HELP Please -Different protocol from different doctor at University of Chicago.

hsnmp1978
hsnmp1978 Member Posts: 44
in Head and Neck Cancer #1

Hello,

Different protocol from different doctor at University of Chicago.

We just got back from doctor at university of Chicago.

He is not happy that my husband has to do second round of radiation and chemo.

Per him my husband will have following treatment.

One week twice a day radiation and chemo with 3 different medications all week and then one week off completely from everything. So he will have one will on and One week off kind treatment. He told us that my husband has only 40% of chance of survivor and radiation side effect can be dangerous since his body doesn’t had chance to fully recover from last treatment(last treatment was done on march 22 2013). And also grater chance to paralysis his right had since 1 in 10 people lose their hand in second round of treatment.

My husband story:

Diagnosed with stage 4 hpv originate head and neck cancer

36 radiation treatments done/ high does for Chemo done and after 3 months PAT/CAT neck dissection done and they found active cancer cells in there.

Now both radiologist and oncologist are suggestion to see someone at university for any qualify clinical trials.

Any suggestion would be helpful

I am looking as usual any suggestions or help.

Thanks

Hetal

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #2
    hetal, i can't advise u as i

    hetal, i can't advise u as i only had rad once.  i just wanted 2 tell u i'm very sorry u and ur husband are faced w/this.  i'm sure many others will respond that can help you.  i wish you the very best and u both w/b n my prayers.

    dj

  • hsnmp1978
    hsnmp1978 Member Posts: 44
    #3
    debbiejeanne said:

    hetal, i can't advise u as i

    hetal, i can't advise u as i only had rad once.  i just wanted 2 tell u i'm very sorry u and ur husband are faced w/this.  i'm sure many others will respond that can help you.  i wish you the very best and u both w/b n my prayers.

    dj

    Thanks you

    Thanks you

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Hopefully someone who has had rads twice (or more)

    will chime in here.

    If it was me, I wouldn't hestitate to do it twice.....I don't quite get what the loss of the right hand is all about, but must have something to do with where his radiation is going to be centered.  Still...the odds of that not happening are in his favor....and worth the risk in my view.  It's better than the alternative for sure.

    p

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #5
    Twice

    My husband had 2 rounds of 35 radiation treatments (70 altogether) but he had them 18 months apart in basically the same spot.  He didn't have any trouble with his hands.  But after the first round, he does have some damage to his spine and the radiation/oncologist who did the second round tried to keep it away from his spine.  But we were told going in that his cartoid artery could burst, which thankfully it didn't.  

    Twice a day this close after completing his first round of radiation is, to me, scary.  I think I would be looking for another opinion on that.  Your husband is still cooking as they call it from his first round of radiation.  But if you husband wants to do it, it is his choice as long as he understands the potential serious side effects.  

    Sharon

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #6
    3 times

    I have been radiated 3 times now, 1 year in between each, never directed at the same site but always head, neck.  I never had a warning of right hand.  I was only given a 10% chance this time, I try not to think about %'s.  I was HPV -.  HPV + is supposed to be more receptive to treatment.  If it didn't work the first time I wouldn't be opposed to a second go around but I would want to be very comfortable with the doctors.  It's tough having so many differing opinions, ask questions and be prepared for side effects when he goes in for treatments.

  • hwt
    hwt Member Posts: 2,328 Member
    #7
    KTeacher said:

    3 times

    I have been radiated 3 times now, 1 year in between each, never directed at the same site but always head, neck.  I never had a warning of right hand.  I was only given a 10% chance this time, I try not to think about %'s.  I was HPV -.  HPV + is supposed to be more receptive to treatment.  If it didn't work the first time I wouldn't be opposed to a second go around but I would want to be very comfortable with the doctors.  It's tough having so many differing opinions, ask questions and be prepared for side effects when he goes in for treatments.

    Surgery

    Is the possibility of surgery to remove lymph nodes an option? 

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #8
    3rd opinion?

    Hetal, 

    When I read your post I was at a loss as to what to say. I can't imagine being in that position or to have differing opinions wafting around in my head. With everything you've been through thus far, it can't hurt to seek one more opinion from another CCC. Hopefully they'll concur with one or the other and point you in a definitive direction. It's better than the the coin toss you're up against now.

    Positive thoughts and prayers

    "T"

  • hsnmp1978
    hsnmp1978 Member Posts: 44
    #9
    Gerson Therapy

    Since we are so desperate and confuse and in need for more suggestions we are thinking of alternatives.

    Does anyone have done Gerson Therapy  in Mexico not that we able to travel since we can’t afford it but they also offer online or on phone consultation.

    Does anyone have any experience with it??

    Thanks,

    Hetal

     

  • Ingrid K
    Ingrid K Member Posts: 813
    #10
    fishmanpa said:

    3rd opinion?

    Hetal, 

    When I read your post I was at a loss as to what to say. I can't imagine being in that position or to have differing opinions wafting around in my head. With everything you've been through thus far, it can't hurt to seek one more opinion from another CCC. Hopefully they'll concur with one or the other and point you in a definitive direction. It's better than the the coin toss you're up against now.

    Positive thoughts and prayers

    "T"

    3rd opinion

    HETAL

    I agree with T-Man.  Get a 3rd opinion.

    I would go to Loyola Medical Center....refer back to the CSN Email I sent you a few weeks ago.

    If it were me, I would get in to see Dr. Borrowdale ASAP.

    Good Luck.

     

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #11
    hsnmp1978 said:

    Gerson Therapy

    Since we are so desperate and confuse and in need for more suggestions we are thinking of alternatives.

    Does anyone have done Gerson Therapy  in Mexico not that we able to travel since we can’t afford it but they also offer online or on phone consultation.

    Does anyone have any experience with it??

    Thanks,

    Hetal

     

    Hi Hetal ...

    Maybe you can email " longtermsurvior " he has been through this 3 times.  Hondo also has an alternative that seems to be working for him.

     

    Bottom line is if your husband just finsished treatments and still has active cancer cells, your back is certainly against the wall and you have no choice but to go the "scortched earth" scenario (which means throw everything you can at it). 

    When I look at folks like KT and others who have been through this more than 1 time, I still see them fighting and still here and there is no reason why your husband can not do the same! 

    Whispered a prayer for healing and wisdom you find the best option!  Hang in there and tell your husband we are with him and you in spirit.

     

    Tim

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