14 Rads and 1 Chemo down

kristin31
kristin31 Member Posts: 10
edited March 2014 in Head and Neck Cancer #1
Hi to all. My dad is receiving treatment for stage IVA larynx cancer. He is having 35 rads and 3 rounds chemo (cisplatin). He has had 14 rads and 1 chemo treatment so far. Today he had an appointment with his radiation oncologist. My dad asked him how things looked so far and the doctor told him not too good. No one else was in the room with my dad when he asked so I am not sure if he meant the treatment wasn't working or if he was just referring to his overall health. His throat is starting to get really sore and he has had trouble eating and is losing weight. My question is, isn't it still too early to tell if the treatment is working or not? My dad has been upset all afternoon after hearing his doctor say this. I am just wanting to hear from others what their doctors told them while going through treatment and if it would be normal for them to be able to tell so soon. Thanks so much!

Kristin

Comments

  • Hal61
    Hal61 Member Posts: 655
    #2
    Doctor's opinion
    Hi Kristin, sorry to hear your dad has to go through this, but glad he is probably approaching half way point of his treatment. It would be good to clarify what the Doctor meant with the doctor. No use speculating, so best to just ask him, with your dad not present if you need to. As for trouble eating and losing weight, they indicate nothing more than your dad is having the normal symptoms of treatment. Unfortunately, weight loss, and inability to eat are the most common reactions to rads and chemo. Shy of half way through treatment seems a bit early for the doc to be commenting on negative results. Tell your dad that, and clear it up with his doc. Best to both of you, and your family.

    Hal
  • stevenl
    stevenl Member Posts: 587
    #3
    Hal61 said:

    Doctor's opinion
    Hi Kristin, sorry to hear your dad has to go through this, but glad he is probably approaching half way point of his treatment. It would be good to clarify what the Doctor meant with the doctor. No use speculating, so best to just ask him, with your dad not present if you need to. As for trouble eating and losing weight, they indicate nothing more than your dad is having the normal symptoms of treatment. Unfortunately, weight loss, and inability to eat are the most common reactions to rads and chemo. Shy of half way through treatment seems a bit early for the doc to be commenting on negative results. Tell your dad that, and clear it up with his doc. Best to both of you, and your family.

    Hal

    Comment
    Hi Kristin,

    I agree with Hal that you should ask the doc just what he meant by this and help said doc with his bedside manner. In other words tell him or her how much it upset your father.

    Best,
    Steve
  • kristin31
    kristin31 Member Posts: 10
    #4
    stevenl said:

    Comment
    Hi Kristin,

    I agree with Hal that you should ask the doc just what he meant by this and help said doc with his bedside manner. In other words tell him or her how much it upset your father.

    Best,
    Steve

    Thanks
    Thanks to both of you for replying. I just don't understand why a doctor would say that when so many patients want to give up as it is. I feel they should be encouraging, not gloom and doom...but thanks again for the advice and I will definitely find out just what the doctor meant by what he said.
  • johnlax38
    johnlax38 Member Posts: 136
    #5
    kristin31 said:

    Thanks
    Thanks to both of you for replying. I just don't understand why a doctor would say that when so many patients want to give up as it is. I feel they should be encouraging, not gloom and doom...but thanks again for the advice and I will definitely find out just what the doctor meant by what he said.

    Yeah kris,
    I would push the
    Yeah kris,

    I would push the doc for a better explanation. I know my doc said it looked bad several times and freaked out on him asking what he meant. He meant my throat and mouth were pretty burned up but I was reacting well. I hope this is the case for your father.

    Best wishes.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #6
    johnlax38 said:

    Yeah kris,
    I would push the
    Yeah kris,

    I would push the doc for a better explanation. I know my doc said it looked bad several times and freaked out on him asking what he meant. He meant my throat and mouth were pretty burned up but I was reacting well. I hope this is the case for your father.

    Best wishes.

