July 10, 2016 at 5:07 am #92674marionsModerator
gardengirl…..I have learned that due to location and aggressiveness of tumor, stent placement can prove to be very difficult. Cases like these require an expert who has performed hundreds of such procedures and these experts (generally) are located in the major cancer centers. How long do you think it will take for the referral to Princess Margret?
Hang in there; we are rooting for you.
MarionJuly 10, 2016 at 1:41 am #92673carla4jeff49Member
Sorry to hear about your husband’s diagnosis. My husband was diagnosed with non-resectable intrahepatic CC in Nov 2014 at age 48. He was able to have chemo, although it didn’t really do much, and then received 3 weeks of photon radiation at MD Anderson in Houston, TX, in April 2015, which did shrink his tumor considerably. At his last scan this past May his tumor is still stable. While not a cure, we have been told that type of radiation is one of the best treatment options for extending life for those who can not have a transplant or surgery to remove the tumor. The side effects were very minimal, as opposed to the chemo. I recommend asking if it’s an option.
Also, I would try alkalizing your husband’s diet. It can seem overwhelming if you start researching it, but an easy starting point Is to add fresh squeezed lemon to his water, also add raw apple cider vinegar to water once or twice a day and drink it. Cut out sugar and fried foods and try to eat raw fruits and veggies often.
My husband also takes CBD oil from CW botanicals, and curcummin, milk thistle, and Graviola supplements.
I do not know if any of this will be helpful, as each individual case is unique. I wish you the best as you journey forward.
CarlaJuly 9, 2016 at 11:21 pm #92672debnorcalModerator
I just sent you a private e mail message with the summary you requested.
Just want to mention that before we switched to UCSF, our HMO oncologist had recommended radiation. My husband was marked for the radiation but then had his appointment for a consultation with UCSF before receiving the radiation treatment. The doctor’s eyes grew wide when she saw the radiation tattoos. She was relieved when told Mike had not yet received radiation. She went on to tell us that radiation changes the tissue and makes it difficult, if not impossible to have surgery. She equated it to working with wet tissue paper. You didn’t specify if your husband received the single dose or not. If not, I would suggest holding off until you get a second surgical opinion. (I know there is a compounding effect of radiation treatments, so, if he did receive one dose, I’m not sure one treatment would do significant damage.)
You are doing a great job caring for your husband. Please keep us posted of your husband’s progress. We are all here to support you in any way we can.July 9, 2016 at 6:25 pm #92671gardengirl14Member
Hello and thank you Marion, Debbie Laing and Circlea5 for responding to me. It is so helpful to find community here when things are happening at such a frightening pace. I am sorry to have delayed responding..my caregiving role has amplified with our two children out of school now too.
In my haste to get some help from you I realize that I did omit some details. Lainy and Debbie asked about what had been done to try to get the bilirubin levels down. A surgeon was able to insert one stent via ERCP back in early June which has done some work to reduce bilirubin levels but not enough. The tissue/tumour is inside the bile duct and is blocking the flow. In mid June he was sent for insertion of a Percutaenous drain but that was not successful. The Interventional radiologist and hospital oncologist felt this was due to a spread of the disease up the biliary tree or perhaps a autoimmune disease that may have caused scarring. At any rate, they felt that there was no point in trying this route again or trying for another site.
We have been waiting anxiously for this one stent to work and have been trying to explore any options that might be possible without a healthy level of bilirubin. We thought that perhaps some of the immunotherapy treatments might be a possibility but some of the trials that we have explored are not open to someone who has the liver function levels my husband has. Yesterday, the radiation oncologist at our local cancer centre decided to try giving my husband a single dose of radiation to his bile duct in the hope that it would kill back some tissue growth and allow bile to flow to get his bilirubin levels down. He was not 100% certain that this would work but we decided to go for it in hopes that it might give him a chance at least to have some treatment. Has anyone every heard of this being done?
We have asked for 2nd and 3rd opinions re surgery and other treatments and these are in the works. His case is being brought to a tumour board in Ottawa and our oncologist is sending a note of referral to Princess Margaret in Toronto. I pray that he will have enough time to benefit from this. He is so much weaker than he was and has lost 35 pounds since April.
