Where to start?
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I have received news that biopsy result from the second procedure is negative again (brushings from ECRP. Also negative for immune disease. The readings from all scans point to CC with the tumor encapsulating hepatic artery and narrowing the portal vein. We really need to get a good biopsy but I am concerned that piercing the tumor from the skin could release cells into other areas of the body. Has anyone else had difficulty getting sufficient biopsy results?
Great to hear of the improvement, dear Dave, and I wish for the upward trend to continue. Perhaps tomorrow will prove the additional stent does what is is intended to do by reducing the bilirubin count to an acceptable level.
Second opinions have become standard of care; you are making a wise decision to consult with a center treating a high volume of cholangiocarcinoma patients.
Hope you have a good night and for tomorrow to bring good news your way.
Hugs,
MarionDave, YEA for heading to MSK! That is great news as when one gets enough opinions to satisfy themselves they never look back and use the words should have could have. If you feel you get more nutrition in you just ask them for some nutrition shakes. Can’t wait to hear what MSK says.
Hello all, Just an update….I have definitely felt an improvement but we’re just not sure it’s as dramatic as it should be. I ate a decent breakfast this morning but some of the recent nausea was still there and I really had to force myself to eat dinner tonight. In addition, there is still some itching but my color especially in my lower extremities seem to be coming back to normal. The doctors want to see one more lab to make sure we’re trending in the right direction. It’s still possible I could leave here tomorrow with a PCT collector, not desirable but I’ll do what I need to do.
We’ve also decided to head to Sloan-Kettering in New York for another opinion. Hoping for the best!
Dave
Dave, just want to welcome you to our group and let you know I am glad the doctor was able to get three stents in place. Hopefully, you are experiencing good symptom relief.
Debbie
Dave….thanks for the reply. Fingers are crossed for the additional stent to do it’s job and allowing for more comfort.
Also hoping for a good biopsy result so that you can avoid the next attempt. Have you and your physician discussed molecular testing for identification of a molecular alteration for which a targeted drug is undergoing investigational studies?
Wishing you a good night.
Hugs,
MarionSorry Marion, I didn’t answer your question. Yes, we have had the ERCP and CT and imaging is consistent with CC.
Hello everyone, a bit of an update…I went back to my original Endoscopy physician at MUSC as I felt he wanted another crack at the stents (and I like him and feel comfortable with his confidence). We drove up from Savannah. A CT scan was perform and he saw a significant blockage remaining. Based on the imaging that we received,, the left lobe of my liver is atrophied and not functioning well and the right side is where the significant blockage is/was.
He scheduled the ERCP and told me going into it that he was hopeful but not overly optimistic that he would be able to get the stents into where they need to be and stated that if not, a PTC bag procedure with a drain tube may be necessary and that would be a separate surgical procedure.
Fast forward, we just came out of the procedure and he was able to get three stents in where there were two. He felt encouraged that he was successful but has recommended that I stay overnight , which we chose to do. The thinking is that we will get new labs, we’ll see if the itching has stopped and if not and we still needed to do the OTC, I am already admitted and in town for the procedure tomorrow..
As a side note, the doctors are having a difficult time with getting a good biopsy. The results from the first one came back inconclusive. If they didn’t get good material today, they may have to go in from the side and pierce it and no one wants that for a lot of reasons.
Dave
Dave…..Prominent hospital doesn’t necessarily translate to a center treating a high volume of biliary patients, hence I agree with Catherine and Lainy in that you must search out a center treating a high volume of biliary patients. Did this hospital order a CT, MRCP or anything else to verify the diagnoses? Have you had a biopsy?
This is what I have learned: Your feeling better coupled with the downward trend of AST and ALT must have been indicative that the stents are doing the job. However; it takes some time before the bilirubin is reduced enough and nausea is eased and the itching stops. The yellow coloring of skin and eyes may take a bit longer yet.
Are you following up with the original ERCP physician? Perhaps additional stents will aid in draining of bilirubin and allow you to feel better at a faster speed so that you can move toward treatment options.
Hugs,
MarionDear Dave, welcome to our remarkable family and the best place to be for CC support. Sorry you had to join in on this roller coaster ride. I would guess that the first stents were not placed properly or slipped. We are big believers in 2nd and 3rd opinions and like Catherine said make sure you are at a hospital that has experience in treating CC. Do you mind telling us where you are being treated now. We do not listen to statistics as this CC is still very rare but I am also concerned that at 5.5 cm they felt you would not get treatment to help. At 5.5 you may be able to do chemo to bring the rascal down to an operative size. In the beginning of this journey it takes patience and sometimes a few different ONCs to get on the best treatment plan. Persevere until you feel totally in agreement with the options as you are your own best advocate. Please keep us updated on your progress as we truly care.
