Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

I'm still hanging in there -- no chemo

I just wanted to give everyone an update that I feel my health has continued to improve.  A little background, diagnosed stage 4, at age 34, after nearly 10 years of surgeries, radiation to the lymph nodes in my neck, and years of endless on and off again chemo, I finally had enough.  Not only had my oncologist ran out of chemo drugs to administer because the chemo had lost effectiveness, but also at the same time the drugs had become so toxic I literally couldn't do it anymore.  I had them all, Oxaliplatin, Irino, 5FU/Xeloda, Avastin, Erbitux-- by mistake, and a handful of others. 

Two oncologists in my hometown, along with a second opinion, at OHSU in Portland, OR, informed me that unless I found a trial at MD Anderson or another large research hospital-- that I had less then 3 months to live.  I was honestly so tired, and tired of hospitals, I simply made the decision to take whatever savings I could muster and left to spend the time I had left in Hawaii where I could enjoy some nice morning walks on the beach, and good relaxion with the time I had left.  I had come to terms with my illness, and said goodbye to many people I loved, and just took my golden retriever and left.  It was a super hard decision not to search for a trial, but as I stated, I simply couldn't spend one more day in a hospital. 

While we always hope for miracles, I realistically, thought the doctors were probably right.  I had been disappointed so many times over the years when the cancer had come back.  However, to my amazement, I feel like I'm getting better.  I don't have anything objective, as I have refused to have any scans done, get CEA tests, or see any doctors, but I know for a fact that my pain level is way down.  I could barely walk when I left six months ago, and I actually did my first slow jog yesterday of over a mile.  It has also been six months now, and the oncologists had only given me three months to live!  And this is on no chemo!!  I'm just very glad with the decision I made.

I guess I just wanted to let everyone know there is always hope, even when things are so incredibly difficult (and seem hopeless) on so many levels when you have this disease.  I don't want anyone to think they shouldn't get chemo or listen to their oncologists, but at the same time, there may come a time when you want to consider charting a new course.  (I also realize we are all in such different situations, and states of health.)

I'm definitely not cured or even in a remission, but everything is relative, and I really do feel I'm doing better then I was six months ago.  I will continue to give updates, and really admire all of you as you push on towards better health. 

 

Comments

  • Kazenmax
    Kazenmax Member Posts: 454 **
    Wow. I am currently going

    Wow. I am currently going through my third round of chemo. It's extremely difficult and I have decided if this bloody cancer comes back, I will stop. I have my family to love for but I don't want to be sick forever.

    You are my hero. You are doing exactly what I would do. Stop and love your life.

    Good luck to you. Sending love and strength your way.

    K

  • myAZmountain
    myAZmountain Member Posts: 417
    Good for you!

    Have been questioning how much chemo is necessary--it just seems so counterintuitive to destroy your immune system when yu need a strong one to combat cancer. Am reading Radical Remissons and it has made me think that alternative treatment is a viable option--Hope and pray your cancer leaves your body as you live peacefully in paradise!

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,203 **
    Inspirational

    Inspirational, thanks for keeping us updated.  I similarly have an older friend who was told she would be dead in three months from lymphoma.  She declined treatment and two years later she is still going strong.  Her doctors said, "oops, we guess you have the slow moving form, not the fast one."  

  • myAZmountain
    myAZmountain Member Posts: 417
    Chemo=revenue

    It is hard not to suspect a monetary motive in so much chemo being prescribed-got bill for 3  Chemo sessions (have insurance thank goodness) 105,000!! Just for 3 rounds. Dang!!

  • Kazenmax
    Kazenmax Member Posts: 454 **

    Good for you!

    Have been questioning how much chemo is necessary--it just seems so counterintuitive to destroy your immune system when yu need a strong one to combat cancer. Am reading Radical Remissons and it has made me think that alternative treatment is a viable option--Hope and pray your cancer leaves your body as you live peacefully in paradise!

    Radical remission

    I just read that book as well. The stories are inspirational. I am on board with most of the concepts. I just have trouble with eliminating everything... dairy, sugar, everything white, processed foods and meat. I can do everything in moderation. I just don't know if I have the will power for all of it. I can eliminate processed foods and limit the other stuff.

    ((Sigh)) it's tough enough right now to go through chemo. I think stress had more to do with my getting cancer. That's why I respect the decision to go to Hawaii. I'm eliminating as much stress as I can.

    K

     

  • Trubrit
    Trubrit Member Posts: 5,526 **
    Kazenmax said:

    Radical remission

    I just read that book as well. The stories are inspirational. I am on board with most of the concepts. I just have trouble with eliminating everything... dairy, sugar, everything white, processed foods and meat. I can do everything in moderation. I just don't know if I have the will power for all of it. I can eliminate processed foods and limit the other stuff.

    ((Sigh)) it's tough enough right now to go through chemo. I think stress had more to do with my getting cancer. That's why I respect the decision to go to Hawaii. I'm eliminating as much stress as I can.

    K

     

    Elimination = unhappiness

    For some people, they can eliminate foods and be happy. For others (me, you, and loads more), eliminating foods just causes dissatisfation and unhappiness, so why do it. 

    I am a firm believer in moderation in all things. 

