New to this site...currently treating Stage IV NPC

Barbaraek
Barbaraek Member Posts: 626
in Head and Neck Cancer #1

Hello all. I am happy to have found this site...wish I found it two months ago, but better late than never. My husband (age 55) has been diagnosed with Stage IVb nasopharyngeall cancer. There are positive lymph nodes but they are above the clavicle and were in the field of radiation. No mets. HPV positive.

We have completed 35 IMRT radiation treatments accelerated thru 6 weeks instead of 7. with 2 concurrent chemo tx (Cisplatin). We just started  the 1st of 3 cycles of adjuvant chemo - Cisplatin again and also 5-FU infused over 4 days with a pump at home.  He has had a PEG tube since week 2 of radiation and relies on it for all nutrition at this point.

Ironically he is a cancer doc himself - a surgeon specializing in pancreatic, hepatobiliary and liver cancers working at a cancer hospital. As a surgeon, it was even more ironic that the only option NOT available to him was surgery, thus the chemoradiation route. So far treatment has been rough - he seems pretty sensitive to the chemo drugs - first time lots of nausea and dehydration necessitating visits to the hospital for IV fluids, and the second time neutropenic fever requiring admission for IV antibiotics for 4 days. Radiation was difficult also...but you all know how that goes.

Hoping to pick up lots of useful information from this site as well as support. As an analytical science type of guy, he is not too happy about data regarding local recurrence and I find myself looking for silver linings and positive info.

 

Barbaraek

Comments

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #2
    Welcome

    Welcome to our little family.  Like you, I didn't find this group until after I had finished with surgery and radiation.  Others with the same cancer will greet you but it sounds like the same treatment that they received.  HPV positive seems to be more receptive to treatment.  The effects of the treatment can be rough for us.  Stay in touch and ask questions, most of us have gone through and will let you know what helped for us.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    Hi Barb...welcome to our little

    internet home....I was one of the lucky ones who found this forum right after diagnosis.  They saved my bacon, with tons of knowledge and support on how to get through this easier.

    I also had NPC, Stage III....bilateral lymph nodes.  I had exactly the same treatment as your husband.  The Cisplatin/5FU after rads were over were the toughest part for me, but I seemed to snap out of it about 2 months after treatment finally finished (that will be 3 years tomorrow!!!).

    I'm glad you found us.

    p

  • rcaulder
    rcaulder Member Posts: 70
    #4
    As an analytical science type of guy

    God is also an analytical science type of guy, as He is a creator, builder, architect, physician, and artist amongst may other things. I can relate to your husbands thinking on data. I have two 11 year old children. When I read some grim statisticts, I became overwelmed with saddness at the possibility of my children losing their Dad. It then suddenly accured to me, God doesn't pay attention to statistics, neither should I.  All things are possible with God. Silver lining is the Golden lining. looking to Him and trusting He's has a plan. We can't change data. We can change not letting it affect us.

  • MrsBD
    MrsBD Member Posts: 617 Member
    #5
    Welcome

    You have found a great site for support. Not only will you find people with analytical, scientific news, but also those who are here to provide emotional support and practical advice. This group has been a blessing to many. There have been recent improvements in the treatment of this cancer, so don't lean too heavily on statistics. Your husband is a uniquely created individual, not a number. The therapy is really rough, but focus on hydration and nutrition to speed his recovery. I will keep you both in my prayers.

  • wmc
    wmc Member Posts: 1,804
    #6
    Welcome to the H&N Group

    Welcome to the group, but sorry you need to be here. Mine was in the larynx and syrgery was my only option stage 3 SCC. It might not seem like much but being HPV + is good as it responds to this treatment the best. You are looking for hope and that silver lining. The survival rate is very high. Now we need to deal in facts and what you both will need to know on hao to deal with. Sorry no sugercoating, will tone it down some tho. Head and Neck cancer is the second worse treatment you can go through. Also one of the higest survival rates. Chemo and radiation is a rough road he is going down with lots of bumps and turns. Many on this site have gone down the exact treatment and are doing fine. Almost everyone has had to have the chemo and radiation. Very few were like me and only had surgery. My lungs are bad so that was my only option was to remove my larnyx, but they got the cancer out. Radiation has side effects and some go on for years. Some loose there hearing with certin chemo. The others will chime in that had what he has. I would recomend reading the Superthread as it has terms and many answers on how to help with problems, and writen bu the members.

    Now as for you it will be rough because you will see and feel his pain, but can't do anything, except being there for him. Don't forget yourself. You will need to rest and have a time out period just for you each day. You can't take care of him if you are rundown and running on luck and fumes. You need rest too. Will keep you in my thoughts and prayers.

    Bill  Oct 2013

  • Barbaraek
    Barbaraek Member Posts: 626
    #7
    Thanks for the welcome, all

    Thanks for the welcome everyone. I know support will be key for our success.

