June 28, 2013 at 9:17 pm #73169scheitrumcParticipant
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,
CarlJune 28, 2013 at 8:34 pm #73168jeeyoungMember
Keep us posted on your wife’s scan results! Hoping for the best possible news!
JeeyoungJune 28, 2013 at 7:41 pm #73167kris00jParticipant
Carl, you might have to deal with Dr. Kemeny then. I sure hope not.
This treatment plan is very effective: just ask me!! I was ALMOST resectable after that treatment. I had all but the DEX.
The FUDR is delivered directly to the tumor with the help of the infusion pump. It is very strong! To prep for the pump requires a fairly major surgery. I suggest Dr. Yuman Fong. I love him. Gem/Ox is also effective against different mutations of cc. The main side effect is neuropathy.
Let me know if you are going this route. I found a few tricks to get me through the systemic part.
Good luck with the scan results. I’ll be praying for good news!June 28, 2013 at 6:00 am #73166gavinModerator
Thanks for that. I hope that you both get some great news from the scan results and I’ll keep my fingers crossed for you and your wife. I agree that a break for you both with the kids sounds like an excellent idea and I so hope that it can be done. You all certainly do deserve that and I hope that you will have a great time there!
My best wishes to you and your wife,
GavinJune 27, 2013 at 10:37 pm #73165lainyParticipant
Hi Carl, I wanted to wish you a wonderful vacation, sometimes it’s the best RX.
You are to be commended as you have done and are still doing your homework and I would want you as an advocate anytime. Like my Teddy used to say, you are in your Honeymoon phase of marriage. He would tell everyone we were on our Honeymoon. I am happy you are going to Sloan, have only heard good things about Sloan. Have a wonderful vacation.June 27, 2013 at 9:35 pm #73164marionsModerator
I agree with Jason. This marker responds to various things – it is the overall trend they are looking for and that over a lengthy period of time. Some physicians don’t like their patients to look at this marker because; it can cause too much stress for the patient. But I would like to share with you that we have seen it go up in the thousands and drop to the normal range too.
Have much fun and a relaxing time in Maryland. Getting away from it all really heps clear the mind.
Tons of good wishes are heading your way for Mondays scan; enjoy your vacation.
MarionJune 27, 2013 at 8:45 pm #73163jscottMember
One thing about the CA19-9. A good friend of mine from high school is an oncologist. When discussing my wife’s case, he actually said he looks for a spike up in CA19-9 when starting chemo. According to him, dying cancer cells release the antigen, so he takes a spike up as a good sign.
Of course, you do want it to come down eventually, but I thought I would let you know a spike can be good. Hopefully, it is in your wife’s case.
JasonJune 27, 2013 at 8:41 pm #73162thebompie4Member
good luck with everything Carl–that’s so interesting about the bed–my husband had a really hard time with a regular bed when he was first diagnosed as well. (his had to do with body temp fluctuations!)
enjoy your trip!! you ALL deserve a good time!June 27, 2013 at 8:07 pm #8544scheitrumcParticipant
Well, we’ve made it through three cycles of Gem/Cis as our first treatment plan. My wife is handling it OK so far. No major effects of chemo. She has the normal side effects of fatigue and nausea. But we’ve learned how to cope with those so far. Interestingly, her nausea attacks tend to eliminate lots of “air” trapped in her but not really much substance.
Monday, July 1 will be the first CT scan since treatment started. We are ready and yet still very anxious about this test. We feel progress has been made. In the early days, we could not get her to 1000 calories/day – she had no room. Her liver was quite enlarged and pressing on her stomach, which made her abdomen very extended. Over the past two weeks, we’ve seen reduction in her abdomen and an increase in appetite and energy. She is now at 1700 calories/day.
Ironically, she had a CA-19-9 marker test last week return a value of 1100 v. 156 on 4/23/13. That scares me a little. But the other indicators are aligned – I want to believe we are making progress. I am going in to this with a positive outlook, but the realist in me cannot get too optimistic.
We are also going to switch roles for our Oncologists. We no longer want my wife’s treatment plan to be defined by the local Oncologists. We will switch to a doctor at Sloan who provided a “second opinion” originally. He has been great so far.
As an aside: Kris00j, I hope we have a better experience at Sloan. We really like our Oncologist, both from a knowledge and empathy standpoint. But I must tell you, I still personally believe Dr. Denlinger is the model for what future Oncologists should strive to be – I hope you have great success with her.
We will also ask about the new trial which has been discussed on this forum. (Hepatic Arterial Infusion (HAI) With Floxuridine (FUDR) and Dexamethasone (Dex) Combined With Systemic Gemcitabine and Oxaliplatin in Patients With Unresectable Intrahepatic Cholangiocarcinoma (ICC) ).
Finally, after the three months my wife has been through, we are hoping to get away for a few days after her CT scan. We want to go to the beach (Ocean City, MD) for a few days with our children to enjoy life while we wait for the scan results. She has not been able to sleep in a normal bed but we feel we can use enough pillows, etc. to get her through a few nights. We will work to get her ready. A change of scenery will be very beneficial.
Thank you for all you have done for me (us). I come to this site every day. And I find something every day in these posts that convinces me I must keep up my desire and drive to do everything in my power for my lovely bride (of 30 years in November). This is our new life.
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