debnorcal

Shellie,

I know that this is all so overwhelming and difficult. My husband’s situation was different, but he also had several external tubes to drain from the wound site and it was also imperative that we prevent infection. We used alcohol wipes around where the drains entered his body and also when changing the drainage bulb. I also wiped anything he would come into contact with (telephone, tv remote etc.) with Clorox wipes frequently, and had our kids wash hands well before approaching him. Another thing you can do is to monitor temperature daily so that, should an infection start to develop, you can catch it early and get treatment (Tylenol, antibiotics, etc) to him right away.

I’m sorry you are going throuGh this and hope my suggestions help a bit.

Debbie

Nancy, welcome to our family of caring folks that have all been affected by CC. I am sorry your family is dealing with this.

Do you know if molecular profiling has been done? If the doctors know the particular gene expression (s) in your mom’s tumors, they may be able to match her with a trial or treatment that is producing good results in shrinking similarly expressed tumors.

Debbie

Vallerina, the surgeon at UCSF is Dr. Carlos Corvera. Best to your dad.

Julie, I feel for you. This is so difficult. Hopefully, it’s morning when you read this and you’ll have had a restful sleep. I hope you can take a deep breath and prepare to fight on. It really sounds to me that you are the expert in this situation. Your current oncologist is not explaining his thought process to you clearly, nor does he seem willing to have the consult with Dr. Javie. I think you are correct in thinking you should change oncologists. I wouldn’t worry about offending current onc. Especially with rare cancers, it is very common to seek second opinions. I would simply tell the current oncologist you would like a referral (if required) to the doctor of your choice for another opinion. Depending on how that goes, you might ask the second oncologist to consult with Dr. javie. Many cc specialty centers have a multidisciplinary team consisting of surgeon, oncologist, radiologist, etc. that meet to discuss cases. It might be helpful for your doctors to get together to discuss from all perspectives.

I hope this is helpful. Stay strong, Julie. You can do this.

Debbie

Dear HelpForMom2016,

It is rare for biopsies to produce positive results unless taken directly from the tumor during surgery. In my husband’s case, a number of ERCP “brushing so” aka biopsies came back negative. A “spyglass” type ERCP cbiopsy came back inclusive. I think the reason it’s so difficult to obtain a positive sample is at least partly because the cc usually grows in the epithelial cells and first line biopsy procedures mostly brush the surface cells and do ‘t easily reach the epithelial cells. I’m sure someone with more medical knowledge can give a more precise reason.

I hope your mom’s biopsy results identify something that can be effectively targeted.

Debbie

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

Welcome, Julie, to our special family. I am so sorry that your mom is dealing with Cholangiocarcinoma. I know this is a very scary time for your family and I can hear a note of panick in your words. I have been in your shoes with my husband and I want you to know that there is hope. My husband was staged at Bismouth 3 A, which is even more advanced. We found doctors that are very experienced with CC and we took each day step by step and issue by issue. There were times we didn’t think he would make it, but he did. He is now a year and a half post resection and feeling wonderful. Please try not to look too far out, rather focus on the next step. There are many excellent medical teams in your region. I’m not familiar with them but I’m hoping someone on this board can point you to experts in your region. Perhaps your mom’s surgeon is one of them. Do you know if the surgeon achieved clear margins? My husband’s surgeon found a few stray cells after surgery, so the team decided to use SBRT on the woun margin to kill off any stray cells remaining.

Your mom is lucky to have you guiding her.

Debbie