    Nasopharyngeal seems to be a slightly different animal when I read articles about head and neck. The data I saw didn't find an advantage for HPV+ for nasopharyngeal, but for oral. That's ok...I'm going to take it as a positive anyway. I also can't find a lot about 5 year survival rates that is based on new research. What I find comes from early 2000's and hovers around 38%.  That doesn't matter either - my mantra has been "Why not?" Why not be one of the ones who shows no evidence of disease? why not be in the minority? why not be a miraculous example? why not think about a vacation a year from now? etc. etc

    Yep, the treatment has been pretty horrendous, but we are DONE with radiation, and in 3 more days we'll be done with adjuvent chemo #1. Without proselytizing, we have a strong faith and that has helped me a lot on this journey so far. I have always been a person who interacts and relates with others so I know this board will be helpful to me as a caregiver, and helpful to my husband as we look for ways to manage and cope with all aspects of this disease.

    Barb

  • Barbaraek
    Barbaraek Member Posts: 626
    #8
    phrannie51 said:

    Hi Barb...welcome to our little

    internet home....I was one of the lucky ones who found this forum right after diagnosis.  They saved my bacon, with tons of knowledge and support on how to get through this easier.

    I also had NPC, Stage III....bilateral lymph nodes.  I had exactly the same treatment as your husband.  The Cisplatin/5FU after rads were over were the toughest part for me, but I seemed to snap out of it about 2 months after treatment finally finished (that will be 3 years tomorrow!!!).

    I'm glad you found us.

    p

    Thanks for the welcome

    Well, Happy anniversary then on 3 years post tx! I am wondering why you felt the Cisplatin/5FU after radiation was the toughest part. I have to confess I didn't think anything could top the last two weeks of radiation with chemo - which for us included a four day stay in the hospital for neutropenic fever. What should I be bracing myself for as a caregiver?

    Barb

  • donfoo
    donfoo Member Posts: 1,773 Member
    #9
    glad you found CSN

    Great place where you get first hand information about cancer. The saying goes a surgeon will get the cancer with a scalpel, a radiation oncologist will get the cancer with a linear accellerator, and a medical oncoldogist will use chemo. The combination of chemo and radiation AND the added chemo round is a powerful combination. I did induction TPF rather than post rad but the response was so visible that I knew it was also killing all the cancer hiding. I'd view the PF rounds like Drano going through his bodiy killing anything left. Going all-in the first time is something I believed in as well and never have any seconds thoughts about not doing all that could be done. 

  • amr2662
    amr2662 Member Posts: 45 Member
    #10
    Me too

    Hi Barbaraek, 

    I am sorry you and your husband are having to go through this, but this group is a great resouce for information.

    I am a 17 year survivor of Stage IVb nasopharyngeal cancer.  i participated in a phase 2 clinical trial  testing a new chemo regimen followed by 7 wks of radiation.  The treatment was difficult and it took several months for me to get back to "normal".  

     I know the 5 year survival rates weren't great back then, but they have improved.  Besides, if the odds really mattered, I would never have gotten NPC at age 26 in the first place.  Don't worry about the numbers.

    I have had no recurrences so I know first hand that this can be beaten.  Stay positive.

     

    Meredith

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    #11
    phrannie51 said:

    Hi Barb...welcome to our little

    internet home....I was one of the lucky ones who found this forum right after diagnosis.  They saved my bacon, with tons of knowledge and support on how to get through this easier.

    I also had NPC, Stage III....bilateral lymph nodes.  I had exactly the same treatment as your husband.  The Cisplatin/5FU after rads were over were the toughest part for me, but I seemed to snap out of it about 2 months after treatment finally finished (that will be 3 years tomorrow!!!).

    I'm glad you found us.

    p

    5FU didn't like me :)

    which by the 2nd dose was a mutual thing....I knew exactly why they named it FU.  I didn't hardly use my tube during radiation, but once the 5FU came on board, it was tube time...all the time.  My mouth was the biggest misery.  My lips turned to hamburger, I could only sip L-glutamine powder mixed with water out of a styrofoam cup (plain water was too tough, and glass or plastic too rough).....I put Aquafor on my lips with plastic wrap as the ridges on my fingers were too painful. 

    Aw....but that's history....and I can barely remember it now....

    p

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #12
    hello barb and welcome to the

    hello barb and welcome to the family.  sounds like your hubby will at least know a little going into this.  it is ironic but cancer doesn't discriminate, it attacks everyone :0(  i'm glad the rads are over and hope the chemo will be done soon w/o many side effects.  i will keep you both in my thoughts and prayers.

    God bless you,

    dj

  • Hondo
    Hondo Member Posts: 6,636 Member
    #13
    Hi Barbarek

     

     

    You are right about being here in CSN, it is a place where everyone can find help. I had NPC come back on me 3 times, the last time in 2006, it was not easy fighting it but with proper diet and a lot of praying I made it. I have a lot of problems that I live with from the radiation the last one was swallowing so I now live on a PEG tube. Give it time and he should heal and be able to go back to helping other get over this monster they call cancer.

     

    PS: Glad to have you both as part of the family here on CSN

     

    Tim

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #14
     

     

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