May 3, 2017 at 5:41 pm #94802positivitySpectator
From my research and understanding, unfortunately chemo is not a guarantee from controlling the cancer. This is why I want oncologists to be open to several treatment options based on individual. This involves work, action, and getting more clinical trials. There should be more clinical trials on immunotherapy for CC which hopefully is more promising than chemo. Smart to check out clinical trial options and give him some recovery time in between.May 3, 2017 at 4:49 pm #94801hopeseekerSpectator
I like your online name. May you and your husband find help and hope along the way!
My MIL is also on Oxaliplatin, but has only had 2 treatments so far. Right now we are dealing with low white blood count and platelet levels. Hope that the week off will give her body time to build back up for her next round.
This is a good community of support, but I sure wish I never had to find in the first place. What a hard cancer this is to deal with.May 2, 2017 at 6:49 pm #94797hopefulMember
Our oncologist reviewed the scans with us this morning and we’re sad to say that his liver tumor and some of the tumors in the lungs have grown. The gemzar and cisplatin are not working. Oncologist is changing the chemo recipe to Oxaliplatin and then going home with 5-Fluorouracil in a chemo bag for two days. We’ll come back in to have it unhooked after 47 hours. If this chemo recipe doesn’t work after 6 treatments then we go to clinical trial. It’s hard to believe that his tumors grew so much even while he was on chemo. Hoping this next chemo treatments will work. Has anyone out there had any experience with a take home chemo bag?May 2, 2017 at 6:01 pm #94798positivitySpectator
Thank you for sharing on our site. Yes, situations move rapidly, as is the case with most of us. I remember the awful experience in the hospital with this diagnosis. It was very traumatic, but grateful for discovering this site and taking effort to learn and trust myself during this journey. I want a day where oncologists don’t rely on chemotherapy as the first choice of treatment. I am discovering most CC patients are different , and what may work on one may not in another. Each individual must be evaluated carefully. It makes logical sense to quit chemo if it is not working, due to unnecessary toxicity to the body. Other than diabetes did he have any other prior medical conditions pre–CC diagnosis? Still maintain great nutrition and a positive lifestyle. Please do get at least 3 opinions and use your best judgment based on research and what you may view as beneficial.
Keep us posted.May 2, 2017 at 11:54 am #94799middlesister1Moderator
I’m sorry to hear of your husband’s diagnosis, but very happy you found us. I hope your meeting tomorrow gives you answers. We often found it helpful to write down the list of questions, and the more ears the better. Some have mentioned tape recording the visits and I think that would be good if possible.
Since CC is very rare, we are big advocates of getting second or even third opinions. It is important to be treated at a Center which has specialty in cholangiocarcinoma. Ideally, you have an interdisciplinary team of doctors (ONC, radiologist, surgeon, interventional radiologist).
I am not a medical professional, and those who are may cringe at how I try and describe the tumor and Y-90 (Mom had chemo and two Y-90 treatments). I look at her primary tumor as a dandelion whose spores (cancer cells) can land other places in the body and grow. Chemotherapy treats the whole body (spreading weed killer over the lawn) and ideally attacks all mets and also cancerous cells which haven’t grown to a point yet where they can be picked up by tests. This is different that the Y-90 where the interventional radiologist is putting the radioactive seeds directly into the blood supply of the tumor. I envision this as going out and pulling the one dandelion out by the roots. Even if the Y-90 kills the primary tumor, they still have to address what has spread elsewhere. The Y-90 is only effective at the targeted locations they implant the radiation.
My thoughts and best wishes are with you and your husband,
CatherineMay 2, 2017 at 3:46 am #13279hopefulMember
So thankful to have found this site. We all know what it’s like to feel so alone in our situations when diagnosed with a rare cancer like cholangiocarcinoma. Wish we could have found this site sooner, it’s been very informative. My husband was diagnosed with stage four cholangiocarcinoma on Jan. 24, 2017. He was not feeling well since the fall of 2016. Losing weight, not eating, lacking energy. We fooled around with getting a GI scope and waiting for results, which came back negative. We put things on hold through the holidays and then went back in for blood work in January 2017. Elevated liver panels led to a CT scan the same day and by 5 o’clock that day we heard the word CANCER and our lives changed.. His tumor measures 11.4 x 7.5 x 6.8 cm. and is inoperable. We were educated about Y90, and were going ahead with it when the results of the PET scan revealed metastasized cancer spots in the lungs and lower lymph nodes. Instead of doing Y90 first, he was started on chemo (gemzar and cisplatin). After the first treatment he ended up in the hospital with type B influenza. He came through it and was released and was starting to feel somewhat better just in time for his second chemo treatment. Two days after this treatment he had a seizure after taking his nighttime dose of dexamethasone. He is diabetic and the stearoid spiked his blood sugar to over 400 which caused the seizure. For future chemo treatments they reduced the amount of dexamethasone used in the IV and he no longer takes it in pill form after treatment, he uses zofran or compazine for nausea. He also has had his right lung cavity fill with fluid and had to have thoracentisis two different times. He has lost close to 30 pounds and his belly is extremely swollen and seems to have grown larger. Last week he had CT scan to show if chemo is helping. We don’t know results about the liver tumor but we do know that some of the cancer spots in the lungs have grown. We have a consultation tomorrow to see what will be the next plan of action. If chemo is not working in the lungs then why continue? If the tumor is feeding the cancer in the lungs then shouldn’t the tumor be targeted? We’re hoping for the Y90.
Thank you for reading. It’s comforting to know of others who understand.
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