Starting treatments this week!

Laralyn
Laralyn Member Posts: 532
in Head and Neck Cancer #1

Hopefully it's OK if I post about my lung cancer treatments here even though they aren't H&N. :-)

The final decision is that the lung mass and nodes are inoperable, so I'm having 6.5 weeks of concurrent radiation and chemo (carboplatin+taxol). After that, I'll have two separate full-dose chemo treatments, three weeks apart. 

I had my first radiation treatment yesterday then was super nauseous today. I don't remember head and neck radiation making me throw up? And after the very first one? So weird.

I have my first chemo tomorrow morning at 8. For some reason, I'm more anxious about chemo than radiation even though I've been through it before. I used to have a nausea phobia, but mostly got over that going through treatments the first time (systematic desensitization, I guess!). I'm sure I'll be fine after the first treatment.

One thing that came out in my research is that recurrances or related cancers are appearing in HPV+ H&N cancers outside the normal screening times--in fact, the median time for HPV+ recurrence or related cancers is over 3 years--when with normal H&N cancer you're considered largely out of the woods at the two year mark. If you had HPV+ cancer, insist on continued screenings, at least CT, every six months to at least the 5 year mark. Especially insist on CTs for lung cancer screening--despite being the size of a golf ball, the mass in my lung was invisible on an xray.

Comments

  • wmc
    wmc Member Posts: 1,804
    #2
    We would be hurt if you didn't post here........

    You ars still a H&N survivor, you just have a new one that is lungs, but you will always be family here. Sad to here that HPV+ has more recurrances in H&N. It respones so well to the Tx it seems. May be it hides well but that would still show in the PET scans. I had always been told the all clear is at 5 years, but I have seen doctors tell there paients they are cured at two and three years and one or two were told the cancer is gone on the first scan. For me, I am told NED even tho when they removed my larynx they got it all and everything around it. I will not be told "Cured" until five years are gone by. The first year I was checked [scoped] every two months then it went to every six months. Maybe at three years it will go to yearly, don't know. I do expect or would not be surprised if I did get it in my lungs with my history and lung condition. May be I will get lucky and this will be all, don't know but it doesn't really matter at this time.

    Sorry to hear you got so sick on the first treatment, hope the rest are better. Please keep us informed as everyone here cares whem any of the family has a set back. Thoughts and prayers always.

    Bill

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    good luck!

    Laralyn,

    I wish you the best during every day of treatment and every day after that.

    That is interesting what you had to say about HPV+ H&N cancer.  Interesting scary.

    I hope you have 6.5 weeks of good days.

    Your friend,

    Matt

  • MrsBD
    MrsBD Member Posts: 617 Member
    #4
    Cancer is cancer. I hope we

    Cancer is cancer. I hope we can be of support to you during this round, as you have been for so many others. Hopefully your "practice round" with H&N has prepared you with a bag of tricks to handle the side effects this time. I'll keep on praying for you. 

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    I agree with Bill....

    you'd better post here....or we'll go looking for you!!  This is your "home"....and we love you.  It is weird about the rads getting to you that way....nerves, maybe?  Sub-concious poking at your body? 

    I am still chuckling over the "party-bus"....good one....best chuckle all day.

    p

  • katenorwood
    katenorwood Member Posts: 1,912
    #6
    Good information !

    I hope your tx's go better.  Let them know about the nausea....there are things that will help.  I think that we all need to be our best advocate, and by people like yourself sharing information we all learn.  HPV is one dx that is a bit unusual in the way it presents, and how we need to address issues on continued follow ups.  (great information !)  

    The issue of your mass not showing up on x-ray took my breath away.  Mine did not show up on x-ray either !  I also have issues with the pluera. (lining of lung walls throughout)  My hope is that tracking will now include CT's at least yearly for the first 3 + yrs.  Radiation exposure from the scans scare many people including our medical teams.  But my opinion is if we can catch things at a level that can be addressed early on why not ?  

    Please continue to let us know how you're doing.  You are and have been a very important part of our family here !  Stay strong Laralyn....and know our prayers and thoughts are with you.  Hugs sent !  Katie 

  • jtl
    jtl Member Posts: 456
    #7
    Lung screen

    I thought that SCCHN is most likely to go to the lungs if anywhere.  I have Medicare and they will only pay for 3 post treatment scans which means that you will likely be done with them after a couple years.  I was lucky and they paid for 4 but the rules have changed.  What they will pay for if you were a previous smoker is a CT lung screen annually which I am getting in a couple of weeks.  I just had a chest X-Ray as part of a pre op for my bladder cancer surgery (not related to the scchn) but I want the CT.  I also had a pelvic CT with contrast.  I just passed the 4 year mark so I am that much closer to 5.  At a minimum I think it is good to get an annual lung CT on-going.  If insurance or Medicare doesn't pay they only charge $150 at my imaging provider.  Good luck with your treatments!

    John

  • Grandmax4
    Grandmax4 Member Posts: 723
    #8
    Good wishes

    To know, a fellow warrior is ,once again ,facing this evil beast, hurts my heart. We will be keeping you in our thoughts and prayers

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #9
    Hoping

    Hoping for the best possible outcome for you, and sending sustaining thoughts your way.

    Deb

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