Trying to hang in there

To catch folks up, since I haven't posted here that much in the past 6 months or so, I was treated for Stg. IV SCC HPV+ in my left tonsil and soft palate in mid-2012. I had chemoradiation with cisplatin. I was all clear until late October of this year, when pneumonia revealed a mass in my right lung. It's the same cancer type (SCC HPV+, Stg. IIIa) but there's no way to know if it's a new primary or a delayed metastasis (and it wouldn't change the treatment anyway).

I'm halfway through chemoradiation, and the side effects are starting to kick in. It's similar to the treatments I had previously--daily radiation (Tomotherapy this time) and weekly lower dose chemo with Carboplatin and Taxol. I'm having some esophagitis that makes it a little hard to eat/drink, but so far magic mouthwash is helping and I have oxycodone if I need it. This time it's the chemo that seems to be kicking my butt. I'm exhausted all the time, super weak, and have trouble focusing on much of anything. I think part of it is dehydration so I'm trying to drink more and use DripDrop but even with that, it can be hard to stay hydrated (and boy I dread trying to find a vein at chemo tomorrow). 

I'm just over halfway through with a bit less than three weeks of chemoradiation to go. After that, I have two full dose chemo visits, three weeks apart and after that... the all clear? That's the goal, at least. I'm just finding the road a little rough right now (and I know it will probably only get rougher over the next three weeks). 

Hopefully it's OK that I post about my lung cancer treatments here, because I still consider this board my family. :-)

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    yes, hang in there!

    Laralyn,

    Stay tough, stay focused, stay on top of changes, this is all for better days ahead.

    I am sorry there isn’t an easier way.

    Best of luck,

    Matt

  • swopoe
    swopoe Member Posts: 492
    Thinking of you and wishing

    Thinking of you and wishing you all the best in the days ahead. Good luck at chemo tomorrow.

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    lifting prayers

    For strength and Grace during this rough patch, Laralyn.

  • MrsBD
    MrsBD Member Posts: 615 Member
    Halfway. Let the countdown

    Halfway. Let the countdown begin! I'll be praying for the day you get your all clear.

  • phrannie51
    phrannie51 Member Posts: 4,716
    You gotta stay here....

    this is where you belong....won't have it any other way.

    MM.....it IS magic, huh?  Works from the lips all the way down to the gullet.....I'm glad it's working that far down.  As has been our history, I'm following your lead.  The rads I'll be getting are going to "clip" my esphagus, too.....and I'll know that MM will work to help get food down. 

    As for hydration....send Charlie to Costco for  a case of Coconut Water....the Zico brand comes in quarts....it does have a little natural sugar in it, and a few carbs....but it's packed with natural electrolytes....potassium, magnesium, and sodium....add a little protein powder....and catch up on hydration.  It's all natural....

    We got through this together once, we'll do it again....got you tucked in my pocket, sweetie.

    p

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    Keep Hangin'

    Nothing more to add that others haven't said already--just wanted you to know that you are my thoughts.

    mike

     

  • pkzmf
    pkzmf Member Posts: 5
    keep a smile on your face

    nothing much to say the others havent already said will be prying for you keep a smile on your face and take one day at a time

  • Barbaraek
    Barbaraek Member Posts: 626
    Laralyn

    I've tried posting twice and my computer froze up, so third time is a charm. I just wanted to say that I appreciate your warnings regarding close follow up for longer periods of time for HPV+ SCC. We learn so much from one another,

    Of course you should post here....you are part of the CSN H&N family and we want to stay up to date so we can cheer you on. I have you and Phrannie sharing a pocket because you two rode the bus together before...and I figured strength in numbers.

    In my prayers....

    Barbara

  • wmc
    wmc Member Posts: 1,804

    I am sure I speak for the rest, and We would be offended if you didn't. Sorry but once you are H&N family, it's forever. You are free to post there if you want, but this is all about family. I do trully do believe that this is the very best group of people I have ever seen and met.

    Every since my first post and said Hi, Debbie Jeanne greated me and friended me. Then everyone all said welcome and let me know about the supper thread. Lorna, Matt, John, Don who I even got to meet, and will never forget the wonderful time I had, Josh, Hondo, Phrannie and her fan, You, Kent Cass, Debbie [Jim & I] Yensid, Tommyodavey, TracyLynn, Barbara, Jaycortney, LadyLacy, and a full page more. The one thing I feel is I am a better person because of all of you here. The new ones come and are so scared, and rightly so, with questions and many should have been answered by there doctor and just weren't. To be able to really talk to the ones that truly understand how you really feel, but don't judge, they just try to shair there knowledge and with hopes to make your journey to hell and back, just better for you if they can. Yes I get so sad when we lose someone, and knowing someone is not doing good, or terminal hurts so much. They have been so kind to everyone, and they need the understanding more now then anyone, and I will do my best to just be there for them, as they always had my back. 

