Chemo or not to chemo

Anyone here not elect to have chemo with their radiation with stage iV HPV neck/throat cancer? Or elect to have reduced chemo? 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    edited February 2017 #2
    welcome

    Charlize,

    Welcome to the H&N forum, sorry that you are here, but decisions about treatment is something each of us made.  Hopefully, you will have a good team to lay out the facts and tell you exactly what line of treatments will give you the most bang for your buck.  This is very serious business, often without any safe easy roads.

    I had surgery, radiation and Erbitux.  Being that Erbitux is not a traditional platinum based chemo, it is (for some) associated with less side effects.

    You are left in a tight spot, you don’t want to be here, I understand that, none of us wanted it.  Talk with your doctor and together you will find the path you seek (hopefully)

    It is tough.
    Matt

  • bebo12249
    bebo12249 Member Posts: 181 Member
    The thought very briefly

    The thought very briefly crossed my mind but I quickly told them to give me the full-meal-deal - whatever they recommended. I didn't want to later regret rejecting the advice of my oncolgist in favor of my uneducated guess or fears. By the way, i read about all the side effects of both chemo and rads. Scared the hell out of me. Truth is you'll have some of the side effects but likely not near all. Turned out that the treatment, although not easy, wasn't nearly as bad as i had imagined. Give yourself the best chance for a cure, whatever that takes for you. As someone said on this site, you're in a fight with Ca and it only has one thing in mind for you: give it all you've got. Good luck. Bill

  • Charlize
    Charlize Member Posts: 4
    Yes, we all do not want to be

    Yes, we all do not want to be here.  Unfortunately, we have no choice as my husband was just diagnosed about a month ago and his treatments commence next Monday, February 27th.  HPV cancer is now known to be over treated and we are doing our research on what procedure(s) to choose.  I would like to hear of others that chose not to use Chem with their radiation treatment.  I know there are trials. 

  • bebo12249
    bebo12249 Member Posts: 181 Member
    Charlize said:

    Yes, we all do not want to be

    Yes, we all do not want to be here.  Unfortunately, we have no choice as my husband was just diagnosed about a month ago and his treatments commence next Monday, February 27th.  HPV cancer is now known to be over treated and we are doing our research on what procedure(s) to choose.  I would like to hear of others that chose not to use Chem with their radiation treatment.  I know there are trials. 

    The trials are relatively new

    The trials are relatively new so finding study participants my be difficult. See the following for additional information. Best wishes.. http://www.cancer.net/certain-people-hpv-positive-head-and-neck-cancer-may-benefit-lower-dose-radiation-therapy.  

  • bebo12249
    bebo12249 Member Posts: 181 Member
    bebo12249 said:

    The trials are relatively new

    The trials are relatively new so finding study participants my be difficult. See the following for additional information. Best wishes.. http://www.cancer.net/certain-people-hpv-positive-head-and-neck-cancer-may-benefit-lower-dose-radiation-therapy.  

    For those interested, this

    For those interested, this appears to be review of current literature on this issue. http://www.gotoper.com/publications/ajho/2015/2015may/treatment-de-intensification-for-locally-advanced-hpv-associated-oropharyngeal-cancer

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    edited February 2017 #7
    I was offered.

    I was offered the radiation/chemo trial. I choose a one time fight like heck version. I got hit with it all. All I can say is it worked. Just had my first Neg PET scan at 3 months post treatment.

  • swopoe
    swopoe Member Posts: 492
    My husband had chemo and rads

    My husband had chemo and rads for his stage 1 tongue cancer Dec 2015-Jan 2016. We were more scared of the chemo (cisplatin) than of the radiation. But in hindsight, the chemo was a piece of cake. Other than taking a lot of time and some minor ringing in the ears during treatment, there were no chemo side effects. The radiation is what caused the problems. In any case, my husband has had 4 clean scans since finishing treatment and all is well. Hit it hard now. No regrets.

  • SASH
    SASH Member Posts: 421 Member
    To chemo or not to chemo

    This is a very personal decision that only you can make with your family and doctors.

