Introduction / Welcome
Discussion Board › Forums › Introductions! › Introduction / Welcome
Tagged: Our story ...
- This topic has 160 replies, 66 voices, and was last updated 2 years, 2 months ago by Kristenhall.
October 5, 2017 at 4:01 am #95756middlesister1Moderator
A very warm welcome to our group. Your story shows how important it is to get the routine blood tests- that’s how my mother’s was first found too. The diagnosis can be scary- especially once you figure out what it is. However, great strides have been made in just the past few years which are not reflected yet in the publications. And, the “good news” is that you were able to have successful surgery- YEAH!!!! I hope chemo goes smoothly and you can get back to living a normal life again soon.
CatherineOctober 3, 2017 at 7:34 pm #95753
Hi, and welcome to the discussion board. So happy you joined us but sorry you are a part of this club. Happy you were able to have surgery and are doing follow up chemo, especially after the BILCAP results were so good…..please keep us posted on treatment and let us know if we can help with anything. All my best to you!
MelindaOctober 3, 2017 at 1:16 pm #95751kasotakSpectator
Hello, I am 56 years old, married to a wonderful man for 30 years this past August, and with 4 young adult children (who will always still be my babies). Cancer was not on my radar as I don’t have a family history of it. Heart disease is what I’ve always worried about, so when my triglycerides came back at 640 after my physical in March 2017, rather than go on cholesterol lowering drugs as my doctor suggested, I immediately quit drinking, started running 3 times a week with my hubby, and lost 15 pounds that first month. My triglycerides dropped to 193, but my ALT went from 47 to 56. My doctor of 29 years ordered an ultrasound of my liver and the tumor was found. It took a CT scan, MRI and biopsy to determine it was an intrahepatic cholangiocarcinoma in July 19th. Before that, it was inconclusive, and they were not sure if it wasn’t from somewhere else in my body, as I’m sure many of you have experienced. After being probed from stem to stern and all in between, and the PET scan only showing cancer in my liver, surgery was scheduled for August 11th. Dr. Jessica Cioffe, of UF Shands Hospital, successfully removed a 2.5 cm tumor and lymph node. It was staged as T1N0M0 with negative margins, but poorly differentiated. Their tumor board recommended 6 months of capecitabine (Xeloda), based on the UK BILCAP study. I was very happy to have it out of me, but thought that would be it – more like an appendectomy than ongoing cancer. I purposely had not done research on the internet as IHCC was so rare, and everything was just scaring me. But now that I have, and found this group, it has helped me. I just had to wrap my head around it and will start chemo soon. Thank you.September 5, 2017 at 11:12 pm #83970darlaSpectator
I too am sorry to hear you lost your wife to this disease, but am glad you have joined us. Only those of us who have been touched by this cancer truly know how it affects you. It is definitely a life changing experience. My husband was 62 and also died in a short time, so I truly know how you feel and what you are going through. Thank you for joining us and your willingness to contribute and help to support others.
DarlaSeptember 5, 2017 at 8:11 pm #83908
First and foremost, I am so deeply sorry for the loss of your wife. My heart hurts for all those who are left behind by this dreadful disease.
Secondly, welcome to the discussion board. We are so happy to have you and grateful for your willingness to participate and help others. It is people like you that make a huge difference for others going through these hard times.
