February 17, 2013 at 11:58 pm #65511
Mark, thank you for the info on RFA. I will report back on what the UCLA radiologist recommends after we meet with him, hopefully soon!
Best of luck with your upcoming RFA!
JulieFebruary 17, 2013 at 4:50 pm #65512
I will see him in March after the next RFA.February 17, 2013 at 4:55 am #65514marionsModerator
Mark…ha, ha on the predicted response. Most likely I will meet up with Dr. Lenz at ASCO. Are you seeing him prior to May 31st?
MarionFebruary 17, 2013 at 4:40 am #65513
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.
MarkFebruary 17, 2013 at 3:15 am #65515pcl1029Member
thanks for letting me know.
But when you see Dr. Lenz, can you ask him in this way ” Is taking Xyloda at low dose as maintenance for 2 years (ie: 1000mg twice daily) a reasonable choice in extending the disease free period for CCA. so far no serious side effects except dry skin after 14 months of treatment.and the scan is clean so far.
The reason is that a few other cancers like breast cancer patient ,some of them are on Xyloda low dose for quite a long time. why not us? Dr. Lee at Washington State(the state above califonia) use low dose of xeloda for the breast cancers patients and as you may recall there is Dr. Brucker? in New York using 5-6 chemotherapy agents at low dose to treat CCA and getting results. As you know there are no standard regimen for CCA at this point.
Thanks in advance.
God blessFebruary 17, 2013 at 1:44 am #65516marionsModerator
Mark…Same here. While attending a meeting with the specialist at GI ASCO, I did not receive the response spoken by Dr. Sadeghi however; the look in their eyes said it all.
MarionFebruary 17, 2013 at 1:19 am #65517
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.
MarkFebruary 16, 2013 at 6:29 pm #65518
Mark, thank you for sharing your experience with me, I appreciate it very much. I understand your reluctance to share given we are all patients and not doctors, but for me, the information gives me more guidance for questions to ask the doctors and issues to explore with them. So thank you!
PCL, I appreciate your feedback on RFA and adjuvant therapy. I saw your also responded to my post in Introductions so I will combine my responses and do that in one post under that thread. Thanks!!February 16, 2013 at 7:31 am #65519pcl1029Member
First ,Mark, May I ask who are the oncologists you have asked about the “maintenance” chemotherapy and say no? and did they give you any reason why or why not? Thanks in advance for your help. Can you ask Dr. Lenz about “Xyloda maintenance” and see what he thinks. I Appreciated.
Julie, to have 2nd opinion by an interventional radiologist is a good idea;s/he can provide you the info. whether it is possible to do RFA or Microwave Ablation on the tumors base on its size,but more importantly whether the locations of the tumors allow the RFA procedure can be safely performed.
Therefore the location is the 1st concern and the sizes are the 2nd.
Sizes upto 3cm, no more than 3-4 tumors, are ideal for RFA or Microwave Ablation procedure. They simply just insert the “needles” and burn off the tumor inside the liver with a margin a bit bigger than the size of each tumor for a clean margin. Patient can go home the same day or may require a 24 hour observation only in the hospital. there are no pain, no nothing with regard to side effects.
There are a few recent articles indicated the possibility of better outcome if adjuvant therapy done after liver resection as compare to medical articles a few years ago of the uncertainty and possible benefit of using adjuvant chemotherapy and/or chemo-radiation combination after CCA resection and surgery. (RFA is not resection,it is simply a palliative procedure and not a cure. and it does not required adjuvant therapy to follow after RFA treatment; chemoembolization is another palliative procedure for tumor>5cm that RFA cannot fully provide the benefit because of the large size of the tumor.)
God bless.February 15, 2013 at 7:40 pm #65520
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.
MarkFebruary 15, 2013 at 6:19 pm #65521
Bob & Nancy, Mark,
Thank you SO much for the wonderful advice and guidance. The info you provided is invaluable. We have just been relying on the advice of the oncologist Dr. Finn at UCLA but I am definitely going to reach out to the doctors at USC for second opinions.
Currently, Dr. Finn suggested that my Dad do some form of ablation (we are going to meet with a radiologist to discuss) on the two lesions given they are relatively small in size (~1cm each), but he also said that if the ablation is successful then he would not recommend chemo b/c there would be nothing to track the progress of the disease once the tumors are gone. I know there is controversy on whether adjuvant/maintenance chemo works so I’d be eager to hear what the USC doctors have to say. I’d also welcome your advice based on your experiences (with the understanding of course that each person’s situation is different).
Again, thank you for your help, and my best best wishes for Jeff and Mark’s treatments!!
JulieFebruary 15, 2013 at 3:33 pm #65523
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.
MarkFebruary 15, 2013 at 8:30 am #65524jeffsmomdadMember
We would just echo what Mark said. In fact, Mark provided us with information about USC and Dr. Rick Selby. We share Mark’s view that USC, in general, took a more aggressive approach to surgery.
Our ONC is at UCLA (Dr. Sadeghi). We have had a good experience with both Dr. Sadeghi and his office staff. Our son has been treated at UCLA for years for unrelated urological issues and extensive urological surgery. It was through that connection that we were referred upstairs to Dr. Sammy Saab and then to Dr. Busuttil. Both liver surgeons were very nice and as Mark advised, they are world renown. In our son’s case, they declined surgery. We took Mark’s advice and consulted with Dr. Selby at USC. He was wonderful and did proceed with surgery.
As you know, this is a very aggressive disease. This is certainly true with our son’s situation. In the relatively sort period of time between the initial diagnosis, diagnostic testing and actual performatnce of the surgery, the disease had spread to the point where the liver resection could not be completed, so the surgery was terminated without the resection. We went from hope and elation to disappointment.
However, most importantly, Dr. Selby at USC gave our son the best chance of becomming disease free by agreeing to attempt the surgery. We are very grateful to Dr. Selby who attempted the surgery when others would not.
We did not change our ONC to USC. We were and are happy with Dr. Sadeghi at UCLA. However since our son’s treatment options now appear to be limited to chemo, we are probably going to look for additional opinions, starting with USC.
As Mark said, you are very lucky to live in an area where we have not one, but two wonderful medical institutions with expertise in the treatment of cholangiocarcinoma.
Good Luck and God Bless You, your family and especially your father.
Bob & Nancy
(Jeff’s Mom & Dad)February 15, 2013 at 2:29 am #65522
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.
MarkFebruary 14, 2013 at 7:02 pm #65525
Marion and Mark – thanks so much for the info!
Mark – I’m sorry to hear of your recurrence, I hope you are receiving good treatment and my best wishes to you!! If you don’t mind sharing, what doctors did you consult with at UCLA and USC? My Dad’s oncologist at UCLA is currently Dr. Richard Finn, and the surgeon for his resection last year was Dr. Busuttil. Dr. Finn has suggested starting with RFA for my Dad’s recurrent tumors (both ~1cm) but I would like to get second opinions so will reach out to USC. If there are doctors there you have had good experiences with, I’d love to know.
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