    Early
    May be too early in his treatment to take such an opinion with anything more than a grain of salt, Kristin. Might be possible the Dr. doesn't really know what the score is with the H&N thing we have/had, as his H&N experience might be limited. I agree than your Dad should find-out why the Dr. has this opinion. 2010, Kristin, and we survive this C thing, now, even better than 10-years ago. If the Dr. was only describing the treatment symptoms- hey, that's H&N, Doc. If he's getting Chemo- could be the Onco (not Rad Dr.) is the one to ask about how he's doing.

    As for your Dad's weight loss- there might still be the option of a PEG/feeding tube. Had mine for 15+-months, and didn't even use it for the last year I carred it, and during my treatment it was a blessing. He might inquire about it.

    Keep us updated, please

    kcass
  • Fire34
    Fire34 Member Posts: 365
    #7
    Treatment ?
    Kristin
    My treatment was just a little different than some here. My doctors made no statements as far as the way things looked. The rad techs did mention, during my third week of concurrent rad/chemo. They were starting the boost phase and mentioned that the tumors were shrinking. But nothing from the docs, dont know whether that was good or bad.
    I am not too familiar with once a day rads as mine were twice daily. It does seem a little early as everyone else has mentioned, your dad is not even half way thru.
    How often does your dad see the doc? Maybe e-mail or even phone the Head nurse in that department, if the next visit is that far off. Maybe you can get some answers before the next visit, and give you a little peace of mind
    Best Wishes & Prayers
    Dave
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #8
    Fire34 said:

    Treatment ?
    Kristin
    My treatment was just a little different than some here. My doctors made no statements as far as the way things looked. The rad techs did mention, during my third week of concurrent rad/chemo. They were starting the boost phase and mentioned that the tumors were shrinking. But nothing from the docs, dont know whether that was good or bad.
    I am not too familiar with once a day rads as mine were twice daily. It does seem a little early as everyone else has mentioned, your dad is not even half way thru.
    How often does your dad see the doc? Maybe e-mail or even phone the Head nurse in that department, if the next visit is that far off. Maybe you can get some answers before the next visit, and give you a little peace of mind
    Best Wishes & Prayers
    Dave

    Same Treatment Here
    Hi Kristin,

    I received the same treatment as your dad, the 35 rads and 3 cistplatin, though mine was for base of tongue cancer stage IV, completed treatment on July 31. I had weekly appointments with my rad MD, but it wasn't until after 4 weeks of treatment that they performed a CAT scan to check on how things were progressing. It was explained to me that only after the 4 weeks of treatment could they get a good idea of how things were progressing, 2-3 weeks of treatment was just not enough time to see any conclusive results.

    The sore throat and trouble eating are pretty normal. Fortunately, I didn't have too much trouble during my treatment, but many fine folks on this forum did go through a rather difficult time of it. I would certainly ask the MD to clarify his statement. Cheers

    Jimbo
  • kristin31
    kristin31 Member Posts: 10
    #9
    Jimbo55 said:

    Same Treatment Here
    Hi Kristin,

    I received the same treatment as your dad, the 35 rads and 3 cistplatin, though mine was for base of tongue cancer stage IV, completed treatment on July 31. I had weekly appointments with my rad MD, but it wasn't until after 4 weeks of treatment that they performed a CAT scan to check on how things were progressing. It was explained to me that only after the 4 weeks of treatment could they get a good idea of how things were progressing, 2-3 weeks of treatment was just not enough time to see any conclusive results.

    The sore throat and trouble eating are pretty normal. Fortunately, I didn't have too much trouble during my treatment, but many fine folks on this forum did go through a rather difficult time of it. I would certainly ask the MD to clarify his statement. Cheers

    Jimbo

    Thank you all for the
    Thank you all for the wonderful feedback. I am going to send the doctor a quick e-mail just to see if he will clarify what he meant by saying what he did. My dad does have a peg tube which he is using for most of his caloric intake, but can still swallow pretty well. He just doesn't have an appetite for anything and they had to remove all 25 of his teeth before treatments so he doesn't have much of a selection to choose from. You are all so awesome for sharing your thoughts and experiences with me. I just want my dad to stay positive and keep it in his mindset that he can beat this! I know he can because I have all of your testimonies to share with him! Thanks!

