Info/advice about HAI, Sir Spheres and Chemo Embolization?

[crazymotherof8]

I need some help with my research. I am looking for ANY experiences, advice, suggestions, research about any of the following options.
HAI pump, TACE/Chemo Embolization, or Sir Spheres. Matt's oncologist wants to discuss these 3 options at his next appointment. I would like to go in as prepared as possible so we can make a fully informed decision before proceeding. So far I have tried researching TACE and Sir Spheres online but have found conflicting information on their effectiveness and how much time they REALLY add to a persons life. If anyone has suggestions on research sites that are more trustworthy than others I would appreciate that information as well. Also suggestions on questions to ask the oncologist, potential surgeon, interventional radiologist, etc. would be great as well.

Matt has two large and many small liver tumors on both lobes but has been responding well to Folfox and now Xelox with Avastin. There are two spots on the lungs as well but oncologist believes we can move forward with one of the above options.

Thank you!
Niki

[eitter]

You need to go to the ACOR list serv or get a hold of Suzanne Lindley, in fact Suzanne is a keynote speaker at the Call on Congress this year, she is an expert on Sir Spheres and posts here every once inawhile! But the ACOR list serv run my Kate Murphy is a great place to go and right now at work I do not have the address to find them on the web, anyone here have it?! Gaelen MIGHT know some information on your list too.

[SkiFletch]

Gaelen also has first-hand experience with HAI pump and it worked very well for her. You can find a lot of that info by searching through some of the work done by Dr Kemeny at MSKCC. That should help you narrow things down a bit without reading too much info

[mom_2_3]

Niki,

A new video has been posted on MSK at http://www.mskcc.org/videos/treating-liver-metastases-hepatic-arterial-infusion-therapy.

It is a video of Dr. Kemeny explaining results of some studies concerning the HAI therapy. Like many here, I do have an HAI pump which was implanted during my liver resection for the purpose of preventing future liver metastasis. I have had the pump in for almost three years although I have not had chemo in it since November 2009.

I highly recommend my doctor and this treatment protocol. I looked at studies prior to my surgery and everything indicated a more positive outcome using this methodology. I can't count how many people I have met in the waiting room who have had this particular protocol and are doing well many years out from diagnosis, most with no evidence of disease. A number of those individuals had previously unresectable disease and were made operable with the HAI pump. If you have further questions about the treatment, please PM me. I am sure others here will also post with their experience.

All the best,
Amy

[Matthew]

Forgive me everyone, but how do you bring this up with the oncologist? We meet for next appt in about 2 weeks, and I really want to bring up liver treatment...

From what I've read it can make a considerable and significant difference. Also, she again (it's off and on) has had pain in the liver...I had stupidly hoped that the first FOLFIRI "carpetbombimg" will make a difference already but doc said today - come on - not that fast - and he said just to Percocat, which my wife hates...BUT - it seems to work...

So I was thinking about going to one (or two) "MAJOR UNIVERSITY" hospitals around here for the liver consult, unless oncologist refers...or is it too early? If figured a field trip to see one more guy can't hurt...

[livingbyfaith]

yes@discussthis.com message board for sir spheres

[gep]

Suzanne Lindley has stuff on her website, beatlivertumors.org especially about sir spheres. There may be some videos on there. I haven't been on there in a while.
I've been told that Dr. Salem at Northwestern in Chicago does a lot of these procedures. They don't seem to do many if any HAI pumps at NW per what my husband's oncologist has said. I don't know why that is the case.
As for how do you bring it up, you just ask the question, what about liver directed therapy? Would it be appropriate in this case? If not now, when might it be appropriate? That's what I would ask to get the conversation rolling.
Gloria

[Mona]

Niki,
since December 6, I am a new owner of Hai pump. Please PM me if you have specific questions.
Much love,
Maria

[crazymotherof8]

Thank you all so much for the information and willingness to let me contact you. I will be sending PM's shortly!

Another question I didn't ask:
How do you go about finding an experienced liver surgeon for the HAI pump or an experienced interventional radiologist for Sir Spheres or TACE?

Niki

[Mona]

People from this forum recommended liver surgeon who is working with Dr. K. Oncologist from MSKCC in NY, she is all about Hai Pump. This was easy choice; I knew he is from MSKCC, so he must be good. I really like him, he did great job.
Much love,
Maria