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Good luck in your journey. I can’t stress how important it is to seek a surgeon who has experience with cholangiocarcinoma/liver cancer resections. If you live in a major city, look up the major liver transplant centers and get their surgical opinion (your wife will not be eligible for liver transplant, but those surgeons tend to also do a lot of liver cancer cases). My wife chronicled her journey here (36 yr old with CC update) and our thoughts on surgery after neoadjuvant chemo if you want to check it out. There is also a robust facebook community for patients only that your wife should look into joining when shes ready.
Good news that your surgeon thinks its resectable. Is there a reason they decided to start on FOLFOX first? Usually most are started on Gem/Cis as first line therapy- perhaps its worth asking your oncologist. Good luck in your journey
I’d say try to get a second opinion (with scans) with other surgeons in the UK that see this disease a lot. Is your uncle being treated at a big cancer center?
Kathy’s recurrence occured with mets to her lung, spine and skull. Skull met was radiated, she restarted chemo in Jan 2019. One brain met noticed in feb 2020 that got radiated, now her spine lesions grew so one of them will be radiated also soon. Though rare, I think Kathy has spoken to a few people who have had spine or brain mets. I think the skull was more rare but can be mistaken.
was your sister ever considered for just a resection instead of transplant? If the cancer hasnt spread outside the liver she may still be a candidate. My wife has UC, PSC (diagnosed during her resection) and ICC diagnosed when she was 36. Shes now 39, and the resection gave us 1.5 years of NED before it came back with mets to the skull spine and lungs. Granted, the extent of the PSC may make your sister inelgible/not a surgical candidate, but its worth asking surgeons in the area. Good luck.
So 10 days ago, Kathy’s left neck looked swollen so we went to the MSKCC urgent care clinic- I was praying it wasnt SVC syndrome, and it wasnt, but it turns out kathy has another blood clot. Same spot as last time. It seems the port (since removed)/picc/central line that she had back in Oct 2017 likely caused some vessel damage making that the spot prone to DVTs. We had just returned from a flight from the Bahamas, but that wasnt a long flight by any means. At least she was able to still get the brain spot radiated (1 day only). Shes doing well now, on lovenox but has to get blood draws frequently to check her platelet counts.
As an aside- with the Covid19 virus going around (coronavirus), I hope all of you are taking care to self distance/isolate as much as possible. But I also hope your care givers are doing the same. Make sure they are washing their hands and self distancing as much as possible so they dont spread anything to you. I’ve seen how this disease has affected even young previously healthy patients, so please protect yourselves. I’ve also seen firsthand how its overwhelming our hospital systems. If a family member has decided to socialize (church, bar, big gatherings, working with someone who now has flu like symptoms) recently, don’t allow them to come over for a few weeks. They can spread the disease before they even know that they have it.
Although I haven’t had to deal with this directly, I’m pretty sure in the US the process goes like this- patient asks doctor, doctor agrees its worth trying, doctor asks/petitions company (and may at the same time petition patient’s insurance), then the FDA has to grant approval if not already done for that drug. So the doctor has to contact the pharmaceutical company. The doctor may think it’s not worth the risk and if so that’s the end of the plan (before it ever gets to the pharm company or FDA). Also, in the US, most insurances will not cover experimental treatments, which include compassion use drugs. That’s why the doctor has to petition for insurance coverage also. A lot of pharmaceutical companies will provide some type of relief or vouchers though if they believe their drug may help you. If I remember correctly one patient here was able to get Keytruda for free after the first couple of infusions showed benefits. You can probably ask this same question on the cholangio warriors patient facebook page for a more detailed response from patients who have taken this route.
Catherine,
I am so sorry for your loss. Your mom’s story inspired many (including me and Kathy) to have hope beyond the initial grave diagnosis given to most. You have our deepest condolences
https://www.cancertreatmentsresearch.com/community/immunotherapy/dr-williams-clinic/ This had a patient perspective thread with a patient (meech) who had a similar cancer to cholangiocarcinoma. Not sure if reading the thread will give you the answers you seek.
There is a clinical trial now recruiting that wants to combine intratumoral chemo (cisplatin/vinblastine) and immunotherapy in some centers in the US- that may be an alternative to what you suggested with Dr. William’s Clinic.
Good luck in your journey
Im sorry to hear of your moms diagnosis. You didn’t mention where you are being treated, so I think the first step is to seek a second opinion at a major cancer center (MD Anderson, Sloan Kettering, etc) if you are not at one already. Browse the posts on these sites as much as you can tolerate to learn more about the disease and how people have handled it. Was your mom’s tumor biopsy sent for genetic testing? If not, push your onc to do it or have them send it to Foundation One- those results may open up a whole new set of treatment options for your mother. Good luck!
I have no experience with md anderson cooper, but if you live close enough to it you should also be close to Fox Chase, where some former members have been treated. We went there for a second opinion and liked the drs we met, but kathy stayed with mskcc as they offered the same things.
Karen,
Is the mass confined to your liver or has it spread to other parts of your body? If it is still only in the liver, go to one of the surgeons experienced with CC- the general surgeon at jefferson may not have been experienced enough for a resection but if you are a surgical candidate, you should seek out surgical opinions quickly. YOu may be able to send your scans to some surgeons to see if they will see you for a second opinion. Seek out one of the liver surgeons at Fox Chase in philadelphia, Johns Hopkins, and in NYC ->MSKCC (Dr. jarnagin), Mt sinai (Dr Schwartz) and Columbia (Dr. Kato). Worst case you have a second opinion which says surgery is not an option. Best case you get an experience surgeon giving you a better chance at beating this cancer.
Billy
Maryrita,
My wife has both PSC (found out at her liver resection) and ICC, as well as UC. She was diagnosed sept 2016. There are multiple posts on here to help people get started in fighting this disease, but the main/common themes are: Get copies of your scans. Get a good surgical resection opinion (although it depends on which lymph nodes are involved, where your tumor is etc, usually with lymph node involvement you wouldnt be a surgical candidate up front). Get a medical oncologist who treats this disease and also a second opinion – the first chemo they try is usually gem/cis. Ask to get your tumor and blood tested for genetics. Based on the genetic profile of your tumor there may be targeted therapies available or clinical trials that you can be eligible for. You’re likely in good hands at Mayo, but there are other major centers that are also good if you want second opinions- MD Anderson, MSKCC, etc. You may want to also join the cholangiocarcinoma warriors facebook page which is for patients only and ask some questions there as well as on this board. Good luck in your journey.
-Billy
