Where do we go from here?

Discussion Board Forums Introductions! Where do we go from here?

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  • #92897
    stageivlife
    Member

    Just wanted to let you know that I’m thinking of you. It sounds like you’re doing everything right.

    #92896
    marions
    Moderator

    Jennifer…..glad to know that everything turned out alright, the varices are banded off and you had the much needed support you deserve. Wishing for uneventful times and times heading your way.
    Hugs,
    Marion

    #92895
    tjradshannon
    Member

    Just a quick update. We are home after spending the last 5 days in the hospital. Tim was experiencing some unusually bad vomiting and so I called our oncologist and they directly admitted him. Long story short, after some scary hours, he had ruptured bleeding varices and had lost over a liter of blood. The GI docs were quick to react and performed an endoscopic variceal ligation. We are happy to have made it home today and are grateful for the excellent care we received and the amazing support of family and friends. Follow-up includes additional meds to control the pressure due to the portal hypertension and additional upper endoscopies every couple of weeks with possible additional EVCs until the varices scar tissue is built up enough to prevent further bleeding.

    #92894
    marions
    Moderator

    Jenifer……Tim and you left no stone unturned and one never knows what can turn up next and give reason for hope. At the moment his comfort is of most importance and that you are providing, dear Jenifer.
    Hugs,
    Marion

    #92893
    tjradshannon
    Member

    Dear Marion,

    Just wanted to let you know that I heard back from the doctor that you suggested I consult. He asked if Tim was eligible for a liver transplant. Tim is not eligible since the lymph node had tested positive for the cancer. He also asked if he could possible receive a portal vein stent. When Tim was in the hospital, the doctors had considered it, but ruled it out since he was at such high risk to have additional procedures since he is on Lovenox due to his deep vein thrombosis and they also are quite concerned about infection risk. They have him on a daily prophylactic antibiotic. He already has an IVC filter installed which I had neglected to mention in my original post to try and prevent any further pulmonary embolisms. I feel like we have maybe exhausted any options for further treatment.

    – Jenifer

    #92891
    tjradshannon
    Member

    Thank-you for your responses and suggestions. To my knowledge, the tumor has not been molecularly profiled. We did see a second set of doctors at Univ. of Penn. These doctors were the ones who recommended the proton beam radiation as a second line. I guess it would be a good idea to touch base with them again since we only met with them at the beginning of his diagnosis and they are not aware of his latest developing complications. However, I know my husband would not be receptive to driving back to that hospital for another doctor’s visit. We are now only doing telehealth visits with his current doctors. Driving to the city for doctors visits usually takes 4-5 hours and really wipes him out. I have a hard enough time talking him into a quick shower, a shave, or even just brushing his teeth.

    #92890
    lainy
    Spectator

    Dear Jennifer, welcome to our remarkable family but so sorry you had to find us. I can’t help on your question but wanted to let you know you have come to the best place to be for CC support.
    I have listed a site below that you may find helpful and please keep us informed on Tim’s progress as we truly care.

    http://cholangiocarcinoma.org/newly-dx/

    #92889
    marions
    Moderator

    Jennifer….I am following Debbie and welcome you to our site. I am not aware of immunotherapy used in a case similar to that of your husband and advise you to search out an additional opinion from an oncologist “very” familiar with this cancer. Please take a look at the e-mail I sent to you.

    Hugs,
    Marion

    #92892
    debnorcal
    Moderator

    Dear Jennifer,

    I am so sorry that your husband, Tim, has endured so much due to Cholangiocarcinoma. You have gotten up to speed on this disease and done all the right things, especially getting second opinions from experts. Nevertheless, Tim ‘s health has deteriorated. I know how difficult that is for both of you, as well as your family and my heart goes out to you all.

    I am glad you joined this forum, as we have many “resident experts” on almost every topic conceivable relative to CC. I have two suggestions for you (and I’m sure other members will, as well.). First, has your husband’s tumor been molecularly profiled? That is important in determining which next line treatments may be the most effective. For example, the Keytruda seems to be most effective when the IDH1 mutation is present-this is often found in intrahepatic CC. I believe liquid samples from blood can now be used if tumor tissue is not available.

    Second, it sounds as though your husband had surgical second opinions, where the surgeon or medical team review his case to determine whether or no he is eligible for resection at this time. There are also medical second opinions, where a multidisciplinary team evaluates which second or third line treatments might be most effective. The medical centers that have cc expertise are well versed in the latest treatments or combinations of treatments, and their results. I think it would be valuable to request a medical second opinion for Tim. You seem to be on top of many of the newest options, which is awesome. There is, however, great value in meeting with doctors that are experts who can actually guide you in a knowledgeable way. For my husband, for example, it was a great relief to meet with the UCSF team, who clearly knew this disease nod for the first time lead us through options rather than us pushing generalist and reluctant doctors to consider treatments.

    I hope that others will chime in here with their thoughts. You are doing a great job. Hang in there and please post here anytime you need information or support.

    Debbie

    #12669
    tjradshannon
    Member

    My husband, Tim, is a 50 yr old non-smoker, non-drinker, former DIV 1 college athlete who still ran 15 miles/week and had no major health issues. The past Christmas eve, I rushed him to the ER because he was vomiting blood. They said he had a bleeding ulcer, acute pancreatitis, and gall stones. After CAT scan and MRI they found the mass, diagnosed cholangiocarcinoma and transferred him from our local community hospital to Thomas Jefferson University Hospital in Philadelphia. After placing a plastic stent and doing a biopsy on a nearby lymph node, they told us the liver was non-resectable and oh, by the way, he also has cirrhosis of the liver. It turns out he has a genetic condition causing Alpha one antitrypsin deficiency which caused the cirrhosis. Knowing surgery was our only hope for a cure we got a second and third opinion from Univ of Penn and Johns Hopkins. They both concurred with original opinion. After extreme emotional turmoil, we prayed that Tim would get selected for the experimental arm of a photodynamic therapy clinical trial in the hopes it would buy us some time so that he could see our youngest graduate from high school and maybe go on a few trips we had planned to do after retirement. Tim did get into the trial. In late January, during an ERCP they performed the PDT and placed two plastic stents in the biliary ducts. The next week he began chemo with Gemcitabine and Cisplatin. He tolerated the first 2 treatments well. By the 3rd treatment he began to retain fluid in his legs and abdomen. After the 4th treatment they had to stop chemo and perform a paracentesis removing 6.5 liters of fluid. In late March he suffered deep vein thrombosis and multiple pulmonary embolisms. He was hospitalized for two weeks in an attempt to get the acute ascites under control. He no longer could tolerate the chemo and in June they performed an ERCP to place a permanent metal stent. He has now lost 40 pounds, is on a low salt diet, taking diuretics, and receiving a paracentesis about every 11 days. The liver failure has taken precedence over the cancer and the oncologist agrees that further chemo would probably only exacerbate the liver problems. He sleeps about 14-16 hours/day, has balance issues, periods of pain and nausea, can’t get up without help, and only leaves the house for doctor visits. We initially had a Plan B of proton beam radiation and were pursuing an appeal to the insurance company, but honestly now don’t want to introduce further toxicity into his system. In reading other people’s posts on this site, I wonder about Keytruda. Our only thought at this point is the possibility of immunotherapy. Our concern is that could it make things even worse for him, now. His quality of life is already poor and I don’t want to make it worse. While his slow deterioration has been extremely difficult for me to watch, it has been devastating for him to live through. Only our faith in God and the love and support of our incredible family and friends has sustained us thus far. Is he even eligible for the treatment? Who would you recommend we contact for information about an evaluation?

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