Getting tough

luvofmylif
luvofmylif Member Posts: 344
in Head and Neck Cancer #1
Think today must have been a turning point for my husband. He just completed his 13th radiation and today is worst day so far. Been doing ok but now today has alot of throat pain and just doesnt feel well. I am thinking from here on out it's gonna be a bumpy flight plus he has chemo on Thursday( his second Cisplatin). He is scheduled to have a total of 3 rounds of chemo but when I got home from work he told me he is not going to do the 3rd chemo. I understand where he is coming from but am worried that he really means it and will go against the dr's advice. Hate to see him suffer but also want the cancer beat.

Anyways, I will try to make sure he won't get dehydrated but the thought of chemo on top of his deteriorating condition scares me. I hate watching someone you love suffer.

Joan

Comments

  • ditto1
    ditto1 Member Posts: 660
    #2
    Hey Joan
    he may just be having a bad day/reactions or the radiations and chemos are taking a toll. I think its about the half way point that I and many others started to notice the changes not necessarily for the good. As for the 3rd Chemo, I was originally scheduled for 3 Cisplatins but the Onc Doc decided two was enough, but I also had 9 Erbitux as well. So talk to your husband and the Doctors to see about the 3rd Chemo. There were many times I told Diane, No I will not do this or that, and after time to think or heal, I did pretty much everything I was asked to. So hopefully he will reconsider if the Docs have him do 3 treatments. Good Luck
  • luvofmylif
    luvofmylif Member Posts: 344
    #3
    ditto1 said:

    Hey Joan
    he may just be having a bad day/reactions or the radiations and chemos are taking a toll. I think its about the half way point that I and many others started to notice the changes not necessarily for the good. As for the 3rd Chemo, I was originally scheduled for 3 Cisplatins but the Onc Doc decided two was enough, but I also had 9 Erbitux as well. So talk to your husband and the Doctors to see about the 3rd Chemo. There were many times I told Diane, No I will not do this or that, and after time to think or heal, I did pretty much everything I was asked to. So hopefully he will reconsider if the Docs have him do 3 treatments. Good Luck

    Wow, u also had 9 Erbitux. I
    Wow, u also had 9 Erbitux. I can only imagine how tough all that was. But, I thank you for your advice and experience. Fear of the unknown and what's to come is very scary.
  • hwt
    hwt Member Posts: 2,328 Member
    #4
    ditto1 said:

    Hey Joan
    he may just be having a bad day/reactions or the radiations and chemos are taking a toll. I think its about the half way point that I and many others started to notice the changes not necessarily for the good. As for the 3rd Chemo, I was originally scheduled for 3 Cisplatins but the Onc Doc decided two was enough, but I also had 9 Erbitux as well. So talk to your husband and the Doctors to see about the 3rd Chemo. There were many times I told Diane, No I will not do this or that, and after time to think or heal, I did pretty much everything I was asked to. So hopefully he will reconsider if the Docs have him do 3 treatments. Good Luck

    Joan
    Sorry to hear that the side effects are hitting. I had to smile to myself when your husband said he wasn't going to do the 3rd Cisplatin because it sounded oh so familiar. There was a point with my tx that I said enough was enough, you know, hindsight I think it just made me feel better to say it. Kind of like I wanted some control back. I know you are are BJW, is the ONC Dr. Wildes? I had such a tough time with my 1st Cisplatin that she switched me to 1/2 dose weekly and that was a huge improvement. My counts got low and she said I got a pass on the last 1/2 dose as she said they had given me all they could safely give me. I came out NED. If push comes to shove, I hope your husband would consider asking about the 1/2 dose. Unfortunately, when I said I was quitting, I wasn't considering my caregiver's feelings. It just felt good for the moment to say I wasn't going to do it and have control of an uncontrollable situation. Read the poem "Footprints in the Sand". It was during that period of my tx that there was only one set of footprints going into that radiation room and they weren't mine!
    Candi
  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #5
    hwt said:

    Joan
    Sorry to hear that the side effects are hitting. I had to smile to myself when your husband said he wasn't going to do the 3rd Cisplatin because it sounded oh so familiar. There was a point with my tx that I said enough was enough, you know, hindsight I think it just made me feel better to say it. Kind of like I wanted some control back. I know you are are BJW, is the ONC Dr. Wildes? I had such a tough time with my 1st Cisplatin that she switched me to 1/2 dose weekly and that was a huge improvement. My counts got low and she said I got a pass on the last 1/2 dose as she said they had given me all they could safely give me. I came out NED. If push comes to shove, I hope your husband would consider asking about the 1/2 dose. Unfortunately, when I said I was quitting, I wasn't considering my caregiver's feelings. It just felt good for the moment to say I wasn't going to do it and have control of an uncontrollable situation. Read the poem "Footprints in the Sand". It was during that period of my tx that there was only one set of footprints going into that radiation room and they weren't mine!
    Candi

