family.

    God bless,

    Candi

  • CherieLW
    CherieLW Member Posts: 472
    hwt said:

    Cherie & Melissa

    Your Dad/Husband will do just fine with all of your love and support. We each have to have a reason to fight and it is easy to see where his reasons might be. I pray this is an easy journey for your family.

    God bless,

    Candi

    Thanks Candi,
    I gave mom my

    Thanks Candi,

    I gave mom my password and username so she could get on here and look at all the information and post if she wishes.  I'm glad she's finally utilized that info!  Typically it will be posting unless noted otherwise lol. 

  • janetluvsron
    janetluvsron Member Posts: 116
    CherieLW said:

    Janet,
    I'll be thinking of

    Janet,

    I'll be thinking of you and Ron today!  I'm sure aside from being nervous today, he will do great.  Then he will kind of know what to expect and hopefully you both can handle these trtments a little easier.  I think this website is truly priceless, it's helped prepare me for what to expect in the weeks ahead.  Knowing dad will wear down some, but hoping he stays busy because he has a lot ot work on! 

    I'll be praying for you both, I know this first day is especially hard. So much information is outdated!  I started googling at first to find out information, but I am so grateful I stopped and found this site.  It also will be really helpful that you have a lot of support! It's amazing what they can do since ten years ago.

    Thanks for wishing dad luck, he really has done great this first week.  Not slowed down a bit, out fishing everyday and working on the new house, mowing, going down to his farm (where he has all kinds of projects-not animals lol).  It's amazing how us all staying positive and knowing he's going to be okay is making a difference.  Just remember to keep your husbands spirits up!  

    Hope you are able to relax and find some comfort knowing your husbands going to pull through all these trtments okay!

    Thinking of you both extra today!  Keep me posted on how he does okay?

    he survived the first day of

    he survived the first day of rads and the 4 hours of chemo and hydration.

    a little nauseated and little dizzy but on the meds quick to stay on top of it.

    he plans on going to work tomorrow, as long as he is not dizzy,

    i cant believe how achy I am from being so tensed up, my body aches in the shoulders bad. cant imagine how sore he is.

    our son who just graduated college came home last night to go with us to give moral support and that was good. he goes back to

    his place tonight.

    38 more treatments to go!

    ron is resting , not much energy. will wait and see. he was able to sit on the deck while our youngest swam in the pool with our dog.

    god bless all and good luck cherie with your dad

  • MICH4EL
    MICH4EL Member Posts: 73
    Rads

    I am glad things are moving ahead reasonably well.   I had 30 radiation treatments.  No chemo.

     

  • Sunshine60
    Sunshine60 Member Posts: 81
    Caretaker

    It is very hard watching our loved ones go through this tx.  My husband was an unknown primary, 1 lymph node involved- he had  a neck dissection and will finish up his radiation this week ( 31 sessions), no chemo.  He also had his tonsils removed.   I love this site and come here everyday even though I don't post very Often.   They are positive and strong, especially if you have a question or need a cyber hug. They are helpful whether you are the caretaker or the one fighting the "beast". Thank God for them.  Sending positive thoughts your way!

  • CherieLW
    CherieLW Member Posts: 472

    Caretaker

    It is very hard watching our loved ones go through this tx.  My husband was an unknown primary, 1 lymph node involved- he had  a neck dissection and will finish up his radiation this week ( 31 sessions), no chemo.  He also had his tonsils removed.   I love this site and come here everyday even though I don't post very Often.   They are positive and strong, especially if you have a question or need a cyber hug. They are helpful whether you are the caretaker or the one fighting the "beast". Thank God for them.  Sending positive thoughts your way!

    Thanks sunshine!  What is a

    Thanks sunshine!  What is a neck dissection?  I have read that several times on here and it sounds scary...

  • CherieLW
    CherieLW Member Posts: 472
    CherieLW said:

    Thanks sunshine!  What is a

    Thanks sunshine!  What is a neck dissection?  I have read that several times on here and it sounds scary...

    Update

    Thought I would throw in a little update for any newbies who were feeling as lost as I was or just for anyone in general who has been keeping my dad in your prayers. 

    Yesterday he completed his 2nd chemo (one left!) and he has 20 rad treatments (out of 35) to go.  Counting down has helped.  Dad has lost about 14 lbs due to lack of eating I"m sure...Was so glad that yesterday his docs were able to tell him how important it is to eat.  So he is working on that which makes me one very very happy daughter.  It's hard to stay positive when you don't know 100% what to expect.  Trying to think of today and get through it one day at a time.  He is still staying somewhat active.  Just Sunday he was out cutting down a tree with my uncle.  He is taking care of himself from what I can tell.  Of course, a lot of you on here have given great advice so I thank you all.  You are what is helping me get through.  I gave him a whole list of foods everyone suggested and it took him 2 hours to eat 1 packet of cream of wheat on Sunday. But I don't care if it took 2 hours, I'm just glad he got it down. 

