New Diagnosis: Faith Hope and Love for Mom
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Jason,
I don’t know if you have sought out Mayo Clinic at Rochester yet or not, but they will review the case in 2-3 days (probably 2). My surgeon there was a Dr. Kaye Reid Lombardo, who only does liver and pancreatic surgery. She is a very gutsy surgeon who doesn’t shy away from difficult surgery. My surgery was pretty clear cut,….could have been done any number of places with no question about it (tumor inside my left lobe….so she just cut out the entire left lobe). But, I know she has done some absolutely incredible surgery on people who were previously told they were inoperable. One woman I know, was turned by by at least two other large institutions and even one other surgeon at Mayo. She is still alive with no recurrence a number of years later.
You can call Mayo Clinic and talk to their oncology department …tell them everything you know….and they will review it. If you can somehow fax any reports or overnight copies of scans….it will help.
Julie T.
Thanks Cathy, Lainy, and Darla for both your kind words, positive thoughts, and much needed prayer.
Still praying that Dr. Chapman can offer hope and much needed encouragement.
Best,
Jason
Jason,
I totally understand all that you are feeling and your confusion of it all. Sorry to hear this and hope that something can be done and another opinion can be gotten. From what I recall my husband had similar problems and they eventually did an external drain that exited in the back on his right side. Hoping you can get some answers tomorrow and that something will be done.
Thoughts and prayers for your mom, you and your family.
Hugs,
DarlaJason, good work and keep pushing until they give your questions understandable answers. You have a right to know.
Jason, sorry about your mom I keep praying that Dr. Chapman will be able to help.
I am obviously very biased on transplants as an options and like you wonder why more CC patients aren’t candidate. I am sure one is there is a major shortage of organs, and for a long time most doctors wouldn’t consider it for reasons of reaccurance, no immune system to fight off reaccurance and to quote Sloan Kettering “it is illegal to give a perfectly healthy organ to some one with cancer”!! That was told to Wayne Parson when he brought his wife to them, he then contacted Dr. Chapman, unfortunaley his wife didn’t make it but she did make it to the transplant list, Wayne Parson always says if he found Dr. Chapman sooner his wife would still be here. Wayne Parsons post can be found on this site.
Please contact me if you would like to contact Wayne, he is very knowledgable and helpful.
CathyHi Lainy. Emory was the 2nd opinion (where she has been for the past 5+ days). I’m waiting on Dr. Chapman at Barnes-Jewish to get back with me about a 3rd opinion. I’m contacting Memorial Sloan Kettering tomorrow to see if they can do anything.
They said that a bile drain (PTC) through her side (external drain with the pouch) can’t be done nor biliary surgery. We are supposed to find out tomorrow. It just doesn’t make since. I guess the PTC (percutaneous transhepatic cholangiography) can’t be done since a tube can’t be placed into her bile duct at all? I’m at a loss for words.
Thank you for your good thoughts and prayers.
Best,
Jason
Dear Jason, when my husband was in this situation they placed an external stent. came from the bile duct and exited out his side in to a pouch. He had this stent for a couple of years, even golfing with it, Has a 2nd opinion been sought??? This is extremely important as different eyes see different things. Sending out prayers and good thoughts.
Dear Jason,
I am so sorry to read this post. I agree that no one deserves this. When I first joined this group, I was surprised by seeing so many sending hugs. However, as I started to read and hear of others stories, I realize Marion has it right. So many of us wish we could be there to give the hugs in person. Instead, I make sure to hug my loved ones a bit tighter and think of all of our board members. Your family is in my thoughts and prayers.
Take care,
CatherineThanks Marion. My mom got remarried last October to a great guy. He called me to let me know. He obviously was real shook up. I agree, we all deserve to know why a drain could not be done? I guess for a drain to be done the tube still needs to be able to go into the bile duct?
I am 700 miles away helping my grand parents. My grandmother (my mom’s mom) is recovering from breast cancer. She had surgery the week after my mom found out that she had a mass on her liver.
The onc team is supposed to come by in the morning to talk to them. I really don’t understand what for as now it is not an option. Out of all the posts that I’ve read on here I have not seen anyone not be able to at least have the bile drain done if the stents were not an option. Pretty much everyone that I’ve seen was able to have the stents.
Does anyone know why transplants are automatically ruled out for those who have CC? Especially those who have CC that has not spread? I could be wrong, but it seems as though they are just cast to the side and forgotten about.
