Received bad news today
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Hi Linda,
That is good news. Glad to hear it. Keep thinking outside the box. Never hurts and as you have proven, sometimes it can help.
Hope things continue to improve and we see more posts like this. Take care.Love & Hugs,
DarlaDear Linda, just what we like, a post with more positivity! First sign of a man feeling better….watching football. I hope the new suggestions help and here’s to more reductions. Wishing the best and praying for more good news, hang in and hang on. Hubby is lucky to have such an amazing advocate and care giver!
I haven’t been on the discussion board for a while as my husband was quite ill but I want to update you on what has happened. My husband’s latest MRCP did not show a blockage so the oncologist and those with whom he consulted came to the conclusion that the tumors were compressing the bile ducts and no further treatment would be possible. He said the bilirubin level would continue to rise and we should make an appointment to discuss my husband’s care. I told the doctor that I would like to try a round of antibiotics and also Ursodiol (as suggested by Marion). He said that he did not think either of these drugs would have any effect but he was willing to prescribe them as he didn’t think they would do any harm. He also wanted to drain my husband’s ascites but I convinced him to try a diuretic first.
Although my husband was extremely ill during the last couple of weeks, the fever he has had for two months completely disappeared after a few days on the antibiotics. The diuretic was effective as his abdomen returned to normal size. About three days ago, my husband began to feel much better. Instead of sleeping all day, he began checking his email, watching football, and reading during part of the day. Today he had a blood test and the doctor just called me with the results. Bilirubin has gone from 3.7 to 3.4 and there are also small reductions in the other liver function tests.
Although we have a long way to go, I’m encouraged by these results. When we met with the oncologist today, I could tell he was surprised. I think he is an excellent doctor but sometimes it pays to think outside the box and I’m glad he is willing to listen.marco….please know that some don’t come to this board regularly however; it is easy to retrieve their postings :
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Hugs,
MarionSorry to hear, i feel we are in the same shoes my fathers cancer came back a year later. How long was your husband doing the chemo for. While doing the chemo was he ok. I dont know if my father should do the chemo i believe it will only shorten his life and make his days worse. Being thru this experience what advise would you give. Enjoy every good day with your husband and i will keep him in my prayers,marco
Thank you all for the support and a special thanks to Marion and Percy for these excellent suggestions. I will first await the results of today’s MRCP in the unlikely event that it reveals a blockage that can be stented. If it does not, then I plan to have another talk with the oncologist to discuss the possibility of Ursodiol as well as some of Percy’s suggestions. We had been discussing radioembolization at Northwestern but that is no longer on the table as they won’t accept patients with bilirubin over 2. However, I will contact Dr. Moeslin to see if he has any other suggestions. Although he isn’t feeling well at the moment my husband still has a strong will to live and wants to examine all possibilities.
Hi, Linda,
sorry for what happen, please say hi to your husband for me.
I reviewed most your messages.but first
1. there is a clinical trial at Cornell University for PDT (clinical identifier is NCT01524146) it is the #4 listed on this foundation’s clinical trials list.
2. Consult with an interventional radiologist ( you can send CT scan disc to Fred M. Moeslein, MD, Ph.D
Assistant Professor
Interim Director, Division of Vascular and Interventional Radiology
University of Maryland School of Medicine
Department of Diagnostic Radiology and Nuclear Medicine
22 S. Greene Street, Room N2W76
Baltimore, MD 21201
E-mail: fmoeslein@umm.edu)
He will answer your questions with regard to this option.)
and an oncology radiologist to see whether what they can offer.(ie: cryoablation ,IRE(nanoknife) for lymph node nd or the liver if appropriated; or IMRT or SBRT radiation by oncology radiologist to at least to halt the growth of the tumor that compress the intrahepatic bile ducts if not contraindicated due to the bilirubin level.) I did a cryoablation for the lymph node and feel fine.it is an outpatient procedure.