    When I was diagnosed I asked about not having chemo and the odds of surviving 5 years were greatly reduced.  I thought if it was only a small percentage then I would contemplate not having chemo, but when the difference was approximately 30%, I opted to have the chemo.  I'm glad I fought as hard as I could even with the side effects that we face after treatments.  I would rather have the side effects than having green over me.

  • ratface
    ratface Member Posts: 1,337 Member
    Every cancer is unique

    Every single cancer is unique and every treatment should be tailored to the individual. You will arrive at the correct decision just by the fact that you seek answers. You don't mention the type or dose of chemo, the physical health of your husband, the location and size of tumor, the pathology results in reference to cell charecteristics, facility of treatment, recomendation by a tumor Board. I am trying to impress upon you the uniqueness of your variables. The old protocol was to throw the kitchen sink at the cancer and modern thinking leans toward one modality treatment. Those are the two extremes and your situation is somewhere between those. Don't get to caught up in what has worked for others and concentrate more on your  husbands unique situation and what the experts are recommending. Any one or combination thereof can work for your husband. This disease can also be treated incremently if needed and there is no set order of treatments. They know the numbers, ask them for percentages for different treatment protocols. These are some of the most dedicated professionals in the medical field, oncologist are a different breed of doctor, find one you like and trust in them. All the best to you both!

  • Captain Australia
    Captain Australia Member Posts: 21
    HPV cancers are most responsive to radiation

    Hey There

    I have the same HPV+ cancer and the numbers as they were tallied for me looked something like this:

    Base Survival Rate:  60%

    HPV+ (more responsive to radiation):  +20%

    Adjunctive Chemotherapy:  +2%

    Young & Strong:  +4%

    Nagging Wife / Family Co-Dwelling:  +2%

    That last one is for real .. apparently if you have people living with you & helping, your survival rate is higher, equal in efficacy to CHEMO.  It's likely to do with medication compliance & nutrition I suppose.  But yes, the chemo is apparently just +2% too .. it's meant to enhance the radiation but obviously not crucial.  Although for me, I want every percent .. but know that chemo also contains carcinogens and increases your risk of other cancers, recurrence, etc.  I'd have a straight dialogue with your oncologist... the chemo specialist and the radiation specialist for their views.

    Personally even at 2%, I'd do it.

    But yeah, for oral cavity cancers, apparently chemo alone isn't a viable treatment.  Some can get surgical remedies (mine couldnt due to position and size), but radiation is apparently the first and best method of orthodox treatment, and chemo is just intended to "guide" the radiation.

    Footnote:  my chemo side effects were moderate (loss and distortion of taste being the worst), but I don't regret it.  Radiation side effects by far more severe (mucositis, pain, burns)

  • jeffw69
    jeffw69 Member Posts: 10
    edited March 2017 #12
    I had Chemo and radiation for

    I had Chemo and radiation for stage 4 base of tounge 18 months ago,sa of two week ago,still NED

     

  • MGC
    MGC Member Posts: 72 Member
    edited March 2017 #13
    To Chemo or not to Chemo

    Hello and welcome. I also had Stage IV SCC tonsil and BOT HPV+

    No surgery, just chemo and rads.

    I am seven years out now and the side effects from the rads are ten times worse than the chemo at least for me.

    I did have a tuff time with the cysplatin however as I only recieved 2 of the planned 3 treatments because of the hearing loss

    but it was still better than the radiation side effects I am dealing with now. Also, as other said and my doctors said the chemo in conjunction with rads

    is suposed to make the tumor respond better.

    Good Luck

    Mark

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    First of all

    Our doctors told us chemo kills the cancer.  Radiation helps but chemo kills it.

    Talk to your physicians carefully. Few get a chance for a co-owner on treatment.

    Jim had stage IVb throat cancer - non HPV. Hypopharyngeal.

    Prayers lifted for a clear path for treatment.

  • rich_m
    rich_m Member Posts: 4
    edited March 2017 #15
    Charlize said:

    Yes, we all do not want to be

    Yes, we all do not want to be here.  Unfortunately, we have no choice as my husband was just diagnosed about a month ago and his treatments commence next Monday, February 27th.  HPV cancer is now known to be over treated and we are doing our research on what procedure(s) to choose.  I would like to hear of others that chose not to use Chem with their radiation treatment.  I know there are trials. 

