Opinions, please, from the experts here...

KareGiver
KareGiver Member Posts: 301 Member
in Head and Neck Cancer #1
Hi all...my husband had his last chemo today - and as a reminder: tonsil cancer, stage II (although originally we were told stage IV) HPV positive. He was originally scheduled for three rounds of cisplatin. Received the entire first one, the second one was reduced to half because of low wbc and today, even though numbers were "fine," received only half to avoid kidney damage. He did have PEs two weeks ago and is taking two shots a day of Lovanox (sp?). Finally, my question is: will his "success" be compromised by having just this amount of the cisplatin? He has only 9 more rads (out of 38) to complete. Although he may feel better from having less now, we want to be sure we have done everything to kick this sucker's a**! Everyone on this board has helped us so much along the way...many thanks!

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Success Rate
    KareGiver...

    I don't believe that anyone (even the MD's) can give you the answer you are looking for. Obviously (in my opinion) they felt it was enough, but everyone is different...you can have the full gammet, or just surgery, or radiation or chemo....there are no guarantees...

    I had STGIII SCC HPV+ tonsil cancer (and one lymhnode) and with that, the tonsils came out. I had nine weeks of Cisplatin, Taxotere and 5FU (three week cycles for all). Then seven weeks of concurrent weekly Carboplatin, and 35 daily rads.

    Some have had much less than I did for similar diagnosis. I think a lot depends on what's going on currently industry wide, regionally, your health, age, etc....

    Add to that, I don't think all of this is actually a definite science or everyone would have the exact same treatment.

    Anyways, hoping that it all turns out well, and even with a slightly reduced treatment, success is in the very near future.

    Thoughts and Prayers,
    John
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #3
    Agree
    I agree, there is no Doctor or specialist other than God be able to answer your question. My treatment started with cisplatin and 5FU. After first of Cisplatin they were afraid of the possible kidney damage, so they stopped that. As it turns out it worked fine for me, that was 1 1/2 decades ago. I sure I am not the only one that it has worked out for. I say this... if you believe you will be fine then you will be fine! Keep a positive mental attitude, never never never give up and Stay true to your faith.

    John
  • Glenna M
    Glenna M Member Posts: 1,576
    #4
    I understand your concern...
    I also received three rounds of cisplatin (for lung and laryngeal cancer) and had to have mine decreased because my numbers were low. I'm now 21 months post chemo and still doing fine. I was afraid that reducing the dosage would cut my chances of going into remission but my onco assured me I would do fine.

    Relax and remember that the radiation is fighting the cancer also.

    My best to you and your husband.
    Glenna
  • Scambuster
    Scambuster Member Posts: 973
    #5
    Glenna M said:

    I understand your concern...
    I also received three rounds of cisplatin (for lung and laryngeal cancer) and had to have mine decreased because my numbers were low. I'm now 21 months post chemo and still doing fine. I was afraid that reducing the dosage would cut my chances of going into remission but my onco assured me I would do fine.

    Relax and remember that the radiation is fighting the cancer also.

    My best to you and your husband.
    Glenna

    KG
    Tough question but when i went through the 'Questioning stage', I started to read up about long term survival and my studies into the subject (and I have read 30 minutes to 2 hour every day since November 2009) show that the common denominators are: Medical intervention, Diet and lifestyle change (the Cancer diet), dietary supplements, application of relaxation / anti-stress techniques, exercise and some form of spiritual enlightenment.

    I think to ignore this evidence is foolhardy. I do not trust the Pharma statistics anymore, so him not getting the full doses may even be an advantage. Focusing on getting the body to kill of and prevent Cancer from getting a foothold through what ever mean possible, is what I do. The more I study, the more I discover the many ways we can help ourselves. The majority of these methods are sadly ignored and often ridiculed by the Cancer Industry. There are probably more books on these topics now than books on Cancer. You just have to dig a little as the www can be manipulated to keep them and the related articles well away form the top 10 hits.

    If you stumble into the underground alternative Cancer communities and the available therapies, and start to compile this information and see first hand the many positive outcomes, you will feel both enlightened and frustrated that you didn't look further earlier and why didn't your Doctors mention any of these to you !! Spilt milk, today is a new day and can be a new start. Start studying.

