PHP

Posted By
9/20/2012 1:00pm
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Replies: 17

I am at a choice point, and am considering having PHP.  I would very much appreciate it if any of you who have had this procedure would share with me:

Where you had it, what you thought of the facility, the doc, the team.

What was your experience--pain, discmfort, how long to recover

Outcome--how long your liver mets remained stable, reduced, grew

Thanks so much

Esther

margaretrogers57 - (9/23/2012 - 2:50pm)

Hey Esther,

 

I did some research on PHP and couldn't find anywhere in the us that is doing that at present.  Did you find somewhere.  Might be interested myself for Butch.  Sounds promising.  Right now we're investigating PD-1 a will  decide soon.  I feel like we're losing the battle right now.  Good luck to you, Margaret

edamaser - (9/23/2012 - 3:55pm)

Margaret,

Dr. Pingpank at Pittsburgh is doing it.  I just learned that they have the system at Ohio State University.  I'm certain there are other places (is Dr. Alexander still doing it in MD?).  Look on the Delcath site to see if you can find a list of places that bought/have the Delcath machine that is used in PHP.

Interestingly, I have not received a single response to my request for a contact from someone who has had PHP.  Has no one with OM had this procedure?

Everything seems such a crap shoot.

Good luck to you and Butch,

Esther

margaretrogers57 - (9/23/2012 - 6:52pm)

Thanks, Esther,  I did research delcath machine but couldn't get anywhere with it.  Do you know if Moffitt does it?  Margaret

margaretrogers57 - (9/23/2012 - 6:52pm)

Thanks, Esther,  I did research delcath machine but couldn't get anywhere with it.  Do you know if Moffitt does it?  Margaret

edamaser - (9/23/2012 - 9:36pm)

I'm pretty sure they do (Moffitt).  You can ask Dr. Weber when you see him.

Esther

ThatHomeschoolDad - (9/24/2012 - 9:01am)

Two of us posted your request on Ocu-Mel.  I didn't see any responses either.  I know there is a guy on the list (a physician himself, I think), who had three rounds of PHP with Pingpank.  He hasn't posted lately.   Pingpank seems to be going around the country to help establish IHP at other sites.  Perhaps PHP will follow a similar course.  I'd just contanct Pittsburgh and see what they say about alternate locations.

 

--Tom

Keep Rowing!

cpopp - (9/26/2012 - 12:22pm)

This article seems to indicate that chemoembolization is just as effective, safer, and less expensive.  Is chemoebolization not an option for you?

Connie

http://www.clinicaloncology.com/ViewArticle.aspx?d=Solid+Tumors&d_id=148&i=January+2012&i_id=808&a_id=20060

ThatHomeschoolDad - (9/26/2012 - 8:30pm)

The article does not seem to take into account the new Stage II filter Delcath just released this spring.  It removes more than 90% of the melphalan, thus lowering systemic toxicity.   I'd check with Pingpank on that one.  Having had IHP, I can see why the article mentioned that this might be better suited to younger patients.  I was 46 at the time and in ok shape, had IHP really kicked my ass.

 

--Tom

Keep Rowing!

edamaser - (9/29/2012 - 9:49pm)

Hi All,

Well I found out that PHP is not readily available.  Apparently it has not yet been approved by the FDA, and Delcath has removed its application for approval (don't know why).  The only source for it is Dr. Pingpank in Pittsburgh who has a special dispensation for compassionate use.

One person with OM who has had it, was kind enough to describe in depth his experiences.  It was not easy for him.  He had 3 rounds of it. 

I met with a liver surgeon who was able to clarify for me just how "bad" my liver really is.  The verdict is "not that bad."  Many of my liver lesions are stable, some are shrinking, and only a few are growing.  Even though one of the growing ones is pretty big now (6.1 cm), he explained to me that it is not growing into anything that would compromise the functioning of the liver (e.g. a major blood vessle, or the bile duct).  The liver is hugely redundant--we have far more liver tissue than we need to get along, thus no need for me to panic about some growth.  My LFTs are quite good, indicating that my liver is, at the moment doing just fine.

As a result, and with a better understanding of the PHP procedure, I have decided against it, at least at this time.  I plan to have immuno-embos, followed by another round of ipi (if the insurance gods will allow).

I am so relieved just to have decided on a plan.

I wish all of you relief from anxiety, and good scan results.

Esther

tommonoli - (9/29/2012 - 10:13pm)

Wishing you well with it Esther, it is good to have a direction and plan.

Dennis - (10/3/2012 - 2:34am)

Hi Esther,

I just wanted to let you know how glad I am to hear that your liver is in pretty good condition and you have a plan!

Wishing you the best,

-Dennis in CA

cgranger - (10/6/2012 - 12:01pm)

Hi Esther,

"Not so bad" and stable sounds pretty good.

Thinking of you, Carol

 

BTW, re the PHP: I'm sure you remember Bill Darker - he had a pretty rough time of it with 2 or 3 of those treatments.  And I'm pretty sure Delcath pulled it off the mkt for quite a while.  Good luck with your other plan...

edamaser - (10/3/2012 - 11:51am)

Thanks Dennis & others,

One of my docs just told me that Delcath has (re)submitted its machine/procedure to the FDA, and that approval is expected soon.  If this is true, and it really happens, then PHP will probably be available in a lot of places.  There are so many more options for us now than there were when I first started to drag myself down this road.

Esther

tommonoli - (10/3/2012 - 12:40pm)

:)  for you Esther.

 

 

Richard

lukecruz - (10/22/2012 - 7:17am)

It would be Nice if you provide some more information about PHP.

 

learn English

lak - (11/21/2012 - 2:05am)

I have known 2 people who had PHP in Southampton England. The same interventionist who did my SIRT is doing it.

 

One compared it to other treatments and said it was harder than SIRT ( I would say that about ablation too) . The other patient was having their first treatment.

 

Dr Stedman is the radiologist

www.bbc.co.uk/news/world-20270400

 

i will ask if one or both will post here.

 

Lesley

lak - (11/22/2012 - 2:13am)

Dr Nutting has just posted on Ocumel that he too is now doing PHP on compassionate use prior to FDA aproval.

 

Of Sky ridge medical center Co.

 

Lesley