August 13, 2018 at 1:14 am #97356
Good news! After 5 infusions of gem/cis, Patrick’s scan show the disease is “stable”. The 3 tumors in his liver have not shrunk, but they have not grown either. The enlarged lymph node has shrunk by 50% and his CA 19-9 has decreased by more than 50% since April. We were all happy with the news! He will continue to receive gemzar/cisplatin every other week until his next scans in 2-3 months. He is able to tolerate the chemo side effects pretty well, although he continues to need antibiotics every 10 days or so for infections caused by his bile not flowing. He takes a 3 day course of antibiotics and his fever goes away. One new side effect: He previously had a tiny bit of hair thinning with his first chemo regimen in 2017, but he has experienced much more hair loss since restarting in May. Oh well.July 13, 2018 at 5:05 pm #97257
Thank you Mary & Tilly for the feedback! Good point about the new patient requirements. MDA will not even schedule a visit until his treatment has “completed” even though he is on continuous chemo. They also will require all scans to be repeated at their facility. UCSF will schedule an appointment after they review his medical records and they do not require scans to be repeated. The folks at UCSF have been very friendly and informative. They mentioned Dr. Kelley specifically and said that Patrick would definitely be scheduled to see her due to his diagnosis.July 11, 2018 at 7:52 am #97245bglassModerator
I am sorry to hear that Patrick’s chemo regimen is taking such a toll on him, and might be starting to show signs of losing effectiveness; hopefully the next scans will paint a more optimistic picture. With this cancer, one always has to be mentally lining up possible next treatments however, so it is good you are doing so.
I looked at the research on BRCA and cholangiocarcinoma and the two institutions you have identified seem to be leading on this rare subset of CCA patients. In considering which to go with, you might also investigate the requirements they place on new patients, e.g., must there be a washout period from current treatment, do scans and tests have to be repeated, how long is the wait for an appointment.
Please keep us posted, and best wishes that Patrick’s infections calm down.
Regards, MaryJuly 10, 2018 at 8:48 pm #97242
Victoria- I’m so sorry to hear about Patrick’s troubles with the chemo regimen but I did want to chime in about our experience at UCSF. We have been consulting with Katie Kelley for second opinions. As you noted, she is on the CF medical advisory board and was a co-chair for the most recent Foundation conference in Salt Lake City. I really cannot recommend her highly enough. Her training and experience are impeccable but she is also a very kind, compassionate, and responsive doctor.
We met with her in person last Fall and she was very generous with her time and gave Peter a thorough examination. Since then we have mostly consulted with her via email and have kept her updated by sending her Peter’s ongoing medical record info and scan images. She has offered to share this information with UCSF’s interdisciplinary oncology team and given us additional consultation. We consider her an integral and invaluable part of our care team. I hope this feedback is helpful and I wish you and Patrick all the best, TillyJuly 10, 2018 at 1:01 am #97238
Patrick is still on Gem/Cis and has not gotten a scan in 2 months. After his first dose he needed 3 weeks to get his blood work back up to par, so they changed his schedule from 2 weeks on/1 week off to every other week. That means it has taken longer to get 6 infusions in. His 5th infusion is scheduled for this Friday. The chemo has been hitting him a lot harder this time around. He previously had never had chemo delayed. He also continues to get infections (indicated by fevers), which can be a bad sign that the tumors are not shrinking enough to let the bile flow. He has antibiotics that he starts every time he gets a fever, and he feels better in about 36 hours. It is unfortunate that he can go from feeling good to being so sick he needs to be in bed within 1 hour. He hasn’t gone longer than 10 days off the antibiotic. Ugh!
The Foundation One report identified 4 genomic alterations and 2 additional findings. None of them had any FDA-approved therapies for clinical trials. The doctors here, at Seattle Cancer Care Alliance, and UW Medical Center all concur that PARP inhibitors would be the next step if this chemo is not working, since Patrick has a BRCA variant. Everyone also concurs that further surgery and radiation therapies are not an option now or in the future (he already had a big resection on 12/1/16).
His oncologist is moving from the area at the end of the month. We might choose to switch to a breast cancer oncologist since they would have more experience with PARP inhibitors.
Our plan is to wait for the scan results. If it shows the chemo is not working, we plan to go to MD Anderson in Houston or UCSF. It would take us 2.5 hours to get to UCSF (with a direct flight) and 6 hours to get to Houston (no direct flights) from Spokane. Both places have potential clinical trials with PARP inhibitors, but UCSF has 2 docs on the Foundation’s Medical Advisory Board and MDA only has 1 doc. Any input on that??? I’ll post again when we get the scan results.May 23, 2018 at 4:12 am #97013middlesister1Moderator
I’m so very sorry it’s back. I know it’s hard to think of anything good at this point, but I was encouraged to read that his recurrence is localized in the liver and the rest of the scan was clear. I hope the Foundation One ( or a targeted treatment) gives you a path ahead to get it back into remission.
