Diagnosis problems
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Loretta, all sounds good and you are doing a great job. Can’t wait to hear. You never know how strong you are until “strong” is the only choice you have!
Thank you Lainy & Marions for your heartfelt words and valuable information. She is receiving the Obdivo alone. I am in the process of getting the second opinion, she is at the moment very weak from her last chemotherapy, as soon as she feels a bit stronger, we will make the arrangements at MD Anderson. I will surely keep you posted on her condition.
Ictomas…. OBDIVO (nivolumab) is a anti-PD-1 monoclonal antibody. This antibody attaches to the defects in the cancer cell (in this case PD-1) with the hope that the body’s immune system produces a response. In other words, it takes the brakes off” the immune system to recognize the cancer. The hope is that metastases (spreading of disease) will respond as well.
Nivoumab has been approved for lung cancer and melanoma and is under investigation with other cancers. Is your aunt given this drug as a single agent or is it give in combination with other drugs?
Hugs,
MarionDear Loretta, welcome to our extraordinary family and the best place to be for CC support but sorry you had to find us. We are big believers in 2nd and 3rd opinions and perhaps it is time for that 2nd opinion, MDA is a great place to start. Is your Aunt on any pain Medication? No one should suffer these days as there are so many things one can take for pain. I would ask her ONC about it. Below is a site you may find helpful and please let us know how your Aunt progresses as we truly care.
http://cholangiocarcinoma.org/newly-dx/
I also want to add that my aunt has had the y90 done in Dallas at Baylor in March 2015, they stated that it did not work and that’s why they started the OBDIVO in May 2015.
Hello, My name is Loretta
I came to this site for my aunt Esperanza age 72, she is like my second mother. She is my mother’s only sibling. She was diagnosed with Cholangiocarcinoma in January 2015 and also: Malignant Neoplasm of Intraheptic Bile Ducts, this may be the same. We got word yesterday that the treatment (chemo) she is taking is not working. She is on OBDIVO. We do not want to give up, she is currently in a great deal of pain, and because of this pain her dr. Is thinking the liver is growing and not shrinking. She will be getting a ct scan tomorrow, my question has anyone heard of this treatment for this type of cancer? She lives in Roswell, NM and I want to get her to MD Anderson in Houston for a second opinion, I feel that the Drs in Roswell, have given up and want to send her home on hospice. Her liver enzymes are at 2400, another reason they feel the chemo is not working. I just would like to hear from you what you might suggest her my dear aunt. Thank you for your help, looking forward to hearing from you.Rosalie, it is hard for doctors to tell you that you have cancer until they are 100 percent sure you do, there are several conditions that appear similar to cc in scans, and c 19-9 is not always elevated in the presence of this disease. It is frustrating ,not knowing, but something is blocking your bile duct, so that needs to be corrected. I am a Cleveland Clinic patient and my experience was positive. I had my liver resected without being told for sure this is cholangiocarcinoma. So my take was , in spite of minimal symptoms and an unsure diagnosis, the best course of action is to err on the side of caution, this has to be removed, asap, cancer or not, they wont know for sure until they can “play with the pieces” and do pathology tests on the removed tissues. Thankfully my case went well, and I am here to share it with you ten years later. The Cleveland Clinic has treated this successfully, I wish you the best . The whole experience is very intimidating but be strong, face it, you can do this, tell yourself you will beat this. We will be here with you. God bless, Pat
The 6 liver biopsies I had done last week came back today. all negative. I go to Cleveland on Mon. Hope they can figure out what is blocking my bile ducts.
Dear Rosalie,
My biopsy pathology was not definitive either, and it was also sent off to mayo clinic, and they continued to hunt for a primary tumor. When no other was found they assumed it was Cholangiocarcinoma but that was not confirmed until my liver resection three weeks later. Is your tumor contained to the liver? Hang in there! They will get it! Hugs and prayers sent your way.
MelindaHi Rosalie,
Welcome to the site. Sorry that you had to find us all here but glad that you have joined as you are so in the best place for support and help and will get so much of each from everyone here. Yes it can be hard to accurately diagnosis someone with CC and for many it does take time unfortunately. In my dads case it took over 3 week for the full diagnosis to come through and they had to rule out gall stones and gall cancer before they came up with his diagnosis of CC.
But I am glad that you are seeing docs at the Cleveland Clinic and am sure that you will be in very good hands there. We do have some members that have been diagosed and treated there and hope that they will be along soon to share their experiences of the Cleveland Clinic with you. I think Lisa was treated there.
Please keep on coming back here and know that we are here for you as well. I know you will learn more at your meeting on the 2nd and please let us know how that goes.
My best to you,
Gavin
Dear Rosalie, welcome to the best place to be for CC support but sorry you had to find us. Going to Cleveland is a very good idea as we have had quite a few CCer’s go there with good results. You have taken what we usually suggest and that is to get other opinions. You will be on your way now, a good way! Below is a site you may find helpful and please keep us updated on your appointment. Wishing you the very best.
http://cholangiocarcinoma.org/newly-dx/
Thank you Marion,
I have an appointment with Cleveland Clinic on Nov. 2. I am sure they have more experience with disease than my drs. in Dayton. Thank you for the info on diseases that mimic CCF.
RosalieWelcome, Rosalie. I hope for others to share experiences with you, as often times, the diagnoses of Cholangioarcinoma is difficult to make. Some time ago someone had similar experience and ultimately the diagnoses was reversed however; I am unable to locate the original poster.
My first thought is to have additional physicians very familiar with this cancer to review the MRI and perhaps an additional pathologist to evaluate the biopsy.
The below link offers a good overview of other diseases mimicking the disease of Cholangiocarcinoma and I assume that all have been ruled out.
http://pubs.rsna.org/doi/full/10.1148/rg.284075148
Hugs,
Marion
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