Do NED patients tend to leave the forum?

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Comments

  • ron50
    ron50 Member Posts: 1,723 Member
    KathiM said:

    I have wondered the same, Ron and Virginia....

    WHY are they not looking at we 'long term, beat the odds' survivors?  I would thing that by studying us, they could find some clues as to what makes us different, and go with it!

    I must confess, I am not as long 'in the game' as you two....but with my 2 cancers both in the lymph system, and no recurrance...you think SOMEONE would be interested....

    Besides ME, of course...*grin*.....ALWAYS must, in the end, be about ME!!!

     

    Hugs, to you both, you were and are my inspiration!!!

     

    Hugs, Kathi

    Gday Kathi
    I had a maternal grandmother who had a breast off at age 45 , she passed away at age 96. I really wonder if some of us are genetically programmed to survive. Despite our illness and the related stress of our lives, I can only imagine how stressful it is watching some one you love go thru a heart transplant, we continue to survive..It is very hard sometimes tho when we see our friends going thru such hell to just accept that we are surviving when they are not..... There must be an answer somewhere. I see a cardiac specialist in a couple of weeks . I don't think I have a serious heart problem , I think it is all coming from the fact that I am losing nearly 4 grams of protein a day thru my kidneys, and I am not being treated for it. I think it is the oedema and particularly , pulmonary oedema that is stressing my heart... Big Hugs to you and your partner, wishing you both a reprieve from any sort of health problems and some stress free good times...Ron.
  • KathiM
    KathiM Member Posts: 8,028 Member
    ron50 said:

    Gday Kathi
    I had a maternal grandmother who had a breast off at age 45 , she passed away at age 96. I really wonder if some of us are genetically programmed to survive. Despite our illness and the related stress of our lives, I can only imagine how stressful it is watching some one you love go thru a heart transplant, we continue to survive..It is very hard sometimes tho when we see our friends going thru such hell to just accept that we are surviving when they are not..... There must be an answer somewhere. I see a cardiac specialist in a couple of weeks . I don't think I have a serious heart problem , I think it is all coming from the fact that I am losing nearly 4 grams of protein a day thru my kidneys, and I am not being treated for it. I think it is the oedema and particularly , pulmonary oedema that is stressing my heart... Big Hugs to you and your partner, wishing you both a reprieve from any sort of health problems and some stress free good times...Ron.

    Thank you, my dear Ron, for the good wishes!!!!

    I think you are on to something about 'genetically engineered to survive'....

    As I've shared before, my mom survived both endometrial and breast cancer, me, with my two, rectal and breast, and my full blood sister, anal and breast.....we are also different in that we heal fast, rarely get sick, have an super high pain tollerance, and high cholesterol (but the ratio is fantastic...the 'good' cholesterol is so high!).  As I said....I wish someone would use this for the 'greater good'!!!!!!!

    I will keep you in my thoughts and prayers with the cardiac troubles, as well as the protein loss....

    The docs have my beau on a huge amount of protein in his diet to support his cardiac functioning....and, of course, low salt and sugar (anti rejection drugs cause insulin dependent diabetes).

    His will to live is even stronger than mine, it seems!  At 9 weeks post transplant, he is breaking all the normal recovery times, exercising now 5 times a week, at least an hour each time.  He REALLY wants to get back to our lifestyle...and will do anything the doctors say to get there!  July 2014 is the earliest to return to our Dutch home, since there is MUCH overseeing with the new heart and threat of rejection in the first year....

    Hugs, my dear friend!  Kathi

  • PatchAdams
    PatchAdams Member Posts: 271
    as for me.......

    I was NED for 3 years and now have been NED again for 18 months.  I have a PET in mid Oct.  If that scan is clear,  I'm coming up on 5 years  since dx! 

    I tend to come and read about once a week especially if someone has been ill and I'm concerned.  I come when I'm facing a scan, too.  Just dropped by today for no real reason.

    Kimby and Lisa42 touched me the most.  Both were awesome women and I talked with them, listened to their heartaches and then their families kept in contact for a year or so.  