CatherineMay 21, 2018 at 11:03 am #96995
Victoria- I’m sorry things have taken a difficult turn, but I wanted to say how much I admire your resilience after getting tough news. Besides all the physical insults, this disease can really take a toll on the mind and spirit of both patient and caregiver/spouse. I will be keeping a hopeful thought that you get good guidance and support from your care team as you go back into battle mode. Sending positive energy your way, TillyMay 19, 2018 at 3:49 pm #96993lilitmParticipant
Dear Victoria, I’m so sorry for everything your husband is going through, and you with him. My dad also has a mass encasing the portal vein / bile ducts (it was there upon diagnosis, along with peritoneal mets). Perhaps a consult with an interventional radiologist might be helpful to see if there’s anything they can do? I’ve looked into IRE/nanoknife for around the portal vein (but it seems my dad isn’t a good candidate because of the peritoneal mets.) I hope the Foundation One samples will lead to a targetable mutation or immunotherapy indicator (you might want to ask them to test for all the immunotherapy indications – I didn’t know to ask back then, and they never tested for PD-1/PD-L1.) It is so frustrating to have to wait before going to MD Anderson, I wish they wouldn’t do that! Are they making him get his next scan there?
In case it helps, a few things helped my dad tolerate gem/cis well – mainly drinking tons of water, exercising whenever possible, plant-based diet, acupuncture, ginger, probiotics, cbd oil, and medical marijuana (if it’s possible where you are). I know your husband has already been through it but just in case…
Warmest wishes and hopes! LiliMay 19, 2018 at 12:23 am #96988
It’s back. An MRI from late March showed 2 slightly enlarged lymph nodes that the radiologist labeled stable, but which concerned Patrick’s radiation oncologist enough to order a PET CT. The PET CT was clear everywhere except inside the liver, and another MRI less than 6 weeks after the first showed “The mass encases the intrahepatic portal veins and bile ducts…” with 3 listed lesions of 5cm, 3.1cm and 2.4 cm. A needle biopsy was conducted on 5/9 to confirm cancer and to get samples for Foundation One. Results should be back by the end of the month, but he started back on gemzar/cisplatin today. We are going to Seattle Cancer Care Alliance for a second opinion on Wednesday, but since he started chemo today MD Anderson said they will not see him until he needs his next set of scans at the end of July. I am frustrated with the wait since he feels so good right now and it would be easier to travel from Spokane to Houston when he feels good, not worn down by the chemo!
He was originally diagnosed in Nov. 2016. He had his common bile duct, gallbladder and 2/3 of his liver removed on 12/1/16, but without getting clear margins. Six rounds of gemzar/cisplatin followed by 5 weeks of radiation with 5FU chemo that ended in August 2017.
His oncologist is moving in July, which worries us. We were devastated when we got the 2nd MRI results, but we feel better now. I love reading the stories of people who have had recurrences and are still here to tell the tale! Thank you everyone for sharing.January 19, 2018 at 3:46 pm #96482
Yay Victoria! Very happy for this update, three cheers for “normal!” All the best, TillyJanuary 19, 2018 at 11:49 am #96478
More clear scans to report! Both his MRI and chest CT were clear and they have scheduled him to have his port removed. He has had it in for almost a year and will not be sad to see it go. He is doing so well, although he physically is not back to where he was before surgery and treatment. Dec. 1 was the 1-year anniversary of his surgery, but Dec.30 was the 1-year anniversary of his hospital discharge (multiple infections kept him in the hospital for 30 days). He finished chemo at the end of June and finished radiation at the end of August. Neuropathy in his feet continues to be his biggest irritant, although he still has a bit of a rash on his hands.
He has just started weaning off of Reglan (metoclopramide) (on it since the surgery), and will be weaned off Protonix (pantoprazole) after that. He will remain on the vitamin B complex and baby aspirin (he developed blood clots in the hospital and in 2014).
We are really enjoying this sense of “normal” that we have in our lives right now. He recently signed up to participate in a Livestrong program at our YMCA. He will be scheduled to have a PET CT in 3 months.October 7, 2017 at 11:04 am #95773gavinModerator
Yay! What great news! Thanks loads for sharing that with us all. Fingers are crossed as well for the neuropathy and for that to get better very very soon as well!
My best to you both,
GavinOctober 6, 2017 at 1:29 pm #95771
Very, very happy to hear this news! My hubby just had his second (of thirty) radiation treatments this morning. We are nervous about what’s in store but hopeful that he’ll make it through all thirty. Thank you for the update and I’m so glad for your family!October 5, 2017 at 5:41 pm #95761middlesister1Moderator
I will add another YEAH!!!!!! And, love seeing your picture 🙂 As a mother of a daughter who is a visiting professor and on the job market, I know that if your husband managed to become a prof, he can overcome anything.
CatherineOctober 5, 2017 at 4:52 pm #95760bglassModerator
What wonderful news! Thank you for keeping us posted. Hopefully the lingering side effects will subside with time.
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