Dear Dave,
Welcome yo our group. I’m hoping those who are more knowledgeable on transplant requirements will chime in. I’m sorry you had to find out what cholangiocarcinoma is and I hope in the near future they have a treatment plan which quickly improves how you feel. Although I am not a physician, from reading posts and experience with my mother, I’m surprised to hear only a 5-10% chance of chemo shrinking the tumors. Although not as high as we would like, I would have thought it was higher.
However, one thing I have learned since my Mom was diagnosed in 2013 is that CC is a disease where you do not want to focus on statistics. In addition to being alarming, they are not based on how patients are today as we are seeing more treatment options coming available. We were given the common “chemo will give you 3 months more”. However, the chemo gave us time to look into other options. At 2 1/2 years since diagnosis, my mother is fortunate to be feeling fine and treatment free since Nov 2014 (she had Y-90 radiation treatment).
You mention”prominent institution”- one thing all seem to agree on is finding a hospital which treats a high number of CC patients.
Best wishes to you and your wife,
CatherineHello All,
My name is David and I am new to the board. I was first contacted back by one of the wonderful individuals who monitors the call number after I left a message. She couldn’t have been friendlier and more helpful. She sent along many “starter” links that have been incredibly helpful.
At this point, I want to reach out to this community and tell you what’s going on. It’s been just over three weeks since I received a call from my primary doctor that my annual labs were concerning.
My AST and ALT enzyme levels were 10x their normal values. This was surprising to me as I had not had any real symptoms outside of a bit of “indigestion” that I was dealing with. Over the course of the next week, my numbers went much higher and my General Practitioner checked me into the local hospital. The general feeling seemed to be that I may have gallstones and would need to have my gallbladder removed. We went for an MRI (MRCP) and the images were them passed to the local GI specialist at the Hospital. When they came in with a room full of doctors and residents and told me that I had a mass and it appeared to be inoperable Cholangiocarcinoma, or whatever that was, it was not good and I may have limited options. Now my wife is in the room with me and we had just lost her mother to Liver Cancer in January, so you can imagine the emotions in the room.
I was told that a stenting procedure (ERCP) would be required to open up the Biliary Ducts immediately and then we would move on from there. It was also clear to the attending physician at this point that this may be a complicated case based on the images. They immediately contacted a Doctor at another facility that was much better equipped to handle this procedure and we scheduled a date. It was a great facility and the procedure required two stents, one in each duct. I was really hoping to start feeling some immediate relief but none was forthcoming. At the end of the procedure, the surgeon recommended that I should start getting multiple opinions on treatment options.
Now as the week went on, I started feeling worse, especially after eating anything other than soup or crackers and my weight had started to drop. I had already had an appt. scheduled with a very prominent institution and I decided to go their ER as I was really feeling quite weak and ill. The logic was that as they were in our extended insurance network and we would already be seeing them on Tuesday (tomorrow) early this week, we might as well go to their facility. Once we had arrived, were promptly admitted as my numbers were quite high and I was dehydrated. I received fluids, was monitored through the weekend and started feeling a bit better. The AST and ALT’s were trending down and the doctors felt that the original stents were doing their job. At that point, they felt there was no reason to keep me at the hospital any longer and I may never feel much better than I do at present, which is relatively rotten, and would release me today. Now saying that, I thought what we were going to receive was another MRCP with the stents to see if there is an additional blockage that needed to be addressed. I am still very jaundiced, itching, nauseated, etc….They said that we should really wait till we have a positive biopsy report of Cholangiocarcinoma until we started consultations with their Transplant team (whom also consult on other therapies as well). The doctor that I saw told me straight out that as my tumor was 5.5cm, it was too large to be a candidate for a transplant and that the best I can hope for is a 5-10% chance that we can shrink the tumor with chemo to have any chance of surgical removal. Floored again!
After hearing that, the other surgeon who did the original ERCP last week has contacted me and indicated that he may want to get new images in anticipation that we may re-do the stents. He doesn’t like that the Bilirubin is still between 12 and 15 a week later.
In writing this post, I really wanted to reach out and get others opinions as they has get me looking for answers and options quickly! If you have an idea or a word of advice, I’m all ears and would love to hear from you. I want make sure I’m talking to the right doctors about the right subjects.
My apologies if the information flow seems a bit choppy and difficult to follow but I wanted to get this on the board tonight.
Thanks and may God Bless all of you.
Dave
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