March 27, 2012 at 2:08 am #59150pamelaParticipant
I am so sorry for Sarah and you. I hope Sarah will be comfortable with her hospice care. I pray that you and Sarah find peace.
Love, -PamMarch 27, 2012 at 1:41 am #59149lainyParticipant
Dear Les, My heart is just breaking for you and I hope all goes well so Sarah can return home Wed. Hospice will keep her comfortable and take care of her so that you can just sit by her side and let her know how loved she is. I am sending many prayers your way and can only say to be strong!March 27, 2012 at 12:45 am #59148
Sarah is done here at MD Anderson. We hope to have her stable enough to ambulance back to our home for hospice for her final leg. Tentatively scheduled for Wednesday. I don’t know that I can share anything at this point that may be helpful in another’s efforts to cope.
God bless you all. A severe mercy perhaps.March 24, 2012 at 2:44 pm #59147
Thanks to all. I am technologicaly challenged. Have lost 2 responses to you kind folks. Real people, real messages, real comfort. Sarah is doing better and will be moving from ICU today. Dr. Javle a real champ; little CC conversation, second seat to kidney stuff. All of you have been spot on in your comments and we greatly appreciate the course knowledge. There have been numerous “things” that have taken place in the last 72 hours and I look forward to sharing when time permits.
Thanks, again to all of youMarch 23, 2012 at 12:11 pm #59146pamParticipant
Dear Les, Just wanted to welcome you to the site. I recently moved from the Ocean Springs/Biloxi area after living there most of my life. My dad was treated for CC there. His oncologist was Dr. Lydia Latoure. He also had an attempted resection at Ochsners in New Orleans by Dr. Bolton. I hope Sarah is feeling better soon.March 23, 2012 at 5:05 am #59145pcl1029Member
I am an intrahepatic CCA patient ,63 years male, for 34 months ,so there is hope for your wife because of the age factor is on her side.
The increase of WBC is NOT the common occurrence for this disease.In fact neutropenia (decrease of WBC) and anemia are side effects of the GEM/CIS chemotherapy.
Acute Renal Failure (ARF) is the major side effect of cisplatin and the toxicity is dose related and accumulative and therefore cisplatin should be discontinued; Kidney dialysis is NOT part of the expected journey at this stage of treatment plans.
I am not a doctor,and the suggestions by your many MDs in your family may be better than my observation.
I think the increase of the WBC is related to the damage done to the kidney by the cisplatin over the course of treatment since cisplatin nephrotoxicity can be progressive.
I do not think MDA will continue the GEM/CIS after your wife’s recovery of kidney failure and the leucocytosis.
Avastin may be of use in Abdominal metastasis (ie: peritoneal carcinometosis).
With regard to expectation and management of this disease; I will reserve my comment until I know more about your wife’s condition after the current unexpected event.
God bless.March 23, 2012 at 4:02 am #59144peggypMember
Sorry to hear about Sarah, but you have come to the right place for support and information. My husband, John. has Stage IV ICC. He was diagnosed in August ’08. Up until that time. he had been very healthy; ran 4-5 miles at least 3 days a week and worked out at Gold’s Gym. His first symptom was a nagging little pain in his right side. He had a resection and the surgeon ended up removing his gallbladder, over 70 percent of his liver, right kidney, part of colon, and part of stomach cavity. In March ’09 he presented with multiple tumors in his liver. He has been on three different chemo cocktails and just had a chemoembolization done four weeks ago. Gem/Cis was affecting his kidney function so he had to stop that. Just as the others have said, Sarah is in good hands, so stay strong and positive as I believe attitude plays a big part in fighting this cancer. Sending well wishes your way, PeggyPMarch 22, 2012 at 11:02 pm #59143gavinModerator
Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear about Sarah. But I’m glad that you have joined us all as you’ve come to the right place for support and help, and I know that you will get tons of both from everyone here.
I so wish that I could help you more specifically with what your wife is going through right now, but my dad’s CC was different. Please don’t give up hope though. Like Lainy says, your Sarah is in good hands and the doctors at MD have great experience in dealing with patients with CC. We are all here for you and will help if we can, please keep us updated on how Sarah gets on.
My best wishes to you both,
GavinMarch 22, 2012 at 5:25 pm #59142marionsModerator
Les….in re: to the high white blood count…I assume that an infection has been ruled out. Renal failure is not unusual and has resolved in many instances. I would expect for Sarah to be hospitalized for some time. Each day will bring forth another explanation. Hang in there and don’t give up on hope. We thrive on it.
MarionMarch 22, 2012 at 3:12 pm #59141lainyParticipant
Dear Les, welcome to our rextraordinary family where you will find the Brave Heros of the world. I am so very sorry to read about your wife, Sarah. My husband did not go through what Sarah is experiencing but I do know you are in one of the best Hospitals for CC. At this ppoint I can only send thoughts and prayers to you and Sarah but please do try and keep us posted. I know you will be hearing from more members. BTW one of our most beloved Doctor’s at MDA is Dr. Javle, he is one of the BEST!March 22, 2012 at 2:44 pm #59140pamelaParticipant
I’m glad you could finally post your introduction. Your Sarah is my age. My daughter, Lauren, only 26 is the one with CC. I’m sorry to hear Sarah is not feeling well, but I think she is in the best place in MDA. I hope they can give her all the help she needs. I don’t have personal experience with the problems you are facing, but there are so may caring people on this site that can give you advice. I’m sure they will be chiming in soon. This disease is so rare that it is such a blessing to have this website. We are all like a family and care so much about each other. I am constantly blown away by the outpouring of care and love I receive from this site and I know you will appreciate it as well. I hope the doctors work their magic and your wife begins to improve. God bless you and Sarah.
-PamMarch 22, 2012 at 2:26 pm #6549
Thanks, Pam, for intro instructions. However, just spent 35 minutes and then lost connection and info input here at MDA. Try again, briefly. My wife, Sarah, 53, was diagnosed with this disease after a gall bladder surgery (Dec 16) revealed her liver was fraught with cancer. After all tests and MDAnderson, Stage IV, intrahepatic cc, metastacised liver, abdominal wall, lymphnodes, bile duct. Gem/cis since January every 2 weeks in Ocean Springs, MS. No bone marrow biopsy, even though they’ve been watching White blood cell count. Has increaed from 54K around dignaosis to over 250K presently. Arrived MDA for staging, blood tests were “abnormal”, went to ER and then into ICU last night; kydney failure, 2 units of blood, dialysis last night and one again shortly and an aphresais(sic) to knock down the WBC count. Unexpected occurance? Haven’t gotten to any staging, don’t know when? Any experiences with high WBC count; family member MDs suggest a second”primary” cancer. Is the kydney failure/subsequent treatment (rigt now) an expected part of the journey? Thank you all for the opportunity to have learned about this disease since following your discussions since December. Management of expectations is paramount and your thoughts are greatly appreciated. We have enough MDs in our family but none having a direct family member with CC until now. BTW, Sarah was a very high energy, self driven alpha female, mother of 2, step mom to three, successful restauranteur.
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