All my best,
MelindaSeptember 5, 2017 at 8:05 pm #83909deizeldooSpectator
Hello all, nice to be here in the discussion room.My name is Rod and I am new here….user name is Deizeldoo.I arrived at this site because my wife had Cholangiocarcinoma-Bile Duct cancer.She presented a jaundiced condition in June, was diagnosed with extrahepatic bile duct cancer after ultrasounds, CAT scans, blood tests, eventually had 2 ERCP’s performed with stent insertion.Since this condition does not express any signifigant symptons till it is well advanced, there was nothing they could do for her.She died after a short bout with this cancer, there did not seem to be any signifigant amount of suffering on her part, however, it was uncomfortable for her.After being referred to a liver specialist in another larger city, she died 6 days later on July 26, 2017.Barb would have been 67 this December.The surgeons indicated to me that this is still a very rare sort of liver disease, but it is a growing aspect of liver cancers.I went thru a lot of experiences while going thru this terrifying event, losing ones spouse is incredibly difficult and life changing.Anything I can do or help anyone with as far as dealing with this experience..you have my empathy and sympathy.Please don’t hesitate to reach out if you need to just talk…I have been there..I wish all family members, friends and especially spouses best wishes and support in your time of need.Hope to be getting to know some of you soon.August 22, 2017 at 11:59 pm #84002
Welcome to the discussion boards! We are so glad you are here. I have been a stage IV Intrahepatic patient for almost eight years, so I know the highs and lows you speak of very well! I am glad you have found comfort in support groups. I believe strongly there is strength in numbers and it just helps to know you are not alone in what you are going through.
Please keep us posted on your husband’s progress and ask any questions you have. All my best to you and your husband.
MelindaAugust 22, 2017 at 11:53 pm #84001
Wow, what a story! I am so happy you are here to tell it! Thanks for posting and paying it forward as you stated. That is exactly how I feel about sharing my story and talking with other patients and caregivers. Thanks for joining our amazing group, and I know your story will help someone! Please keep us posted and welcome!
MelindaAugust 22, 2017 at 2:24 am #84000bonSpectator
Yours is the first comment I read and you have given me hope for the future. I understood every word of your post as far as medical terms, treatment, etc. because my husband is going through the exact same thing.
Husband was diagnosed in March of 2017.
I read too much on the Internet and the first doctor we went to gave him four months to live (!!!). It is now month 5, he’s doing OK and, according to the latest CAT scan the cancer hasn’t spread. Surgery was unsuccessful – but the surgeon told us that with chemo and proton therapy to shrink the tumor, he’d like another crack at it – so there is hope.
Husband’s insurance was terrible – we had to wait for approvals and then appointments were made three weeks later, even though my husband’s chart was marked URGENT in all caps, just like that. We spent a lot of time waiting around for tests, specialists, surgeons, oncologists, etc. We were constantly told “someone will get back to you in 24 hours” – and then four days later and five phone calls from us and no one had bothered to call. That and the insurance was starting to increasingly deny treatment and dr.’s appointments.
Finally, my husband switched over to my insurance (my employer covers spouses 100%). My insurance is Kaiser and they got right on it – doctors called back immediately (not the office), within a day a team was working on my husband’s case (Thank God). He’s had the best care and I have no complaints. The stents needed to be changed and Kaiser did it that very day (the other insurance we had to wait for an approval and then it was weeks after that).
Chemo starts on Monday, it’s been delayed twice b/c the liver enzyme numbers were too high. The last surgeon only put in one stent, the doctor this weekend said two should have been installed and did that procedure on Saturday. Husband went home the same day after the ERCP.
It’s been a rocky road but reading your post has given me hope for a cancer-free future. We’re hoping the chemo/proton therapy will shrink the tumor and the surgeon will be able to take it out after that.
Are you taking any supplements or following any special diet? We are and I can tell you about that if you’d like – husband thinks it’s the only reason he’s still alive.
Best to you and your family – I also have two children who are grief-stricken and terrified and I’ve had to calm their fears (along with my own).August 22, 2017 at 2:10 am #83999bonSpectator
Hello I am new to this board.
I am a caregiver to my husband who was diagnosed with bile duct cancer in April of 2017 – all I’m reading is true: There are tremendous highs along with the lowest of lows – depending on the day and which doctor we’ve talked to. I’ve felt everything from hope to hopelessness from encouragement to despair down to the darkest loneliness and isolation. I’m in another discussion group that is strictly for carers and that has given me tremendous comfort to know that the emotions I’m feeling are normal for this type of horrible experience.
Surgery was attempted in July but was not successful. That was a devastating blow b/c we thought that would take care of it. Husband is on second set of stents – he seems to be holding his own and according to the latest CAT scan, the cancer has not spread.