    So in short, yes please keep us updated, and always know you are in my thoughts and prayers.

    Bill

  • tommyodavey
    tommyodavey Member Posts: 726 Member
    Barbaraek said:

    Laralyn

    I've tried posting twice and my computer froze up, so third time is a charm. I just wanted to say that I appreciate your warnings regarding close follow up for longer periods of time for HPV+ SCC. We learn so much from one another,

    Of course you should post here....you are part of the CSN H&N family and we want to stay up to date so we can cheer you on. I have you and Phrannie sharing a pocket because you two rode the bus together before...and I figured strength in numbers.

    In my prayers....

    Barbara

    Not Again

    I'm so sorry Laralyn that you are back on the merry go round again.  It just doesn't seem that long ago since your first illness, and now this.  Well, there's not much you can do about it but obey doctors orders and kick the sucker out again.  And you're right, it doesn't matter whether it is from the last time or brand new.  The treatment is the same regardless.

     

    Stay strong,

     

    Tom

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Laralyn

    You are one tough women so hang in and keep going forward, keep your focus positive that soon you will be at the finish line once more because you have a lot of living left to do in your life.

     

    God bless and watch over you

    Tim

  • hwt
    hwt Member Posts: 2,328 Member
    Hondo said:

    Hi Laralyn

    You are one tough women so hang in and keep going forward, keep your focus positive that soon you will be at the finish line once more because you have a lot of living left to do in your life.

     

    God bless and watch over you

    Tim

    Laralyn

    Thoughts and prayers hoping you are past the roughest part of tx. Glad you realize the imprtance of staying hydrated.

    God Bless

  • Laralyn
    Laralyn Member Posts: 532
    Thank you for all the support!

    Reading the responses really does make a difference. Thank you. :-)

    I'm going to try to stay focused on the fact that I'm done with chemoradiation at the end of the month. It's only two weeks and two days left--only two chemos (of the weekly ones) left to go. My medical oncologist gave me a couple new drugs to try for the nausea--one is a patch called Sancuso that replaces Zofran, and the other is an off-label drug called olanzipine. I'm not super excited about the olanzipine because it's an anti-psychotic, but from research it looks like in clinical trials it was more than twice as effective at controlling delayed nausea as other methods so I'm using it tonight.

    It's only a couple more weeks. I'll get through this!

  • Barbaraek
    Barbaraek Member Posts: 626
    Laralyn said:

    Thank you for all the support!

    Reading the responses really does make a difference. Thank you. :-)

    I'm going to try to stay focused on the fact that I'm done with chemoradiation at the end of the month. It's only two weeks and two days left--only two chemos (of the weekly ones) left to go. My medical oncologist gave me a couple new drugs to try for the nausea--one is a patch called Sancuso that replaces Zofran, and the other is an off-label drug called olanzipine. I'm not super excited about the olanzipine because it's an anti-psychotic, but from research it looks like in clinical trials it was more than twice as effective at controlling delayed nausea as other methods so I'm using it tonight.

    It's only a couple more weeks. I'll get through this!

    I hope

    both medications help with your nausea Laralyn...looking at it as finishing by the end of the month is a great way to view it. Keep checking those days off!

    Barbara

  • hawk711
    hawk711 Member Posts: 566
    Barbaraek said:

    I hope

    both medications help with your nausea Laralyn...looking at it as finishing by the end of the month is a great way to view it. Keep checking those days off!

    Barbara

    Hey Laralyn

    I havent heard from you in awhile and I'm so sorry you have to be doing this again....I remember how good you were doing and moving to LA and all.  I can only say, you did it once, you can do it again with the same success.  Keep hanging in there and come here when necessary and we'll give you a group hug!!

    About the eating, it's all about the calories now.   I use Boost VHC and equal amount of Starbucks frappachino drink to get 730 calories quickly.  I used to try to get only good calories, but you'd have to eat 100 lbs of Kale to match the calories of a little drink.  You need calories to burn to keep up your strength.  I know what you mean about the chemo.  During my treatment 5+ years ago, Cisplatin kicked my butt.  Down for 2-3 days and then build up to the next chemo treatment.  Just remember it is doing what it should and killing all the bad stuff.

    I only wish you the best Laralyn.  Keep posting and keep us up on your progress.  You'll get better and this will be a memory at Christmas 2016!

    All the best

    Steve

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Hey You..

    Just sending my thoughts, prayers, and support.. Seems like you have alreay been given the nest advise..

    John