3. sine your husband is KRAS mutated and not wild type, it may be of little use of the TKI, but you can ask Dr. Catenacci to see whether sorafenib( a multi-kinase inhibitor will worth a try base on the Foundation One repoort you got.I heard from Dr. Gores (from Mayo) that sometimes a subset of patients will response to sorafenib even though the majority won’t.
I think at this juncture of the game, if I were your husband, I will try it if the bilirubin level permitted to do such.
4. You can also ask Dr. Catenacci to see whether Univ. of Chicago’s medical immunology dept. can give you anti- PD1/PDL1(L2) clinical trial if they are ready and running .I was told not ready in July2013,but now is November;. or he can refer you to such immunology treatment center for further treatment.
5. In the meantime, while waiting and buying time, chemoembolization(TACE) can be used to take care of the multiple small tumors if the interventional radiologist say no contraindication to the procedure;TACE is an out patient produre and with little or no side effects,at least that was the case for me.I have no opinion on radioembolization.
God bless.Linda…You might want to ask the physician about Ursodiol (Actigall, Urso Forte, Urso 250) for thinning of bile.
Hugs,
MarionI wish I could give advice but instead I simply want you to know you are not alone in this devastating turn of events. It must be really hard to adjust to the idea of not aggressively treating your husband when he has done so well up until recently. It does seem strange to have to switch your mindset. The Dr sounds like he is looking at everything carefully. I pray he can find a way to relieve your husbands immediate problem of the bilirubin buildup and in the meantime that you both find relief from anxiety. Peace, Willow
Linda,
I have nothing more to add, but am sorry you and your husband are going through this. Having been there myself, I too know how hard it is. The only advice I can give you is to take it one day at a time. Take care and let us know how things are going when you can.
Love & Hugs,
DarlaLinda I am so very sorry to hear this. I remember the day we were told Teddy had months. I think we were both just numb. Like you say you know it’s coming but you just can’t wrap your head around it. Teddy was given the news the middle of June and in July we went to Milwaukee so he could spend 2 weeks at a lake house of one of our friends and to be with his kids. We had a packed house every day for 2 weeks. Came home the end of July and I ordered Home Hospice August 18th. They were absolutely wonderful. T and I talked A LOT about everything. We laughed so much and like I said before, he called this time our Honeymoon. We just went on daily and mostly went with the flow. When he felt like eating he did, when he didn’t he didn’t. Just play it by ear and by what you both feel you want to do. Unfortunately I know of nothing new. We don’t know much and always ask why. Be kind as we say to yourself too. I only wish I could take this away from everyone! Please let us know how you are doing.
My husband was diagnosed with intrahepatic CC two years ago. He had a resection but the cancer returned a year ago. He did well on chemo for a while but the disease has progressed recently. The doctor was considering what to try next when my husband’s bilirubin began rising. It is now 3.7 and he has been ill for the last couple of weeks.
The doctor at first thought that there was an obstruction of the bile duct that could be stented but several tests have failed to confirm this. He now thinks that it is more likely that the tumors in the liver are compressing the small intrahepatic bile ducts and causing the bilirubin to build up. He says there is no treatment for this condition and that further treatment of the cancer is not possible because of the high bilirubin. He plans to order one more MRI just to make sure he is not missing anything and, at my request, he ordered antibiotics in the unlikely event that an infection could be contributing to the problem. However, it is clear that he thinks we are nearing the end of the journey. At our meeting today he talked mostly about symptom relief and the possibility of hospice.
I knew this day would come but I wasn’t expecting it so quickly. My husband has always felt pretty well despite everything he has gone through and less than a month ago he was working, going on walks, and enjoying life. I’m trying to accept this news but it’s very hard for me to give up after we have fought this disease for so long. If anyone has any advice or new ideas about anything else to try, I will appreciate it. If there is nothing else to do, then I will do my best to cope and help him through these difficult days. Linda
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