    And, I will never forget my friend, who did eliminate all of those things, and died very unhappily several months later. She told me, when she was literally on her death bed  'I wish I'd just had an ice cream every now and again'. 

    Don't beat yourself up about not being able to follow a strict diet. Be happy, and enjoy your treats in moderation. I'm with you. 

    TRU

  • Trubrit
    Trubrit Member Posts: 5,526 **
    Wonderful!

    It is absolutely wonderful to hear from you, and to know that you are doing so well. 

    I admire you tremendously, for following your heart, and your instinct. 

    May you continue to walk on the beach with your dog.  And, if you ever head back to Portland, let me know. I visit there (Hillsboro) often, and would love to meet you.

    Bless you! 

    Tru

  • Twinzma
    Twinzma Member Posts: 236
    You're so young!

    Bet you have heard that a lot. But I am not saying it because of your illness, but rather your wisdom. You know your body better than any doctor does and you listened. You're still fighting this cancer just in a different way. You will not let it take what you have left to enjoy. I really admire your strenth and endurance and am so happy you are doing well now. I hope that the journey you are on is a long one filled with nothing but happy days and beautiful sunsets on the beaches of Hawaii! Hugs to you. 

  • darcher
    darcher Member Posts: 304
    Not to rain on parades

      After chemo ends regardless your condition you will begin to feel better.  What chemo does is it tears your body down and in the process kills the cancer.  The idea is that since there is so much more of everything else versus the tumor that it will die off before anything else does. Im in that boat right now.  My chemo ended April 29 and I am feeling better but only because my body is healing from the chemo.  Im still weak and can only do a dozen puch ups. On May 1 I couldn't do any. Mine was the standard treatment.  Diagnosed July 2017 with stage 3 rectal cancer.  I went through chemo & radiation for 28 sessions followed up by a surgery in October or November.  I can't remember now.  In January I did 4 months of chemo again.    

      In a few months my strength has improved but there is still muscle degredation which is from the chemo. Lets not forget that every cancer is different and they don't take lives at the same pace.  At the same time, the fact your still kicking and feeling ok is a testiment to your courage and bravery. 

  • BRHMichigan
    BRHMichigan Member Posts: 368
    Keep.on keepin on!

    Not sure I want to return to chemo after my broken hip heals. I so admire your decision. There is such peace in knowing you have some control over your future. Relying on chemo isn't the only way. Radical Remission proves that. I believe bitterness and stress caused my cancer too. I also monitor my blood sugar and try to avoid foods that spike it. Please keep checking in w us! Love to hear that you're doing so well.

  • Ruthmomto4
    Ruthmomto4 Member Posts: 705
    I am so happy too read this

    i  glad you are still feeling well! I hope it continues for a long time!

  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    edited August 2018 #13
    Wonderful

    I'm so glad that you are living the life you want and not beholden to any type of stigma that society says or wants.  You take that brisk walk, you enjoy a good meal and a drink, you spend time in the sun and have it beat down on you.  Spend time doing whatever you want and not  looking back, only forward.  March on.

    Kim

  • Tunadog
    Tunadog Member Posts: 235
    edited August 2018 #14
    Off chemotherapy- palitive care

    Wish me luck - moving me to set up a women’s room

    Let me know your experience 

  • Trubrit
    Trubrit Member Posts: 5,526 **
    Tunadog said:

    Off chemotherapy- palitive care

    Wish me luck - moving me to set up a women’s room

    Let me know your experience 

    Tunadog

    Tunadog, please start your own thread. We all want to know what is happening, and we all want to support you, no matter what you are going through. 

    Tru

  • beaumontdave
    beaumontdave Member Posts: 1,173 **
    Were I in you shoes, I would

    Were I in you shoes, I would get a big lift just leaving tests, doctors, and appointments far behind me. Hawaii sounds nice, I'll have to get there before I'm done. I hope it just gets better for you, or at least keeps feeling alright, you/we deserve whatever joy we can find, and that sounds like a nice place to look............................Dave

  • Twinzma
    Twinzma Member Posts: 236
    Tunadog said:

    Off chemotherapy- palitive care

    Wish me luck - moving me to set up a women’s room

    Let me know your experience 

    Tunadog

    As always you are in my prayers. I wish you nothing but peace. As tru said please start your own thred. 

  • tanstaafl
    tanstaafl Member Posts: 1,299

    Inspirational

    Inspirational, thanks for keeping us updated.  I similarly have an older friend who was told she would be dead in three months from lymphoma.  She declined treatment and two years later she is still going strong.  Her doctors said, "oops, we guess you have the slow moving form, not the fast one."  

    C moderated

    the Big question being, how often are there some molecular or immunological changes, that slow a fast one down... or reverse it.

    Unfortunately, regular drs are totally unprepared to document these changes in any scientific way, like even good blood tests.

  • Sestra17
    Sestra17 Member Posts: 62
    edited August 2018 #19
    Good for you! Enjoy every day

    Good for you! Enjoy every day you get. Sending you a big hug.

  • plsletitrain
    plsletitrain Member Posts: 252
    Keep living

    Beat the odds.  Keep fighting because not doing chemo doesn't necessarily mean we have to die.  Praying for your continued health and may we still hear from you on the boards in the next 20, 30 or more years!