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July 12, 2013 at 9:59 pm in reply to: Please pray for Tiffany, she is getting a liver transplant. #73473
So happy and so excited for Tiffany.
Please keep us informed.
Can I register even if we will not be able to view it live? I want to learn more about the database, but we will be in a chemo session at that time.
Thanks in advance,
In my wife’s case, there were (are) multiple masses all around the liver, plus a large tumor near the middle. In addition, there are lymph nodes affected. This combination prevented surgery from being an option. The primary option was Gem/Cis treatment plan, although Folflorinox was recommended as well. We opted to start with the current “standard” and have gone through 3 Gem/Cis cycles. Visible improvements are there – her abdomen has decreased in size by several inches. And the pain management is going well, so well that we’ve reduced the amount of pain meds.
We meet with the local oncologist on Tuesday, July 8 to review the CT scan and talk about the treatment plan ahead. We will also travel to NYC on Friday for our meeting with Sloan. We are both quite anxious for that visit.
My wife’s situation mirrors your wife’s prognosis. While a bit older (56) she was in great health and very active. She was diagnosed in mid April with ICC, very large tumor plus several small tumors in the liver, lymph nodes impacted. Surgery not an option.
I applaud you for sticking to your plan and getting treatment started. From my personal experience, I now believe that for anyone diagnosed with advanced ICC, chemo needs to start quickly to stop the aggressive growth and shrink the tumors. Time is truly of the essence. We found this out because 3 weeks after the initial diagnosis, she had to be hospitalized for intense pain. In those three weeks, all tumors had grown significantly as did the lymph nodes. We have now completed 3 cycles (6 treatments) and feel progress is being made.
My recommendations to you are 1) continue to stay close to the amazing people on this board – they have helped me greatly, 2) research possible trials now and in the future, and 3) learn as much as you can about Immunotherapy. That’s what I hope to do while preparing for the results of our first CT scan and the following meeting with our oncologist.
My best to your wife as she goes through this ordeal and to you as her caregiver.
Thanks to all of you. A special thanks to you, Kris. I will definitely reach out to you for advice if we go this route. When we had our initial visit to Sloan for the second opinion, we met with Dr. Ku (Medical Oncologist) and Dr. DeMatteo (surgical Oncologist). We felt comfortable with both. I would love to have Dr. DeMatteo perform the surgery.
We had a good day today. Tonight will be the first test in a normal bed – not the hospital bed we now have in our home. If successful, we will have cleared a major hurdle in allowing us to get to the beach for a few days.
Our appointment with Sloan is now scheduled, as is the meeting with the local Onc. Both are for the week of July 8. Which means we have several days to relax and get ready for the next round or treatment, whatever that may be.
I hope you all have a wonderful weekend,
Great news. We are glad for your results.
I hope your sister is able to get chemo today. It is such a difficult feeling as a caregiver when you hear that chemo needs to be delayed. I will be thinking of both of you today and wishing for the best.
Outstanding news. Hope you continue to have good progress.
Hoping for some great news on Monday. We’ll be thinking of you.
Please know our family is thinking of Lauren and your entire family during this difficult time. Our hearts go out to each of you.
CarlJune 3, 2013 at 10:55 pm in reply to: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS) #67776
This is a fabulous stream of information. Thank you for your energy and determination in gathering all this information and making sense of it for the rest of us.
I will send you information on my wife to add to your database.
To all who have added comments; You are definitely a great support group and I want to say thank you as a caregiver. I look forward to reading the comments in this message stream.
Wishing you well as you go through this. Just wanted to add that while my wife was in the hospital recently she started eating Boost pudding for nutrition. She was not too excited about the Boost liquid but enjoyed the pudding. I tried to find it in local pharmacies but it was not stocked. However, it can be ordered online. It may give you another option for nutrition. My wife also likes Carnation over Boost and Ensure liquids.
We actively pursued clinical trials when my wife was first diagnosed several weeks ago. In fact, we were excited to find one which my wife could participate that was also close to home (Sloan). However, it turned out the trial was put on hold because of problems getting the drug which served as a basis for this trial.
There was only one other trial in the US where my wife was a potential candidate. Not many options available (diagnosed with ICC).
Our wishes for success are with you as you go into your round of chemo on Tuesday. I will say – having heard the same thing – GET THE PORT. We listened to our original Oncologist (dismissed him for several reasons since then) who said it was an optional procedure. It turns out – as we learned later – he is opposed to ports for almost any scenario. Fortunately, a dear friend and consult told us to request the port immediately. We did. The night before our first chemo, we had the port inserted. I cannot tell you in words what a difference it made. Not just physically, but psychologically. My wife – after hearing contrary views versus the idiot doctor who said it was her decision – was in tears wanting to have the port put in before starting. Circumstances led to that decision being an easy one and her port was inserted. I will say today that having that port may not have saved her life directly, but indirectly made her emotionally more prepared for the battle.
Good luck with the surgery. Our family wishes you great success.
LOVE Dr. Denlinger. She was the doctor we visited for our consult at Fox Chase and was outstanding. She’s even helped us twice since then without hesitation. Great communicator, clearly knowledgeable in this area.
Much like you, we felt everyone at Fox Chase was very nice to us and genuinely wanted to help. We do feel Sloan has more experience and my wife liked everything about Sloan.
We feel good about both options which, frankly, is a good position to be in right now.
Best wishes to you. I hope the clinical trial proves valuable for you.