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NED - for the time being...

Hi, all. I had my first scan last week (PET) and I am more or less NED. I have a large rectal tumor (ouch), four decent sized mets to the liver, and four tic tac sized mets on the lungs. Affected lymph nodes as well. Had 12 hits of Folfox and Avastin and during last week's scan nothing lit up on the PET. I'm relieved, but dont feel that I am out of the woods yet. My Onc thinks some of the junk might be dormant - maybe the chemo shocked it into dormancy -, so I'm in the process of going to a more comprehensive facility for further treatment, probably Anderson.  I"d like to have surgery to remove the primary tumor and anything else they can scoop out. 

I didn't have a terrible time with the chemo. Got really tired, and now have some lingering neuropathy in my hands and feet.  My fingertips feel like they've been frozen and dipped in wax - no pain but it's a different sensation. My feet are ok but they're tingly and I'll get these odd pulses. I can still walk normally, and the only thing I have difficulty with is putting on and taking off earrings (earring backs.)   I get odd abdominal pains still and I can feel the rectal tumor (feels like a golf ball) or maybe it's a calcified remnant (no idea at this point), but am chugging along step by step and will pursue the next phase. 

So. That's where I'm at.  I hope for the best. You never know with our disease, however I've been alive seven or so months since diagnosis, and for that I am very thankful!  I like this discussion board because people share their treatment regimens and experiences which makes me feel not quite so alone in all of this.

cheers

Karin

 

 

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392
    Karin

    I feel I'm in a dormant phase right now as well....my longest streak in a remissive state in 8.7 years...this was my 3rd time with it.

    Stay with it...glad things are on hold:)

    I'm sorry that you suffer from those side effects...I've got them to a degree...mainly one foot...hands some...we sure learn alot about nerves...it's sad that we have to pay with that.

    The next phase is the way to look at it...

    Continued best!

    -Craig

  • Chelsea71
    Chelsea71 Member Posts: 1,169
    Hi Karin,
    Congratulations on

    Hi Karin,

    Congratulations on the great scan. Smart to move to a bigger hospital. Dormant cancer sounds quite good right now. Hopefully you'll get some surgery in the near future. Hang in there.

    Chelsea
  • hippiechicks
    hippiechicks Member Posts: 509
    Congrats to you!! Good luck

    Congrats to you!! Good luck with the new hospital.  I am also getting as many opinions as I can right now while I still can!! Good for you!

     

    Wishing you the best! 

  • lilacbrroller
    lilacbrroller Member Posts: 412

    Congrats to you!! Good luck

    Congrats to you!! Good luck with the new hospital.  I am also getting as many opinions as I can right now while I still can!! Good for you!

     

    Wishing you the best! 

    thanks!

    Thanks for the good wishes.  Onward. Good luck to you all too.  8+ years of dormancy would be awesome!!!!!

     

    cheers

    Karin

  • Varmint5
    Varmint5 Member Posts: 384
    Good to hear

    Good to hear of your stable disease. I hope the stability continues and that you can get those boogers scooped out or fried or whatever and stay NED forever.

    Sandy

  • lilacbrroller
    lilacbrroller Member Posts: 412
    Varmint5 said:

    Good to hear

    Good to hear of your stable disease. I hope the stability continues and that you can get those boogers scooped out or fried or whatever and stay NED forever.

    Sandy

    thanks

    thanks much. Good luck to your daughter with her treatment. Having a supportive Mom I'm sure helps a lot (I have the same - called her Tiger Mom when she was forcing me to eat and drink this summer)

     

    Karin

  • Sundanceh
    Sundanceh Member Posts: 4,392

    thanks!

    Thanks for the good wishes.  Onward. Good luck to you all too.  8+ years of dormancy would be awesome!!!!!

     

    cheers

    Karin

    Hey K

    I've been in the fight over 8 years...from my last fight (my 3rd)...I'm now only 19 mos out in a remissive state...not 8-years clear...

    We're in a resting phase...and I hope it never wakes back up.

    Just wanted to clarify...didn't want to mislead you........

