Question of tretment

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michdjp
michdjp Member Posts: 220
in Head and Neck Cancer #1
Hi to everyone hope all is well
I need some advice...
My dad has right tonsil and lymph node c hpv positive. Biopsy found this on 8-8-11.
8-22-11 he started treatment 76mg cisplatin. On 8-30-11 he was admitted to hospital.
For dehydration (cisplatin had effected his kidneys too much). On 9-7-11 he started
Carbo/5fu. 4 day infusion for 24 hr. In the meantime on 8-24-11 he started radiation.
His next infusion of carbo5fu was on 9-26-11. That Chemo finished on 9-30-11.
The next day he had severe burns to his neck (at first his neck was just red and burning
then it blistered and oozed) up to now he had 26 imrt radiations. They have to hold off on
radiation since 9-30 waiting for the oozing to stop (he can't put the mask over this).
Radiation dr says he will start again on tues 10-11 for the last 7 treatments.
Oncologist says she needs to discuss with radiologist whether to do the last Chemo or not,
or Perhaps postpone it a week (the next Chemo would be 10-18) she is afraid he will have
severe burns again while doing rad and Chemo together for last 3 rad treatments.
My question is how do you know if it is ok to not do last Chemo or postpone it.
How do you know it's enough? Dr. Says she goes by the look of the tumor and that she
does not see it on the side of his neck like she did in the beginning. About the tonsil part
I don't know she can't see in the back of his throat too much inflammation.
Am I missing something or is that how they determine if your done? We go back
Friday 10-14 for oncologist. And this tues. For the rad (27th of 33)

Any advice ? Anybody have similar reactions?
Thanks
Michelle

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
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    Silvadene Cream
    You might check out the above, I believe it's prescribed. It's for burn victims, but I've read a lot of people with the severe radiation burning used it with good results.

    I can only offer on the treatment, that I had basically the same diagnosis and treatment.

    Tonsil cancer, and one lymphnode involved. Tonsils came out first. The chemo and concurrent chemo/rads took care of the tumor.

    Nine weeks of cisplatin, taxoere and 5fu (which was via the fanny pack pump for four days). The tumor had actually dissolved away after that nine weeks of three week cycles.

    Then seven weeks of concurrent weekly carboplatin and 35 daily rads.

    To answer your question, I'm not sure anyone can say what is or more so what is not enough.

    The standard based on observations here and my own protocol, seems to be somewhere between what I had and only seven weeks or so of concurrent. Some have not been able to complete everything especially with the cisplatin and didn't undergo the last sessions, same with the last few days of rads on some.

    Some have switched over from cisplatin to carboplatin for one reason or another.

    Definitely rough choices and situation.

    Best,
    John
  • michdjp
    michdjp Member Posts: 220
    #3
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    Skiffin16 said:

    Silvadene Cream
    You might check out the above, I believe it's prescribed. It's for burn victims, but I've read a lot of people with the severe radiation burning used it with good results.

    I can only offer on the treatment, that I had basically the same diagnosis and treatment.

    Tonsil cancer, and one lymphnode involved. Tonsils came out first. The chemo and concurrent chemo/rads took care of the tumor.

    Nine weeks of cisplatin, taxoere and 5fu (which was via the fanny pack pump for four days). The tumor had actually dissolved away after that nine weeks of three week cycles.

    Then seven weeks of concurrent weekly carboplatin and 35 daily rads.

    To answer your question, I'm not sure anyone can say what is or more so what is not enough.

    The standard based on observations here and my own protocol, seems to be somewhere between what I had and only seven weeks or so of concurrent. Some have not been able to complete everything especially with the cisplatin and didn't undergo the last sessions, same with the last few days of rads on some.

    Some have switched over from cisplatin to carboplatin for one reason or another.

    Definitely rough choices and situation.

    Best,
    John

    Thanks so much for writing
    Thanks so much for writing back so quick. (I love the new picture!)
    The hospital gave us that cream, however radiologist said he could
    not use it as it would cause it to burn more if he did not wipe if off for
    the next radiation treatment (which he could not) . He told him he could
    use Carrsyn spray to clear away dead skin but then just let air get to it.
    My dads at that place where he does not want anymore. I am just
    worried if it wasn't enough then what. He's come this far (3 types of Chemo
    and 26 rad to date
    Thanks
    Michelle
  • jim and i
    jim and i Member Posts: 1,788 Member
    #4
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    michdjp said:

    Thanks so much for writing
    Thanks so much for writing back so quick. (I love the new picture!)
    The hospital gave us that cream, however radiologist said he could
    not use it as it would cause it to burn more if he did not wipe if off for
    the next radiation treatment (which he could not) . He told him he could
    use Carrsyn spray to clear away dead skin but then just let air get to it.
    My dads at that place where he does not want anymore. I am just
    worried if it wasn't enough then what. He's come this far (3 types of Chemo
    and 26 rad to date
    Thanks
    Michelle

    I can sympathize
    My husband was unable to do the 3rd cisplatin for the same reason. The oncologist and radiologist agreed to do 3 rounds of Erbatox the last three weeks of his rads. I worry too that maybe it is not enough. Jim had stage 4 base of tongue with mets to two nodes. The Erbatox just made him tired and gave him acne on his face and head which cleared up on its own.

    As for the burned skin. Aquafor is great for dryness and peeling but is hard to rub in because it is the consistancy of vaseline. We both have used organic, virgin coconut oil for our skin prior to diagnosis and Jim has had no burning with rads and the skin healed fast. You might want to try it for healing the burn. It is a little greasy at first but soaks in good. You can buy it for around $8 in the organic section of grocer or a health food store. No additives or perfumes so has no odor, good for chemo patients who are sensitive to smells.

    Hope this helps. I am praying for your father to heal quickly and for the treatment to work.

    Blessings,

    Debbie
  • michdjp
    michdjp Member Posts: 220
    #5
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    jim and i said:

    I can sympathize
    My husband was unable to do the 3rd cisplatin for the same reason. The oncologist and radiologist agreed to do 3 rounds of Erbatox the last three weeks of his rads. I worry too that maybe it is not enough. Jim had stage 4 base of tongue with mets to two nodes. The Erbatox just made him tired and gave him acne on his face and head which cleared up on its own.

    As for the burned skin. Aquafor is great for dryness and peeling but is hard to rub in because it is the consistancy of vaseline. We both have used organic, virgin coconut oil for our skin prior to diagnosis and Jim has had no burning with rads and the skin healed fast. You might want to try it for healing the burn. It is a little greasy at first but soaks in good. You can buy it for around $8 in the organic section of grocer or a health food store. No additives or perfumes so has no odor, good for chemo patients who are sensitive to smells.

    Hope this helps. I am praying for your father to heal quickly and for the treatment to work.

    Blessings,

    Debbie

    Thank you for your
    Thank you for your blessings. How is Jim now? When did his treatment end?
    When cisplatin did not work for my dad we were going to use erbatox but dr. Ended up going with carbo5fu.
    Hope all is well with Jim
    Thank you
    Michelle
  • NJR
    NJR Member Posts: 82
    #6
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    Mirror image
    My treatment regime is almost identical to your fathers and the results are too. I also decided that I didn't want to finish the final treatments because I was sure that I would be better off dead. I was receiving 126 mg Cisplatin and had learned from the previous two treatments that approximately 5 days after the treatment I would become more violently ill than I had ever been in my life. It was so bad that when I tried to use the feeding tube even that was rejected by my body immediately and to the point that it was coming out of my tear ducts and into my eyes. I stayed with it for three reasons. 1) My radiation oncologist said my chances of recovery were reduced by 50% if I didn't finish the treatments. 2) My Chemo doc said that my chances of recovery were reduced by 80% if I didn't finish it and 3) My grandson said, "But you told me don't never surrender, don't never give up. Can I quit T Ball? I don't like it"

    I am glad I finished it but I would certainly respect and understand why someone would decide not too because knowing what I know now, I would never do it again. What I can tell you that might make his last round a bit more tolerable is that his Dr's have a small degree of leeway in their dosage and reducing that is negotiable. For instance I was able to negotiate a 25% reduction in the amount of Cisplatin that I received in my last treatment and that alone was enough to keep me from being admitted to the hospital 5 days later. I still got sick, but not nearly as bad.

    I don't know if anyone would support me, but, I am convinced that when it comes to Chemo and Radiation, your treatment is as much art and experience as it is science on the part of your doctor.

    You should also know that at the very least one radiation treatment must be in conjunction with the Chemo as the outcome for the tonsil variety of head and neck cancer with Chemo alone is very poor and finishing the radiation is the biggest key to the puzzle.
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #7
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    SKIN BURNS
    I had a small 3rd deg burn and several larger 2nd degree burns on both sides of my neck. My nurses used a product called "mepilex" hope I spelled and said it correctly. It was a padded piece of a foam or sponge like product that they placed over my burns. It was the only treatment that actually healed my burns and allowed me to continue radiation uninterrupted.

