Fay
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Hi Brigitte,
I think you are doing AMAZING!!! And you will get great results with your next TACE;) You’re an inspiration! You can do this!!! We are all behind you;)
Hugs,
FayThank you for all your kind and supportive words. This is so difficult to get through. Next Wednesday will mark the 2 month mark since she passed. I have good and bad days. The only comfort I have is that she is no longer in pain. But I am still trying to get over the pain of how poorly her case was handled. We might as well have been in a third world country, not Canada. I am trying to put things into perspective. And trying to just focus on being grateful for having such a great mother. But I still struggle when I look at her photos. I feel like the pain will never get better.
Fay
xoxo
Hi Love,
I had intended to stay away from anything related to cholangio since I lost my mother less than 2 months ago and am trying to piece myself together….But I got an email with your posting (not sure how that happened but glad it did) and your story resonated with me and I had to reach out to you because I want your mother to have a happy and disease free life;)
Like you, my mother was diagnosed with perihilar cholangio and a golf ball tumor was resected. Her margins were positive throughout and she also had a positive lymph node. Unlike your mother’s case, my mother’s surgery was not well planned out and the oncologist refused to give her any adjuvant treatment. My mom lived in Vancouver and we were supposedly going to ‘the’ place to be for anything related to cancer. I am SO HAPPY that your mother had a much more comprehensive resection, and received adjuvant treatment post-op. I am also thrilled that they are trying hard to figure out what is going on. YOU are being a fantastic advocate, so keep asking the questions and keep doing what you are doing. You’re amazing!!!….now, to answer one of your questions, this was our experience…
Cholangio is not a disease that necessarily shows up on CT early on. In fact, my mother had disease recurrence with normal tumor markers and no objective evidence of disease on her abdominal CT scan. However, she was in a lot of pain. My sister and I were losing it with the oncologist since her resection did not achieve clean margins and the oncologist refused to give her any adjuvant treatment – so to my sister and I, it was clear it was the disease that was causing the pain. But we had a hard time proving our point when her CT abdominal and tumor markers were normal………..With cholangio, it’s best to assume the worst and put pressure on the providers to move things along quickly. What ended up finally diagnosing my mother’s recurrence was a liver-pancreas protocol CT scan (not a standard abdominal CT) with IV contrast. I’m sharing this, because I don’t know if your mom would benefit from this, but think it’s worth asking about…
Great job with the foundation one testing! I’m thrilled you did that. I hope and pray that things turn out to be unrelated to the cancer. But it’s important to be hyper vigilant regardless. And to pay attention to her symptoms, even if there are no concerning objective findings.
Sending much love to you and your mother,
Fay
Hi my CC family,
She had the drain placed. It’s an internal-external drain and it will be permanent in her case. The decision became easy once she had positive blood cultures for yet another bug (3 different gram negative bugs in 3 weeks). She is doing better, still in hospital, but her pain has improved since drain placement. I hope she can get back to chemo soon since she has been off it since mid January which makes me nervous. And I hope she is discharged soon because hospital food (in Canada) looks like fresh vomit on a plate:( My poor mommy.
Love you all,
Fay
Dear all,
She is hesitant because it may cause her more pain (not the drain placement procedure itself, but life with a drain) and that is likely what turns her off the most from the idea of consenting to getting a drain. Can anyone who has a drain please comment about the pain factor? Is it an additional source of pain and discomfort?
Sincerely,
Fay
Thank you Mary. We were told that stenting (extrahepatically where the issue is) is not an option in view of her post op anatomy (ERCP is not possible). I asked if they can place a stent intrahepatically (instead of a drain), and they said not likely.
Fay
Thank you Gavin and Joe. I should have been more specific, my apologies. I was referring to a percutaneus transhepatic biliary drain – into her liver to help drain the intrahepatic bile ducts which are backed up secondary to extrahepatic tumor growth. We were told if the drain is put in, it’s permanent. So we are currently trying to weigh the pros and cons of this procedure. Thank you for your input.
Hugs,
Fay
Brigitte!!!!!!! That is so incredible! I’m so happy for you;) You’re amaaaazing!!!
Sending you a BIG virtual hug,
Fay
xoxoxo
Dear Aroha,
This is Fay – one of your MANY, MANY, MANY cheerleaders on this site;);););) My mom’s oncologist said those exact words to her on Sept 29th/2017 – that her disease had progressed to stage 4 (in less than a year since her resection), and is now considered inoperable and incurable. She too was given 12 months to live……unfortunately she was not in very experienced hands from the start, which is why I believe, she progressed as quickly as she did…….we have an experienced oncologist now and she just finished cycle 3 of gem/cis and is tolerating it well.
I think it is fair to say that when the patient, as well as family members hear those words, you almost go numb. However, what I told my mom (after I got over the shock, tears, etc.) is that :a) they are generalizing and stating overall statistics, not to mention that every case is unique and different from the others b) As much as I respect oncologists, last I checked, they are not God and c) It is crucial to try to have a positive outlook as stress only lowers your immune system even more and increases stress hormones (eg cortisol) which together, will not be beneficial to your body healing.
I too would strongly encourage you to get a second, third, fourth opinion if you need to (but second opinion for sure). And not just from any oncologist, but one at a major cancer institute who also has A LOT of experience with this disease. Additionally, if they have not taken a biopsy already, ask your current oncologist to do that and send it off for molecular profiling (including PDL1 and MMR testing). You may be a candidate for immunotherapy and not even know it;) You yourself are your strongest advocate. Even though everything is a choice, please do not make any decisions without getting a second opinion, as well as learning more about your tumor itself via molecular profiling first. This way you can make more of an informed decision, with a lot more information at your finger tips.
Hugs,
Team Aroha member (aka Fay)
Hi,
I can’t open this link for some reason. But is this the FDA approved study with turkey tail mushroom at Bastyr University? I believe the patient population was breast cancer patients however, the effects of these mushrooms on the immune system can still be extraplolated.
Hugs,
Fay
Thank you Gavin. Yes the one next May/June. Though I did see one in San Franscisco this January but focus seems to be more gastric and esophageal cancers versus cholangiocarcinoma. Thank you for emailing Donna for me. I don’t check my messages here very often since my mom has progressed to stage 4 and is currently on her first cycle of gem/cis. But I have every intention of going to ASCO in Chicago unless my mother needs me more at that time.
Hugs,
Fay
Dear Red,
THANK YOU for your post. It generated great discussion on this amazing forum. My mom finished her radiation + capecitabine treatment course six weeks ago. Lately she has become increasingly more frustrated with her disease and overall quality of life, mostly because she is so sick and tired of feeling sick and tired. The nausea, lack of appetite and fatigue really gets to her. And she too thought everything would return to normal post treatment. So the fact that it has not has really taken a toll on her emotionally.
All the posts in response to yours were so helpful. I will make sure I share it with my mom. And I am planning on taking her to a naturopathic oncologist soon to see what options we have there. The B12 idea is definitely worth bringing up with her oncologist.
Hugs,
FayKris and Mary,
For my mom, what finally showed the obvious was a CT that was a specific pancreas, liver protocol, ordered by her hepatobiliary surgeon. Not the usual CT abdomen, pelvis that her oncologist was ordering. So I think the type of scan, protocol used, with or without contrast, all make a big difference when trying to figure out what’s going on. I forgot to mention this earlier.
Love you all,
Fay