     

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    ron50 said:

    Gday Kathi
    I had a maternal grandmother who had a breast off at age 45 , she passed away at age 96. I really wonder if some of us are genetically programmed to survive. Despite our illness and the related stress of our lives, I can only imagine how stressful it is watching some one you love go thru a heart transplant, we continue to survive..It is very hard sometimes tho when we see our friends going thru such hell to just accept that we are surviving when they are not..... There must be an answer somewhere. I see a cardiac specialist in a couple of weeks . I don't think I have a serious heart problem , I think it is all coming from the fact that I am losing nearly 4 grams of protein a day thru my kidneys, and I am not being treated for it. I think it is the oedema and particularly , pulmonary oedema that is stressing my heart... Big Hugs to you and your partner, wishing you both a reprieve from any sort of health problems and some stress free good times...Ron.

    "GE"

    The tumors are genetically damaged to survive, spread and thrive to various degrees.  Life Extension historically referred to 3 antibody stains that are molecularly targetable, CA19-9, CSLEX1, and COX2.   CEA appears to be a rough surrogate for CSLEX1, largely unused outside of Japan.   I've noticed that most long term survivors tend to be missing or low on either CEA or CA19-9 for mCRC adenocarcinomas, a minority of the initial stage IV population.   Those missing the COX2 might be about 1/6 of the initial mCRC patients. 

    In our case, my wife was "blessed" with all three markers overexpressed in her surgical tissue samples as well as elevated CEA and CA19-9 biomarker levels in the blood.  So we treated those items per the literature.  So far, her tumor residues haven't overcome the mild tx.

     

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    Sorry I didn't respond to

    Sorry I didn't respond to this post sooner. I have been just laying low with the posting. I think I am going through a mid life or maybe mid cancer crisis. Most of you know I am extremely active with mountain biking and kayaking. I have added sport atving to my activities and that has gotton addicted to powersports so now I am in the process of getting my motorcycle license and buying a sport bike (Crotch rocket). I am determined to ride a motorcycle to the hospital for my next MRI at the end of October. So I hope to have my license and bike within the next week. I have also become one of those crazy people who are doing the ketogenic diet. At first I though it was crazy but I have been researching it for over a year and feel it is worh a try.

    Anyway I got a little off subject. I still consider myself NED and I feel it is my duty/privilage to stay here to offer any help/advise that I can to others. After 8 years of fighting I hope I have some wothwile experience to share. I certainly understand people that leave here when they are NED. It is tempting sometimes. All of the bad news can be really hard to handle at times.

    All of the people that we have lost here hurt me but I would have to say Jennie (Idlehunters) hurt the most.

  • KathiM
    KathiM Member Posts: 8,028 Member
    tanstaafl said:

    "GE"

    The tumors are genetically damaged to survive, spread and thrive to various degrees.  Life Extension historically referred to 3 antibody stains that are molecularly targetable, CA19-9, CSLEX1, and COX2.   CEA appears to be a rough surrogate for CSLEX1, largely unused outside of Japan.   I've noticed that most long term survivors tend to be missing or low on either CEA or CA19-9 for mCRC adenocarcinomas, a minority of the initial stage IV population.   Those missing the COX2 might be about 1/6 of the initial mCRC patients. 

    In our case, my wife was "blessed" with all three markers overexpressed in her surgical tissue samples as well as elevated CEA and CA19-9 biomarker levels in the blood.  So we treated those items per the literature.  So far, her tumor residues haven't overcome the mild tx.

     

    WOW! Thanks for the information!

    BTW, are you a researcher?  I would LOVE to read up on what is going on on the genetics/immunology side!  Do you have any 'recommended reading'?

     

    Thanks, Kathi

  • lp1964
    lp1964 Member Posts: 1,239 Member

    Sorry I didn't respond to

    Sorry I didn't respond to this post sooner. I have been just laying low with the posting. I think I am going through a mid life or maybe mid cancer crisis. Most of you know I am extremely active with mountain biking and kayaking. I have added sport atving to my activities and that has gotton addicted to powersports so now I am in the process of getting my motorcycle license and buying a sport bike (Crotch rocket). I am determined to ride a motorcycle to the hospital for my next MRI at the end of October. So I hope to have my license and bike within the next week. I have also become one of those crazy people who are doing the ketogenic diet. At first I though it was crazy but I have been researching it for over a year and feel it is worh a try.