    Kristin
  • JUDYV5
    JUDYV5 Member Posts: 392
    #10
    To early
    I had 35 radiation and 3 chemo also. When I asked how things were going during treatment. I was told they wouldn't know until it was over. I was told that radiation takes two weeks to actually be effective. It doesn't make sense to say it is not working after only 14 treatments. The problems that your Dad are experiencing are par for the course.
  • kristin31
    kristin31 Member Posts: 10
    #11
    JUDYV5 said:

    To early
    I had 35 radiation and 3 chemo also. When I asked how things were going during treatment. I was told they wouldn't know until it was over. I was told that radiation takes two weeks to actually be effective. It doesn't make sense to say it is not working after only 14 treatments. The problems that your Dad are experiencing are par for the course.

    Sent Dr. E-mail
    So, I sent the doctor an e-mail and received a reply within 5 minutes. I basically asked him what he meant and everything and this was his reply:

    "I would like his tumor to be receding faster and it is about 20-25% better. It is too early to know…"


    Just thought you would be interested to hear what the doctor said. Thanks again for all of the advice. Right now we are just going to focus on keeping my dad's spirits up and to just wait until all of his treatments are finished to find out what the results are.

    On a side note, my dad's mucous is getting really thick in his throat which is making it a little harder to breathe and causing him to throw up and I was wondering if any of you experienced this problem and if you knew of anything that might help? Thanks again!
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #12
    the norm
    Kristin

    First of all I suggest that at least one person be with your dad at all doctor visits. It was suggested to me years ago to take two as the number one caregiver was my wife and if something bad was said at least someone else heard it and wrote it down in notes. Hearing bad news makes you think and tend to not hear what else the doctor says.

    14 days into the scheduled treatment plan is way to early to tell by visual eye. I believe the doc was referring to seeing the sores/side effects from the chemo and radiation combines. After going thru and watching/listening to many others as they do treatments is that about the end of third week does the big pain begin. Many more sores develope, swelling becomes more noticable, tightness in neck, much harder to swollow and fatiue hits hard. All this is normal. Some get it worse than others and few have it better. This is the problem everyone's side effects are different so doctors can not predict how bad it will be.

    Call his doctor with him and ask him to give you and your father a clearer understanding of his findings.

    Keep doing anything he eat or drink. Do this more often with less amounts as they get tired of eating and pain increases. Do the ensure type supplament at least three times a day as it has all the nutriants he needs to have. Even if he gets sick keep pushing as if it stays down for 30 min the nutriants stay in after that short time. Keep the swollowing going.

    Keep that smile with him it will help with his positive attitude.

    John
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #13
    kristin31 said:

    Sent Dr. E-mail
    So, I sent the doctor an e-mail and received a reply within 5 minutes. I basically asked him what he meant and everything and this was his reply:

    "I would like his tumor to be receding faster and it is about 20-25% better. It is too early to know…"


    Just thought you would be interested to hear what the doctor said. Thanks again for all of the advice. Right now we are just going to focus on keeping my dad's spirits up and to just wait until all of his treatments are finished to find out what the results are.

    On a side note, my dad's mucous is getting really thick in his throat which is making it a little harder to breathe and causing him to throw up and I was wondering if any of you experienced this problem and if you knew of anything that might help? Thanks again!

    suction equipment
    after looking for days for a piece of equipment years ago my sisters found a portable suction machine. This was the best of the best. It is like a dentist suction and you can put it in mouth and pulls the mucous out rather than forcing it out causing a gaging reflex. Now they have them everywhere. they are small the size of a large shoe box.

    In my opinion this should be an automatic tool a patient with this type of treatment should be given.

    I believe you can buy them on line also. They are mostly used for people that have trach's but have the wand to use in the mouth and throat.

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