    I may be a little late to the

    I may be a little late to the party, but I was diagnosed with HPV+ HNSCC.  I did a ton of research and saw how its been overtreated.  Were right on the cusp of a breakthrough so they finally STOP overtreating people, but not quite there yet.  I am about to start treatment in Pittsburgh at UPMC.  The first 4 hospitals I went to all wanted to give me chemo and radiation.... that includes Miami at Jackson Memorial, Chicago at Rush, Loyola and Alexian Brothers.  FINALLY I was highly recommended to UPMC as they are world class in terms of breaking ground with treatments.  I start Radiation ONLY treatment next week.  No chemo.  And he set this treatment because its clear of the over treating.  Hope things are going ok!

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    rich_m said:

    I may be a little late to the

    I may be a little late to the party, but I was diagnosed with HPV+ HNSCC.  I did a ton of research and saw how its been overtreated.  Were right on the cusp of a breakthrough so they finally STOP overtreating people, but not quite there yet.  I am about to start treatment in Pittsburgh at UPMC.  The first 4 hospitals I went to all wanted to give me chemo and radiation.... that includes Miami at Jackson Memorial, Chicago at Rush, Loyola and Alexian Brothers.  FINALLY I was highly recommended to UPMC as they are world class in terms of breaking ground with treatments.  I start Radiation ONLY treatment next week.  No chemo.  And he set this treatment because its clear of the over treating.  Hope things are going ok!

    best of luck

    rich_m,

    You walk a fine line between over or undertreating, how do you know? Are people who don’t make it undertreated?

    I would hope that they are getting better at this, it is true treatment side effects from H&N can be brutal, but successful.

    Your choice of rads ONLY will probably give you the results you want  Have they staged  you and determined the areas of cancer?

    Matt

  • MMDowns
    MMDowns Member Posts: 318
    How is your husband doing?

    How is your husband doing?  Your husband and mine started their treatments on the same day.  Just curious if you decided to go with chemo?  There is a large part of me that really wishes that we had asked more questions before starting the chemo and the rads.  The chemo wiped him out the first time.  His kidney function went way down, he was dehyrated and lost 12lbs in the first week.  Cisplatin does not fool around.  He is currently in a meeting with his oncologist to see if chemo is still viable. They were very concerned about his kidney function.  I cannot be there (which stinks) due to work but I sent a laundry list of questions just about the chemo he is supposed to receive today.  I even told him to think long and hard about the dosage and be an advocate for himself.  Our oncologist is not my favorite and she tends to tell us what we are to do and does not like to be questioned (especially by me).  Too bad.  Yes, we 100% want this cancer out of him but we do not want to leave this medical journey and start a new one regarding kidney failure.   I hope all is well with your husband.   

  • Chilinily
    Chilinily Member Posts: 15
    edited March 2017 #18
    Charlize said:

    Yes, we all do not want to be

    Yes, we all do not want to be here.  Unfortunately, we have no choice as my husband was just diagnosed about a month ago and his treatments commence next Monday, February 27th.  HPV cancer is now known to be over treated and we are doing our research on what procedure(s) to choose.  I would like to hear of others that chose not to use Chem with their radiation treatment.  I know there are trials. 

    HPV and chemo?

    Hello, I was diagnosed with HPV.OPC in a right lymph node just under my right ear, but inside the skin on the neck.  We went to Johns Hopkins where they wanted to do do a TORS plus 7 weeks of chemo and radiation.  That seemed very aggressive. We fortunately found Dr Paul Read, at University of Virginia Hospital.  He specializes in my kind of cancer.  He chose to use low dose radiation, 5 times weekly for 6.5 weeks.  I finished two days before Christmas.  I am still having problems with a soar throat and with radiation fatigue, but otherwise feel quite well again...finally.  I get my final PET Scan this coming week, and am hopeful I will be cancer clear after the test is done.  Meet with the radiologist and surgeon on the 28th.  I guess that will be the final decision.  Best wishes on finding the right treatment for your husband...

  • SuzJ
    SuzJ Member Posts: 427 Member
    I went with both

    It was explained to me that it's a lesser dose of Cisplatin, and I'm getting it, to enhance the radiation, make it stronger.

    Im fine with that because this thing picked the wrong person, and I want it gone!