    It must be frustrating
    It must have been frustrating hearing the one you love say he wasn't going to do the third Cisplatin round. David is scheduled to do the 33 rad/3 Cisplatin as well when they think he has recovered enough. The oncologist had a talk with us and explained it this way. The first couple of weeks you think this isn't that bad, week 4 you want to kill others, week 5 you just want the pain to end, week 6 you want to quit. She told David you can't quit, your life is too important. It was a scary talk, but I think it helped him know that what he will be feeling later is normal and knowing what to expect is comforting.
  • luvofmylif
    luvofmylif Member Posts: 344
    #6
    hwt said:

    Joan
    Sorry to hear that the side effects are hitting. I had to smile to myself when your husband said he wasn't going to do the 3rd Cisplatin because it sounded oh so familiar. There was a point with my tx that I said enough was enough, you know, hindsight I think it just made me feel better to say it. Kind of like I wanted some control back. I know you are are BJW, is the ONC Dr. Wildes? I had such a tough time with my 1st Cisplatin that she switched me to 1/2 dose weekly and that was a huge improvement. My counts got low and she said I got a pass on the last 1/2 dose as she said they had given me all they could safely give me. I came out NED. If push comes to shove, I hope your husband would consider asking about the 1/2 dose. Unfortunately, when I said I was quitting, I wasn't considering my caregiver's feelings. It just felt good for the moment to say I wasn't going to do it and have control of an uncontrollable situation. Read the poem "Footprints in the Sand". It was during that period of my tx that there was only one set of footprints going into that radiation room and they weren't mine!
    Candi

    I will pass on what you said
    I will pass on what you said about the foorprints. We love that poem and sometimes, especially now all you have is the Lord. What you said is so inspiring. It helps to give me courage. And, I agree totally with you about the control issue. I think that is exactly why he said that... so that he can have some control over his life and his body because cancer certainly takes that away sometimes. It turns your life upside down.

    And Vivian I will pray for you and David. Everyone tells me one day at a time and that is probably the best advice. Oh, and what Phrannie always says too, don't fight battles before you have to.

    Joan
  • VanessaSLO
    VanessaSLO Member Posts: 283
    #7
    luvofmylif said:

    I will pass on what you said
    I will pass on what you said about the foorprints. We love that poem and sometimes, especially now all you have is the Lord. What you said is so inspiring. It helps to give me courage. And, I agree totally with you about the control issue. I think that is exactly why he said that... so that he can have some control over his life and his body because cancer certainly takes that away sometimes. It turns your life upside down.

    And Vivian I will pray for you and David. Everyone tells me one day at a time and that is probably the best advice. Oh, and what Phrannie always says too, don't fight battles before you have to.

    Joan

    He can do it!!
    Believe me, he can! So many wonderful people here made it and definetely he will too! When my father was about two weeks into rads he started to feel his first strong side effects too. But it was pretty much doable until the last week. Then it was harder because he could not eat anymore by his mouth and pain got worse. And after tx was over all the side effets were at their peek. But he made it and he just did everything that doctors told him to do. Time went by very fast and he is on his road to recovery now (one and a half month out of treatment). And the best advice is... one day at a time, yes. He will be just fine in the end! And that is the most important.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #8
    Yes...he is getting to the half way point...
    and that's where many of us started feeling the pain of the side effects...burnt necks, sore throats, no taste, and OH SO TIRED...I'm truly hoping that he was just saying how he feels about the 3rd chemo treatment, with room to change his mind. I did the same thing when I was looking my 5th Cisplatin/5FU in the face...said I do this one, but will probably skip the 6th...I entertained that for nearly 4 weeks between the two treatments, then had to face the fact...if the Dr. says this is what I should do, then so be it, I'll do it...not happily, I might add (I knew I would suffer mouth sores for 3 weeks after)...but at least I'm not suffering any "if only's" now...and the "if only's" won't be able to creep in when I get my first PET scan...

    This is where the one day at a time pays off...I literally spent time every morning before rads asking God to handle this day for me....that I was not up to it.

    p
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #9
    it might get tougher
    Hi Joan,

    Well, it is here, the start of the bad. You had 152 H&N veterans hoping and praying for a gentle journey for him and it wasn’t to be. Get control of the sore throat and pain to where he is comfortable. He doesn’t feel well, is it nausea, if it is, take the meds and get in front of it. Chemo is coming and you just have to try and be prepared. Is he drinking fluids (water), hydration is so important and besides hydration will keep flushing all the toxins out of your system. Candi is dead on, he is asserting control of the situation and nobody can blame him, were all on his side. The doctors want to help rid you of this demon, the only problems is their methods are tough as heck on your body (think what it is doing to the cancer).

    Does he have music during radiation? It helps. Is he 100% set up a home? If not fix it up. Try and make his life (right now) as easy as possible. If he drives himself to treatments ask someone else to take a spin at the wheel. Get him the gentle Kleenex, they feel nice. Do anything to help each of you.

    Best,

    Matt
  • Greend
    Greend Member Posts: 678
    #10
    Joan
    I remember telling my kids that I simply had had enough and I WOULD NOT take the last DDP. This would have been 4 rounds. Thank God I didn't need it and lymph glands were clear so no surgery. I agree that it is just a way to try and have some control over a life that seems to be crashing into a tail-spin. I remember the agony but no it doesn't seem so bad.

