I jut registered personalisedtranslationaloncology.com

Annabelle41415

PhillieG said:

Hmmm...Here we are, again. We

Hmmm...Here we are, again. We have members who tried various treatments and achieved similar  (but not exact) results. John's had no recurrences since having surgery to remove his cancer and then went on TCM. Ann and others (I don't mean to single you out Ann but you've been asking for it  ) had surgery, then chemo with no recurrence. Pete, you're in a class by yourself! I mean that in a nice way but you've done multiple therapies and are achieving positive results. I think that tenacity certainly helped! I've been living with cancer for over 9 years after having surgery, then doing chemo, then doing chemo-lite. I had radiation a month ago and may have gotten rid of the remaining spot of cancer. I won't declare myself NED, if things go well I'll be CIDSTHACIMATT (currently I don't seem to have any cancer inside me at this time).

My CEA never rose above 8.4 yet when I was DX my first Onc gave me no chance and no hope for survival. I don't know why I am still here other than some people do better than others. As it's been pointed out before, even if a person only had surgery, a percentage of them would survive regardless of what they did post-op.

So have Ann, John, you Pete, myself, and others just been lucky? Maybe...maybe not.

Two weeks ago I met with my Onc to discuss what's next. That day I asked about a woman who I'd see there on a regular basis but hadn't seen in about 2 months. The last time I saw her she had taken a turn for the worse after responding very well to treatment. I asked someone if they knew what happened to so-and-so. I found out that she passed away about a month ago. Why?

The same day I met a guy from Florida who's been under the care of the same Onc as I have. He was dx'd 10 years ago and has been totally clear for over 4 years. He did surgery, chemo, and HAI pump therapy (similar to what I've done). Why?

I've met people who are over 10 years out and over 5 years NED. I've also known 3 people from Sloan die since Christmas. My Onc often refers to me as one of her top successful unusual cases since I've lived a very manageable life while undergoing treatment. Is my survival, when given the usual "6 months or less to live" speech spectacular and unique? I don't know...It is what it is. I'm very happy with my results and seriously doubt I'd do anything differently even if that was possible.

I just find that cancer is as unique as we are and that no one really knows if what they did is why they're still here. We all may believe that is why, but like many things of this complexity no one knows with 100% certainty...
I do wish everyone continued success and I also hope that this discussion shows others that there are many ways of approaching treatment but NONE come with any guarantee. THAT I'm 100% certain of.

 -phil

Phil and Pete Thank You

Thanks for keeping us grounded in a lot of things that have been on the board.  You always have good advice and life experiences that we can all benefit from.  Love all your pictures too.  Pete thank you for all your research that you have done, you have gone to great lenghts to document all that you have done.  Wishing only the best for you.

Kim

PhillieG

renw said:

If you are an active csn

If you are an active csn member for more than 3 years, then you are a rarity. If more than 5 years, then you are unique.

As to why, well I think its a combiation of the specific mutation and the ability of your immue system to deal with it. Choice of treatments probably have something to do with it as well, but ultimatelly remission or no, most likely comes down to your immune system.

I'm 9 yr with DX...

,,,and joined CSN in May, 2005. I won't even ask what that makes me. I don't want to leave the party, I'm the guest that won't leave! 

Do you remember The Juice Chicks Ren? 2Bhealed and Scouty. One was stage III and the other stage IV. The both had surgery but afterwards made pretty major dietary changes and have been clear for many years. Believe it or not, this forum wasn't so Alternative Therapy Friendly. Yes, hard to imagine...

They were on the forum for many years and had great success with their path. Like the current CAM/ALT/TCM vs TWM (Traditional Western Medicine) "discussion", the topic wasn't always well received. They are both doing great. NED for many years!

There are very many people who beat this then leave the forum. They pop in here and there but over the years I've seen a lot of folks who do not want to be reminded of their battle with cancer. They leave and don't look back. 

It's yet another personal choice.

Then there are those who don't do as well. Go figure...

It's a hell of a complex disease.

Sundanceh

Chelsea71 said:

Actually, I think I remember
Actually, I think I remember Craig saying he has been clear for almost three years.

Current Clear Streak @.....

24 months in June!

9 years out of dx in June too!

We'll finally talk about it in a couple of weeks when I officially roll over...

