Have I got a story to tell.....

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Comments

  • bebo12249
    bebo12249 Member Posts: 181 Member
    #22
    Great news and thanks for

    Great news and thanks for years of your wisdom and support. Bill

  • Roar
    Roar Member Posts: 269 Member
    #23
    Glad you are going well

    i too have not checked in, in a long time. I see a lot of new comers and not manny of us Older survivors. I believe I am coming up on 6 years. I lost count. As someone use to say I am use to the new normal. Two grandchildren.  i am back to the daily grind of a professional career - yes I lost a few inches off the fast ball. Sorry to hear you had to go through all that drama. But very glad to hear it is working out. Keep up the good work and take care of yourself

  • wytrbt
    wytrbt Member Posts: 14
    edited August 2018 #24
    Praise God. You found a

    Praise God. You found a miracle! I'm so happy for you!

     

  • patricke
    patricke Member Posts: 570 Member
    edited August 2018 #25
    AWESOME NEWS

    Hey Phrannie,

    It's great to hear the awesome news that in spite of repeatedly going through the gauntlet battling the beast, you found treatment that works and are surthriving!  Your courage, and persistence are a superlative example for all of us.  Keep kick'in butt, and Keep It Mov'in Forward!

    Patrick

  • cid817
    cid817 Member Posts: 58
    #26
    GREAT NEWS!!!

    So happy to hear such great news!!!  We will be traveling the U.S. starting the first of the year in our motorhome.  I'll be on the lookout for all of you!! Cool

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    #27
    Hey Pharannie

    Commented earlier after I saw your post but it appears didn’t go thru.  Way To go Warrior Woman!  So glad things are looking up & your doing better.  Been off the site also but glad to see you back with your positivity intact.  Your amazing!  Hugs Lisa

  • Guzzle
    Guzzle Member Posts: 710
    #28
    YNWA

    Phrannie truly chuffed for your miracle x

  • Mom68
    Mom68 Member Posts: 108 Member
    #29
    Yay!

    This is the best news! What a great way to start a week! Amen! Thank you for sharing it with us! Yay! 

  • tbret
    tbret Member Posts: 76 Member
    edited September 2018 #30
    Wonderful

    Phrannie, I gotta tell you that even though we don't "talk" and you don't know me at all, part of my coming around less was your disappearance.   I didn't want to know, you know?

     

    But now that I know I feel stupid.  I will pray for the NED call and for this one to be permanent!

  • Ag123
    Ag123 Member Posts: 54 Member
    #31
    Awesome news!

    Hi Phrannie, 

    I am so happy to know that you are doing well! And that you have found the right treatment. This looks very promising indeed!

     

    PS. In case I haven't told you before (I am pretty sure I have), you're literally a wonder woman. :) 

  • Chris50
    Chris50 Member Posts: 14 Member
    edited September 2018 #32
    Such great news!

    This is such great news Phrannie.  I haven’t been on the forum in a month or two, but I have followed your story, kept you in my thoughts and prayers, and I am so happy  hear you are looking at NED after such a harrowing battle.  Your story should give you and all of us hope—especially given the variety of treatments that are becoming ever more available and hold such great promise.  You are an inspiration, and certainly lighten the load I carry since being diagnosed and treated in 2016.  I will try to stay on here in a more dedicated manner as I get so much from those who arrived here before me and those just joining the battle.  

  • Curlyn
    Curlyn Member Posts: 189
    #33
    Great news, Phrannie.

    Great news, Phrannie. Incredible news, really, when you think of all that you have been through and where you are today. It's a lesson that we are all individual, research marches on and the times they are achanging! You are one spitfire. Im so happy for you.

  • Chicklette
    Chicklette Member Posts: 225
    edited October 2018 #34
    Fantastic News!

    I know you really don't know me, but I used to read a lot of old posts when my husband was in the process of diagnosis a year ago.  I found your posts very informative and inspiring.  I'm so very happy to hear that you are doing well!  :)

  • Unknown
    Unknown
    #35

    Hello All,

    My name is Catt, I am new here. I was diagnosed with Non-Keratinizing Invasive Squamous Cell Carcinoma, Well-Differentiated (Nasopharengeal Cancer) on 11/20/17. That diagnoses took my breath away. It still does. To make a long story short...I went through 35 radiation treatments w/ 3 rounds of Cisplatin. I finished my treatments the first week of February 2018. With a few months of recovery. I healed quickly, thank God! My first PET scan came back clear and it wasn't until my second scan in August of 2018 something showed up to my disappointment. After a few months of hoping it was residual radiation...it wasn't. My doctor saw a nodule in my nasopharynx. This called for a biopsy, which lead to a tonsilectomy. My new diagnosis as of 2/15/19...Malignant Neoplasm of Posterior wall of nasopharynx Squamous cell carcinoma, NOS Primary. I'm completely and utterly overwhelmed again. My 33 Proton Therapy treatments starts on 2/26/19. No chemo during this treatment, they want to do that after I'm done and that could be indefinately.

