rick-kamp
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Ask your Dr. for a prescription called URSO (Brand name Actigall). It is used to dissolve gallstones mostly, but has some off label treatments. I took it to thin bile and restore good bile flow due to my liver disease (PSC) and then for the subsequent cholangiocarcinoma. It takes awhile to build up and thin out your bile but it will do the trick.
Rick
Update: The planning angiogram went great. There was no (or minimal) shunting to the lungs, which is one of the concerns with this therapy. So I am all set to go – just waiting on some final details such as the dosage and date of procedure. The dosage should be adequate to acheive the desired results because my liver is not cirrohotic and because there is no shunting, both of which require a reduction in dose. We are hoping to have this scheduled for 2 weeks out, but it depends on when the product is scheduled to arrive at the hospital. Interestingly, the product must be used within a very tight window of time after it arrives at the hospital. And, it is “made to order” so noone else can get my dose and vise versa.
As for the success of the treatment, one of the physicians told me that for cholangiocarcinoma there should be a 90% response rate. That is huge! And he said that a lot of the responders have complete responses, even up to 100% tumor necrosis. I wonder why this isn’t more well known and why so many people are pointed the route of systemic chemotherapy for unresectable cancer. If this treatment is all that it is cracked up to be, then we are on the verge of a major breakthrough. I am just speculating, but I think that a lot of the data that hospitals have on this hasn’t been fully released or criticized yet and that it hasn’t been a widespread treatment due to the difficulty in getting insurance to pay for the procedure and the overall cost.
Anyways – that is the latest. I have my thumbs up for treatment and my hands folded in prayer. I promise to keep you all updated on how this treatment goes and the results that I get.
Rick
Jenny,
I saw your post on the Yahoo PSC site but didn’t have a chance to respond. I’m sorry to hear about your Josh’s news. It sounds like it has been a tough year and I’m hoping the best for you.
The Mayo Clinic is the best place to be, in my opinion. Especially since Josh has PSC and CCA and considering Mayo engineered the protocol for liver transplantation for cholangiocarcinoma. I assume this is why you are be referred to Mayo to see if this is an option for Josh. The great news is that if he qualifies for the protocol and makes it through, he has a great prognosis. You can check out the new section on this site called “liver transplantation” for a little bit more info and some contacts.
I also have PSC and cholanciocarcinoma. I was diagnosed last year and evaluated at Mayo in Rochester for the transplant protocol. I was accepted, but unfortunately my cancer progressed and was found to have spread when they did a staging surgery (part of the protocol). I am taking systemic chemotherapy now with some limited success but still remain hopeful. There are several others on this site who have completed the protocol and are now cancer free.
Best of luck to you and to Josh.
Rick
minh,
Try not to put too much value in the CA 19-9. At the highest point, mine was up to over 14,000. The next week it was down to 8,000 and moving down since then. The reason it was so elevated at that point was an infection – just as your surgeon mentioned.
Rick
I am a classical risk factor progression case. Autoimmune disease since at least 11 years old – at which time I developed Ulcerative Colitis. Developed colon cancer at age 27 at which time it was discovered that I had Primary Sclerosing Cholangitis (probably the LARGEST risk factor with up to 40% of patients developing cholangiocarcinoma). Five years after that and just after turning 32, I developed cholangiocarcinoma.
Looking back, at the string of events, you would think that I knew this would eventually happen. But the Dr’s did a good job of keeping my mind off the topic and touting advances in research, treatment, cures, etc.
Obviously if anyone had a better inclination this would happen, I would have received a preventative liver transplant and jejunoectomy in which my diseased liver is disposed of and the intestine is rerouted to serve as the common bile duct.
Rick
Hollie,
I am sorry for your loss. Recently I have done a lot of “search” functions here and found a lot of wisdom and care in Sophie’s posts. She was a great woman and I’m happy that she is no longer suffering.
Hugs and prayers to you and your family.
Rick
Jtoro,
I commented on your post in introductions too, but just wanted to touch on hwo you think you are responsible for the cancer spreading and not catching it early. THat is simply not the case. This cancer can seed to other locations and not be detectable for a very long time. If you read my story you can read about this first hand how my team at Mayo felt that my cancer had seeded to my peritoneum probably at least a year before my diagnosis and the tough part is that it wouldn’t have even been detectable there if we found the primary earlier and had tried a surgery. So, in a way, for me it was good that the mets were not found until later in stage to save me from the difficulty of a rough surgery only to not result in a cure.
This is a silent cancer and very difficult to detect. I was on a screening regiment for it because I had a risk factor and it was STILL found at a late stage.
Rick
Jtoro,
I can relate to how you feel about your family. If you use the search function at the top, you can see some of my previous postings about my family. A few things that I would recommend to you is: don’t be afraid to ask your Oncologist for some medication help with the anxiety. I did and am taking Ativan as needed which has been helpful because I was a wreck at first and have slowly gotten better. Secondly, I have found a lot of comfort in writing letters for my kids and family on important dates in the future. I’ve been lucky enough to survive longer than anticipated at first so I’ve been able to open up some of these letters and share them in person. I was able to put a lot of thought and effort into sharing important dates only in letter format ahead of time (for example, for my kids’ baptism, graduations, etc).
