HPV recurrence non surgical treatment choices

hopefulDonna
hopefulDonna Member Posts: 3
in Head and Neck Cancer #1

Good afternoon warriors!  My Husband was diagnosed Nov 13, 2015 with base of tongue and larynx t3n1 squamous cell cancer.  He recieved 39 rads and 14 erbitux.  The tumor shrank but was still present so we went to Philadelphia to Dr Gregory Weinstein and on June 10 2016 had a hemiglossectomy with partial larynx removed.  We found out this week that his cancer has returned to the opposite side... his PET scan lit up at the end of Oct so Dr Weinstein ordered an MRI which also was positive.  Upon going in for a scheduled biopsy Nov 21, Dr Weinstein reported that both the PET and the MRI were 'false positives' and did not perform a biopsy.  New PET results and  biopsy path form last Friday confirm the cancer has returned.  Now my husband's choices are total glossctomy with laryngectomy... Dr Weinstein says he has only a 20% cure rate.  My question to the group is has anyone here been in this perdicament (I'm sure there's many sadly enough..)  and what have been your experiences.  Where would it benefit us to get a second opinion from a head and neck cancer specialist?  My husband is leaning towards non surgical choices...immunotherapy perhaps....  Any information and shared experiences are most welcomed.  Thank you in advance, Donna

Comments

  • Laralyn
    Laralyn Member Posts: 532
    #2
    I would look into clinical

    I would look into clinical trials, especially combination immunotherapy clinical trials. Those seem to be having the best response rate right now. Not every medical center offers every trial--I switched to a different doctor/center for the trial that I'm on. I'd recommend getting a second or even third opinion from different facilities. You can also use a service like this one to help you select trials. The best trial may not be in your area.

    Speaking of which, since your husband is HPV+--take a look at this specific trial in Houston. The first step of it, gathering your blood and replicating cells, can be done remotely. Then they store your cells for a very long time, so you can choose to participate in the second phase (infusion) any time. That's what I did. You can do that trial even after other immunotherapy trials, or if those trials don't work (also what I did). So I know that if this trial stops working, the Houston trial is waiting for me. I mention that one specifically because a similar trial involving cancers caused by the Epstein-Barr virus had a very high response rate, including some complete responses. 

    Hope this helps!

  • caregiver wife
    caregiver wife Member Posts: 234
    edited April 2017 #3
    Treatment for recurrence

    Husband had Erbitux and maximum rads for very large tumor about six years ago.  I have  no idea if it was HPV or not.  

    Recurrence of primary and mets to lung about 15 months ago.  He did not qualify for any trials at that time.  He responded fairly well to additional Erbitux, not eligable for any additional rads. Primary tumor no longer responding to Erbitux about October this past year, so he has been on Taxol/Carbo every three weeks since.  Will continue this treatment as long as it continues  to prevent spread of disease.  He is doing very well and has had some shrinkage of the primary.  He will be eligable for Keytruda if/when his platinum based chemo fails..  

    Must consider husband's age and past heart/bypass history.  Our experience may have no revelance to your husband's case.

    If I were not certain of offered options, I think I would seek second opinion from another oncologist, but that is just  me.

    Hope This helps,

    Crystal

  • hopefulDonna
    hopefulDonna Member Posts: 3
    edited April 2017 #4
    Laralyn said:

    I would look into clinical

    I would look into clinical trials, especially combination immunotherapy clinical trials. Those seem to be having the best response rate right now. Not every medical center offers every trial--I switched to a different doctor/center for the trial that I'm on. I'd recommend getting a second or even third opinion from different facilities. You can also use a service like this one to help you select trials. The best trial may not be in your area.

    Speaking of which, since your husband is HPV+--take a look at this specific trial in Houston. The first step of it, gathering your blood and replicating cells, can be done remotely. Then they store your cells for a very long time, so you can choose to participate in the second phase (infusion) any time. That's what I did. You can do that trial even after other immunotherapy trials, or if those trials don't work (also what I did). So I know that if this trial stops working, the Houston trial is waiting for me. I mention that one specifically because a similar trial involving cancers caused by the Epstein-Barr virus had a very high response rate, including some complete responses. 

    Hope this helps!

    Thanks for info

    Thank you Laralyn for the info.  We are researching our options so I will check these out. 

  • hopefulDonna
    hopefulDonna Member Posts: 3
    #5
    caregiver wife said:

    Treatment for recurrence

    Husband had Erbitux and maximum rads for very large tumor about six years ago.  I have  no idea if it was HPV or not.  

    Recurrence of primary and mets to lung about 15 months ago.  He did not qualify for any trials at that time.  He responded fairly well to additional Erbitux, not eligable for any additional rads. Primary tumor no longer responding to Erbitux about October this past year, so he has been on Taxol/Carbo every three weeks since.  Will continue this treatment as long as it continues  to prevent spread of disease.  He is doing very well and has had some shrinkage of the primary.  He will be eligable for Keytruda if/when his platinum based chemo fails..  

    Must consider husband's age and past heart/bypass history.  Our experience may have no revelance to your husband's case.

    If I were not certain of offered options, I think I would seek second opinion from another oncologist, but that is just  me.

    Hope This helps,

    Crystal

    Thank you for info

    Thank you Crystal for the info.  We are checking everything out right now gaithering information... we still need to see our local Oncologist and Radiologist.  This is tough... the reponse from the surgeon, PCP and local ENT has been to focus on quality of life and let go...  My husband does not want to do surgery or a chemo that will make him sick- he's lost 75 lbs and couldn't tolerate it.  So we will see what we can find to help him.  Thanks again,  Donna

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