Do NED patients tend to leave the forum?

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.

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

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.

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.

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.

 

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

janderson1964 said:

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.

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.

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 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.