mpbser wrote: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.
There is so much inflammatory information in your comment, I must address it point by point:
1) Yes, there is an approximate 5% chance of bile duct damage with the HAI pump. I don't think it's fair to just state "many stories" of severe bile duct damage without quantification.
2) Yes, some died waiting for liver transplants, but that actually is quite RARE. We know of a few of those cases, out of the ~2000 or so HAI pump implantations that have been done in the past 10 or so years.
3) "People who get them are inoperable." This simply is an inaccurate statement. Yes, a majority of people who get HAI pumps get them because they want/need them to get them to resectability. But a majority does not account for all "people who get them."
4) "I did not like the fact that there are not many hospitals using it." The fact that few hospitals using it does not reflect upon the efficacy or risks of the treatment. Research on the subject shows that other variables play into this.
5) "MSK has done their own study on their own patients- why not on all those with the pump?" A meta-analysis might be useful, if variables can be controlled sufficiently for a reliable outcome. However, the fact that MSK studies its own patients again does not reflect upon the efficacy or risks of the treatment. Medical institutions study their own patients simply because they A) don't have the means or legal right to study other institutions' patients and B) relative to A, scientific studies require controls.
6) A comment such as "Too much to risk" "drastic for one met" should be backed up with data. Since I have provided some in #1 above, people now have some relevant data.
For my husband, it is too much to risk that he will not be curable/cured without it given his particular factors: new met within a year, no mop up chemo had been done after his liver surgery, and micromets must be lingering or else this recurrence would not have happened.
Statements that are indisputable are those of opinion:
7) "I can’t imagine getting it in if I am operable. But it is a personal decision." Yes, it's a personal decision. Very subjective.
8 ) "[It] requires a big commitment." Correct but just how "big" depends on the individual and their willingness to accept the commitment. Very subjective.
Th am you for your comments. Those were MY reasons for not getting the pump. I object to the word “inflammatory.” Seems you have this all figured out. Good luck. On your side no matter what.