April 26, 2017 at 5:11 am #93309
Fantastic news, spokanemom, I am thrilled to hear of Patrick’s excellent response to gem/cis.
Congratulations. I wish for all good things to continue.
Interesting to hear that Patrick also has the BRCA1 gene mutation.
Keep on delivering this fantastic news, dear spokanemom. We are rooting for you.
MarionApril 26, 2017 at 12:13 am #93308
Patrick’s MRI was clear!!! We were so relieved! That means that he can continue receiving gemzar/cisplatin. He has started to get GCSF after every chemo dose, and they are trying to get insurance to approve the longer lasting version. Yesterday, he vomited for the first time since beginning chemo in February. It might have something to do with the fact that the other 3 people in our household have sky high fevers and nausea. Thankfully, his oncologist put him on antibiotics when the first kid got a fever, so Patrick has not developed a fever.
He will be scanned again near the end of June. The oncologist said that scan would be a CT or PET CT, and would be a larger field that the MRI.
His genetic testing showed that he has the same BRCA1 “variant of unknown significance” that his mother has. She had breast cancer at age 38 and 63. Two of her three siblings also had cancer, one dying at the age of 52. The news was not shocking, but good info to share with the rest of the family.April 11, 2017 at 1:07 am #93307
spokanemom…..often times biopsy tissue is not enough to adequately identify molecular alterations, but I am surprised that no mention was made of the now available liquid biopsy.
Liquid biopsy is a test done on a sample of blood to look for cancer cells from a tumor that are circulating in the blood or for pieces of DNA from tumor cells that are in the blood.
This link provides excellent information:
Also, please know that a gene for cholangiocarcinoma has not yet been identified. From what I have learned is that families with a background of cancer (not specifically cholangiocarcinoma) should consider genetic testing.
This link provides detailed information:
Please keep us posted. We are in this together.
MarionApril 10, 2017 at 3:49 pm #93306positivityParticipant
Just curious why he has not had an MRI ever? Is CT and PET more accurate for showing spread of disease and the size and locations of tumor? My understanding is that MRI can also show if the cancer has spread and tumor locations. PET shows more of the activity of the cells and if they are fast moving. Also, is there a reasoning behind the 6 months of chemo? Again, curious of why certain lengths of time are chosen.
Thank you for posting, and I hope good outcomes.April 10, 2017 at 6:32 am #93305
I wanted to give another update. Patrick just finished his third round of gemzar/cisplatin. He is tolerating chemo pretty well. He has begun getting GCSF after his second week of chemo in order to help his blood counts bounce back up. He is doing 2 weeks on followed by 1 week off. Since it has been 2 months, he will have an MRI before his next round to see if any cancer is detected. He has never had an MRI. All CTs and PET CTs have shown No Evidence of Disease, even when they knew he had a tumor and they left positive margins during his resection.
His oncologist told us that she wants to do six MONTHS of chemo before radiation. Due to his work schedule, it was agreed that we will shoot for five months of chemo in order to finish radiation before the end of August. Does this seem like a super-long time for chemo? Of course, it is dependent on his scans continuing to show NED.
The other bad news is that the tissue sample sent to FoundationOne failed and the pathology department at our hospital has said they do not have enough tissue to send another sample. So disappointing because the surgeon had said there should be plenty of tissue for sampling because the tumor was 5.2cm. The lab said that they don’t have enough left and there is nothing we can do about it! The oncologist said there was a lot of discussion on the liver board about this, but really, there is nothing to be done except biopsy any new tumors. Ugh! I hope this is not an issue because Patrick will never have tumors ever again!!
We will go over the results of his genetic testing tomorrow. It will not change his treatment plan, but we might have some thinking to do about our kids and his brother.February 3, 2017 at 11:16 am #93304middlesister1Moderator
I am so sorry that you have a plan to move forward and instead have to deal with the setbacks (we all hate this disease SO MUCH)- I hope things turn around quickly and that Patrick starts feeling better soon.
