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Thank you all for your kind words and prayers. The Dr. on call agreed with me thinking that it is cholangitis. I started oral antibiotics early yesterday morning and I’m feeling slightly better now. My fever is down and the pain is better but I’m still a bit run down. That’s Cholangitis for you though.
My bilirubin was normal at the last check, but now I have that slight yellow tint in my eyes thanks to this episode. I’m not sure WHY cholangitis causes janundice but it does. Even in cases where there isn’t blockage (and I doubt that I have a blockage now). But – it is still concerning when you see that yellow. I haven’t seen that in about 8 months now!
This is a great thing! Since transplantation is still not a widely known or practiced treatment option hopefully this will draw a lot more attention to it and help keep people informed. I firmly believe this is the very best treatment option for the people that qualify for it.
I’m happy to talk to anyone who has questions about it as I went through the protocol, but didn’t end up getting the transplant. There are others here who were able to complete the protocol and transplant who have more first hand knowledge as well. Raye has mentioned that he is very willing to talk to people about his experience with this option as well, you can look him up here by using the search function. Ashley is also very knowledgeable about the option as her Mom successfully completed the transplant protocol.
Only about half or 2/3’s of the people who enter the protocol will be able to complete it due to disease progression/discovery of metastases or other criteria which exclude you from the protocol but for those that make it through it is generally considered the best chance at a cure.
Best of luck to everyone who is looking for treatment options.
I have found that my ONC is always the most pesimistic person on my care team. I think that goes with the territory. It wasn’t until this last month when I really pressed him after my CA 19-9 didn’t drop that he finally told me that he thinks “I’m really doing very well!”
From what I understand, the seeding can occur anywhere and it doesn’t mean that because the primary is in the bile duct and the mets are on the omentum that everything inbetween has cancer cells. It was explained to me that when a cancer cell breaks loose from the primary spot or enters the bloodstream it travels where it wants to until it gets stuck somewhere. The omentum is a common spot for it to get stuck because there are many capilaries/blood vessels there that are very small. It is one of the most common met spots for CCA (lungs and spots on liver are common as well)This is what Dr. Gores told me after my mets were discovered.
I’ve asked about having my omentum taken out also and got the same response from my Onc. He hasn’t ruled it out and he says that he knows an aggressive surgeon that would probably look at doing it, but that he thought it was in my best interest to wait since I am responding so well to the chemo. And – I still have a primary tumor in the bile duct. It’s still does not show as a mass, but does show with the typical PSC style stricturing so we really don’t know what it is doing. There hasn’t been much change over the last 3-4 years so we believe that the primary tumor is still small and hidden with the PSC.
I can certainly understand your frustration. Since your primary is likely destroyed I would be pushing like crazy to have surgey to remove the mets on the omentum too. But I also see the wisdom in allowing chemo to work for a few months, checking the CA 19-9 and scans frequently, and re-evaluating. It would be nice to rule out that spot on the duedenum as well. If you can zap or reduce what is already there by taking the chemo it would make the surgery more likely to be successful.
If you continue to disagree with your Onc and he won’t recommend removal of the omentum, I would strongly recommend going to Mayo and seeing Dr. Gores. He is always thinking outside of the box and I think he would see your situation as different from most others with mets.
Have to run for now, but still praying for you. Have a good Alaska trip!
Great news that your Dad is going to come home! Best wishes to your Dad and your family!
So glad that you have a new attack plan. You are one persistent patient and a great advocate for yourself – keep it up and keep us posted!
Thank you for posting this. I have done almost as much research on this option myself and all things considered it is a GREAT option if someone meets all of the treatment criteria. I was SO very close to meeting the criteria and went through the protocol but was found at the end to have mets which disqualified me.
If someone wants to use me as a resource in addition to those above, I’d be happy to share my experience. I think this option is the very best if you qualify and strongly recommend that a person gets a consult at Mayo Clinic if you think you may qualify for it.