Chemo is going to start next week. Husband has lost a lot of weight but is still strong and has energy. He has depression at times but has only lashed out at me once (I know this is normal, those with this will lash out at those closest to them). He is righteously angry and frustrated. And don’t get me started on the insurance issues! Husband finally switched to my insurance which has improved our medical care by 100%.
I did not sign up for this and I want off! But this is my reality. In sickness and in health, right? And I’m here.
I enjoy reading other people’s stories and hearing their experiences, good, bad and ugly. I’ve gone through a lot of them, in fact, husband was hospitalized this past weekend b/c the last surgeon put in one stent instead of two and he needed two. My life has been hospitals and doctors’ appointments, one after the other. Sometimes I want to run away but I must stay calm, strong and positive for my husband, myself and my family.
I’m no good to anyone if I run myself ragged.
Thanks for listening.
BonAugust 16, 2017 at 4:13 pm #83998bglassModerator
Welcome to the discussion board and many thanks for posting a detailed account of your CCA journey. This is so helpful for other patients and caregivers.
Your point about “fighting” is a good one. The metaphor implies some people didn’t fight their cancer hard enough, which is not a fair reflection of patients undertaking difficult treatments and doing everything they can to get well. There is some fighting, however, involved in this rare cancer – for information and answers, for adequate treatments, for research funding, to name some of the “fights.”
The quote is inspiring, thank you.
Please keep us updated and best wishes for continued good response to treatments.
Regards, MaryAugust 16, 2017 at 2:21 pm #83997jeff_in_pittsburghMember
My name is Jeff, and I was diagnosed with a Klatskin tumor in November of 2015. It all started with the pruritis (itching) that a lot of us have experienced, and I went from itching and slight jaundice on a Saturday to a (primary care) doctor’s appointment on Monday, an abdominal ultrasound Tuesday, an MRI Wednesday (the day before thanksgiving), an ERCP and stent placement Friday, and a CT Saturday. They did a second ERCP a little more than a week later (one of the stents wasn’t placed correctly) along with a biopsy, and just like that, I went from a healthy 43-year-old to having cancer.
In January of 2016, I went to Mayo for a liver transplant evaluation, but they discovered the CCA had metastasized to regional lymph nodes, making me ineligible for their protocol. It was crushing news, but that allowed my team in Pittsburgh to get started with treatment. In March 2016, I started 5 cycles of Cis/Gem, in May I had a portal vein embolization in preparation for a liver resection, and in late June two surgeons removed 3/4 of my liver (along with my gall bladder and most of the affected lymph nodes) to get all of the affected bile ducts. For those familiar with resections, the only “good” segments of the liver were 6 and 7, so this “left extended triseg” was pretty rare. Margins in the liver were negative, but there were still positive lymph nodes. That led to chemo-radiation (Xeloda) in September.
Things were looking okay until a pseudo-aneurysm in my duodenum nearly caused me to bleed out in November. The radiation had (unbeknownst to my medical team) caused several ulcers, and I went from feeling fine, to passing out and falling down a couple stairs almost instantly as a blood vessel ruptured and started emptying into my GI tract. I lost 2 liters of blood in minutes, and it was only due to my family being home to call 911, a short ambulance trip to the hospital, and a brilliant trauma team and interventional radiologist who stopped the bleed that I’m even here today, that and 12 units of blood and a week in ICU with some fabulous medical staff.
A planned return in the spring of 2017 to systemic Cis/Gem was hit and miss because my marrow was pretty beaten up resulting in very low blood counts (neutrophils, H&H, and platelets) to the point where I couldn’t get treatment for weeks at a time. Eventually, my medical oncologist had me get another staging PET/CT, and I got the best news anyone affected by CCA could hope for, no evidence of disease. The liver was still clear, and the radiation and chemo seems to have taken care of the regional lymph nodes. Distant lymph nodes and other organs also appeared clear.
