Back in the saddle again

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

Quick catch up for folks since I haven't been posting here quite as often lately: I was treated for Stage IV HPV+ SCC of the tonsil and soft palate and lymph nodes in 2012 (chemo-radiation, IMRT, cisplatin). I was all clear until late 2015 when they found a large mass in my right lung and nodes around it (Stage III HPV+ SCC). I had chemo-radiation again (Tomotherapy, carboplatin + taxol) and got the all clear at my 3 month PET scan.

Results on my six month PET scan showed no cancer in any of the nodes and the main mass continuing to shrink... but new nodules growing in the lining of my right lung. This is considered a failure of first-line treatment, so now it's on to second-line treatments. I'm going deep into clinical trial land and hoping for a good roll of the dice on several of the immunotherapy options available.

There are two trials available here in LA. I'm leaning toward one that combines Opdivo with a second agent to help the immune system combat the cancer. The fallback is the new anti-PD1 drug from Pfizer (similar to Opdivo and Keytruda). I've also been approved for a clinical trial in Houston that harvests my T-cells, genetically alters them to be more effective against the cancer, then gives them back to me. The process of growing the cells takes time and I don't want to delay treatment, so that will probably happen if the trial drug doesn't work for me.

As a part of this, I'm doing a ton of research into head and neck cancer trials. Most of it is based around HPV+ SCC but some is general head and neck or even general solid tumors. If anyone's interested in what's available, I'd be glad to post more specific information.

This wasn't great news (understatement) and it was a rough week, but I'm in a better place emotionally now and ready to get started! Unfortunately I have to finish tapering off some steroids I was on for radiation pneumonitis, but I'm hoping I can begin treatments in 2-3 weeks.

Comments

  • swopoe
    swopoe Member Posts: 492
    edited July 2016 #2
    Hugs, Laralyn. I am sorry to

    Hugs, Laralyn. I am sorry to hear this news. I hope the next treatments do their magic for you. You continue to be in my thoughts and prayers.

  • stevenpepe
    stevenpepe Member Posts: 234
    #3
    I will be praying for you!

    I will be praying for you! Thank you for sharing.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited July 2016 #4
    update

    Laralyn,

     I am sorry about the bumps in your road.  Why couldn’t it be more like computer code.  It sounds like you are getting smart about options.  If anyone can figure this out, you should do well.

    Thanks for keeping in touch, I think about you and hope for the best.

    I did like most of your PET results, more good to come.

    Matt

  • the_wife
    the_wife Member Posts: 184
    #5
    I'm so sorry to hear this

    I'm so sorry to hear this latest news, Laralyn! My hubby is also a HPV+ tonsil survivor and had a similar diagnosis and treatment. If he had to go through this again I just don't know if I'd have the strength...but you do what you have to do and dig deep to fight! I hope you have a good support system behind you and a team that is top notch. It sounds you've done your homework. I for one would be interested to hear what you've discovered. It's so hard to find information on this stuff and keep up with all the latest. I've heard good things about immunotherapy. So nice to have options! Best of luck to you and please keep us posted!

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    Hi Laralyn...

    You know how I feel....it's a really crappy deal...and it's not fair at all.  You never cease to amaze me tho.  Rough week behind you, and again you turn around, put your dukes up...and say "I ain't done yet!"  I love you for that....you've been that way since I met you on here 4 1/2 years ago.  I'm holding your hand, through this...I really believe this new research on immunology is going to be the way all cancer is treated in the near future.  Opdivo is already being used for lung cancer. 

    p

    PS...don't toss out any of your research....! 

  • Barbaraek
    Barbaraek Member Posts: 626
    edited July 2016 #7
    Add me to the posse

    saying "Don't back down" Laralyn. Your information is always valuable, cogent and appreciated. I too will be reading your info about SCC and HPV. Prayers that you show good results from whichever clinical trial you elect.

    Barbara

  • wmc
    wmc Member Posts: 1,804
    #8
    Laralyn sad to hear this.

    If anyone can find the right combination that works, it will be you. I have read some very good things about the immunotherapy. Thoughts and prayers always.

    Bill

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    #9
    Hi Laralyn

    I am new to this forum but have read your posts whenever I see them.  Very interesting and full of information. I also have SCC HPV 16+ left tonsil, no nodules, thankfully.  Completed treatment ( Rad/Chemo 7 wks) 2+1/2 mon later scoped and CT with a NED outcome.  Feel extremely fortunate but because of past lung infections and your posts I went to my Lung Dr to make sure I get a CT of the lung regulariy. Will get my results today and hoping for another good report and they are NED also.  I will be pushing my Cancer Drs. To make sure my lungs are tested every time my throat is because I agree with you, be sure nothing is lurking elsewhere.  Thank you any and all information you come across. You are in my prayers,  Big Hugs.......Lisa

  • SusanUES
    SusanUES Member Posts: 125
    edited July 2016 #10
    I am sorry to read this...

    Tough time for you indeed.  Sending prayers and blessings to you...I hope things will turn out well.

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited July 2016 #11

     Laralyn, I would so like to hear more about the information you have researched. Received CT results today and since my PET scan in Feb the little flickers of light that they were not too concerned about have now started to form into a small mass in upper right lobe of lung.  So my Lung Dr ordered a new PET scan.  Will know more at the end of the month and if a biopsy is next. Since HPV is a nasty little virus, I have been concerned that it could travel to the lungs.  So any info you come across I would be interested. Thank you.   Lisa

  • Laralyn
    Laralyn Member Posts: 532
    #12
    Thanks for all the thoughts and kind words!

    The support I get here means a lot to me! :-)

    I'm back home here on the board anyway because in the Land of Clinical Trials, where I'll be hanging out, I'm considered a head and neck cancer patient again. Trial inclusion standards are pretty strict and apparently most trials for lung cancer would be reluctant to take me since it's not clear whether this was a metastasis of the original cancer or a new HPV+ SCC primary. 

    It sounds like I got in the combination trial, scheduled to start in about 2-3 weeks after I'm tapered off the steroid (which is unpleasant business, at least at the fast rate we're tapering). I also got good news from Houston about the trial--I'm not just accepted, but it's something I think a bunch of people should be aware of! 

    I'll create a new post with the information I've uncovered about treatments and trials for head and neck cancer (including the one in Houston), so it's easier for me to add to it as I find new information and it will be easier to search for, I think.

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