    For everyone about to go through this, whether it's a loved one or yourself, please remember how important it is to take care of you during and after treatments.  Caretakers will always be there, but they can't do it for you! For all of you that have offered your support tome and my family I am truly grateful.  It's not easy, but I am more confident than ever that dad will pull through this just fine.  He may have to deal with these side effects, but its temporary.  Staying positive!

    Cherie

  • Duggie88
    Duggie88 Member Posts: 760 Member
    CherieLW said:

    Update

    Thought I would throw in a little update for any newbies who were feeling as lost as I was or just for anyone in general who has been keeping my dad in your prayers. 

    Yesterday he completed his 2nd chemo (one left!) and he has 20 rad treatments (out of 35) to go.  Counting down has helped.  Dad has lost about 14 lbs due to lack of eating I"m sure...Was so glad that yesterday his docs were able to tell him how important it is to eat.  So he is working on that which makes me one very very happy daughter.  It's hard to stay positive when you don't know 100% what to expect.  Trying to think of today and get through it one day at a time.  He is still staying somewhat active.  Just Sunday he was out cutting down a tree with my uncle.  He is taking care of himself from what I can tell.  Of course, a lot of you on here have given great advice so I thank you all.  You are what is helping me get through.  I gave him a whole list of foods everyone suggested and it took him 2 hours to eat 1 packet of cream of wheat on Sunday. But I don't care if it took 2 hours, I'm just glad he got it down. 

    For everyone about to go through this, whether it's a loved one or yourself, please remember how important it is to take care of you during and after treatments.  Caretakers will always be there, but they can't do it for you! For all of you that have offered your support tome and my family I am truly grateful.  It's not easy, but I am more confident than ever that dad will pull through this just fine.  He may have to deal with these side effects, but its temporary.  Staying positive!

    Cherie

    Cherie

    Sounds like Dad is doing good. 14 pounds is not bad. I forget at what stages of treatment a certain amount of pounds came off. I lost a total of 92 but then I could afford it. I did lose alot of muscle in my shoulders that they were concerned over but I was able to stay hydrated. Make sure Dad has plenty of water when outside working in the summer heat.

    Staying positive is a big key to getting through.

     

    O............by the way I had a neck disection. They cut me from behind one ear to the other which is a complete disection, some have a partial which is from the adams apple to one ear. Guess you can say I went all out and by wanting to get my moneys worth.

    Take care

          Jeff

  • sin9775
    sin9775 Member Posts: 199 Member
    CherieLW said:

    Update

    Thought I would throw in a little update for any newbies who were feeling as lost as I was or just for anyone in general who has been keeping my dad in your prayers. 

    Yesterday he completed his 2nd chemo (one left!) and he has 20 rad treatments (out of 35) to go.  Counting down has helped.  Dad has lost about 14 lbs due to lack of eating I"m sure...Was so glad that yesterday his docs were able to tell him how important it is to eat.  So he is working on that which makes me one very very happy daughter.  It's hard to stay positive when you don't know 100% what to expect.  Trying to think of today and get through it one day at a time.  He is still staying somewhat active.  Just Sunday he was out cutting down a tree with my uncle.  He is taking care of himself from what I can tell.  Of course, a lot of you on here have given great advice so I thank you all.  You are what is helping me get through.  I gave him a whole list of foods everyone suggested and it took him 2 hours to eat 1 packet of cream of wheat on Sunday. But I don't care if it took 2 hours, I'm just glad he got it down. 

    For everyone about to go through this, whether it's a loved one or yourself, please remember how important it is to take care of you during and after treatments.  Caretakers will always be there, but they can't do it for you! For all of you that have offered your support tome and my family I am truly grateful.  It's not easy, but I am more confident than ever that dad will pull through this just fine.  He may have to deal with these side effects, but its temporary.  Staying positive!

    Cherie

    Our Loved Ones

    Hi Cherie,  We haven't touched base in a while.  My brother had his second chemo treatment on Monday.  He originally told me that he only needed 30 rads, but turns out that he also needs.  He too is still doing well.  No side-effects so far from the chemo.  He has lost 20 lbs and is still mowing the lawn.  He had a bad couple of days last week with throat pain and was taking liquids through the peg, but his throat rebounded a bit the last couple of days.  A nice surprise.  He has one sore in his mouth.  Has your dad gotten any yet?  God willing, our loved ones will continue on a easier than expected path, but there's a long, long way to go!  Take care.  Stay positive.  Let your dad know I'm praying for him.

