sharonandphil
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Phil ended up having two paracentesis in one week. They inserted a Pluerx tube and now he gets 3-5 liters drained a week. The fluid is malignant. His energy level hasn’t returned although the draining does help his breathing. Has anyone had experience with malignant ascites? All my reading says that it is a signal of final stages.
Thank you guys for the helpful advice and support. We are waiting to see oncologist now so he will let us know if the blood work he had yesterday shows problems with his kidneys. The radiology doctor feels that his bloating is more from stomach gasses than ascites.
Hope all of you have a good weekend. Phil is going to try and go fishing with his son tomorrow so I hope he feels up to it
Hugs to you all!
Prayers are with you Lainy! Oh yeah and Happy Birthday! Hope all goes well and recovery is quick.Thanks for all you do
Thanks so much Matt. That is very helpful and good to know. My husband’s Ca-19-9 level is currently at 949…..hoping next chemo will reduce numbers again.
I pray your journey continues to improve.
Update: Phil is undergoing radiation to target the tumor causing the pain. The tissue sample sent in for chemical trial didn’t show enough of…..whatever they were looking for.However, they will do another biopsy soon from his metastatic site in his lungs. Doc says that may give him a better chance. In the meantime, his tumor markers have grown to 949 from 450 in February. After the last radiation treatment, the plan is to begin a regiment of Folfori with the oral drug portion.
Will let you know when we get biopsy done and hear results from that. Our Dr keeps in close contact with Merck rep which is good to know☺
Thanks for all your kind words and prayers. He’s a fighter!
Matt and others,
Are you taking Keytura as a part of a clinical trial? It was my understanding that is was not FDA approve yet for cholangiocarcinoma.Thank you so much for posting this information. We are looking into the clinical triall that is currently taking patients.
Thanks Marion. Doctor is now checking on the drug trials for Keytruda and in the mean time looking into the second line drug Folfox. His numberserk are too low for chemo right now, but these options have given us hope! Thanks agsin.
Thank you for this info. My husband can no longer tolerate the Gemzar/Cisplatin regimemt. His Dr has recommended a second -line chemo drug – folfox. Hoping this works. His tumor markers are up . Have you heard anything specifically about this drug?
Thank you again Marion. There isn’t really a ‘next step’. Once chemo is unavailable, there will be nothing more to do but to keep him comfortable. I have not asked about the molecular testing, but I will mention it. I haven’t thought about that and it never hurts to ask!
Thanks again Marion. Hope you’re doing well since surgery.
Hello,
Waiting on a diagnosis is difficult. I’m sure the holidays had an effect on the delay in results. However, sometimes it is the lack of communication within hospital and dr office. We waited over a month to finally get things moving on diagnosis and treatment. You have to be persistent and continue to call. Since we couldn’t get anyone to answer us, we finally went to the oncologist’s office and stayed until someone gave us answers. It was a long, frustrating time,but things went very smoothly after that. We did find out where the break down in communication happened and the doctor thanked us for being so persistent which in turn helped to solve problems in their office.Don’t know if this helps. I thought I would share our experience.
mkc228 wrote:Good afternoon all. I’ve been watching from afar for the past 9 months but now have a few questions I hope you can help with.My wife was diagnosed with Intrahepatic CC in early Feb after a few months of increasing indigestion and belly pain. Like most I’ve read, stage 4, inoperable, incurable but treatable. She was in a trail at the University of Michigan (Gemzar and Abraxane) moving along fairly well (shrinkage) until an increasing bilirubin pointed to the need for her drain tube. “That D*mn Tube”, as I like to call it. Since August it’s been changed about 6 times leading to 3 blood infections and hospital stays. Each time she drops another 5 – 7 pounds which she can’t afford to lose!
She is now on FOLFOX as her CA19-9 was on the rise. Even though the scans show stable she was taken off the trial due to the rising numbers and issue with the tube. Still have an option to go back to Gemzar and Cisplatin should her oncologist wish. We are also looking at / for other trials to keep this thing under control.
So now you know our story — in a nutshell: keep it under control until some of the new treatment options come around for this very rare disease.
Next week we leave Michigan for 12 days in Florida. Our kids will meet us there and are intent on a nice time looking at palm trees with Christmas lights enjoying some (hopeful) relaxation for the Christmas Holiday! We had a tube exchange today in preparation (just in case) and she’ll have a “minor dose” of FOLFOX before we go to “hold her over”. (no pump!).
Here’s my ask: Does anyone have recommendations for Interventional Radiologists or Oncologists in the Naples / Ft. Myers area who we can have ready in case we need to see someone on short notice? If no specifics, how is the best way to scope out the area so we’re prepared if one of the middle of the night fever / pain fits hit and we need to see someone quickly.
All her meds are packed, I have our binder with doctors reports, CD’s of scans, history of blood work, etc. that will go along with us just in case. I just want to feel comfortable that we will know who to call first should one of these things happen.
Thanks in advance for any advice this forum can provide!
JimHey Jim,
I tried sending a forum email, but I’m not sure it went through. After reading your story, there are so many things that are similar to our situation. My husband (Phil) also has the same type of tumor that is inoperable and in stage 4 ( metastasized to lungs). He is on the Gemzar and Oxyplatin. He will have his stint ( that drains his bile duct to keep him from being jaundiced) replaced next week.
What is FOLFOX?How did she make it on the trip? Phil has very little energy most of the time and sleeps the majority of the day. He has maybe 2 good days out of every chemo cycle ( every other week).
I have been searching this forum for someone in our similar situation (spouse/type of tumor/ etc) . If you don’t mind, you can email me your response or put it on here. ( email is easier to have a ‘conversation’ to me) shdavis308@gmail.com
Anyway, my best regards to you both. Phil’s diagnosis was made in October ( even though I’d seen symptoms months before). Doctors gave him a year with chemo. Just trying to get insight .
Thank you,
Sharon DavisIrish Mac,
As Juli T said, there are drugs that are used in conjunction with chemo that increases blood sugar levels. My husband has diabetes and his blood sugar would shoot sky high after treatment. He was already on Metformin as needed, but the doctor added it to his meds regiment to take daily. It is common and we were told to keep track of it and if it spikes closed to 500 it was time to call dr.Hope this helped
SharonDarla wrote:Sharon,You’ve already gotten some great responses and advice. All I can add is to cherish the time you have be it more or less and just take things one day at a time. Feel free to come here and vent all you want. We are all more than happy to listen. We’ve all been there and are happy to help and support you in any way that we can. As Jim said, you are not alone.
Take care and let us know how you and Phil are doing.
Love & Hugs,
DarlaThank you Darla. Taking things one day at a time is definitely the best advice. I will work hard on this. As one who has an impatient personality, I will have to learn patience so that I can help Phil better.
Love and hugs back. Thank you for listening.
Sharon
