September 11, 2019 at 5:46 pm #99070bglassModerator
The discussion board seems a little glitchy of late. If you are having trouble posting, please send a note to Rick through the form you can click on the discussion board main page. For me, switching to a different device helps. Hopefully we can get the glitches fixed.
Regards, MarySeptember 9, 2019 at 2:45 pm #99055GetwellsoonParticipant
hope all is well.
I tried to read your private message and reply but it doesn’t let me to read or either reply to your message. Would you please resend it to me. We have similar situation. Thank you and God Bless you all.November 29, 2018 at 10:50 am #97847bonParticipant
Hello Ryan –
I am sorry you are a part of this group. I hope you find comfort here. The personal stories, IMO, are far more valuable than anything any doctor has ever told us – which has been all over the map. I told my husband your and your wife’s story last night while we were walking our dogs. There are many survivor stories here that have given us – unlike the doctors – great hope.
My husband was diagnosed in March of 2017 with CC – his doctor also thought he had gallstones or pancreatitis after he complained of pain under his rib cage. They told him to “go home and rest” – a scan showed no gallstones. Later, the doctor thought he had pancreatic cancer, but his pancreas was clear. Meanwhile, we were losing valuable time and the insurance nightmare – I don’t even want to get into – delays, approvals (or not) and more delays.
By February of 2017, his urine had turned dark, he was becoming jaundiced and his blood work was abnormal. An MRI caught the biliary tumor – all 12 cm. of it. One lymph node was involved but otherwise he was clear, there were no mets in the liver.
My husband was able to switch insurance at this time and fortunately we have double insurance from my job, I have a much better plan that opened up new doctors and new possibilities. He was ruled out almost instantly as a candidate for a transplant, which, we were told, is the only way to cure this monster. His age was the biggest factor (60). We were disappointed, of course. Surgery was approved – husband was opened up and closed – the surgeon told me the cancer tumor was too close to the vena cava to do the resection. More bitter disappointment. This was in July 2017 and we were told he would be lucky to make Christmas, let alone the New Year – that and chemo doesn’t work well on this type of cancer. Those were some bleak days.
The doctors suggested the Gem/Cis – and husband refused at first, because the chemo doctor told him chemo would only buy him four months – and those would be miserable months. He did finally relent but gave up after a few rounds because of the neuropathy in his hands and feet. He switched to an oral chemo but quit that too – last dose was January, 2018.
A relative – and I started doing a lot of research on supplements, etc. and immediately started my husband taking them. At this point, we had nothing to lose – two doctors gave him four months, the surgeon “one very bad year.”
Fast forward to November 2018 – husband is far past his expiration date (as I jokingly tell him) – he just had three scans – a PET/CT, another CT and an MRI. All three were clear – the mass in his biliary duct can no longer be defined (!!) and all other organs are clear. The pessimistic doctor we see said “there may still be microscopic cancers in there” – but the other doctor we also see said he didn’t think my husband had cancer any longer. Unfortunately, he still has the stents in and really wants to get them out – they’ve become infected at times which means a large dose of antibiotics, oral and IV (given at home with a port).
Anyway, that’s our story. It’s been a difficult journey and we know we’re not out of the woods yet – if we’ll ever be. But right now, everything is stable and we hope it stays that way.
All the best to you, your wife and your family!
BonNovember 28, 2018 at 12:51 pm #97843bglassModerator
A cholangiocarcinoma diagnosis can be blindsiding. It is very good news that your wife’s cancer was caught unusually early and that she is a transplant candidate.
We have had just a few transplant patients posting, as most cholangiocarcinoma patients do not meet the super strict criteria. Two transplant patients posting as “jathy1125” and ”Maikki” describe their experiences. Searching our board for a specific member’s postings, regretfully, is not as easy as it should be. When you search, you may only find responses to their postings, not their postings themselves. If you look at the full chain for a response to your search for a user name, you can then find a posting by the member of interest. Then you can click on their user name on the left, then find all their postings using the LHS menu.
Maikki’s story in more detail has been posted on Mayo’s website. If you internet-search “Maikki” and “transplant,” you can find out more about her.
I hope you and your wife have had the opportunity to look through the resources for newly diagnosed patients. One program of possible interest that the Cholangiocarcinoma Foundation has organized is CholangioConnect, which matches patients and caregivers with mentors. Please keep in touch and send any questions you have our way.
Regards, MaryNovember 28, 2018 at 12:48 pm #97842vtkbParticipant
It may not seem like it now, but its amazing that it was caught so early and it seems you are in good hands. My wife also has PSC that was diagnosed once she had CC, but the CC was advanced well beyond the transplant stage. You can read her posts under “36 yr old with CC”. Have your wife join the facebook group for patients when shes ready, that’s where kathy (my wife) seems to get the most support/help from. I tend to lurk on here more.November 28, 2018 at 9:21 am #97838Ryan1484Participant
The last few weeks have been a surreal nightmare. After my wife gave birth to our third child, she started getting itchy and was having dark urine. We thought it was a gallbladder stone, but after many tests she was diagnosed with PSC. We live in the Chicago area so we decided to transfer her care to U of Chicago, where further testing showed CC. At that point we were devastated. However, we have since been much more hopeful, as the PET scan didn’t even show any focal points or lesions. Basically, we know it is there from the actual biopsy, but beyond that there is no actual tumor. We have been told she has a stricture in the common bile duct and that is the source of cancer, however we definitely caught this EARLY, which is wonderful. The team at U of Chicago is great and has her on the a variation of the Mayo protocol for transplant, which is cisplatin and gemcitabine for 6 weeks, followed by radiation and oral chemo, then brachytherapy, then hopefully a liver transplant. The transplant will most likely involve a whipple as well. We plan to explore both live donor and deceased donor when the time comes.
I’m curious if anyone has gone through this type of protocol? Right now, our biggest worry is that the cisplatin and gemcitabine won’t work, but we shouldn’t worry too much as this seems to be the best regiment for this cancer and I’m hopeful it will be even more effective since we caught it early. Additionally, we are planning to visit the Mayo clinic in MN to get a second opinion and ensure we are on the best protocol. My wife is only 33 and is great health, I will do everything I can to ensure she beats this.
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