TACE /Chemo only once…. then CRBT ?
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I have had some good luck asking doctors via e-mail for any suggestions. It was hard to find out which cancer centers specialize in this, or if it is just is an advanced GI issue, but I did get thoughtful responses. I’ve even written to the contacts of a trial.
Dear Connie, thanks for clarifying some. I know what you mean about humorous incidents and we must keep a sense of humor. I sincerely wish for a good change to come your way and please do keep us updated.
Hi Lainy –
Thanks for your concern! I do have an excellent GI doctor and to date he has performed 12 ERCPs and replaced each time plastic stents without any issue. It is just at this stage he cannot assist any further because there is too much “sludge” in the biliary tree to be cleared by stents and to lower bilirubin levels. They also consulted interventional radiologists to see if they could clear out the area and they said they had no options to help.
Since diagnosis, we’ve also gotten 3 other second opinions besides my doctors here and NY Presbyterian, and at this point, none have been helpful and have just proven frustrating (time, money, disappointment).
As for the leakage from my ascites Pleurx drain, I will continue to pursue a route to stop or reduce it with the interventional radiologists who placed the drain. Currently, it’s very limiting to my ability to leave the house. I’ve had several humorous incidents in public in the last few weeks.
Dear Connie, I try so hard not to be negative on here but I have to say, what you are going through should NOT be happening and it sounds like your DOCs have given up! This is not acceptable and if you do not hear ASAP from NY Presb. I would immediately seek another hospital/doctor as there are many good ones not too far from you. My husband had many external tubes and they never leaked. Most important he also had many stents and once the stent is inserted the billie starts to clear up right away. That is if the stents were placed properly. PLEASE seek another opinion because what ever they are not doing is leading to more bad news! Sorry but I cannot be hush, hush about your situation. Have you been seeing a GI instead of an ONC? I am so wishing you the very best and hope everything starts turning around for you.
Hi Marion –
I’m sorry for the delay in responding. I was hospitalized because my stents are clogged and the GI doctors and Interventional Radiologists here cannot reduce my Bilirubin levels. As a result, I am accumulating ascites and had to have a catheter installed for drainage at home. unfortunately, the catheter site leaks all time!!! ugh
I have sent reports and scan updates to NY Presbyterian, but they do not have any suggestions so far. My doctors here have just recommended home health nurses and to select a hospice. My husband and I are still optimistic that things will reverse, but we also have to realistic.
I hope all is well with you! And thank you for all your help over the past year and half!
Thank you, Connie. So nice to hear from you and yes, your comments are very helpful. How are you coming along?
Hugs,
MarionHi – I’m not sure how helpful this will be, but here goes.
I had 4 treatments of TACE. The first was in May 2014 to one side of the liver, and then June 2014 to the other side of the liver. There was a month break. My results were very good and I tolerated the treatments well , and so, my interventional radiologist wanted to repeat the procedures. So, we repeated in August 2014 and September 2014. My last treatment in September, however, proved to be more than my liver could handle and I experienced infections and symptoms of acute liver failure which resolved in October.
I am not familiar with the acronym CBRT, so I cannot comment. I did also have radiation treatment to the bile duct area in April.
liverma88…..due to the fact that combined HCC/CCA occurs rarely, we have few patients reporting, but I hope that someone will come forward to share his/her thoughts with us. Most importantly though my fingers are crossed for a positive report heading your way in April. Please stay in touch – we are in this together.
Hugs,
MarionHi Judy,
Welcome to the board. I’m sorry I can’t answer about the TACE, but if you use the search function at the top of the forum, TACE should come back with many hits that may help you out.
My mother had SIRT (radioactive spheres) in conjunction with xeloda. She did have nausea for a few days and then fatigue for 6 week, but so far results seem to have made the procedure well worthwhile.
I did not see CBRT on homepage. Is it a variation of SBRT?
Treatment Options: http://cholangiocarcinoma.org/the-disea … t-options/
Good luck,
CatherineWow Judy, You’ve had a long haul starting with the Hepatitis C and then actually moving on to both liver cancer and bile duct cancer. The trifecta!!!…and not in a good way, huh?
As you probably already know, you’re in a good place at Mayo to be considered for liver transplant. There are several other places in the country who also do it and have excellent results.
I am a little confused…you said you had a resection in 2007 with no cancer?…..but the two tumors began in Nov of 2013. If there were no tumors in 2007, why did they do a resection? Did that have something to do with the Hep C.?
What have you been having for treatment other than the TACE?…..chemo at all? Do you know the type of your bile duct cancer?…..extrahepatic aka distal?
BTW…the weekends are usually pretty quiet on the discussion boards, …people usually post more and reply more during the week.
)) So, please do check back for responses to your posts.Julie T.
I started at the University in Chicago in 1997 Fall. It began with Hepc.
My two tumors began Nov 2013. Hepacelluar Carncinoma & Cholangiocarcinoma.
Did a resection 2007- No cancer. Currently at Mayo in Rochester, MN.Hi…and welcome to our boards. I’m not at all familiar with Tace that you mentioned, but others will be and will probably comment. I’m glad to hear that you are in the early stage of cancer and that you are working toward a transplant. Where are you being treated? Dr? ….if you don’t mind sharing that info.
I had adjuvant chemo and did lose almost all of my hair, contrary to what I was told. I resisted the urge to cut my hair because it came out very gradually….until about the 5th round, when it suddenly thinned so much it was very obvious and there was little I could do with it to hide the fact. It started growing back in very quickly and now is actually a little thicker than it was before the chemo.
))Julie T.
Has anyone ever had the TACE procedure with mitocymin and Adriamycin once, is that common? I had two RFA and just complete TACE- Feb 5 2015,
TACE was unpleasant for the first 10 days, day 18 my hair started to thin rapidly. Got the short hair cut for me, it wasn’t easy. After reading I could lose all my hair between the next 30 to 60 day, help me get more prepare. I know it not common to lose the hair. I need to complete my 8 week followup mid April, and then get the new verdict.
The next procedure if this fails could be CBRT.I hope the CBRT is more manageable. Any comments or experience you would share with me would be appreciated.
Currently I am very grateful for finding a dedicated group of people who can help me and my family thru this journey and medical challenge. I am in the early stage of liver cancer, and would like to be resolve so I could one day meet the criteria for a transplant.
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