I’m still dealing with some complications of the surgery. A recent endoscopy and PET/CT showed I have portal hypertension. The portal vein isn’t flowing through the liver remnant (which isn’t as big as they expected it to be by now, more than a year post-surgery) causing blood to back up into the spleen. The spleen is enlarged and is apparently partially to blame for my low red and white counts, so I have an upcoming appointment with a hepatologist to see what is going on there.
Like a lot of people affected by CCA, the initial reading I did about mortality rates was truly terrifying. I was less concerned about myself than with missing out on my kids’ (now 12 and 16) growing up and growing old with my wife. Thankfully, I was very fortunate at many steps along the way. I have a very supportive workplace (no questions asked for a half-dozen hospitalizations) and colleagues, fabulous insurance, and a brilliant and caring team of medical professionals. Friends and family have supported my immediate family in ways that reaffirmed what wonderful people I have in my life, and of course it doesn’t hurt that despite the setbacks, I’ve caught a medical break now and then.
I lurked on the forums here for a while immediately after my diagnosis and as I looked up information about each phase of treatment, but I didn’t feel compelled to post my story. After joining a Facebook CCA support group, I saw a post asking for volunteers to talk to folks who were newly diagnosed, so I decided to get more involved and try to “pay it forward.” So this is one of my first steps in that process.
Thanks for bearing with my lengthy introduction, and thanks to many of you for providing models of bravery and support in the face of a truly horrific disease. I know there’s been some discussion recently about whether “fighting” is the best metaphor for how we deal with cancer, and I’ve already gone on too long here to even address that, but one of the guiding principles that has led me since my diagnosis is what Stuart Scott said as he was battling his own cancer: “When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.”July 5, 2017 at 1:24 am #83996rhondarnMember
Thank you, Pat. I’m glad to hear you’re doing well!
I’m hoping to get my referral tomorrow, then go from there. I’m definitely anxious to get this rolling!July 4, 2017 at 1:52 am #83995herculesModerator
Welcome Rhonda and I am both sorry you had to, and happy you found us. Many intra-ductal biopsies show a benign or ‘polyp like cells’ on the exterior of a tumor in the bile duct, as mine was. I was told back then that often cells on the exterior of a tumor is benign yet inside it is cholangiocarcinoma. I went with his recommendation and scheduled surgery asap. If you have a chance for surgery go for it, this is tough to beat and you have a good chance . Others here recently had the whipple, so read a few stories, a woman from Canada who recently had the operation posted on my survivor story, she is doing well as far as I know, it can go well. I wish you the best, PatJuly 3, 2017 at 5:55 pm #83994rhondarnMember
Hi everyone! I’m Rhonda from southern Illinois, 54 yrs old and a nurse for almost 25 years. During routine labs in late May, my liver enzymes were elevated, then by June 10, they had skyrocketed with a bilirubin of 8. I was admitted to the hospital where my bilirubin shot up to 12.7! Had an endoscopic ultrasound with biopsies taken from a questionable area around the head of the pancreas, then had an ERCP to place a temporary stent in the bile duct.
My numbers came down quickly, I was discharged 2 days later, but then developed pancreatitis so was readmitted. It was at that time that I was told that my biopsies only showed abnormal cells but nothing more definitive. The biopsies were sent off to Johns Hopkins for a second look, and they agreed with the first findings on the biopsies. In consultation with my Dr, I was told that I most likely have Distal Bile Duct Cancer. I have a Whipple tentatively scheduled for later this month, after my pancreatitis resolves. I’m also waiting for a referral to Siteman at Barnes in St Louis.
Even as a nurse, I have some doubts and questions on what the course of action should be. Since my biopsies didn’t show cancer, only abnormal cells, is there no other course of action than having a Whipple procedure? As my Dr says, “Honestly, what else could it be?” They can’t get another biopsy because the stent is where they would need to biopsy.
Any thoughts or advice would be appreciated! I’m very glad to have found this site.
- The forum ‘Introductions!’ is closed to new topics and replies.