Best,
Jason
Jason….not the news anyone wanted to hear. I assume for endoscope or percutaneous dilation to be ruled out as well. Is that correct? It doesn’t hurt to ask and definitely you deserve an explanation.
Hugs,
Marion*** Update, Monday June 15, 2015 ***
Mom had the ERCP procedure done this evening. The doctor’s came out and said there was nothing else that they can do. The tumor had constricted the bile duct too much to do any stents. I don’t understand why a drain could not be done.
Obviously without some type of drainage, her jaundice will get progressively worse. Chemo is now not an option since they can’t clear up the jaundice. I take it the bile will just continue to back up until it causes sepsis. Sepsis will take your last breathe away.
I feel completely broken and crushed. Trying to understand the reason. Especially when such an awesome, wonderful woman did not deserve this. No one does.
I wanted to thank those of you that responded to the questions that I had asked. As well as others for reading my mom’s story. Please take care and know that in this short time many of you have touched my own life in reading about your journey, and for that I truly thank you. Take care.
With much Faith, Hope, and Love for Mom, and a whole lot of positive thoughts for us all,
Jason
Thanks Cathy. Glad you are doing so well, and have defied the odds. I know you have given so many people on here so much hope.
Best,
Jason
Jason, I had 10 ERCP’s (all stents) in the 9 months I waited for transplant. The ERCP’s usually brought relief from nausea, vomiting… I had a couple almost back to back right after diagnose. I had amazing doctors, all I had to say “my feet itch” and they knew to change them.
My diet or food choices wasn’t a “healthy cancer free diet”, but I was doing radiation and chemo and my radiation oncologist said “We don’t like skinny people, so eat and eat whatever it takes”!!
Lots of prayers for HOPE and comfort,
Cathy*** Update, Friday, June 12, 2015 ***
We Will Never Give Up
They came and get mom this morning for the MRI/MRCP. Things went smoothly. Later this morning the oncologist came by to go over the results of the MRI. He said the team had reviewed the MRI.
The tumor is on her left lobe. It has wrapped itself around the vein/duct on her right lobe. Obviously not what we wanted to hear. But as with everything you’ve got to stay cautiously optimistic. Because of this surgery, is not an option as this point.
Her journey is paralleling so many of yours. The oncologist said the bilirubin is at 30. 5 weeks ago it was at 2.5. I can’t help but think what could have been done in the past 5 weeks if they would have rushed everything. Right, wrong, or indifferent, it doesn’t change where we are today. Stay positive right?
She is still getting IV fluids thankfully. She has been taken off her antibiotics via the IV. The oncologist wants to go ahead and get the ERCP scheduled asap. It will not be today, but he is trying to work it out to do it this weekend either tomorro, or on Sunday. If not, it will be early next week. He feels optimistic that he will still be able to stent.
This in turn should stop the bile from backing up into her blood, and hopefully relieve a lot of her symptoms (nausea, vomiting, fever, etc.) sooner rather than later, with ultimately relieving the jaundice over the next two weeks.
Early next week they expect to release her to go back home for the 2 weeks. In 2 weeks she will come back to give blood to check the bilirubin levels in hope that it has come down. The bilirubin level needs to be down to start the chemo.
We are hoping and praying that chemo is indeed an option. And once used, will indeed shrink the tumor with the miracle of her being able to have surgery. Remember, all things with God are possible.
*** Questions ***
– How high was your bilirubin or that of your loved one’s? How did you get it down?
– I am worried about them releasing her from the hospital and her ending up back to the state
that she was in before getting to the hospital. With the stent in do you pretty much feel back to
normal except for the fact of this “major life inconvenience” called CC?– What diet have you seen has worked the best?
As always, I’m also scouring this site to also search for these answers.
***
We know that her treatment as this point is palliative in nature, and not curative. Mom, along with us all are determined to turn the palliative into curative. She is not a statistic, she is a human being like all of us who has emotions, desires, goals, and a strong will to live. She is my biggest inspiration.
As many of you have said, and as I have said to her, we don’t have an expiration date. This is not a death sentence, this is a horrible disease that is very rare and will be dealt with in the best way that the human spirit can to preserve as much quality of life, happiness, health, and contentment as humanly possible. This will be in conjunction with her medical team, the support from everyone with never ceasing prayer, and above all God.
Best,
Jason
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