THIRD Recurrence in 3 years

kimmygarland
kimmygarland Member Posts: 312
in Head and Neck Cancer #1
I have been reading this board since early 2009 and know how helpful and kind you are all.

My husband was diagnosed with hypopharyngeal cancer in 2009 and went thru standard chemo/rads. Sept 2010 popped up again, same place, and he had radical flap surgery w/neck dissection. All was well until today when he went in for his regular scans and checkup and ugh, it's back. Appears to be in same place. I did not go with him to his appointment, but the tumor board will meet tomorrow to decide course of treatment. Could be another surgery, could be chemo/rads or all three. Doc said he is "eligible" for re-irradiation since it has been over 2 years since he had radiation.

I am concerned about the re-irradiation. My husband will do whatever is suggested by the docs. We feel we are in good hands - we are at a teaching hospital that is highly ranked for HNC... but I am growing weary.

Anyone have any experience with a second round of radiation?

On another note, my husband is very positive, and I am very scared - the first time we went thru chemo/rads we were naieve and didn't know what was coming. This time we do and the thought of doing all that again is crushing on me right now.

Thanks for listening, and any advice anyone can provide.

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Sorry for the News...
    There are a few that have went through rads more than once, I'm sure they'll chime in... I know pat (longtermsurvivor) and Hondo both have, actually Pat is currently.

    Sorry for your situation, it has got to be discouraging..., but stay positive.

    Actually having the knowledge you have already might work to your advantage...you've been there done that and survived...you will again.

    Thoughts & Prayers,
    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    Skiffin16 said:

    Sorry for the News...
    There are a few that have went through rads more than once, I'm sure they'll chime in... I know pat (longtermsurvivor) and Hondo both have, actually Pat is currently.

    Sorry for your situation, it has got to be discouraging..., but stay positive.

    Actually having the knowledge you have already might work to your advantage...you've been there done that and survived...you will again.

    Thoughts & Prayers,
    John

    That's me
    Hi Kimmy,

    KTeacher has also been through rads twice, I think.

    I had my first rads (35 sessions) in 1998, and did very well. I got a second cancer in 2010, and had radical resection and graft surgery, maybe similar to what you are describing. I had a recurrance close to the same spot within the year.

    So I've been through induction chemo with carboplatin/taxotere and am on erbitux as well. I'm 27 sessions through a planned 34 fro reirradiation of my throat. Doing pretty well. No catstrophies to report. Pretty sore right now, but didn't need a PEG tube as I'm still able to get the liquid calories in. In all, I have a reasonable chance of cure this time stil, and I'm finding the treatments to be tolerable. Looking forward to finishing this, as this has been a pretty long ordeal. we've had to move, temporarily, to the big city to get these treatments,as IMRT was not available where I live.

    I'm here every day, so post to me or PM me if I can help you in any way.


    Best to you and your husband.

    Pat
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #4
    Yep
    Twice for me. I think that I didn't learn all that I was supposed to the first time! I couldn't take the amifostone (to help keep saliva) the second time around. Body said it had enough the first time and I violently reacted to the first shot. All in all it was a bit easier the second time, not fun but easier. I had my nystatin for thrush and my pain meds ready. Brewed up the Magic Mineral Broth and made sure that I added protein powder to my smoothies. I was able to eat (if you call it that) throughout both treatments. Weight loss the second time wasn't so much muscle. Not fun but it can be done. Call in the reserves, get help, even for things that you might not ask for before. As a caregiver you need to take care of yourself also. We can't make it if you are not there to support us. Refuel, walk, movie, spa, good music. . . Stay in the loop, we are here to help.
  • Pam M
    Pam M Member Posts: 2,196
    #5
    Crud
    Sorry you're facing another round. The only consolation I can think of is that if you have to do it all again, now you KNOW that you can make it through - he's done it before. And yeah, I know that's little consolation. Do well.
  • tesa
    tesa Member Posts: 123
    #6
    Pam M said:

    Crud
    Sorry you're facing another round. The only consolation I can think of is that if you have to do it all again, now you KNOW that you can make it through - he's done it before. And yeah, I know that's little consolation. Do well.

    My mother has had
    My mother has had re-irradiation for paranasal cancer. She's elderly so it has been rough for her. Your husband, being much younger will do fine. Keep the protein liquids , have him move around ( the fatigue is great). He can do it.
  • kimmygarland
    kimmygarland Member Posts: 312
    #7
    tesa said:

    My mother has had
    My mother has had re-irradiation for paranasal cancer. She's elderly so it has been rough for her. Your husband, being much younger will do fine. Keep the protein liquids , have him move around ( the fatigue is great). He can do it.

