mpbser wrote:I have been visiting this forum for about two years now. From what I have noticed, without paying all that much attention because we did not expect to be at this place in time with a recurrence and considering a pump, the majority of people here with Stage IV who have been NED for over five years have had a HAI pump. That was just an impression but now I really want to see if my impression was correct. So here are my questions:
1) For those who are NED over five years, can you please chime in so I can see your signatures?
2) If you had a HAI pump but it's not in your signature, please note that, thanks.
3) For good measure, can those who have been NED over two years (and still are currently) please do the same?
Thank you in advance. I will do a tally that I think will be helpful for everyone considering a pump.
mpbser wrote:What I found most interesting about this experiment was how many people seemed to do well with Avastin added on. No erbitux. One vectibix.
ginabeewell wrote:mpbser wrote:What I found most interesting about this experiment was how many people seemed to do well with Avastin added on. No erbitux. One vectibix.
Guessing that might just be a function of time and how long people have been NED? Vectibix and Erbitux are newer - and their better impact among some patients is even more recently known, I think. Looks like it was only approved for first line use with FOLFOX in May of 2014. So it would not quite have available for use in that way when the first set of NED for five years folks would have been getting started.
teacher2017 wrote:mpbser wrote:I have been visiting this forum for about two years now. From what I have noticed, without paying all that much attention because we did not expect to be at this place in time with a recurrence and considering a pump, the majority of people here with Stage IV who have been NED for over five years have had a HAI pump. That was just an impression but now I really want to see if my impression was correct. So here are my questions:
1) For those who are NED over five years, can you please chime in so I can see your signatures?
2) If you had a HAI pump but it's not in your signature, please note that, thanks.
3) For good measure, can those who have been NED over two years (and still are currently) please do the same?
Thank you in advance. I will do a tally that I think will be helpful for everyone considering a pump.
I’m sorry that I am not yet at the two year or five year mark as of yet. I choose not to get the pump after having one single met come up on a scan theee months after folfox ended after a successful colon resection. I was offered the pump but after much research decided against it. I read many stories of those who had issues with the pump and it severely damaged their duct which is irreplaceable. Some died waiting for liver transplants. It is an extreme apparatus to be put in and requires a big commitment too. People who get them are inoperable. I can’t imagine getting it in if I am operable. But it is a personal decision. I did not like the fact that there are not many hospitals using it. Some absolutely refuse. MSK has done their own study on their own patients- why not on all those with the pump? It’s bad enough to have the port to remind me that I am a cancer patient I don’t need that too. I think it’s drastic for one met. Too much to risk. If I become inoperable I’ll consider it. Not all survivors who had liver mets had a pump. Please don’t think everyone else without one is gone. Good luck with the decision.
mpbser wrote:
Gina,
It looks like you have been having a great response to your chemo. That's awesome! (I wonder why you held the Vectibix recently.) Good luck on Monday! Keep us posted!
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