    ~Shawn~

  • CherieLW
    CherieLW Member Posts: 472
    Duggie88 said:

    Cherie

    Sounds like Dad is doing good. 14 pounds is not bad. I forget at what stages of treatment a certain amount of pounds came off. I lost a total of 92 but then I could afford it. I did lose alot of muscle in my shoulders that they were concerned over but I was able to stay hydrated. Make sure Dad has plenty of water when outside working in the summer heat.

    Staying positive is a big key to getting through.

     

    O............by the way I had a neck disection. They cut me from behind one ear to the other which is a complete disection, some have a partial which is from the adams apple to one ear. Guess you can say I went all out and by wanting to get my moneys worth.

    Take care

          Jeff

    Jeff,
    Thanks, he is hanging

    Jeff,

    Thanks, he is hanging in there.  I am glad there is only 1 chemo left, but 19 radiations left seems like forever.  So far time has passed quickly- although other days it feels like forever.  Dad also has some extra lbs on him so I hope he doesn't lose too much.  I already feel like when I hug him he's getting smaller :(  I can tell through his chest area and face. He hasn't seemed to lose any hair or have nausea though which is great! Thank God. 

    Still a little confused on the dissection... what did they do after cutting? What is the purpose of it? Why was it necessary and do you know if its a common thing?

    Thanks for explaining! Prayers coming your way!

    Cherie

  • CherieLW
    CherieLW Member Posts: 472
    sin9775 said:

    Our Loved Ones

    Hi Cherie,  We haven't touched base in a while.  My brother had his second chemo treatment on Monday.  He originally told me that he only needed 30 rads, but turns out that he also needs.  He too is still doing well.  No side-effects so far from the chemo.  He has lost 20 lbs and is still mowing the lawn.  He had a bad couple of days last week with throat pain and was taking liquids through the peg, but his throat rebounded a bit the last couple of days.  A nice surprise.  He has one sore in his mouth.  Has your dad gotten any yet?  God willing, our loved ones will continue on a easier than expected path, but there's a long, long way to go!  Take care.  Stay positive.  Let your dad know I'm praying for him.

    ~Shawn~

    Hi Shawn!
    I know, I've been

    Hi Shawn!

    I know, I've been thinking of you and praying for your brother as well.  Glad that your brother is still trying to do things to stay busy.  It hink that helps keep their minds busy too!  Dad has  not gotten any mouth sores that I'm aware of but he did get a mouthwash he has been using with lidocaine, keeping up on wearing flouride trays and everything else docs tell him far as I can tell.  Hope that your brother's mouth is getting better.  If he finds somethng that works to help those sores it will give him a little relief. I'll continue praying for  your brother as well! I defintely hope that they get an easier path through this!

    P.S. You cut out after talking about the 30 rads, what else did your brother also need?  Or did I just read that wrong? Sorry!

    Staying positive and hoping that you are too!

    Cherie

  • sin9775
    sin9775 Member Posts: 199 Member
    CherieLW said:

    Hi Shawn!
    I know, I've been

    Hi Shawn!

    I know, I've been thinking of you and praying for your brother as well.  Glad that your brother is still trying to do things to stay busy.  It hink that helps keep their minds busy too!  Dad has  not gotten any mouth sores that I'm aware of but he did get a mouthwash he has been using with lidocaine, keeping up on wearing flouride trays and everything else docs tell him far as I can tell.  Hope that your brother's mouth is getting better.  If he finds somethng that works to help those sores it will give him a little relief. I'll continue praying for  your brother as well! I defintely hope that they get an easier path through this!

    P.S. You cut out after talking about the 30 rads, what else did your brother also need?  Or did I just read that wrong? Sorry!

    Staying positive and hoping that you are too!

    Cherie

    Oops

    I don't know how that happened -- I meant to say that he also needs 35 rads.  He had his 18th today. Thanks for your prayers.

    ~S~

  • CherieLW
    CherieLW Member Posts: 472
    sin9775 said:

    Oops

    I don't know how that happened -- I meant to say that he also needs 35 rads.  He had his 18th today. Thanks for your prayers.

    ~S~

    That's ok, I thought you were

    That's ok, I thought you were going to say that...just making sure! Continued prayers... He's going to make it through it ok!