Need advice

Kasia,

I would be happy to talk with you anytime! I believe I spoke with Jack the other day, I will be emailing him some more information soon. I will email you from the discussion board so we can connect as well. Take care!

Melinda

Kasia,

It sounds like Jack has settled on a sound plan of treatment, based on a lot of research and consultation. It is good you are seeking other surgical opinions to be sure that base is fully covered.

You mentioned a 27 percent efficacy rate for the chemo. Statistics have to be considered with a grain of salt with this cancer since it is so rare. Most studies are either small in size of patients and hard to generalize from, or they are larger because they include a wide variety of patients many of whom may be more advanced or have a different site for the cancer.

In Jack’s case, his cancer is confined to his liver and one purpose of the chemo is to downsize to surgery. I could not find any large studies for this group, but if you search “neoadjuvant” or “downstaging” plus “chemotherapy,” there is some material (small studies or single case reports) and much of it suggests to me that odds may be somewhat better than 27 percent. It is also useful to see that today other therapies can also work to get a patient to surgery, e.g., radiation. In any case, don’t get too wrapped up in the numbers, you are doing everything you can to get the best care and that is what counts.

So fingers crossed that the chemo does its job for Jack.

Regards, Mary

Dear Kasia,

Welcome! Wow, I love the information you gathered here since yesterday. This board is a great source of information! Please keep us posted on your brother’s decision with treatment. The only question I would pose to the physicians for the HAI pump is will it disqualify you from any future treatments or trials? Hoping to hear from members who have personal experience with it.

All my best,
Melinda

This is him.

http://www.surgery.usc.edu/hepatobiliary/facultyandstaff-parekh_dilip.html

To Kasia:

I am in Southern California and Dr. Fung came highly recommended from a doctor we had a consultation with from Sloan-Kettering in New York – he’s at City of Hope, I believe.

Unfortunately, neither my insurance, nor my husband’s cover City of Hope.

We were told upon diagnosis that the tumor is inoperable – but both a USC and Kaiser surgeon said it is absolutely operable. USC surgeon tried in July and wasn’t successful – wants the tumor shrunk more before he attempts again but said he’d “like another crack at it” – that surgeon told me that Kaiser wouldn’t operate – but when we switched over to my insurance (Kaiser) the liver surgeon told us she’d absolutely do surgery. So it depends on the doctor and medical system – why medicine is an “art” and not a science.

Fortunately, husband’s tumor hasn’t spread. He’s on his second set of stents, installed over this past weekend.

He’s going to start chemo on Monday and then a round of proton therapy at Loma Linda after two cycles, back on the chemo and hopefully by then the tumor will have shrunk enough for the surgeon to remove it.

Yes, it’s been up and down, up and down – from extreme highs to extreme lows.

Hang in there!

Kasia,

You have to treat the cancer however you need to treat the cancer right now but if it was me, given that it’s in a single location, I would continuously reach out to surgeons across the county. Two opinions may seem like confirmation, but it’s not.

Surgery is not simple 2+2=4 math where everyone agrees what the answer is. From what I’ve seen it’s a mixture of art, confidence, experience, and sometimes just some balls.

The surgical oncology department at the Anschutz center in Denver was definitive and emphatic that my mother’s tumor was not operable, to the point of basically daring me to have someone else doublecheck their work and say otherwise. I sent the exact same information to USC in LA and they said “we can totally remove that tumor.”

Same information, two completely different takes in opposite directions, both of which were definitive. It’s maddening, but you only have this option before it spreads, after that surgery is most likely out.

Kaia,

In some patients, the Gem/Cis does shrink tumors enough for surgery to be possible. That was the case with my husband after five cycles.

I am not familiar with the HAI pump, although I have read of success with that.

In my opinion, it is critical to be treated by a specialty center with a lot of experience with CC. I think the Moffit center is the most renowned for CC of the two centers you referenced. Perhaps you could ask the Moffitt team about the option of HAI, and their recommendation for the best of the two treatment modalities.

Debbie