I'm sorry I'm just getting around to letting you all know my husband Jack passed away on November 30 after a brave battle with CC. I was holding his hand when he passed in the hospital. I miss him so much. It has been hard on our 10 yr. old son. I took him to Sea World in Orlando for Christmas to help distract him. I think it was good for us both. It is tough coming back to a quiet house, though. I know time will help, but it is hard. We were married for 21 years. My son is getting therapy and will start a grief support group. I intend to join one too. I am happy that my husband is no longer in pain and is in Heaven, but I am sad for us. I pray that a cure is found so no one else has to suffer from this terrible disease. Thank you all for your support the last six months.
Thank you all so much. We talked with the oncologist yesterday and are going to give it one last shot with the drainage procedure tomorrow. If that doesn't work, he will sign off on the hospice and get that started. He said to go ahead and call them to set up a first meeting, so we will be ready to go when the time comes. I have heard great things about hospice. Lainy, I will e-mail you then for your suggestions. Thank you so much. I think the hardest thing is preparing our ten year old son for this.
The stent that was put in last Thursday is not working. His bilirubin went from 8 to 10. I just talked to the interventional radiologist who said the only thing he can offer is to try to decompress the left lobe from outside (surgicially with the bag for outside drainage), but he doesn't think it will reduce his bilirubin below the 2.0 limit for further treatment options (radio embololization, chemo trial). Jack's right lobe is completely filled with tumor, so they can't do anything for that side. He wanted us to consider whether to have this procedure done, in light of everything. He was not optimistic. He told us to call him back later today with our decision. Personally, I want to go forward with it, because we have no other option. My husband is sleeping, so I will talk to him when he wakes up, and also talk to the chief oncologist. Jack has been groggy and not lucid since the stent was put in (he was getting forgetful the last two weeks), and he is so yellow from the jaundice. The doctor talked to us last week about hospice care. Should I be bringing them in now? I don't know too much about it. I have been taking care of him and have family staying with us now to help out.
Thank you so much!
Topic: My husband Jack is having stents put in today (10 replies, posted in General Discussion)
My husband Jack was scheduled for radio embolization yesterday, but he is jaundiced so he was unable to have the procedure done. He spent the night in the hospital and is having stents put in right now. If they work, the doctor said it could take 3 weeks for his bilirubin level to come down, before they can do anything else.
Thank you Cathy. I am at the point of tears right now. We will call them and plead our case. We have been extremely happy with BCBS up until this point. Hopefully we can get this resolved soon. Thank you for your quick reply!
We met with Georgetown last week after we found out the trial didn't work and his cancer had gotten worse. The big tumor is pushing his liver over on his stomach, compressing it to half its normal size. They want to do radio embolization, then enter him in another trial. Chemo embolization wouldn't work because the 6-inch tumor is not vascular, and he has a clot in the portal vein. I just posted on the insurance thread on here, because it was preapproved last week, then we heard today that they want to review it further. This will hold back the procedure and trial longer. I am so upset about it right now.
The trial my husband was in didn't work and his cancer has gotten worse, so his oncologists want to do radio embolization, then enter him in another trial in four weeks (he has to wait that long between the last chemo and the new trial). His main oncologist does not want him to sit idle for weeks, because as he said, the cancer can be aggressive and we don't want to waste that time. So we met with the interventional radiology oncologists last week and they said we had to get preapproval for the radio embolization, since it is only approved for colorectal cancer (it would be off-lable use). It is $30,000 per dose (one for each side of the liver). We found out the next day that it was approved, so we hurriedly set up an appt. on the 25th for the mapping procedure. Well today, we heard from Georgetown that BCBS has decided to review its decision and may deny it. They want more documentation to prove it is a necessary treatment. I cannot believe they would put us through this. How could they approve it then change their minds? It may also push the procedure date further out as well, which may also impact his eligibility for the new trial. We are going through enough already. I feel it is just cruel that they can do this. The doctors are putting documentation together to submit to BCBS, but I wonder if there is anything I can do to help as well.
