mparsons
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Percy, will do.
Marion, that’s funny. If Dr. Lenz disagrees, as I think he will, I expect an even more “colorful” verbal response than Sadeghi’s, along with an exaggerated roll of the eyes. He doesn’t have trouble expressing his feelings about things.
Mark
Hi Percy,
I asked Dr. Sadeghi at UCLA directly about maintenance Xeloda. He said, “That’s crazy.” I will see Dr. Lenz after I finish these local procedures. I’ll ask about it, and let you know.
By the way, Julie, Dr. Katz does RFA under a general, CT guided, with a required overnight stay. He used to do them the more traditional way, lightly sedated on an intertentional radiology table, but he thinks he gets more consistent results this way. I know some other centers do this under a general as well, but I’m not sure about UCLA.
Mark
Julie,
I’m glad you said outright that you realize each person’s situation is different. It makes me feel a little more comfortable to share mine with you.
Yes indeed, you are in the heart of the controversy with this disease. Without a lot of data showing the effectiveness of adjuvant therapies, there are all sorts of opinions. Some varies by country…some do radiation, some do chemotherapy, and in the U.S. many oncologists do both, but that varies too. After my surgeries, Sadeghi indicated he’d do chemo-radiation only, meaning radiation with oral Xeloda. Dr. Lenz’ plan included “the works” — a six-month plan that started with systemic chemo (Gemzar), chemo-radiation, then several rounds Gemzar again. In my situation — I had a microscopically positive margin and lymph node involvement — there is data to suggest that adjuvant therapy is effective.
We have at least one person on this board that I know of that receives “maintenance” Xeloda. He has been tumor free for some time. A couple of my doctors who are NOT oncologists like the sound of it. Why not, is their response. However, most oncologists won’t do it. I asked. Nope.
Mark
Hi Willow,
My understanding is that if there is a blockage or stricture, bile will back up, dilating or enlarging the duct behind the stricture. So before my surgeries, when my ducts were blocked by a Klatskin tumor, they were very dilated on CT. Now they appear more “normal.” So, I was trying to understand what Susan meant by “fully dilated.”
Take care, Mark
Bob and Nancy,
Yay! I’m so glad to hear from you. I hope that Jeff is doing okay with treatment. You might want to see Dr. Lenz at USC. Selby referred me after my surgeries. He put me on aggressive chemo-radiation. To be thorough, I went back and got a second opinion from Sadeghi, who had been my palliative care doctor before I had surgeries. He admitted he would have only done about half of what Lenz did. Lenz is aggressive.
So, Julie, you’ve heard a couple of our experiences. And, yes, more directly, Dr. Selby did 22 hours of surgery on me when UCLA said no…and saved my life.
Mark
Hi Julie,
Thank you for your good wishes. I saw Sammy Saab at Pfleger, and Dr. Sadeghi in oncology. Dr. Busittil, as you know, is an exceedingly highly regarded hepatobiliary surgeon, who has already done a successful resection on your father. So, I assume that you are not looking for a second surgical opinion.
For my three new tumors, two of which are larger than your father’s, my surgeon also recommended rfa. I’ve had one procedure for the largest tumor, and another scheduled for the other two. Many on this site have had successful rfa procedures, and on a 1 cm tumor it should be very successful. So, again, speaking only as a patient, that plan makes sense to me.
That said, at USC Dr. Lenz is my oncologist and is excellent with this disease. Dr. Michael Katz is doing the procedures.
Again, all my best to you and your father.
Mark
Hi Julie,
You’ll see my name pop up in those threads Marion posted. Keep in mind this is the experience of one patient, but for both surgery and adjuvant chemoradiation I consulted with UCLA and USC. In both cases, USC was far more aggressive with their treatment plans. I now have a recurrence, not unusual for this disease, but USC gave me “disease-free” time I would not otherwise have had.
If you’re in SoCal, you’re lucky to have two academic centers very familiar with this disease. Get opinions from both.
