New member — Wife recently diagnosed with ICC
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Jason, I never saw that you lost lost your precious wife until today. I am so sorry. I know how hard you worked on getting her the best care and you were an advocate not just for Andrea, but for all of us. I lost my dear husband (age 60) on Jan 30th and just couldn’t get myself to write all the details of those last horrible weeks. I thank you for all the research you did and continue to do. You have my deepest sympathy.
JudyHi Matt and Lisa! Just want to say how good it is to see you again and to hear the wonderful news about Lisa. You are one dynamic duo and keep up the great work. Thanks a ton for giving hope to others!
Jason,
So sorry to hear about the recent challenges that Andrea is facing. Hopefully the folfirinox will help. My wife Lisa had a robust response to folfirinox after her tumors progressed on gem-cis. Her response to folfirinox was so great that she was able to have a resection back in January. The surgical pathology report indicated that her largest mass (originally 15cm) was 70 percent necrotic due to the success of the neoadjuvant chemotherapy. I just wanted to share our experience to let you know that there is hope. Folfirinox is a very rough treatment protocol that is not easy to endure, but it also has had a dramatic treatment impact for many ICC patients.I hope that Andrea gets some relief from the ascites very soon and that the roller coaster can begin to gain some upward momentum. Your family continues to be in our thoughts and prayers.
-Matt
Dear Jason,
You, Andrea and your boys have been in my thoughts and prayers daily. While I do not know what it is like to walk a spouse through cancer treatment, I do understand how difficult it is to keep a brave face and positive attitude going with devastating new developments like the referred pain, side effects of pain meds and now the malignant ascites. I can’t put into words the PROFOUND desire to take your beautiful wife’s suffering away but I do understand that feeling as I had that kind of love for my sister, Nicole. You are a beautiful example of a husband and father. From the beginning, you have provided Andrea with what she needs the most: love, physical comfort and emotional support (as well as logistical support). It must have been very difficult to attend my sisters memorial but you and Andrea gave of yourself and came.
This is just another example of your selfless love of Andrea. Our family sure appreciated your presence as well.
Your sound treatment decisions made together with Andrea and based on extensive, research help not only Andrea but all those in the CC family because you chose to share them here. Yet, as I understand all too well, the challenge with limited options make it feel sometimes like you are flying by the seat of your pants and managing things literally one day at a time. I know I am “preaching to the choir” with all this but really just want you to know you are not alone. I’m hoping the current chemo will knock the cc down and with that reduce the ascites. Is Andrea on a diuretic? (Those can have side effects like dehydration/electrolyte imbalance) but sometimes helpful. Also, I pray the genetic testing can provide more tx options soon. Are you looking at the PDL immunotherapy trial at UCSF? Please feel free to call if you want to ask about it or any other questions.Sara
Hi Jason,
Thanks for the update on Andrea and I am real sorry to hear that things are not going so well right now. From what you say, Yes Andrea has been on the down part of the rollercoaster ride fot too long now and I am so hoping that it is time for the ride to move upwards again! My fingers are crossed that the chemo is indeed causing shrinkage and that is why the shoulder pain is lessening for Andrea.
It’s a tough spot that you both are in right now but do not give up hope. You know that we are all here for you and are cheering for Andrea too. Loads of positive thoughts heading you guys way from over the pond.
My very best to you and Andrea,
Gavin
Jason, I am so terribly sorry to read of Andrea’s bumpy ride. I am hoping the Folfiri works and that the side effects lessen for her. You never know how strong you are until “strong” is the only choice you have! I know how hard it is to watch our loved ones go through this but you are doing all the right things. If the shoulder pain lessened I hope it is a good sign the Chemo is working. Best wishes to you both!
I just looked back at this and realized how much had changed since that last update. They talk about the roller coaster, and it has been so true for us. Unfortunately, the roller coaster has been mostly going downhill since the last update.
Starting in late June, Andrea started to have pain in her shoulder. It turned out that this pain was “referred” pain. The pain was really from one of the liver tumors pushing on the diaphragm, but her brain interpreted the pain as coming from her shoulder. Andrea got another scan in early July that indicated there were now 3 tumors, and the biggest was 3.5 cm (the one causing the pain).
The shoulder pain had been steadily increasing, and with the tumor growth the decision was made to switch from xeloda to GEMOX. The hope was to shrink the main tumor away from the diaphragm to allow for easier local treatment. Unfortunately, this did not work.