Re: How to manage getting care at a distant hospital (10 replies, posted in General Discussion)
When my husband was diagnosed in June, we went to Johns Hopkins (Dr. Pawlik), George Washington University (my husband's cousin worked there as a head nurse and recommended someone), and Georgetown (Dr. Marshall). Johns Hopkins advised against surgery since it was already in nearby lymph nodes and recommended the GEM/CYS chemo combo. George Washington University basically told him there was nothing that could be done. The head of the liver transplant center at Georgetown felt he could remove most of the 6-inch tumor in his right lobe, but when he operated, he found rice-grain sized tumors in the left lobe, so he closed him up. He had to heal for 4 weeks then entered a trial of Xeloda, ceterizine, and temsirolimus (I think I got the names right). He had 7 out of 10 treatments, but his platelets were taking a beating. We found out Monday that it didn't work, and the cancer had grown. It is pushing his liver over to the left and against his stomach, which is now compressed to half the space it should occupy (so he is eating small, frequent meals). He meets tomorrow with the interventional radiologist at Georgetown to see if he is a candidate for targeted chemoembolization. He has to wait 4 weeks after the last trial to enter the next one. The next one is NCI 8735: A Multi-Institutional Phase II Trial of the Akt Inhibitor MK-2206 in Refractory Biliary Cancers. It's from Ohio State.
Re: How to manage getting care at a distant hospital (10 replies, posted in General Discussion)
Friends have suggested MD Anderson. We just met with Georgetown and they recommend seeing if he is a candidate for targeted chemoembolization, then start a trial in four weeks.
Topic: How to manage getting care at a distant hospital (10 replies, posted in General Discussion)
What do patients do when they decide to get care at a hospital that is far away? Do they just move there with their families? We have a son in fourth grade, so it would mean going to a new school. We live in VA, but have had people suggest going to MD Anderson. I was just wondering how families cope with this decision and what they do. Our son has type 1 diabetes and we have been very happy with his care at his current school, so I am hesitant to move him. My husband has advanced CC. He is retired and I am a stay at home mom. He was in a trial at Georgetown, but we found out yesterday that it didn't work and the cancer has gotten worse.
Finally got around to giving you all an update. The doctors lowered his capecitibine dose and the mouth sores went away (he occasionally gets one but nothing like what he was experiencing before). They said that all of the trial patients got the sores initially. The main issue we have now is that twice he had to skip chemo because his platelet count was too low. He is scheduled for a CT scan on Oct. 5 to see if the trial is working. The doctor said that if he continues to have low platelets, he may have to discontinue the trial. Hopefully the trial is working and his platelets will rise.
My husband is finishing his second week of chemo and has developed sores on his tongue. His doctor has him using Magic Mouthwash 4x/day and also rinsing with warm salt water. Does anyone have any other ideas? It is starting to impact his eating. We'll try ice chips this week. He is on oxaliplatin every other week, so he seems to be tolerating cold things this week. Any ideas you have would be greatly appreciated!
Thank you all for your messsages. Lisa, I will probably give you a call soon. It is helpful to know we are not alone.
Thank you so much, Nancy. It's interesting how some people can lead healthy lifestyles and get cancer while others defy all the recommendations yet don't get cancer. My husband jogged for 40 years, didn't smoke or drink (well, maybe one beer a month if that), ate well, and always got his physicals, colonoscopy, etc. CC is one of those silent cancers, like ovarian cancer. Most people don't realize they have it until it is advanced. I do wish his doctor had taken his pain more seriously and had him go get an ultrasound, though. I don't know when it started, but maybe they could have done something earlier. I know there is no point in looking back, but you can't help but do so. Thank you for your kind wishes, though.
My husband was diagnosed last month with CC. He had surgery two weeks ago to try to remove a 6-inch tumor from his right liver lobe, but the surgeon found rice-grain sized cancer spots on the left lobe, so he closed him up. The spots did not show on the CT scans. He also has cancer in his lymph nodes above the pancreas. He is scheduled to start a trial of temsirolimus, capecitabine, and oxaliplatin in about a week. He gets his port on Monday. He had no symptoms other than a vague, intermittent pain on his upper right abdomen that the doctors think was unrelated (he had it off and on for a few years and looking back, we wish his primary care doctor had done an ultrasound, but his labs were normal and he didn't have pain when they pressed on it). His liver enzymes were high in April, so they had him recheck and when they were still elevated, they did the ultrasound, then CT scan and biopsy. So this all came as a big surprise to us. He is 60, and we have a 9 yr. old son who has Type 1 diabetes (he gets 4 shots a day). Looking forward to chatting with you all since there are not many people to talk to who are familiar with this type of cancer.