Phil64

PhillieG said:

Hmmm...Here we are, again. We

Hmmm...Here we are, again. We have members who tried various treatments and achieved similar  (but not exact) results. John's had no recurrences since having surgery to remove his cancer and then went on TCM. Ann and others (I don't mean to single you out Ann but you've been asking for it  ) had surgery, then chemo with no recurrence. Pete, you're in a class by yourself! I mean that in a nice way but you've done multiple therapies and are achieving positive results. I think that tenacity certainly helped! I've been living with cancer for over 9 years after having surgery, then doing chemo, then doing chemo-lite. I had radiation a month ago and may have gotten rid of the remaining spot of cancer. I won't declare myself NED, if things go well I'll be CIDSTHACIMATT (currently I don't seem to have any cancer inside me at this time).

My CEA never rose above 8.4 yet when I was DX my first Onc gave me no chance and no hope for survival. I don't know why I am still here other than some people do better than others. As it's been pointed out before, even if a person only had surgery, a percentage of them would survive regardless of what they did post-op.

So have Ann, John, you Pete, myself, and others just been lucky? Maybe...maybe not.

Two weeks ago I met with my Onc to discuss what's next. That day I asked about a woman who I'd see there on a regular basis but hadn't seen in about 2 months. The last time I saw her she had taken a turn for the worse after responding very well to treatment. I asked someone if they knew what happened to so-and-so. I found out that she passed away about a month ago. Why?

The same day I met a guy from Florida who's been under the care of the same Onc as I have. He was dx'd 10 years ago and has been totally clear for over 4 years. He did surgery, chemo, and HAI pump therapy (similar to what I've done). Why?

I've met people who are over 10 years out and over 5 years NED. I've also known 3 people from Sloan die since Christmas. My Onc often refers to me as one of her top successful unusual cases since I've lived a very manageable life while undergoing treatment. Is my survival, when given the usual "6 months or less to live" speech spectacular and unique? I don't know...It is what it is. I'm very happy with my results and seriously doubt I'd do anything differently even if that was possible.

I just find that cancer is as unique as we are and that no one really knows if what they did is why they're still here. We all may believe that is why, but like many things of this complexity no one knows with 100% certainty...
I do wish everyone continued success and I also hope that this discussion shows others that there are many ways of approaching treatment but NONE come with any guarantee. THAT I'm 100% certain of.

 -phil

Thank you for the post!

Thanks for a great post on this topic. 

 

Another Phil says "Here, here!"

 

:-)

pete43lost_at_sea

Phil64 said:

Thank you for the post!

Thanks for a great post on this topic. 

 

Another Phil says "Here, here!"

 

:-)

thanks mags ann john phil phil ren annabelle and everyone

 

Alternative Therapy Friendly. Yes, hard to imagine...  

I used to long for the good old days, now I am just happy for today, after all thats all we got.......................

 

our disease is as complex as our personalities, we are so different look at our faces, to think our cells somehow all respond the same way is just to simple.

I have my pet scan another 9 hours, I better get to sleep. it will be what it will. whatever it is, we got plenty of tricks up our sleeves.

hugs,

Pete

janie1

pete43lost_at_sea said:

thanks mags ann john phil phil ren annabelle and everyone

 

Alternative Therapy Friendly. Yes, hard to imagine...  

I used to long for the good old days, now I am just happy for today, after all thats all we got.......................

 

our disease is as complex as our personalities, we are so different look at our faces, to think our cells somehow all respond the same way is just to simple.

I have my pet scan another 9 hours, I better get to sleep. it will be what it will. whatever it is, we got plenty of tricks up our sleeves.

hugs,

Pete

Mags UK  -  thank you for

Mags UK  -  thank you for your most thoughtful (intelligent ) reply......I'm referring to...."to take any form of stability lightly and to use it to settle old scores is questionable".

Thank you so much for that.  I guess I am hypersensitive, but when I see people FIGHTING FOR THEIR LIVES get treated with ANY amount of disrespect, it makes me furious.

You really "get it".....so thank you, thank you.  I, too, now just read, because I am interested in research, and there are a few who are really good at it.  I am glad they still take their time

to post here (they surely wouldn't have to), because if they can help just ONE person, then that is indeed heroic, in my book, at least.  Helping people with side effects is wonderful, but 

helping even one person extend their life, to where there may be a cure someday.....well, again, i can only come up with "Hero". 

 

Pete - good luck on the scan.  But you are right, there are still things to do, if needed.

 

tootsie1

Good luck!

Pete,

Good luck with the new website!

 

*hugs*

Gail