vtkb
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This is the update i never wanted to post but here it goes- as Kat mentioned, she had to delay the trial for a few weeks, but restarted on a lower dose, then repeat with that due to her blood counts. She also started having effusions in her lung where the biopsy was done, requiring a draining. Having to move to a hotel due to a flood didn’t help matters, and kat started to have a severe decline in her appetite. Although the ca 19-9 showed the drug may be working, she kept having to push off treatments for her platelets to recover. The pain flare she stated before was actually Mets to her hip that they hadn’t seen on previous scans. Once the pain became unbearable we went for scans of the hip and also had a pleurex drain placed. Kat was kicked off the trial, and brain Mets were also found. She then waited a month for radiation, which further led to her declining appetite and quality of life. She was started on gem abraxane and and felt great that day, but a week
later was hospitalized with a gi bleed due to low platelets. Her liver was also starting to fail as evidenced by the ascites coming back and needing to be drained repeatedly. Her pleurex was removed as the lung fluid stopped (maybe biopsy related seeding cancer cells) , but the ascites was unrelenting so,she also got an ascites drain which she desperately wanted. Maybe Covid and chemo just finished off what the psc started, even though there were still no liver Mets left behind. She came home for thanksgiving, then had a bacterial peritonitis (infection of the ascites) and came back to the hospital in septic shock. Although she recovered from that, being back to herself on last week Monday -Wednesday, theinfection, antibiotics and malnutrition took its toll. Wednesday morning Kat was as good as I e seen her in weeks, but by that night her mood had changed. I’ll never know if it was the culmination of 5 years of fighting, or new brain Mets, or the infection, or lack of food, or the mental toll of being back on the onc floor where she heard people sufffering last time, but the fight was no longer there. There were some glimmers of hope over the next few days but ultimate Kat has chosen hospice and I am trying to honor her wishes. I assume she’ll pass any day now. I know she didn’t want to inconvenience me by being a cripple in our home, and that’s quintessential kathy- thinking of others even when she’s suffering. I just wanted to write this for my own mental health but also to close at this story. When I first joined the site I read a bunch of young peoples accounts, but some had no ending and that scared me. 5 yrs ago one surgeon gave us hope of 4 good years, and at least we got a little more than that despite the lost Covid year. We got married we’re able to travel, etc. I’m going to step away from this forum for a while, maybe forever, but I will continue to do fundraising for the foundation as I am very grateful for its help, as is Kathy
Parp inhibitors have shown increased effectiveness in those with BRCA family mutations- something to talk to your dad’s oncologist about.
Anna,
I am sorry for what your family has been through and is going through. I’m sure others will jump on here and share their experiences. Is your mom being treated at a big cancer center? If not, you may want to ask for a second opinion there to reassure yourself that your mom is getting the best treatment. Gem/cis is usually the first line chemo for cholangiocarcinoma. Have your mom’s biopsies been tested for genomic mutations? Given your families history I’d suspect some mutations led to the cancer, and there may be targeted therapy available. If your mom’s doctors cant test for the mutations you can try to ask them to submit samples to Foundation One/ foundation medicine. I wish your mom good luck in her journey.
-billy
I’m sorry to hear of your wife’s diagnosis. I’d advise her to join the cholangiocarcinoma warriors Facebook page to gather more stories from fellow patients. While I check here periodically, my wife (who has intrahepatic CC) only posts/checks the facebook page.
To answer your question a little- Gem/cis has been the standard first line treatment as far as chemotherapy goes. So the trial will test if adding Keytruda will be better or not than the standard treatment. Keytruda has helped some people with CCA (cured one that I can think of off the top of my head), but not everyone who gets it benefits from it. Has your wife had her tumor biopsied? If so, was it checked for genetics mutations? Depending on the genetic profile of her tumor, options (including keytruda) can be tailored to her tumor. Also, has she had a second opinion regarding the resectability of the cancer? It’s important to seek out a surgeon and oncologist who has a lot of experience with this disease- for instance in the US its better to be treated at a major cancer center, at least initially. This is still a rare cancer, so experience counts.
I wish you both the best – this journey unfortunately becomes a rollercoaster quickly. Good luck!
Just another update- despite both of us being vaccinated, kathy caught covid – her only unmasked exposure was ironically enough for the MRI for radiation mapping. She’s doing ok, was able to get monoclonal antibodies which I will post about separately. Hopefully this will allow her to continue her treatments uninterrupted.
Kathy had her wbc drop during radiation after starting xeloda- enough so that she caught meningitis and her onc never considered xeloda again. During her initial chemo, she only needed neupogen/neulasta once or twice. When the metastasis appeared, she was put on gemox every other week, but after about a 7 months it had to be stretched to every three weeks because of her WBC and she was getting neulasta every time. I wonder if that helped her cancer grow, but it is what it is. Now that she is on FOLFORI every other week her WBC has maintained steady, but she still gets a neupogen shot every time.
Just for those who are curious, when on gem/cis the lowest WBC counts (the nadir) tends to happen around 10 days after chemo.
I’m sorry to hear about the metastasis. Has your tumor been genetically profiled? Some mutations can lend themselves to good responses to chemo or open up immunotherapy or checkpoint inhibitor drugs as a treatment option.
Regarding your main question- I can tell you my wife has been through countless chemo treatments- you can search her posts here on the forum (36 yr old with CC-update) – but to quickly summarize it has been: Gem/Cis for 5 months on a 2 week on, one week off cycle. Then surgery, then 3 months of gem ox on a every other week cycle, then radiation with like a week of xeloda (she got meningitis, long story), then a year of NAD. Unfortunately she had a recurrence/mets to the lungs, skull and spine in Dec 2018 (really october, but found in dec) and has been on chemo ever since- Gem/ox every other week for about 9 months, then every 3 weeks bc it was affecting her blood counts too much for about another 9? months, and now Folfori every 2 weeks for the last 5 months. She has the ATM mutation which is sensitive for platinum drugs so that helps. She worked for the first two years of chemo as a physical therapist. The cisplatin did cause some hearing issues. The folfori kicks her butt/appetite for 2 days. She has been given neupogen or neulasta since the meningitis with each chemo even though with the folfori her counts arent affected as much. It’s been a 4+ year fight so far, we’ve lost count on what cycle of chemo we are on. This past year she’s lost some weight.
Others get hand -foot issues (I hear xeloda can cause it), extreme fatigue, brain fog, nausea but thankfully my wife hasnt really experienced much of any of that other than in the very beginning. I wish you all the luck to continue with your treatments.
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.
