Forum Replies Created
Leo – I’ve been having problems with my email client so please let me know if you didn’t get my email today passing on some of my thoughts.
I almost forgot about our j-pouch.org connection as well. You will notice that there aren’t a lot of people on this support site that have the PSC to CCA progression. Most of the folks here have incidental or other reasons for developing CCA. Nonetheless, there is still good information and good people here so I hope that you’ll find it helpful. Feel free to email me with any questions or anything as well.
Praying for you and hoping that you can enjoy the spring weather!
I’m sorry that you are here, but I am happy to be the first to welcome you to be here. You and I have shared a similar journey and since I already know a lot of your story from PSC boards I feel like I know you already.
Your path is so much like my own. Ulcerative Colitis for 15 years (a close call with colon cancer and J-pouch created), then diagnosis of PSC, then Cholangiocarcinoma. I hope that your treatment and success with it with ALSO be like my own. As I shared with you in my email, I have had pretty good success so far with my treatments and it sounds like my CCA was more advanced than where you are right now. All hope is NOT lost!!!
If you don’t mind me asking, what chemo are you taking? I’m going to guess maybe Gemzar/Tarceva?
Praying for you!
RickMarch 30, 2010 at 7:59 pm in reply to: Sensitive – Ideas for leaving legacy and tips/love for family and kids #36724
This is such a hard question to ask in followup, but I’m wondering if any of you caretakers can identify when you knew that the end was near? Did you have much warning?
There is so much to do and so much to be said I don’t want to run out of time before I get to do it all – and I don’t want to wear myself out trying to do too much, either. This is so hard!
I feel for your mom and your family. I will be praying for peace for everyone and that the pain/discomfort your mom is feeling can be relieved with the pallative care she is receiving.
Kris and Hans,
So sorry to hear about the no go surgery and also hopeful with you that there may be another shot at it in the future. In the dictionary next to “perserverance” is a picture of Kris. I pray that it will pay off for her and something great will happen with treatment.
My prayers are with you both.
RickMarch 20, 2010 at 6:06 pm in reply to: Sensitive – Ideas for leaving legacy and tips/love for family and kids #36717
Lainy and Kris,
Thank you for your wisdom. It is appreciated!
Sorry to hear of the official diagnosis of Klatskin, but glad that you finally know what you are up against. I don’t want to give you false hope, but there is a treatment option for non resectable patients that involves radiation/chemo followed by a liver transplant. It is commonly done at Mayo Clinic, and a few other major centers. If you haven’t looked into this, you should contact Dr. Gregory Gores at the Mayo Clinic in Minnesota to see if your dad is a candidate for it.
Regarding the biopsy, I would also urge some caution on allowing them to perform surgery to get the biopsy as it can sometimes causing seeding of the cancer. If this happens, then treatments such as the transplant protocol and PDT may not be options any longer. In fact, I am fairly certain the transplant protocol would be out as an option because they don’t like patients to have any “surgery” in the affected area before the protocol begins.
I hope this helps. Best of luck to your Dad and your family.
I wouldn’t be too concerned about things yet. It could all be coincidence. And, it’s entirely possible that there is a minor infection. After any liver surgery that involves the bile duct there is scar tissue that can form and obstruct or get inflammation. It’s common to have infections in all surgery cases – ranging from very minor to full blown and they can occur even years after surgery. I have had the fortunate experience of talking to quite a few liver transplant receipients who have these types of infections from time to time and are cured with a simple dose of antibiotics.
So – go to your Dr.’s appointment, but take a deep breath and don’t jump to any conclusions. I’m betting if it is anything significant it is just an infection.
That is great news for you and your husband! The Mayo Transplant protocol is a GREAT program. If you make it through you have excellent survival odds – and given that he had PSC as well the new liver is just a bonus. So happy for you both.
I just wish more people qualified for it or there was another treatment available that is as successful! I was in that protocol right up until the end and staging surgery found peritoneal mets – so I was taken off the protocol.
Great news for both of you! Yay!!!!!!
I wouldn’t put too much stock in the CA 19-9. It can be a useful tool to monitor progress, but it isn’t always entirely accurate or giving a good picture of what is happening. Mine has been as high as 14,000 and it is thought that it was elevated that high because of an infection in the bile ducts. While it is still high, it has come down substantially since then!
I hope that your MRI will go well and that your surgery will have done the job at removing the cancer. Hang in there!
I would strongly recommend that you get a 2nd opinion regarding the liver transplant. If it IS localized and there are no mets, and the tumor is less than 3cm, then you are usually a candidate. It is true that immunosuppressants do cause cancer to spread quickly, but with the Mayo Protocol for treatment with chemo/radiation followed by a transplant the 5 year recurrance free rate is over 90%. This is the very best option for the right candidate – and unfortunately a lot of Dr’s don’t know about the success of this protocol.
Whatever route you go, I hope that things will work out well for you. I’ll keep you in my prayers that it is localized and has not spread!!!
RickJanuary 21, 2010 at 12:48 am in reply to: Allergic reaction to Oxaliplatin (part of Folfox treatment) #34903
I had a reaction to the Oxaliplatin also at my last infusion. That was about 2 weeks ago. My oncologist said the same thing that he wants me to stay on it so has taken some additional precautions: I’m to take prednisone/steroids the night before and morning of my next Ox. treatment and they will give me some benydrl and different steroids through IV immediately before the Ox. infusion. In addition, they will slow the infusion rate down to 3 hours instead of 2. I will have my next treatment of this coming up on Tuesday so I’ll try to remember to post how that went.
I’m in the same boat though – I want to keep going on what is working for me!!!! This is a little risky and the Onc gives me about a 50/50 chance that this will work without another allergic reaction and is more concerned about the possibility of anaphalactic shock. I’m praying for the best!
The MRI will probably give you a better view of the entire bile duct anatomy. The new 3D MRCP’s are extremely detailed but can’t always differentiate scarring/inflammation/benign strictures from a cancer. But the PET scan will still be better at finding the “hot spots”/cancer.
Just my $.02 and what I recall from my Mayo Docs when we were talking about all the testing I was having done. I even remember them saying that the MRCP is detailed enough even see tiny tattos on the skin in amazing clarity.
Yes I am using a port – have been since day 1. I wish it was as easy as that!!!
I met with my oncologist today and he wants to give it another shot with the Oxaliplatin. He feels that it is working too well to discontinue it without another try and more preventative measures. My CA 19-9 has gone way down and there has been good improvement in scans as well so I tend to agree with him!!!
So – he is having me take 20mg of Prednisone the night before Oxaliplatin treatment, plus 20mg the morning of treatment. They are also giving me a different type of steriod through IV right before my treatment. He thinks that this will prevent another reaction and gives me fairly good odds that it wouldn’t happen again. Nonetheless, he is having me watched closely for the next treatment.
I am happy with his plan and agree it is worth the risk. We’ll see what happens! We also talked about the possibility for having surgery on the peritoneal mets. He told me that there is a surgeon who is agressive that he could refer me to but thinks that I need to show some more improvement before it would be considered. I think that would be great if we could get rid of the mets because it seems like it would open up some more options for the primary tumor (a fairly small klatskin). Have any of you heard of surgery to remove peritoneal mets?