    Mike
  • michdjp
    michdjp Member Posts: 220
    #8
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    NJR said:

    Mirror image
    My treatment regime is almost identical to your fathers and the results are too. I also decided that I didn't want to finish the final treatments because I was sure that I would be better off dead. I was receiving 126 mg Cisplatin and had learned from the previous two treatments that approximately 5 days after the treatment I would become more violently ill than I had ever been in my life. It was so bad that when I tried to use the feeding tube even that was rejected by my body immediately and to the point that it was coming out of my tear ducts and into my eyes. I stayed with it for three reasons. 1) My radiation oncologist said my chances of recovery were reduced by 50% if I didn't finish the treatments. 2) My Chemo doc said that my chances of recovery were reduced by 80% if I didn't finish it and 3) My grandson said, "But you told me don't never surrender, don't never give up. Can I quit T Ball? I don't like it"

    I am glad I finished it but I would certainly respect and understand why someone would decide not too because knowing what I know now, I would never do it again. What I can tell you that might make his last round a bit more tolerable is that his Dr's have a small degree of leeway in their dosage and reducing that is negotiable. For instance I was able to negotiate a 25% reduction in the amount of Cisplatin that I received in my last treatment and that alone was enough to keep me from being admitted to the hospital 5 days later. I still got sick, but not nearly as bad.

    I don't know if anyone would support me, but, I am convinced that when it comes to Chemo and Radiation, your treatment is as much art and experience as it is science on the part of your doctor.

    You should also know that at the very least one radiation treatment must be in conjunction with the Chemo as the outcome for the tonsil variety of head and neck cancer with Chemo alone is very poor and finishing the radiation is the biggest key to the puzzle.

    Inspiration
    Wow that was very inspirational. I commend you for finishing and hope all is well.
    As for that last part my dad had one round of cisplatin 76 mg with radiation, and two carbo 5fu with radiation.
    He is down to his last 6 radiations and last round of carbo 5fu.
    On Friday we find out if dr. Will go ahead with last round of Chemo or perhaps post-pone it one week
    This is so the last round WOULD NOT be together with radiation (even for 2 days) as that is all that is left on radiation.
    How do you feel about this? What would you suggest, go with last Chemo together with radiation or postpone one week
    So perhaps it will not burn as bad or nothing?

    Thanks for your input
    Michelle
  • NJR
    NJR Member Posts: 82
    #9
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    michdjp said:

    Inspiration
    Wow that was very inspirational. I commend you for finishing and hope all is well.
    As for that last part my dad had one round of cisplatin 76 mg with radiation, and two carbo 5fu with radiation.
    He is down to his last 6 radiations and last round of carbo 5fu.
    On Friday we find out if dr. Will go ahead with last round of Chemo or perhaps post-pone it one week
    This is so the last round WOULD NOT be together with radiation (even for 2 days) as that is all that is left on radiation.
    How do you feel about this? What would you suggest, go with last Chemo together with radiation or postpone one week
    So perhaps it will not burn as bad or nothing?

    Thanks for your input
    Michelle

    If it were me
    Hi Michelle,
    The correct answer of course is to go with what your cancer team decides is the best course of action. If they give you a choice however, my doctors impressed upon me very early that the key to success against cancer is to hit it as hard as you possibly can without killing the patient too. The reason behind giving rad and chemo in conjunction is that the chemo while ineffective alone will weaken the cancer making the radiation more effective. With some cancer cells it can also kill it before it establishes itself in distant locations. Unfortunately with our cancer it has a bad record for being able to do that. The problem with Cisplatin is only one slight step removed from straight draino and for me at least, more painful than the cancer itself. This makes it a very easy decision to act against one's own best interest. I do know this. After each round of Cisplatin my recovery time from it increased and I was forced to postpone the next cycle twice because my white blood count had not recovered sufficiently to handle it. A one week break did not seem to cause any harm aside from psychologically. For me the other two chemo drugs they gave me were inconsequential as all my fears were concentrated on what the Cisplatin would do to me this next time.
    If it were me, I have no doubt that unless given the choice I would go with whatever my doctors recommended if for no other reason than if the treatments don't work out there will always be that thought in the back of my mind that I could have done more but failed to do so.
    You should also be aware that your fathers last few Radiation treatments are likely to be his worst but the doctors do figure in the possibility of having to give him a break. They don't want to, but sometimes it simply cannot be avoided. The best thing you can do is to make sure that he has all the morphine and fentanyl that he wants. At this stage the worst he can do is take a dose that will make him fall asleep. ;-) I think as much as anything else, the pain killers were the only real reason I was ever able to finish the treatment. Except for my grandson of course.

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