    Good luck. keep him drinking and fed if you can.

    Denny
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #11
    I TOO CAN RELATE
    I can relate, sounds like I went through the same exact treatment plan. I somehow made it through the 35 rads and 3 cisplatins. I can remember wanting to just die more than once time.

    I am batting the beast for a second time and am on a 24 week every Monday 3 drug regimen, and if it were not for some positive news from my first scan just 6 weeks into this, I could see my attitude once again changing.

    Push him with loving care, and help him see where he just needs to complete the traetment. Believe me, it will get better, you just have to go through the baddest of bad before you get to the best of the best.

    Hope this helps.

    Best

    Mike
  • Laralyn
    Laralyn Member Posts: 532
    #12
    I know how it feels!
    We've all been there. The best advice I can give is the honest truth: he just has to wait it out. It sucks, and it's probably going to get worse... but unlike cancer, it won't kill him. He just has to endure it, and eventually he'll be past it and gradually life will return to something more normal.

    When you're in the middle of it, it feels like it will never end. I remember my spouse telling me I would get better, and responding that it didn't feel like I ever would... but I did, and so will your husband.

    I'll be thinking of both of you!
  • Pam M
    Pam M Member Posts: 2,196
    #13
    One Day at a Time
    I focused on a calendar I had up. "Today is day 13. I am just over 1/3 of the way done. In just 5 days, I'll be half way done." Every day, more than once a day, I'd tell myself how far I'd come, and how much closer I was getting to the last radiation day.

    And as for the chemo - for me, the first chemo was the hardest.
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #14
    Hang in there
    I had 36 rads and 3 rounds of cisplatin chemo. The second round of chemo almost killed me--I was in the hospital for 4 very dicey days that easily marked the worst period of my treatments and the most worry for my wife. I tell you and your husband that not to scare you, but to let you know that you can get through this stretch, and if it turns out to be the worst, then every day after this will get just a little better for both of you.

    It is tempting to think that 2 chemo treatments will be enough, but there's enough science behind the recommended three treatments to make that a good thing to do.

    Hang in there, both of you.

    "Sometimes the only way out is through"

    Mike
  • cureitall66
    cureitall66 Member Posts: 913
    #15
    With you...
    We're with you on the same journey...just a week ahead of you. It's been a rough week for us too. Sounds like your loved one is similar to mine with tolerating the pain. I'm sure it feels unbearable....but remind him that his life is worth all of this. Cancer is not going to win this battle. He will. I have to place reminders each day why we are going through this. One day at a time...don't look so far ahead.
  • luvofmylif
    luvofmylif Member Posts: 344
    #16
    cureitall66 said:

    With you...
    We're with you on the same journey...just a week ahead of you. It's been a rough week for us too. Sounds like your loved one is similar to mine with tolerating the pain. I'm sure it feels unbearable....but remind him that his life is worth all of this. Cancer is not going to win this battle. He will. I have to place reminders each day why we are going through this. One day at a time...don't look so far ahead.

    Thanks everyone for support
    Thanks everyone for support and wisdom. He almost didn't get his second Cisplatin today because they drew his blood and white count was low. But, the dr decided to give him Neulasta tomorrow and proceed with chemo. He said to watch for fever since now he is at risk of infection. More to worry about. But, the good news is exactly half way through rads today...#15 of 30. Even though he is using Magic mouthwash he has some areas of thrush in mouth and throat that is causing pain and doc said probably because of decreased WBC so they also ordered 10 day course of diflucan.

    All in all can't complain...could be worse. He does look a little "green around the gills" but we shall prevail...all of us on this site shall prevail.

    I hope everyone on this site has a blessed day...you all deserve it. No kinder group of people around.

    Joan
  • phrannie51
    phrannie51 Member Posts: 4,716
    #17
    luvofmylif said:

    Thanks everyone for support
    Thanks everyone for support and wisdom. He almost didn't get his second Cisplatin today because they drew his blood and white count was low. But, the dr decided to give him Neulasta tomorrow and proceed with chemo. He said to watch for fever since now he is at risk of infection. More to worry about. But, the good news is exactly half way through rads today...#15 of 30. Even though he is using Magic mouthwash he has some areas of thrush in mouth and throat that is causing pain and doc said probably because of decreased WBC so they also ordered 10 day course of diflucan.

    All in all can't complain...could be worse. He does look a little "green around the gills" but we shall prevail...all of us on this site shall prevail.

    I hope everyone on this site has a blessed day...you all deserve it. No kinder group of people around.

    Joan

    YEAAAH for hitting the half way mark...
    that meant a lot to me when I was going thru radiaiton...It wasn't as good as the "count down", but damn near as good. :)

    Just keep him out of the grocery store and other crowded places, and let all his visitors know that they aren't welcome if they feel even tiny bit "off"...I spent the last three months of treatment getting Nupegyn shots (does the same as Nulasta)...and never caught anything.

    Yes you will prevail...AND he's half way thru!!! Hoo rah!!

    p

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