The other thing that you need to realize is that not everyone knows how well they will respond to treatments or what kind of developments will be made in the near future or even the near past which are becomng available. When I was diagnosed (mets to peritoneum and the primary) I was only given 3-6 months because the peritoneal mets were extensive. But they were wrong and here I am nearly a year later with no evidence of the peritoneal mets on imaging any longer. The very thing they thought would get me responded so well to chemo that it isn’t visible anymore!
I was diagnosed when my wife was 7-8 months pregnant and we had a 2 year old daughter at home. We spent weeks out at Mayo Clinic away from our daughter and it was a very difficult time for us. I sympathize with how you are feeling and will keep you in my prayers that the treatment will be effective for you and that you can find a way of coping and sharing with your children when you think the time is right.
All my best to you and your family.
Rick
I just wanted to mention that I have a metal stent and it worked great for me for about 9 months before it clogged up. Healthy tissues as well as cancer tissues can ingrow through the mesh. In my case, there were able to clean out the metal stents well but decided to put plastic within the metal to keep this from reoccuring and I’ll have plastic stent changes every few months to prevent any problems.
There are several things that can be done if the metal stents become a problem. One of the most recent treatment ideas for this if there happens to be difficulty with the metal stents is photodynamic therapy to kill the tissue ingrowth to the tissues. But – the normal course of the metal stents is usually not too invasive and is normally well controlled with maintenance ERCP’s.
Overall, I strongly believe in the metallic stents providing long lasting and safe relief from Jaundice symptoms.
Rick
JDH,
Welcome to this place. You have had a good welcome and some good advice. I just wanted to share my experience with you regarding Jaundice and stents.
I first became Jaundiced in September 2009, shortly after my diagnosis. I’ve had a stent in place since that time and it has relieved the symptoms of Jaundice since then. Stents can be very good therapy and help tremendously. They have in my case. And they aren’t necessarily a bad indication of prognosis.
Best of luck to you and your family. Please keep us updated on how things are going.
Rick
Isisman,
Plastic stents are prone to infection and getting clogged up so they are typically replaced every 2-3 months. A metal stent is considered permanent because they cannot be removed once they are deployed, however they may need maintenance to be cleaned out and it is common to sometimes place a 2nd set of stents inside the metal stents if necessary (I have this right now, plastic inside the metal stents).
I hope this helps.
Rick
Andie,
I am suprised that your Dad’s Onc isn’t letting him have the chemo at this level – unless there is something else going on with his liver. Do you have other liver function test levels you could post such as ALT, AST, ALk Phos, and Albumin? If these are all relatively normal, it would mean that his liver isn’t really in distress and it should be safe to do Chemo. But maybe the Onc is being extra careful.
Also – what antibiotic and dose is your dad taking? If it is Cholangitis, Ciproflaxin 2 X 500mg/daily is the usual treatment. And it is safe to take longer term if needed.
One last question – how long has he had the metal stents in? This was the cause of most of my infections/cholangitis as the tissue (not necessarily tumor) grows through the wire mesh in time and blocks/occludes the stent. By the time I decided I needed to have it looked at (bilirubin went to a high of 2.9), both of my stents were blocked. Wow did I feel better after that was cleaned out. It had been about 8-9 months since they were installed. So – this is something to keep an eye on also.
Lastly – Kathy I’ll look into posting an easy conversion tool for us all to use soon. I just did that match quickly but it is more involved to explain.
Best wishes.
Rick
Yes, the UK standards for bilirubin are different. The “in range” values are between 3 and 17 micromoles per liter, which is quite different from the US at .1-1.3 mg/dl. So, converting the bilirubin of Andie’s Dad to the US lab standards he would be at roughly 5.7mg/dl. At this level, it might even be difficult to detect yellowing in the skin or eyes, especially if it is moving up and accumulating.
It sounds like your Dad is on antibiotics, could this possibly be for Cholangitis? When the bile ducts become infected it is called cholangitis and it almost always raises the value of the bilirubin. I’ve had this occur to me at least 3 times in the last 5 months but to stent issues and each time it has come down within a couple of weeks with antibiotics. Hopefully this is the case with your Dad and within another week he will be back on track. I think I lost 1 week of chemo due to this, which was a welcome break anyways.
Best of luck to you and your Dad, Andie. I hope to hear that his bilirubin levels have come down the next update you give. Sending healing prayers your way!
Rick
Today IS a better day. I am starting to regroup a little bit. A group of my pastors from Church and some close family came over this afternoon to sit with me and pray with me for healing according to James 5 (look it up, if you are interested). I know that not everyone here has the same beliefs that I do, but this was a big step for me and has helped to raise my spirits. I believe that healing is very much a possibility, even if it doesn’t happen very often. So, while I hope that I can be miraculously healed, I am also starting on my Xeloda tonight to give medicinal healing a chance too.
Thank you all for your kind works and for trying to lift me up when I needed it the most. Even a swift kick in the rear, if needed. I get into these funks more often that I would like to admit.
Rick
Insurance officially denied the treatment with everolimus and appeals to the drug company for compassiante allowance did not work either. I have one more route I can take which is the appeals process with insurance but that takes quite some time. So I start Xeloda tomorrow. I’ve been off chemo for awhile now while all of this has been going on so I’m anxious to get back on and hopefully it will be effective.
It’s been another one of those downer days. Maybe it is the anticipation of taking the new drug or maybe it is that I just haven’t been feeling great. Either way, I hope that I bounce back soon and start having some better days.
