vtkb

Unfortunately we got news today that Kathy’s cancer has recurred.  In October we noticed that she had a palpable left supraclavicular node and told her oncologist who then sent kathy for labs.  Her Ca 19-9 was in the normal range for her and she was experiencing a cold so they didnt feel that it was anything worrisome. She then had an ear infection so we kind of brushed it off as likely due to that since kathy was feeling ok and her liver labs werent rising.   It stayed the same size though so eventually kathy had an ultrasound which then led to a biopsy last week along with her abdominal and chest scans.  The biopsy came back as positive for cholangio.  The weird thing is I asked if they were going to send the lymph node biopsy for genetic testing and her oncologist said no, bc he knows kathy has the ATM mutation in every cell of her body.  Should I push to have the biopsy genetically tested as well? Shes also been having a bad headache the past two weeks that hasnt gone away, but they held off on a scan of her brain until today so we are not sure what the cause of the headache is.  we are also waiting for the official read of her scans and will see her surgeon in 2 days who usually goes over the scans with us.

Her onc thinks she can either try the chemo again since it was working before her surgery, or she may be a candidate for a Clinical Trial at Sloan trying out two drugs in combination (avelumab and talazoparib) because she has the ATM mutation in all her body cells. Has anyone used these drugs or know of anyone who has? Its a phase 2 trial targeting pts with BRCA or ATM mutations.  We will have to wait to see if kathy is eligible for the trials, but I wonder if its better to start chemo again to get something fighting the disease while we research the trials more,  or if its better to just start trying to get into any trial that will take her.  I know if the cancer progresses then there will need to be a washout period for any trials to start.  Has anyone had any long term success with just continued chemo indefinitely?  I feel like I’ve read it in the past but cant find the posts now.  I’m also worried about the headache and if its something more sinister, but hope not.  Thinking back the only potential things on past scans were lung nodules that were small and stable and non specific. I’ll also have to wait and see what her surgeon thinks as well.  Any ideas are appreciated, and thank you all.

– update- kathys headache was still bad after seeing the onc so she checked into sloans urgent care.  The dr there told her that they saw likely skull mets which is probably what is causing her headaches. I always thought skull/bone mets was rare for icc, but it seems like any rare thing that can happen has happened. Kathy stayed overnight, and this morning we found out that the brain MRI showed no brain mets (good), but we also found out the CT chest showed growth in the lung nodules they were monitoring and lymph nodes, but no mets in the liver itself.  I’m guessing that means that these mets were from some cancer cells that were left over from before the surgery since there are none in the liver- I wonder if more chemo preop wouldve changed anything but I do remember we were very fearful of staying on chemo too long and letting a chance at resection become inoperable.  Kathy did have gem/ox post op with radiation .  Now the question is do we try chemo again with the radiation for the skull, and if so which type since gem/cis worked well the first time but who knows how these metastases will react now? Or should we just do the radiation and then go for a clinical trial?  I dont like waiting while we know the cancer is growing.

• This reply was modified 5 years, 7 months ago by vtkb. Reason: Added update
• This reply was modified 5 years, 7 months ago by vtkb.

Elena,

So sorry to hear of your brothers diagnosis.  I would advise your brother to also seek out the cholangiocarcinoma warriors facebook page, as many current patients are on there and discuss their treatments. They can share their experiences with him.   After my wife’s surgery, there was a positive lymph node so she was advised by both her surgeon and oncologist (onc is at sloan kettering, surgeon is not) to do radiation post op after a course of chemo.  Recent studies (bilcap) also suggest that xeloda with radiation post op offers better results, but I dont think that was compared to gem/cis directly (someone please correct me if I am wrong).  Kathy’s oncologist wanted her on gem/ox first as the Bilcap study had just posted results around the same time, so it was new to the field.   A second opinion will never hurt.  As for clinical trials, yes some pts have gone on them after surgery- going to a major cancer center that deals with cholangiocarcinoma , like sloan, mayo, etc may open up more opportunities know about those studies, as does searching clinicaltrials.gov.

Good luck!

-billy

I think last year before kathy had radiation, they were worried about some lymph nodes and they did a pet scan which showed that they were negative.  Not sure if that would help, but it was a relief for us.

Good luck to Steve!  I would warn you to just stay on top of any symptoms/side effects Steve may be feeling during treatment- Kathy got sick (meningitis- def rare but happened due to her weakened state) and we almost ignored it when she was getting radiation bc we just figured it was a normal side effect of the radiation. Everyone told us the side effects get worse as the radiation accumulates with each treatment.  I hope your insurance doesnt give you any issues in the future- we use Horizon and other than a delay in getting approved for a biopsy to get diagnosed everything else has been covered without any issues or delays at MSK by them.

Did they say which antibiotic was used in the study?  I wonder if this is why one of the pediatric GI doctors (i think at stanford but i forget) found some success using oral vancomycin in his patients with PSC (primary sclerosing cholangitis), which can be a precurser to cholangiocarcinoma.  Do you know if any of the oncologist known to the foundation have any thoughts on this (Dr. Javle, Abu-alfa, etc)?

The rise can be temporary- A rise and subsequent fall may actually happen when the chemo is working (for CA 19-9), as it did for kathy’s chemo regiment.  Certain medications including chemo regiments can raise liver enzymes, and when discontinued the enzymes fall back to normal likey indicating a temporary insult to the liver (but this may take awhile).  However others may cause more permanent damage.  The trends are important, but they are just a small part of the overall picture.  To put in in context during kathys chemo her ast fluctuated between normal and high every other week; her alk phosp went from 100- 600, and alt was usually elevated.  After the meningitis episode kathy was put on keppra, and all her enzymes skyrocketed (alk phosp close to 1000).  She has since stopped the keppra, but was it medicine induced or worsening of her PSC or liver, we dont know as of yet.

love4life- Good luck with your scans, hope you see shrinkage, or at least stable tumors.  Sometimes the chemo can help turn inoperable tumors into operable ones, if it hasnt spread outside the liver.  If the scans show improvement, perhaps you should send copies of the scans to experienced surgeons and see what they think.