    Scam
  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    fisrpotpe said:

    Agree
    I agree, there is no Doctor or specialist other than God be able to answer your question. My treatment started with cisplatin and 5FU. After first of Cisplatin they were afraid of the possible kidney damage, so they stopped that. As it turns out it worked fine for me, that was 1 1/2 decades ago. I sure I am not the only one that it has worked out for. I say this... if you believe you will be fine then you will be fine! Keep a positive mental attitude, never never never give up and Stay true to your faith.

    John

    Must also agree
    Some people do fine with just one Radiation treatment and there C is gone, others must have both and still others do something else and there C never comes back. I believe a lot of it all depends on the Body’s Immune to take over once your treatment stops. Now days there are a lot of talk about life style changes and how it too can affect people who have or had C. To me a lot prayer is the best help.

    Take care
    Hondo
  • ratface
    ratface Member Posts: 1,337 Member
    #7
    Scambuster said:

    KG
    Tough question but when i went through the 'Questioning stage', I started to read up about long term survival and my studies into the subject (and I have read 30 minutes to 2 hour every day since November 2009) show that the common denominators are: Medical intervention, Diet and lifestyle change (the Cancer diet), dietary supplements, application of relaxation / anti-stress techniques, exercise and some form of spiritual enlightenment.

    I think to ignore this evidence is foolhardy. I do not trust the Pharma statistics anymore, so him not getting the full doses may even be an advantage. Focusing on getting the body to kill of and prevent Cancer from getting a foothold through what ever mean possible, is what I do. The more I study, the more I discover the many ways we can help ourselves. The majority of these methods are sadly ignored and often ridiculed by the Cancer Industry. There are probably more books on these topics now than books on Cancer. You just have to dig a little as the www can be manipulated to keep them and the related articles well away form the top 10 hits.

    If you stumble into the underground alternative Cancer communities and the available therapies, and start to compile this information and see first hand the many positive outcomes, you will feel both enlightened and frustrated that you didn't look further earlier and why didn't your Doctors mention any of these to you !! Spilt milk, today is a new day and can be a new start. Start studying.

    Scam

    Stage II is key
    "T2, No, Mo: The tumor is larger than 2cm across but smaller than 4 cm and has not spread to nearby structures, lymph nodes, or distant sites."

    If this was the case the chemo was icing on the cake anyway and it will be just like baking that cake with a little less sugar, no one will ever know.
  • Goalie
    Goalie Member Posts: 184
    #8
    ratface said:

    Stage II is key
    "T2, No, Mo: The tumor is larger than 2cm across but smaller than 4 cm and has not spread to nearby structures, lymph nodes, or distant sites."

    If this was the case the chemo was icing on the cake anyway and it will be just like baking that cake with a little less sugar, no one will ever know.

    I wouldn't worry
    Well, I am an expert only in my own case. I got nine weeks of rads and was to have gotten three cisplatins. Like some others, I was so sick with a low white blood count and also had blood clots (and Lovenox) that they first postponed the second chemo and then ultimately cancelled the last. We were told that it would not make a difference and that, in fact, some studies (actual clinical studies) have shown there to be no statistical difference between two and three and that this was becoming the new norm. If so, why do it again? I am all clear now almost six months from my last tanning session so I think that, at least in my case, it made no difference. And I was Stage 4 (though only by about two inches from tonsil to lymph node- nothing "distant").

    Be confident. Doug
  • KareGiver
    KareGiver Member Posts: 301 Member
    #9
    Goalie said:

    I wouldn't worry
    Well, I am an expert only in my own case. I got nine weeks of rads and was to have gotten three cisplatins. Like some others, I was so sick with a low white blood count and also had blood clots (and Lovenox) that they first postponed the second chemo and then ultimately cancelled the last. We were told that it would not make a difference and that, in fact, some studies (actual clinical studies) have shown there to be no statistical difference between two and three and that this was becoming the new norm. If so, why do it again? I am all clear now almost six months from my last tanning session so I think that, at least in my case, it made no difference. And I was Stage 4 (though only by about two inches from tonsil to lymph node- nothing "distant").