    Anyway I got a little off subject. I still consider myself NED and I feel it is my duty/privilage to stay here to offer any help/advise that I can to others. After 8 years of fighting I hope I have some wothwile experience to share. I certainly understand people that leave here when they are NED. It is tempting sometimes. All of the bad news can be really hard to handle at times.

    All of the people that we have lost here hurt me but I would have to say Jennie (Idlehunters) hurt the most.

    Hey Biker,

    Even though I also realize and understand why people would want to leave this experience behind them, as I explained in a follow up post without you guys this board and the cancer world would be a very dark, hopeless place. So I myself greatly appreciate the dues you paid and keep paying as your conribution to this board.

    what bike are you gonna get?

    Laz

  • jen2012
    jen2012 Member Posts: 1,607 Member

    Sorry I didn't respond to

    Sorry I didn't respond to this post sooner. I have been just laying low with the posting. I think I am going through a mid life or maybe mid cancer crisis. Most of you know I am extremely active with mountain biking and kayaking. I have added sport atving to my activities and that has gotton addicted to powersports so now I am in the process of getting my motorcycle license and buying a sport bike (Crotch rocket). I am determined to ride a motorcycle to the hospital for my next MRI at the end of October. So I hope to have my license and bike within the next week. I have also become one of those crazy people who are doing the ketogenic diet. At first I though it was crazy but I have been researching it for over a year and feel it is worh a try.

    Anyway I got a little off subject. I still consider myself NED and I feel it is my duty/privilage to stay here to offer any help/advise that I can to others. After 8 years of fighting I hope I have some wothwile experience to share. I certainly understand people that leave here when they are NED. It is tempting sometimes. All of the bad news can be really hard to handle at times.

    All of the people that we have lost here hurt me but I would have to say Jennie (Idlehunters) hurt the most.

    yikes
    Jeff...stay safe on that bike! Would hate for something to happen to you after fighting so hard with cancer. My husband wants a Harley...ugh!

    You definitely bring a lot to the table here and like Laz I'm very grateful you stick around.

    Helmet right?
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    KathiM said:

    WOW! Thanks for the information!

    BTW, are you a researcher?  I would LOVE to read up on what is going on on the genetics/immunology side!  Do you have any 'recommended reading'?

     

    Thanks, Kathi

    thanks KM

    The Life Extension cancer articles and protocols are the best starting point, with their related references (click near the top) even from 10-15 years ago.    I think "ordinary bad CRC" research (not SRC, mucinous) is being milked and overworked - old technology can do the trick when started before too much desemination occurs.   Our big advantage: early, consistent, persistent application of the cheap stuff.

    Yeah, I'm kind of nerdish.

  • Happyhar
    Happyhar Member Posts: 49

    Maybe a more plesant word than taker is "receiver". Most of usl have received more Than we ever could give from all the amazing folks on here. I'm kinda embarassed that I left some time ago because I felt I had little to "give". I came back just today because I needed information. Selfish I guess when now I realize my doing well for several years could have provided hope and encouragement for others. Amazing how quick one can clear his conscience. Well, I'm back and INTEND to hang around more. Love to all.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    jen2012 said:

    yikes
    Jeff...stay safe on that bike! Would hate for something to happen to you after fighting so hard with cancer. My husband wants a Harley...ugh!

    You definitely bring a lot to the table here and like Laz I'm very grateful you stick around.

    Helmet right?

    Thanks Jen. Helmet, Boots,

    Thanks Jen. Helmet, Boots, jacket, gloves. I am taking no unessasary risks.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    Happyhar said:

    Maybe a more plesant word than taker is "receiver". Most of usl have received more Than we ever could give from all the amazing folks on here. I'm kinda embarassed that I left some time ago because I felt I had little to "give". I came back just today because I needed information. Selfish I guess when now I realize my doing well for several years could have provided hope and encouragement for others. Amazing how quick one can clear his conscience. Well, I'm back and INTEND to hang around more. Love to all.

    Dont feel selfish. We all

    Dont feel selfish. We all have to deal with cancer in our own way. I think we all have to put our survival first. And that is not selfish because we all have friends and family who love us and don't want to loose us.