Newly diagnosed and scared
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Porter,
I want to add that my wife’s diagnosis in April 2013 was similar to yours. And like you, she is young and healthy. She had multiple tumors, including one large tumor about the size you have. She also has lymph nodes impacted. Her liver was so damaged that we weren’t sure she would even get chemo. But after 3 cycles of Gem/Cis we have seen reduction in the size of the liver tumors and the lymph nodes. The doctor was quite pleased and suggested further chemo cycles since it was proving effective.
If you can handle the Gem/Cis, this combination has become the standard initial treatment plan for non-resectable bile duct cancer. For my wife, the side effects are fatigue and nausea, but both are manageable.
You already have two major factors in your favor: your health and your desire. Both will be important as you begin this journey.
Keep up your health. It is important you stay physically strong and active. We also made nutritional changes to my wife’s diet. We removed a lot of processed food and sugars – we figured the liver has enough work to do fighting the cancer and dealing with the chemo, it didn’t need to process more toxicity.
Keep a positive attitude. Reach out to family and friends for support. They will want to help, but sometimes don’t know how or don’t want to impose. Having the positive attitude will get you through some tough days.
Wishing you success as you go forward.
Carl
Matt just hearing your story and being similar gives me hope. Thank you and everyone for sharing. I’m signing off for tonight. Much strength faith and care to you all. Ill be in touch with you guys very soon.
Porter,
For what it is worth, Lisa’s primary tumor is nearly as large as yours (15x12x13). The primary tumor has comprimised the portal vein and hepatic artery. She also has 3 smaller tumors and positive lymph nodes near the aorta. Despite the advanced stage, which I believe is somewhat similar to your case, we are very hopeful and optimistic. Lisa has completed two cycles of chemotherapy (gem/cis) and has tolerated it quite well so far. She will have her first post chemo scan in another two weeks.There are many cases of patients with similar size masses that begin as unresectable and become resectable after chemotherapy and other targeted treatments. We are very hopeful that resection will become an option in future. Even for non-resectable patients, many have had success at shrinking the tumors, managing symptoms, and preventing further growth for several years.
As for Dr. Vaccaro, I have heard many positive comments. I believe that you are in very good hands at OHSU.
I am sure you are still in shock after the diagnosis, and after almost two months the shock has still not worn off for us. Please rely on the folks on this board for support, it is an unbelievable resource. Don’t give up the hope, and please let me know if I can help in any way.
Warm Regards,
Matt
No bc I don’t think I’m there yet. I have my first pet scan Friday and first appt with vacarro after the scan.
I like Dr Vaccaro. My complaints about OHSU are it’s hard to get appointments and there doesn’t seem to be a ton of communication between specialists. This unfortunately seems to be common, though.
I would recommend another opinion. This cancer is just too rare not to seek another opinion.
I got 3 regarding my post resection aka adjuvant therapy, UPMC, Mayo and OHSU.
You have a right to be frustrated.
Has anyone mentioned liver transplant? It is not commonly done for IH CC, but it seems to be happening more frequently.Matt I just saw your post. Thank you for sharing. And again I am very glad I have found this site and able to talk to people who are going thru the same thing!
Wow what a story. So I have been referred to dr vaccaro. 3 years ago I was diagnosed with a 5cm with a liver hemangioma with 6 month scans. Went to er in may for pain and 2 months later I have been diagnosed and they say my liver mass is 16cm. I am not seeing anyone having masses this large and feel beyond hopeless. Does this mean that the bile duct cancer has metastasized into my liver and I’ve lived with this mass for over 3 years and they are just now telling me its cc. I am not ready to leave my children I lost my mom who wa not blood to cancer but she raised me since birth. I am young and I will fight this as much as I need to. I am otherwise healthy bloodwork normal liver tests normal only symptom is slight tolerable pain. First biopsy showed mass was benign and was ordered the second biopsy and that is when I was diagnosed. I have so many mixed emotions and I am so mad that this appears to be a mis diagnosis 3 years ago when it probably could have been removed. Sometimes I feel like screaming!!!!
What do you think of Vaccaro? I was first seen my dr Orloff.Porter,
My wife Lisa was diagnosed with unresectable, stage 4 ICC on May 30, 2013. We too have small children (ages 1 and 4), so I can definitely relate to the added anxiety and stress of battling this disease and raising young children.We also live in the Portland area — Lisa is being treated at OHSU as well. We are very happy with our care at OHSU and our oncologist, Dr. Lopez.
Many on this site stress the importance of second opinions and I definitely concur with this advice. We have obtained multiple opinions from some of top cancer centers in the country. So far, all of the experts have concurred with the initial treatment plan outlined by the team at OHSU.
Please let me know if you have any questions. I would be happy to share any information that I have regarding our journey as well as local resources that may be helpful for you.
Warm Regards,
Matt
So, long story.
I went to the ER with abdominal pain and a 5cm liver tumor was found.
Ct scan and MRI were inconclusive, biopsy recommended.
At this point I called University of Pittsburgh Medical Center, because ironically, I used to work there as a nurse with liver tumor/liver transplant patients.
I got scheduled for surgery at UPMC. They didn’t think it was cancer at the time, but I was told it should be removed either way.
Meanwhile, I was also sending my records to OHSU, because I live here now. So, I got my resection in Pittsburgh, they knew it was cancer as soon as I was opened. I recovered there for 6wks and then headed back to Oregon where I met Dr Vaccaro, my oncolosist, for the first time. I had 3 cycles of Gem/Cis. Then 6wks of chemo radiation, Martin Fuss was my radiation oncologist at OHSU, he has since left. Then 3 more cycles of Gem/Cis. I have been done with treatment for about 1 1/2 yrs and get periodic ct scans to monitor for recurrence.Dear Susie and Porter, I so hope you 2 can get together! I CANNOT TELL YOU THE FEELING YOU WILL DERIVE FROM MEETING EACH OTHER. This family is something else but to meet a member in person is the best!
Porter, wishing you the best on Friday!
Porter,
Hi, my name is Susie. I am 33. I was diagnosed a little over 2 yrs ago with intrahepatic CC. I had a resection. I get treated at OHSU also. I live in Hillsboro.
I don’t have kids. I was trying to get pregnant when I got diagnosed.
Let me know if you want to talk or get together.
Don’t private message me on this forum, for some reason, I don’t appear to get all the messages. Take care and just let me know if you want any more details on my story.Take care,
Susie
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