Another NED question: PUMP v. NO PUMP?

[mpbser]

radnyc,

I wish I had greater #s. Your story was one that got my attention in the first place to seriously consider the pump, btw. I copied & pasted your signature a couple months ago with a few others to show my husband. I had had the impression that the majority of people here who are long term NED had pumps but I have since learned that that is not true.

Raw data copied from excel (a few of these people are from facebook, everyone else is here):

NAME SYSTEMIC TREATMENT YEARS NED PUMP?

tater folfox & avastin 2 no
njf 2 no
pyro avastin & folfiri 2 no
lpl folfox b4 & after surgery 2 no

BM folfox & avastin 3 no
mattie xeloda & avastin. SBRT on mets 3 no
mariane folfirinox 3 yes
mymom folfiri 3.5 yes

e_enyedy folfox & avastin, now xeloda & avastin 4 no
wonderfullymade folfiri & vectibix 4 no
dbf folfox 4 no
stu 73% of liver removed 4 no
gfpiv folfiri 4 yes

LeonW xelox & avastin 5 no
Rob in PA folfiri & avastin & SBRT & VATS 5 no
rp1954 xeolda & vitamin C, etc 5 no

kiwiinoz folfox 6 no
ehut folfoxiri 6 no
badass folfiri 6 yes
jack&katiesmommy folfiri 6 yes

MB folfox & avastin 7 no
nedplease folfox, then xeloda 7 no
cecioboe not sure 7 no
juliej xelox & avastin 7 yes

dianetavegia folfox 8 no
radNYC folfiri 8.5 yes

NN1 folfiri 9 yes
ranger folfox & avastin 9 no

russian27 folfox & avastin 10 no
MAS Stacy 10 yes

NN2 folifiri 11 yes
string "4 surgeries and 24 treatments" 11 no

betsydoglover xelox & avastin 13 no

cptmac iri 15 yes

HD 5-FU & folic acid 19 no

[mpbser]

Even though the anecdotal data is not what I originally thought, I still think that the pump is the way to go for my husband. This is because it is a recurrence and his original/first line treatment was not aggressive (no mop-up chemo). I think the pump will do an extremely good job on his liver and, if all goes well (e.g. no need to halt b/c of complications), it will clear it out of any micromets that could have been developing for the past year+ since his liver surgery.

[Milk Tea]

mpbser,

I just want to let you know as a fellow wife supports husband on this journey, I admire you. I read many of your posts and you inspired me to post our story. The level of study and research you have done to help your husband make the best decision really touches my heart. And your posts also help others on this board learn and gain more knowledge. Thank you.

[mpbser]

Thanks for the encouragement, Milk Tea. Sometimes I feel overwhelmed but my love for my husband somehow gets me through those rough patches.

I plan on doing a final look around on the forum for NED data and will update the tally by the end of the weekend. Even though we have basically decided to go with the pump, I want the very unscientific test of my hypothesis to have as large a data set as possible.

[boxhill]

I think you should look into Colontown also, where there are subgroups dedicated to Stage 4, liver issues, the HAI pump, trials for MSS or MSI-H, and more. It is a very supportive and well-informed group.

[mpbser]

Yeah, asked there but only got a few replies. Those I referred to as "a few of these people are from facebook."

[Jack&KatiesMommy]

I think something to remember is that a lot of the people who had pumps were people who were not resectable initially. Many of these patients were the harder cases that were told that surgery wasn't an option and that they would be on chemo for life. So many of these people (like me) would not be here but for the pump. That is a different subset of people than everyone that had liver metastasis and has survived for 5 years.

Cynthia

[mpbser]

What I found most interesting about this experiment was how many people seemed to do well with Avastin added on. No erbitux. One vectibix.

[teacher2017]

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.

[ginabeewell]

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.

[mpbser]

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.

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!

[mpbser]

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.

[mpbser]

I should add that IF it turns out that his one liver met has shrunk and no new mets are discovered when he has his MRI and Chest CT on February 25th, then a serious reconsideration of the pump will be warranted. If all the supplements, exercise, and diet modification (not the best diet but he's making strides) have had an impact without chemo, I can imagine a complete response to systemic chemo adjuvant liver resection (his 2nd) followed by some maintenance chemo or maintenance supplements/extreme careful lifestyle changes.

[ginabeewell]

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!

My oncologist was worried that Vectibix may have put me "over the top" and caused the typhlitis. So I skipped it my first round back to chemo after my break. But Dr Kemeny disagreed, and Dr Stein also wanted to return to it, since my overall response has been so good. So I've had it these past two cycles again, and my rash is on its way back...and my fingernails are coming up off my thumbs. The side effects of Vectibix are worse than any of the other drugs for me, but as I tell my kids, "the rash means it's working!"

[NedPlease]

Over seven years NED (11/11) and no pump, although I did consult w Kemeny regarding it.

Best,
N