About a three weeks ago, started to get bloating in her belly. We first thought this was just constipation caused by all her pain meds, but eventually we figured out that she had developed ascites. Not a good development. Our oncologist said there were basically two possibilities for the ascites. One was that the fluid was a reaction to the tumor that was irritating the diaphragm (this was the leading hypothesis), and the other possibility was that the cancer had spread to the abdomen.
Andrea had a paracentesis procedure where they removed 3 liters of fluid. They tested the fluid and determined that the fluid was malignant. This basically meant that the cancer had left the liver, and progressed to somewhere in the abdomen. Malignant ascites is not a good development. About 11 days after her first paracentesis, she had another where they removed 5.2 liters of fluid. The fluid build up is very uncomfortable, so she is now on a weekly schedule to try and keep it better controlled.
What is the plan? Well the number of possibilities seems to be much more limited. She has switched from GEMOX to FOLFIRI. This has hit her hard after just one treatment. Heavy fatigue and painful cramping. It has helped the shoulder pain though, so perhaps it is working. We will see what the tumor marker shows next week. Andrea also had a biopsy done that was sent off for genetic testing. We should get the results for that on Oct. 6. I am hoping that the genetic testing finds something that we can either target with an off-label treatment, or qualify for a clinical trial.
So that is the update. Lots of twists and turns. So many have been negative recently, we are really struggling to try to stay positive. Hopefully we will get some good news soon.
Best to all,
Jason
Thanks all for the ideas and the encouragement. We are not at all thinking about giving up, so not to worry on that front.
The basic plan is to do chemo and then either radiation or ablation on the (hopefully) shrunken tumors. It sounds like they would lean towards ablation given the previous radiation and the potential for overlap (they are checking on this).
They thought there was evidence that Xeloda kept the tumors in check since Jan, so the plan is to start there and monitor CA 19-9 for a 6 weeks or so. If it keeps rising, we will have an early scan and change strategy (tougher chemo or local therapy).
Jason
Jason…..I can’t add much other than my heart and prayers are with you and Andrea. As so many have already said, there are still things to be tried and you have been a fabulous caretaker by researching the possibilities for treatment. That’s a job in and of itself. Hugs to you both.
Julie T
Jason,
Please know we are hoping the best for Andrea and for you. I am familiar with the aggressiveness of this disease. As a caregiver, you can never relax. You have to stay focused on dealing with the reality of each day while looking for alternatives for improved response to this disease.
You have done so much to research all scenarios regarding treatments and trials. You and Andrea will make the right decisions as you continue your journey.
I wish I could do more to help both of you right now. But I want you to know Lynn and I will be thinking of you.
Carl
Hi, Jason,
Sorry to hear the findings about your wife.
The rate of the tumor growing (1 and 2.5 cm) in the last 2 and half months seems relatively fast to me which similar to mine. The good news is that there were no mets outside the liver,
While I was at Mayo last Feb., I asked the oncologist about the liver function and the metastatic growth in the lymph nodes, which one should I worry the most?
He told me that the most important thing is to keep the liver function as normal as it can be,the mets are secondary . So I guest it can apply to everyone who have this cholangiocarcinoma.
Since your wife had IMRT done, what is the Stanford interventional radiologist says about the use of radioembolization at this point ? Can it be done?
God bless.Hi Jason,
Thanks for the latest update on Andrea and I am sorry to hear of these latest developments on the tumours. GRRRR to them. Please though, do not give up hope here and tell Andrea the same. Major bummer as you say but you know all about the up’s and down’s with all of this. Hoping that this just a bump in the road and that the onc will have plans to deal with this when you meet next Monday. Please let us know how the meeting goes and you know that we’re all here with you both as well.
Paris sounds good, I was there many years ago as a kid. Bit of an eye opener for a 13 year old lad!!
Stay strong Jason and know that I am thinking of you and Andrea.
My very best to you both,
Gavin
Jason,
This disease is a chronic illness with many ups and downs. Please don’t give up hope. I have had five reccurences and yes, it is disappointing but new treatment options are popping up, have you looked at any clinical trials?
LisaJason,
I’m truly sorry to hear of Andreas setback. Please let us know what the onc suggests at today’s appt. keeping you and Andrea in my thoughts!
WillowJason….you might find the below article informative:
http://theoncologist.alphamedpress.org/content/9/4/385.full re: nodule detection and observations.
Hugs,
Marion
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