All the best to you.
Mark
Hi Susan,
You mentioned that your mom’s bile duct is fully dilated. That would usually be a sign of a stricture, which can lead to indigestion due to a lack of bile in the bowel. You may mean something else. Anyway, if it is a stricture Creon can make sense. I do not have a stricture — i.e., I am not dilated — but do have biliary damage from chemo-radiation. I had terrible indigestion, gas, etc. My oncologist, Dr. Lenz at USC, has me on Creon with each meal and a daily probiotic. It has really helped!
Just my own experience, if it helps. I hope your mom feels better soon.
Mark
Thank you for your kind words Lainy.
Percy, interesting that we apparently had lesions in a similar spot. I am 53 and in otherwise very good health. At this point, I guess I’m trusting Dr. Selby’s judgment in wanting to explore these options first. In first viewing the imaging with me, he pondered for a long time about accessibility by IR and/or GI procedure, which is why he consulted with them before getting back to me. They “think” they can do it (it’s the “think” part that bugs the hell out of my wife…and me a bit too). I will certainly talk to each physician before they do the procedure, making it clear that I want to tend toward caution since resection is a possibility. Thank you as always, Percy, for sharing your experience and expertise…and helping me to be all the more cautious!
Best, Mark
Hi all:
I’m moving forward with the new normal – treating this as a chronic disease, as Marion says. Or, as Lainy’s Teddy always said, now we know what it is, so let’s fix it.
Further study of a follow-up MRI by Dr. Selby’s team revealed a second lesion in the caudate lobe. So, he’s taking a two-pronged approach over the next couple of weeks. They will do a percutaneous RFA procedure on the “original” lesion on right lobe of the remnant liver. It is posterior near the spine and high near the diaphragm, so in a tricky spot. For the caudate lobe lesion they will attempt an endoscopic procedure to do an ethanol injection (ablation). If any of this fails, Dr. Selby will do an open abdominal surgery so he can flip the liver over for access; obviously that’s what we’re trying to avoid.
As far as adjuvant therapy, my oncologist thinks my liver can’t withstand chemo, my hepatologist does…but that’s next month’s battle!
As always, thank you for your continuing thoughts and prayers. Jeannemarie and I are grateful to all of you.
Mark
Lisa,
You will certainly be in my thoughts and prayers. You’ve beaten down these “pesky tumors” before, and I know you’re going to do it again. You’re faith and strength is an inspiration to me!
Mark
Lisa,
Thank you. I appreciate your message. I’m sure that your multiple recurrences have not been easy. But, it is helpful to know that you have been fairly successful in treating these post-resection tumors. My surgeon had told us after my second resection that it was likely that we’d eventually be dealing with these sorts of isolated occurences. So we really were sort of prepared for it.
We’ll pray that you have successful treatment.
Best, Mark
Thank you for your responses. Christmas (and my birthday) were good, spent with our wonderful boys and Jeannemarie’s family. Happily, I look a lot pinker in the holiday photos compared to last year when I was sporting a yellow tan. Tomorrow we fly to Bend, Oregon to spend time with my family.
Thanks Percy for your note and the tremendous expertise you share with us. I am seeing Dr. Selby on January 7 to explore my options. I’m hoping RFA might be possible. He has an interventional radiologist on his team that is quite experienced with those procedures.
Thanks Bob and Nancy for your heartfelt note. I sent you a forum email that I hope you received. We continue to think of you daily, and hope that Jeff felt well enough to enjoy the holiday.
Best, Mark
Dear Dina,
I’m so sorry to hear about this. Obviously we are not medical professionals, but I agree with Lainy. With this sharp increase in pain, distended stomach, and severe constipation, I’d take her to the hospital. Given her symptoms, they might do a complete GI work up to rule out anything like an obstruction or pancreatitis. At the very least it seems like she needs to be evaluated.
I hope they can get her feeling better. Please keep us posted.
Mark