    My doctor told me this is the only cure for my cancer. WOW!! I'm so nervous, anxious, sick to my stomach...what to do???? I was hoping that if I joined a group that I would learn more about my cancer and have more hope about my recovery and survival. Could someone...anyone offer some advice, because I'm at a loss.

    Thank you for reading,

    Catt

  • soonermom
    soonermom Member Posts: 155
    #36
    Keep on Trucking

    The treatments for HNC and related complications are evolving so quickly right now.  This is why as long as you feel good and can tolerate the treatments, it is worth exploring your options when thing come up.  Thank you for always being a positive inspiration to patients and caregivers here.  

  • mehrdad357
    mehrdad357 Member Posts: 66
    #37
    Great news Phrannie. I just

    Great news Phrannie. I just noticed this post of yours. Yiu have been the kindest,  nicest, most helpfull and strongest person on this forum. I am very happy about your NED, and think you

    deserve it more than anyone that I know of.

  • corleone
    corleone Member Posts: 312 Member
    #38
    unknown said:

    Hello All,

    My name is Catt, I am new here. I was diagnosed with Non-Keratinizing Invasive Squamous Cell Carcinoma, Well-Differentiated (Nasopharengeal Cancer) on 11/20/17. That diagnoses took my breath away. It still does. To make a long story short...I went through 35 radiation treatments w/ 3 rounds of Cisplatin. I finished my treatments the first week of February 2018. With a few months of recovery. I healed quickly, thank God! My first PET scan came back clear and it wasn't until my second scan in August of 2018 something showed up to my disappointment. After a few months of hoping it was residual radiation...it wasn't. My doctor saw a nodule in my nasopharynx. This called for a biopsy, which lead to a tonsilectomy. My new diagnosis as of 2/15/19...Malignant Neoplasm of Posterior wall of nasopharynx Squamous cell carcinoma, NOS Primary. I'm completely and utterly overwhelmed again. My 33 Proton Therapy treatments starts on 2/26/19. No chemo during this treatment, they want to do that after I'm done and that could be indefinately.

    My doctor told me this is the only cure for my cancer. WOW!! I'm so nervous, anxious, sick to my stomach...what to do???? I was hoping that if I joined a group that I would learn more about my cancer and have more hope about my recovery and survival. Could someone...anyone offer some advice, because I'm at a loss.

    Thank you for reading,

    Catt

    Hi Catt, Sorry to hear what

    Hi Catt, Sorry to hear what you are going through. I had my treatment for NPC done 7 years ago, so far I am in “complete” remission.

    First of all, I strongly encourage you to post on a separate thread, you will definitely get (more) answers.

    The proton therapy sounds like a good option, since the reoccurrence (tumor) is not too big (I guess) and confined to a delineated area. Proton is more targeted radiation and there are (allegedly) fewer side effects than IMRT type radiation (I suppose) you had.

    Something I would encourage everyone with a reoccurrence or re-treatment to ask is for Immunotherapy. Why? There is so called abscopal effect of radiation therapy (ability of localized radiation to trigger systemic antitumor effects). This may take care of any “residual” microscopic or incipient tumors. The evident issue is that there is no way (imaging, or any marker) to demonstrate that immunotherapy works, since the proton therapy will definitely take care of the bulk, and (potentially) remaining stray cells cannot be assessed anyway. So ask, but don’t be surprised you will not get it. They may tell it’s reserved in case of (re-)re-occurrence or mets.

  • Logan51
    Logan51 Member Posts: 468 Member
    #39
    Sorry to hear about C's returns, but

    P51

    "Believe." Remember who used to say that in his posts? And how I helped you when you were first diagnosed? (KC)-  I'm back.

    And, I'm less than a month from 10-years out to the good, I think. On Medicaid. Get hot flashes when I cough. Told my PC Dr., and he acts like no big deal.

    Anyway, have been observing for some time, and was sorry to hear about the times C has come back to you, but hoping all will be fine going forward.

    As always, Phrannie- Believe...

     

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