10 more to go

Pumakitty
Pumakitty Member Posts: 652
edited March 2014 in Head and Neck Cancer #1
My dad has 10 more rads to go and 3 more chemos. He has been one of the lucky ones and has improved during the treatment. So far he has only lost around 10 pounds and still able to eat, but nothing has a taste.

Can some of you let me know what to expect next as far as a time frame for appointments and scans. He already has an appointment arranged for his ENT on July 7th. Will he have him do a CT then. He how soon after treatment will he know if he has to have the lymph nodes removed and how soon will they do that.

Also, am I correct that he will wait to have a PET for awhile.

Also, one more question. I have heard people mention that they have added more rads. Why do they do that and what determines that.

They doctor told my dad that they tumor is much smaller and he can feel it a little still. Is that good.

Thanks,

Kathy

Comments

  • stevenl
    stevenl Member Posts: 587
    #2
    Scans
    Hi Kathy,

    All docs are different. MY ENT scheduled my first PEt/CT for 7 weeks after my last treatment. As far as your other questions, I don't have the answers for you. My last treatment was April 9th and my pet was May 26th.

    Best,Steve
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi Kathy
    I have heard of some doctors doing more radiation up to 42 treatments, not too sure why as the norm is between 30 to 35 treatments.

    On the PET normal time is between 6 months to a 1 year, but some doctors do it as close as 3 months after the last treatment, I believe that is too early and can give a lot of false positives that way.

    Take care keeping you both in prayer
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Time Frames Vary
    Kathy, there are different thoughts and stadegies...

    My first year (whcih I'm right at), pretty much had every one on a 6 - 8 weeks schedule. My ENT has had me on this schedule pretty much throughout and probably will for one more cycle. He would scope me and physically examine my throat every time.

    My chemo MD also had been using this same time frame for CT's, blood work and port flushes. On my last a month or so ago, my blood work finally came back with everything normal. That pushed my schedule to six months now for her. I have a PET scheduled in August. I still have the port flushes as she like to keep that in for two years (Feb 2011 for removal).

    My radaiation MD has me on a six month schedule as well, similar exams as the ENT (scoped, poked and probed)....

    As for the lymphnodes, more than likely they'll know at the first CT. I had one of concern going in and the thought was to see the effects of chemo and chemo/radiation that I had. In my case the tumor completely dissolved mid treatment with no signs in scans after.

    The standard schedule for a PET varies also anywhere from 6 - 12 weeks at the earliest, but out to 6 - 12 months isn't unusual as there is a chance for false reads due to scarring and residual damage from the chemo and radiation.

    Don't have an answer of the possbility of more rads, unless it would have something to do with the addition of a neck dissesction in the case of the affected lymphnodes remaining.

    Good Luck & God Bless,
    John
  • Pumakitty
    Pumakitty Member Posts: 652
    #5
    Hondo said:

    Hi Kathy
    I have heard of some doctors doing more radiation up to 42 treatments, not too sure why as the norm is between 30 to 35 treatments.

    On the PET normal time is between 6 months to a 1 year, but some doctors do it as close as 3 months after the last treatment, I believe that is too early and can give a lot of false positives that way.

    Take care keeping you both in prayer

    Thank you
    Thank you so much for your input. This makes me feel better for what is ahead. My dad is getting excited for this to end. However, it seems the closer he gets to finishing the more machine problems they are having. He tells them they are just trying to keep him longer. He has not had to miss one yet. He has been stuck bolted to the table for almost an hour twice.

    Again thank you for always making me feel better. My family can never express how much you have helped us down this difficult path.


    Much love to all of you,

    Kathy, Mae and Harvey
  • Scambuster
    Scambuster Member Posts: 973
    #6
    Pumakitty said:

    Thank you
    Thank you so much for your input. This makes me feel better for what is ahead. My dad is getting excited for this to end. However, it seems the closer he gets to finishing the more machine problems they are having. He tells them they are just trying to keep him longer. He has not had to miss one yet. He has been stuck bolted to the table for almost an hour twice.

    Again thank you for always making me feel better. My family can never express how much you have helped us down this difficult path.


    Much love to all of you,

    Kathy, Mae and Harvey

    PET/CT
    HI Kathy,
    Mine first Scan (PET/CT) was nearly 3 months post treatment but I had surgery so the chances of anything showing up straight after treatment were low. Normally, they want to hit you 3 mths out then 6mths out, and then every 6 months for 1 year or so then once a year. I don't believe the scans are good for us at all regardless what my Onco man says, so the fewer the better as long as they are timed wisely to pick up an recurrence early. Personally i have postponed my second scan. First was last December and the next will be maybe July or even later as I feel great and confident I have beaten the beast.

    I am glad and amazed to hear of your Dads improvement. It is common to have a little emotional crash post treatment so just watch for that but sounds like he's in god hands.