Circlea5…thank you for reaching out..even in your grief. I read your story and it resonated with me as the onset and our husband’s ages are so close..and like you I don’t understand how someone can be so sick and not feel it and then when it is identified they are unwell..to have so little time to do anything about it. I am so sorry you were not given the time to have the conversations you wanted and deserved to have….I hope in time you will get some answers to help soothe some of the pain you must be feeling.July 5, 2016 at 10:32 am #92670circlea5Member
Hello your situation sounds familiar to mine. My husband was 46 and went to ER for extreme exhaustion and pain in abdomen back in April. After many tests it was found he had cholangiocarcinoma which had spread to his lymph nodes and bone marrow. He had one chemo treatment on a Friday and by Sunday was in liver failure. He fell into a coma and passed away one week later. I don’t have any advice except spend every moment you can with him. My husband went so quickly we didn’t even have a chance to talk about things. I’m so sorry you are going through this and hopefully you will have more time with him. I am still devestated on how someone could be so sick and not know until the end. I miss him terribly he was my life . We have one child he is 21. God bless you and stay strong.July 3, 2016 at 3:34 am #92669marionsModerator
gardengirl…..a warm welcome from me as well. I agree with all said by Lainy and Debbie and would like to add that Princess Margaret Cancer Center treats a significant amount of cholangiocarcinoma patients and has a robust hepatobiiary department. In order to be seen, a physician referral is required.
MarionJuly 2, 2016 at 4:14 pm #92668debnorcalModerator
Pam, I would also like to welcome you to our wonderful group although I am sorry you have reason to join. I agree with the points Lainy made about stenting to relieve the bilirubin buildup and second opinions from cc experts. Based on your comments, it sounds to me like your current doctors are probably good generalists, but have little experience treating Cholangiocarcinoma. In my experience, this type of Doctor is not well versed in current treatment options and tends to give up and offer only a palliative approach.
Your husband’s condition sounds very similar to my husband’s when he became ill two and a half years ago and our first doctors said there was nothing they could do for him. We sought other opinions from several medical centers that have multidisciplinary teams that handle many cc cases per year. My husband’s (amazing) surgeon told us that, despite his advanced stage, he could remove the tumors and he did so successfully. Even if he hadn’t been able to do so, the team had a number of other promising options. You might want to click on my account and reared of our experience. I also typed a summary and would be happy to forward it to you via email.
Although this is very difficult for you and your family, try to take it one step at a time and find the best option(s) for your husband by getting him seen by experts. That’s how many of us get through this. Best wishes, DebbieJuly 2, 2016 at 2:17 pm #92667lainyMember
Dear Pam, welcome to our remarkable family but sorry you had to find us. I know there is no description on how you are feeling. We are huge believers in 2nd and 3rd opinions since this is still a very rare Cancer. I must say in all honesty that I have never heard of an ONC saying to go naturopathic on this Cancer. I hope you seek a 2nd opinion and above all make sure that whomever the ONC is has a credible amount of experience with CC and that the hospital has also had experience with CC. Usually when the jaundice appears it means that the bile ducts need to be stented. Did he not say anything about that? It is the only way to bring the bilirubin down and to proceed with treatment. I wish you the very best and please keep us posted. I am hoping others chime in on this as I am not so sure this ONC is experienced at all with CC.July 2, 2016 at 1:37 pm #12577gardengirl14Member
My husband was very recently diagnosed with cholangiocarcinoma after being admitted to hospital for jaundice and generally feeling unwell for about 2 weeks. Prior to this he was a very healthy, active guy. He had been down in the Bahamas the month prior and we thought that maybe he had developed Hep A. We have been devastated by this diagnosis and every doctor’s appointment brings worse news. He has been deemed by the surgeons here as someone who can neither have the tumour removed nor a liver transplant. They feel that the disease has spread to another lymph node and that it has also spread up the biliary tree in his liver.
His bilirubin levels are too high at present to give him chemo and our medical oncologist essentially told us last week there was nothing he could do safely and suggested a naturopathic Doctor. If any on you have any ideas or have heard similar stories with hopeful directions, please share. My hubby is only 45 and we have two young boys. I don’t’ to lose him with giving him a chance to fight.
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