  • annalexandria
    annalexandria Member Posts: 2,571
    Getting a "dark" PET...

    is great, so congratulations!  There has been some stuff posted here about using Celebrex in conjunction with chemo to "wake up" and then kill off dormant cancer cells, so if you do further tx, it might be worth discussing this approach.  Good luck and keep us posted!  AA

  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    Getting a "dark" PET...

    is great, so congratulations!  There has been some stuff posted here about using Celebrex in conjunction with chemo to "wake up" and then kill off dormant cancer cells, so if you do further tx, it might be worth discussing this approach.  Good luck and keep us posted!  AA

    Good scans is always good

    Good scans is always good news.    Annalex....I wondered about that Celebrex  too....how is it celebrex wakes up and destroys the cancer cells with xeloda...I wish they'd elaborate on that when they report on those trials.  

  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    Getting a "dark" PET...

    is great, so congratulations!  There has been some stuff posted here about using Celebrex in conjunction with chemo to "wake up" and then kill off dormant cancer cells, so if you do further tx, it might be worth discussing this approach.  Good luck and keep us posted!  AA

    Good scans is always good

    Good scans is always good news.    Annalex....I wondered about that Celebrex  too....how is it celebrex wakes up and destroys the cancer cells with xeloda...I wish they'd elaborate on that when they report on those trials.  

  • YoVita
    YoVita Member Posts: 590
    Congratulations on the PET results

    I hope you can get the rectal tumor removed soon.  Best wishes!

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    fantastic news karin

    welcome to club ned, i hope your membership is long and joyous.

    hugs,

    pete

  • lilacbrroller
    lilacbrroller Member Posts: 412
    Sundanceh said:

    Hey K

    I've been in the fight over 8 years...from my last fight (my 3rd)...I'm now only 19 mos out in a remissive state...not 8-years clear...

    We're in a resting phase...and I hope it never wakes back up.

    Just wanted to clarify...didn't want to mislead you........

    darn it

    Oh well, but still, surviving 8 years is terrific. 

  • lilacbrroller
    lilacbrroller Member Posts: 412

    fantastic news karin

    welcome to club ned, i hope your membership is long and joyous.

    hugs,

    pete

    club dormant

    Thanks I'm in the process of making appointments now to Anderson, so we'll see. NED for a day most likely!

    somebody posted a link to the Celebrex study so I forwarded it to my oncologist. He seemed very interested. I read more about the study, and it seems they're in phase II, or have ended the phase.  I'd love to maneuver to become part of phase III.   Maybe they'll be at IV before long.

    take care all.

    Karin

     

     

  • annalexandria
    annalexandria Member Posts: 2,571
    smokeyjoe said:

    Good scans is always good

    Good scans is always good news.    Annalex....I wondered about that Celebrex  too....how is it celebrex wakes up and destroys the cancer cells with xeloda...I wish they'd elaborate on that when they report on those trials.  

    I wonder too..

    but have zero understanding of the mechanics!  I can't take the stuff anyway, kills my stomach (kind of like chemo for me, oddly enough).

  • annalexandria
    annalexandria Member Posts: 2,571

    club dormant

    Thanks I'm in the process of making appointments now to Anderson, so we'll see. NED for a day most likely!

    somebody posted a link to the Celebrex study so I forwarded it to my oncologist. He seemed very interested. I read more about the study, and it seems they're in phase II, or have ended the phase.  I'd love to maneuver to become part of phase III.   Maybe they'll be at IV before long.

    take care all.

    Karin

     

     

    I think Dr. Lin...

    here in Seattle, at SCCA, is using it with all of his patients.  If you end up doing more tx, your onc can probably get the info from him on dosage.  Since it's a readily available drug, you should be able to get it without being in a study (although insurance may not pay for it, and it is pricy!).  My onc wouldn't rx it for me, but apparently my HMO doesn't trust Pfizer and rarely use their drugs.