    Cheers
    Scam
  • Pumakitty
    Pumakitty Member Posts: 652
    #7
    Scambuster said:

    PET/CT
    HI Kathy,
    Mine first Scan (PET/CT) was nearly 3 months post treatment but I had surgery so the chances of anything showing up straight after treatment were low. Normally, they want to hit you 3 mths out then 6mths out, and then every 6 months for 1 year or so then once a year. I don't believe the scans are good for us at all regardless what my Onco man says, so the fewer the better as long as they are timed wisely to pick up an recurrence early. Personally i have postponed my second scan. First was last December and the next will be maybe July or even later as I feel great and confident I have beaten the beast.

    I am glad and amazed to hear of your Dads improvement. It is common to have a little emotional crash post treatment so just watch for that but sounds like he's in god hands.

    Cheers
    Scam

    Thanks
    I will watch for the crash at the end. I know that he has gotten close to the nurses at both rads and chemo, and I think a few are going to miss him. I was so happy today the nurse told him that he was the best patient they have ever had and the only one that has maintain his weight and occasionally gained during treatment. Today he had chicken and pasta for breakfast and is ready for deviled eggs and potato salad this weekend. It has been over 6 month since he was eating like that.

    He has become the dad he was a couple of years ago. I can tell that the cancer has effected his whole system.

    He always has been my hero, but even more since I have seen him fight this battle.
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
    kathy, I'm glad to hear your
    kathy, I'm glad to hear your dad is doing so well and that he only has a few trmnts left. You need to note that even tho trmnts stop, he still has a way to go. For me and many others here the "recovery" road was also very difficult. It sounds like your dad is fairing better than most tho so we will pray he continues to do better than most. Please keep us posted on his progress.
    God Bless you friend,
    debbie
  • Pumakitty
    Pumakitty Member Posts: 652
    #9
    debbiejeanne said:

    kathy, I'm glad to hear your
    kathy, I'm glad to hear your dad is doing so well and that he only has a few trmnts left. You need to note that even tho trmnts stop, he still has a way to go. For me and many others here the "recovery" road was also very difficult. It sounds like your dad is fairing better than most tho so we will pray he continues to do better than most. Please keep us posted on his progress.
    God Bless you friend,
    debbie

    Debbie
    Thank you for your prayers. He has 5 more rads and 1 more chemo. The last chemo was a little harder on him then the others have been. I know that he is ready to be done. He is still eating and staying positive.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #10
    Pumakitty said:

    Debbie
    Thank you for your prayers. He has 5 more rads and 1 more chemo. The last chemo was a little harder on him then the others have been. I know that he is ready to be done. He is still eating and staying positive.

    Champ
    Yes, like Debbie noted, it sounds like your Dad's getting thru this like a prizefighter- a Champ. Reckon he's probably looking forward to getting that last chemo behind him- bigtime. And that Positive- most definitely a key ingredient for getting thru treatment as good as one can. Keep asking him about any problems, though- one of us might be able to offer some good advice, as even Champs take a few punches in the ring, and feel the effects of the fight after the last bell.

    kcass
  • Pumakitty
    Pumakitty Member Posts: 652
    #11
    Kent Cass said:

    Champ
    Yes, like Debbie noted, it sounds like your Dad's getting thru this like a prizefighter- a Champ. Reckon he's probably looking forward to getting that last chemo behind him- bigtime. And that Positive- most definitely a key ingredient for getting thru treatment as good as one can. Keep asking him about any problems, though- one of us might be able to offer some good advice, as even Champs take a few punches in the ring, and feel the effects of the fight after the last bell.

    kcass

    Kent
    Thanks for everything. He is starting to feel the effects of all of it now. He has one really painful place in his mouth and doesn't really want to eat, but did have 2 eggs and sausage for breakfast. I think once he is done he will feel better mentally. I think he is ready to have a week of not going to the doctor and just relax. His attitude has been better then it has been for the last 2 years. I think on of the best things that has happened is discovering that he was on blood pressure medicine that he did not need.

    Were any of you told how long the cancer my have existed before it was found? I am curious.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #12
    Pumakitty said:

    Kent
    Thanks for everything. He is starting to feel the effects of all of it now. He has one really painful place in his mouth and doesn't really want to eat, but did have 2 eggs and sausage for breakfast. I think once he is done he will feel better mentally. I think he is ready to have a week of not going to the doctor and just relax. His attitude has been better then it has been for the last 2 years. I think on of the best things that has happened is discovering that he was on blood pressure medicine that he did not need.

    Were any of you told how long the cancer my have existed before it was found? I am curious.

    Not told
    how long it might have existed, Kathy. Two good-sized tumors had formed on the left-side of my neck, which I only noticed about a month before I revealed to my regular Dr. And, I was Unknown Primary. If I had to guess, I would say about a year before I actually started treatment- which is about the time I started losing weight. Just a guess, though.

    kcass

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