I’m so sorry to hear about Mary’s passing after hearing just a few months ago that things looked well. It sounds like your family has had a rough few months and you’re all in my prayers. All my best to you and the whole family.
You are a great daughter and I’m sure that your Mom was very proud of you. It is great that you are doing things in the honor of your mother. Hang on to those good memories of your Mom. I’m praying that your grieving will lessen in time and that you’ll be able to smile and get that warm feeling when you think of your Mom.
All my best,
Glad to hear you are home. You’ve been in my prayers. I hope you can rest comfortably at home and that radiation coming up soon will be just the magic that you need.
Hans and Kris,
You both remain in my prayers. I know it is tough right now. But I also know that you’re two tough people. I’m hoping/praying that the hospital stuff will wrap up quickly and that Kris will heal quickly and get the OK to go home – and soon after that a super smart plan of attack can be put together.
Your fighting spirit has encouraged me at times that I’ve been really down and I hope that through the latest trials you will keep up that same fighting spirit to press on.
Prayers and hugs.
Margaret and Tom,
I have VERY strong feelings for the Mayo ERCP team. They are absolutely fantastic – and I know most of them pretty well by now. Dr. Barron, Dr. Goustout, Dr. Virtue, Dr. Lopez – they are all excellent and all they do is this procedure. They are able to stent a bile duct when noone else can. My bet is that Tom will be setup with Dr. Goustout because he is the best with stenting and installing metalic stents. He’s done 3 of my ERCPs so far.
Best of luck to you at Mayo. You’ll be in good hands!
There are many people on this website who have started chemo, had their tumors shrink, and have then become a resectable case. I would say your chances of this are certainly possible. It probably will not happen in the first few months, but over time if you respond to the drugs you can very possibly show some shrinkage.
Best of luck to you!
It was good to hear from you. I’m glad that you are started on your chemo so quickly after diagnosis. You’re already ahead of the pack because so many people have a large delay between diagnosis and treatment. And so many others in this group have measurable/larger masses, too.
Your vacation plans sound awesome! I’m following the same philosophy right now and taking a lot of long weekend type of trips. I’ve always wanted to take an Alaskan cruise as well – you’ll have to let me know what you think of it. Spending quality time with your family is such a positive thing. And it’s also great to hear that work is being so accomodating for you!
As for the past treatment choices and wondering whether you should have had brachytherapy – I don’t think you should beat yourself up over this. As I recall, DB and I were at about the same point in the protocol when I was disqualified from it. That really bummed me out because it was like we were teammates and I was looking forward to giving him a big high five at an upcoming PSC conference – and now I will not be making that trip. I am still very happy for DB, but frustrated with my own situation. I don’t know if you are dealing with similar emotions but I think it’s only normal if you are.
Take care of yourself and please keep us updated on how you are doing.
I know how you are feeling and I know what it is like to be battling this with a young family. You can’t second guess yourself and your treatment decisions. You absolutely made the right choice by doing the transplant protocol to give yourself the best chances. And UW is a great facility with great Dr’s. This cancer is tenacious for hiding and there is nothing that can be done about that, anywhere you go.
As for the emotions….. For me, the treatment/procedures when I was in the protocol were much easier than they were when I first found out that the cancer had spread. My Oncologist gave me a prescription for anti anxiety med sand that helped get me over that bump. Now I am handling all of this better and no longer need them. But I still have the prescription if I ever have a bad day for some reason.
I hope your headache has subsided and you’ve been able to enjoy your family today. Still praying for you.
Marions: Leo and I actually are reconnecting for 2 different sites, the j-pouch.org site and the yahoo/psc group. And yes, this site has been mentioned on the PSC group many times as a reference for those that develop CCA. I’m not sure why many PSCers don’t make it over here, though.
Leo: I’m glad to hear that your Onc is already thinking outside the box a little bit. The “wait and see after chemo” approach sounds reasonable and it’s reassuring that options are being considered.