  • lilacbrroller
    lilacbrroller Member Posts: 412

    I think Dr. Lin...

    here in Seattle, at SCCA, is using it with all of his patients.  If you end up doing more tx, your onc can probably get the info from him on dosage.  Since it's a readily available drug, you should be able to get it without being in a study (although insurance may not pay for it, and it is pricy!).  My onc wouldn't rx it for me, but apparently my HMO doesn't trust Pfizer and rarely use their drugs.

    that's good news.  I have a fee for service. Hey, if it works and buys us time, why not? I wonder how long patients have to take it?

    thanks

  • lilacbrroller
    lilacbrroller Member Posts: 412
    pants that fit

    Well, my rectal tumor is gone! Just had a colonoscopy the other day and it's gone. Gone as in gone. Biopsy of surrounding tissue also reveals no cancer.  The chemo appears to have worked (12 treatments of Folfox and Avastin). I feel like a person who can to into a store, try on a pair of pants, and have them fit, the pants being the chemo.  (this never happens to me when I buy pants) 

    I was worried about needing surgery or radiation on the primary tumor, so now I am relieved that I can postpone this decision for awhile.   Had the tumor still been present, surgery was not recommended for me. 

    I'm going for a CT scan next week to see if the liver and lung mets have actually disappeared or have at least shrunk to a manageable size, and if there is actually junk on the other side of the primary tumor site that the colonoscopy didn't catch.  

    Regardless, I will probably be a "chemo for life" person, taking Xeloda as a prophylactic  - that's what my oncologist recommends - and will keep the mediport in.

    Hope this buys me more timeUndecided

    - Karin

     

  • lilacbrroller
    lilacbrroller Member Posts: 412
    pants that fit

    Well, my rectal tumor is gone! Just had a colonoscopy the other day and it's gone. Gone as in gone. Biopsy of surrounding tissue also reveals no cancer.  The chemo appears to have worked (12 treatments of Folfox and Avastin). I feel like a person who can to into a store, try on a pair of pants, and have them fit, the pants being the chemo.  (this never happens to me when I buy pants) 

    I was worried about needing surgery or radiation on the primary tumor, so now I am relieved that I can postpone this decision for awhile.   Had the tumor still been present, surgery was not recommended for me. 

    I'm going for a CT scan next week to see if the liver and lung mets have actually disappeared or have at least shrunk to a manageable size, and if there is actually junk on the other side of the primary tumor site that the colonoscopy didn't catch.  

    Regardless, I will probably be a "chemo for life" person, taking Xeloda as a prophylactic  - that's what my oncologist recommends - and will keep the mediport in.

    Hope this buys me more timeUndecided

    - Karin

     

  • YoVita
    YoVita Member Posts: 590

    pants that fit

    Well, my rectal tumor is gone! Just had a colonoscopy the other day and it's gone. Gone as in gone. Biopsy of surrounding tissue also reveals no cancer.  The chemo appears to have worked (12 treatments of Folfox and Avastin). I feel like a person who can to into a store, try on a pair of pants, and have them fit, the pants being the chemo.  (this never happens to me when I buy pants) 

    I was worried about needing surgery or radiation on the primary tumor, so now I am relieved that I can postpone this decision for awhile.   Had the tumor still been present, surgery was not recommended for me. 

    I'm going for a CT scan next week to see if the liver and lung mets have actually disappeared or have at least shrunk to a manageable size, and if there is actually junk on the other side of the primary tumor site that the colonoscopy didn't catch.  

    Regardless, I will probably be a "chemo for life" person, taking Xeloda as a prophylactic  - that's what my oncologist recommends - and will keep the mediport in.

    Hope this buys me more timeUndecided

    - Karin

     

    Wow

    That's great news about the rectal tumor.  Good luck with the mets - maybe they're gone too!

  • Brenda Bricco
    Brenda Bricco Member Posts: 579
    Congrats!

    NED, Dormant what ever we are calling it is wonderful!

    GOD bless.

    Brenda

  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    Congrats!

    NED, Dormant what ever we are calling it is wonderful!

    GOD bless.

    Brenda

    How WONDERFUL IS THAT!!!    

    How WONDERFUL IS THAT!!!     Laughing

  • lilacbrroller
    lilacbrroller Member Posts: 412
    smokeyjoe said:

    How WONDERFUL IS THAT!!!    

    How WONDERFUL IS THAT!!!     Laughing

    thanks

    thanks for the good wishes - like all of us, I'll just keep on truckin'

     

    Karin

  • annalexandria
    annalexandria Member Posts: 2,571
    Wow, esp given where you started,

    that's really amazing news!  You give hope to a lot of people on this board.  Let's just hope that if the cancer is indeed dormant, it stays that way for a long, long time....like forever.  AA