    Be confident. Doug

    As always,
    Thanks, everyone, for your comments, advice and reassurance!
  • Larla
    Larla Member Posts: 28
    #10
    Less Cisplatin
    I also was supposed to receive three Cisplatin treatments but was unable to get it because my body was too toxic. My oncologist said most people with my cancer (NPC) and treatment plan are not able to get the third and it does not effect the outcome.I am 20 months post treatment and I am doing well so far. Congratulations to your husband for almost reaching the end of the long and hard road of treatment.Good luck with the healing.
    Laura
  • KareGiver
    KareGiver Member Posts: 301 Member
    #11
    Larla said:

    Less Cisplatin
    I also was supposed to receive three Cisplatin treatments but was unable to get it because my body was too toxic. My oncologist said most people with my cancer (NPC) and treatment plan are not able to get the third and it does not effect the outcome.I am 20 months post treatment and I am doing well so far. Congratulations to your husband for almost reaching the end of the long and hard road of treatment.Good luck with the healing.
    Laura

    Laura...
    a favorite name (our daughter's)...thank you for the encouraging words!
  • DrMary
    DrMary Member Posts: 531 Member
    #12
    KareGiver said:

    Laura...
    a favorite name (our daughter's)...thank you for the encouraging words!

    Shotgun
    In this case, describing the firing pattern and not the seating priority.

    Anyway, in H&NC, chemo is mostly meant to get any of the little guys that might have broken off and tried to start a new home elsewhere before the radiation started. Last I checked, no one has a way to tell when this happens, hence the "fire the shotgun as many times as possible" approach. Most of the time, it is likely not necessary. Much of the remaining time, 1 shot is enough. They seem to be fairly certain that 2 shots are as effective as 3 - no tests yet on 1 or 1.5.

    On the other hand, if 1.5 if not enough, even 3 might not get the wanderers. Either way, it's best to have healthy organs and go from there.

    Welcome to the "we don't know what tomorrow will bring" club. Everyone is a member, but some folks are more aware of their membership than others.

    In other words, you get to do what folks without cancer do. Try to be as healthy as possible and recognize that cancer might pop up some day. We all hope it doesn't. You know how to deal with it if it does.
  • KareGiver
    KareGiver Member Posts: 301 Member
    #13
    DrMary said:

    Shotgun
    In this case, describing the firing pattern and not the seating priority.

    Anyway, in H&NC, chemo is mostly meant to get any of the little guys that might have broken off and tried to start a new home elsewhere before the radiation started. Last I checked, no one has a way to tell when this happens, hence the "fire the shotgun as many times as possible" approach. Most of the time, it is likely not necessary. Much of the remaining time, 1 shot is enough. They seem to be fairly certain that 2 shots are as effective as 3 - no tests yet on 1 or 1.5.

    On the other hand, if 1.5 if not enough, even 3 might not get the wanderers. Either way, it's best to have healthy organs and go from there.

    Welcome to the "we don't know what tomorrow will bring" club. Everyone is a member, but some folks are more aware of their membership than others.

    In other words, you get to do what folks without cancer do. Try to be as healthy as possible and recognize that cancer might pop up some day. We all hope it doesn't. You know how to deal with it if it does.

    Once again
    Dr. Mary, a wonderful post (among others) to ease the mind. Thanks!
  • Kimba1505
    Kimba1505 Member Posts: 557
    #14
    KareGiver said:

    Once again
    Dr. Mary, a wonderful post (among others) to ease the mind. Thanks!

    Stage II has to be good for something.
    I am on board with Ratface. I think the lower stage may give you some wiggle room for modified treatment. Most on these boards are not diagnosed until stage IV. Mark with Stage IV tonsil with mets to the neck muscle...so it had gone beyond the lymph nodes. He was started on cisplatin but had to stop because of hearing loss. He went to the sister drug carboplatin with taxol. He tolerated it better overall too.
    Today he is 13+ months post diagnosis, 2 PET scans reveal NED. He has his weight back, most of his taste back, saliva still an issue.
    One day at a time.
    Kim

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