    Thank you!
    Thank you for the responses. Yes, we learned alot the first round and this time we will start pain meds earlier, stay better hydrated and not sweat the small stuff. He has a peg tube already since the surgery in 9/2010 pretty much stopped swallowing - so hydration, meds and nutrition should be easier to get in him this time.

    I think mainly I am struggling with it mentally - with the mental and emotional exhaustion that will come with it all. I feel I am being selfish, but we have all been through so much. Luckily our son (26 - that's him in my pic graduating from college a couple of years ago) only lives 1.5 hours away and will be of great help. I will ask for help more this time, I learned that from before. It's weird, I am not worried about him dying, I am worried about the damage that this treatment does. He is still stuffering from radiation (the gift that keeps on giving) - mucus, dry mouth, etc. - you all know the drill.

    I am truly thankful there is a way to get rid of this, and that is what we must remember.

    He is very positive and says, Kim, this is just what we have to do. We have done it before and we will do it again.... Bless him, he is so much more positive than I and that is truly amazing.

    Thank you for your words of comfort and wisdom. I will check in as we progress through this. He has a pet scan Monday to ensure no spread. He's already had a CT of lungs which was good so I think they are mainly looking at lymph nodes.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    Hi Kimmy

    I am so sorry to hear this as I know how its feels to be told it is back again for a third time. Just don’t give up I fought it three times and finally been clean for the last 6 years. I have a lot of problems with side effects from all the treatments but I am still here and still alive.

    My prayers are for you both
    Hondo
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #9
    Hondo said:

    Hi Kimmy

    I am so sorry to hear this as I know how its feels to be told it is back again for a third time. Just don’t give up I fought it three times and finally been clean for the last 6 years. I have a lot of problems with side effects from all the treatments but I am still here and still alive.

    My prayers are for you both
    Hondo

    Caregiver
    How awful it is to go through it all again. You being the caregiver it must have been such a strain on your coping ability. My wife and I going through this now and I see the worry and concern on her face.

    It sounds like you both have good attitudes and already know the drill about the pain meds. Now all you need is a boost to your coping mechanism.

    Wishing you both the best,

    Tommy
  • stevenl
    stevenl Member Posts: 587
    #10
    tommyodavey said:

    Caregiver
    How awful it is to go through it all again. You being the caregiver it must have been such a strain on your coping ability. My wife and I going through this now and I see the worry and concern on her face.

    It sounds like you both have good attitudes and already know the drill about the pain meds. Now all you need is a boost to your coping mechanism.

    Wishing you both the best,

    Tommy

    Kick
    Hope this time you guys kick it in the behind, the Texas way. Sorry to hear the news
    and I know he will come through O.K.

    All the best,
    Steve
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #11
    Kimmy, I don't have any
    Kimmy, I don't have any advice. Just wanted you to know that you guys are in my thoughts.
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #12
    kimmygarland said:

    Thank you!
    Thank you for the responses. Yes, we learned alot the first round and this time we will start pain meds earlier, stay better hydrated and not sweat the small stuff. He has a peg tube already since the surgery in 9/2010 pretty much stopped swallowing - so hydration, meds and nutrition should be easier to get in him this time.

    I think mainly I am struggling with it mentally - with the mental and emotional exhaustion that will come with it all. I feel I am being selfish, but we have all been through so much. Luckily our son (26 - that's him in my pic graduating from college a couple of years ago) only lives 1.5 hours away and will be of great help. I will ask for help more this time, I learned that from before. It's weird, I am not worried about him dying, I am worried about the damage that this treatment does. He is still stuffering from radiation (the gift that keeps on giving) - mucus, dry mouth, etc. - you all know the drill.

    I am truly thankful there is a way to get rid of this, and that is what we must remember.

    He is very positive and says, Kim, this is just what we have to do. We have done it before and we will do it again.... Bless him, he is so much more positive than I and that is truly amazing.

    Thank you for your words of comfort and wisdom. I will check in as we progress through this. He has a pet scan Monday to ensure no spread. He's already had a CT of lungs which was good so I think they are mainly looking at lymph nodes.

    Sorry to hear
    I'm glad your absence from the boards meant things were going well, kimmy, but I hate to see you back on here for this reason.

    Keep us posted.

    Hugs.
  • NeoTheron91
    NeoTheron91 Member Posts: 75
    #13
    Good luck
    Hi Kimmy,

    Just want to say my thoughts will be with your family, pray for you and good luck in the future.

    cheers,
    Neo

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