CatherineFebruary 2, 2017 at 6:38 pm #93303
spokanemom……I am so sorry to hear of the all the complications accompanying Patrick’s treatments so far. Oh, my. Please tell him to try to keep his spirits up, as he had a major setback. Things must go up from here. That’s what I wish for.
Thinking of you and sending a tidal wave of good wishes your way,
MarionFebruary 2, 2017 at 4:32 pm #93302darlaParticipant
So sorry to hear this. Hoping they can get this under control and things will move forward. I am glad to hear that they are keeping the pain under control. That is so important. Also encouraging is the shrinkage. I’m hoping you will hear from Foundation One soon. Although I am sure Patrick does not want to be in the hospital, I think that is the best place for him at the moment. A 3rd opinion can’t hurt either. Please let us know how things are going. Hoping for the best. Take care.
DarlaFebruary 2, 2017 at 6:13 am #93301
Update. This was supposed to be the plan for this week:
Monday – Get the biliary drain removed after having it more than 9 weeks
Tuesday – Get a port implanted
Wednesday (today) – Fly to Seattle just for the day to get a second opinion from Dr. Philip Gold at Swedish
Thursday – Start chemo, 10 weeks after surgery (where they did not get clear margins and chose not to perform the Whipple)
Instead, Patrick spiked a fever (103.3) and started vomited about 3 hours after the biliary drain was removed. At 10pm, his surgeon canceled the port install that was scheduled for Tuesday and instead told Patrick to get to the hospital by 7a to be admitted for further testing. A CT showed a pocket of bile right next to the biliary drain exit site. They installed one of those bulb drains and Patrick will stay in the hospital until they grow enough bacteria to determine the best antibiotic to send him home on. The surgeon thinks the antibiotic will need to run 7-14 days, and he will not install the port until Patrick is infection-free.
Patrick was so disappointed to start vomiting. After spending 30 days of December in the hospital (much of it vomiting), he had not vomited once in the 31 days he was home! He had been feeling so good and had gained back 5 of the 24 pounds he had lost. The good news is that he has not had a fever at all since being admitted to the hospital. The other good news is that the CT showed that the one enlarged lymph node seen on a scan from Jan 9th has shrunk.
I am looking at this as an opportunity to wait to start chemo until after we get the results from FoundationOne testing. Unfortunately, the first sample they received from the pathology lab was “conditional” (did not contain quite enough tumor material) and they had to request another sample, so testing has not yet begun. We can also try and see Dr. Gold before chemo starts, just to get that second opinion (which I guess is really a third opinion since Dr. Andrew Coveler consulted on the first one).
Patrick is in a lot of pain, but they got that under control today by adding Toradol to the Fentenyl patch and Dilaudid. Now he just wants to come home. His roommate is really loud and he does not sleep well at the hospital. It is hard to be patient and I don’t like to think about what the cancer has been doing over the past 2 months, without any chemo to stop it, and Patrick’s immune system down from the surgery and all the post-op infections.January 20, 2017 at 3:59 am #93300
Victoria…..we don’t have current statistics for this cancer. Those we have to await in the years to come. I like to think of this cancer as that of a chronic disease, you move forward with treatment of choice and when and if drug resistance occurs, the next step will come into play. There is hope, dear Victoria. Presently I am attending GI ASCO and I am in awe of the increase of research for cholangiocarcinoma. Only a few years ago we were fortunate to witness a handful of abstracts and poster sessions, but this year the presentations are multifold.
As you mentioned, molecular testing may reveal DNA alterations for which a targeted drug is applicable. So, you go from there.
I am thrilled that Patrick is home. He will thrive in this environment.
MarionJanuary 19, 2017 at 1:09 pm #93299lainyParticipant
Dear Victoria, WOW! What a journey you both have had so far and I sure hope a smoother road is right around the corner. Statistics, a word we try not to bank on as everyone seems to be so very different and it does sound like you are in good hands in Seattle. I wish I could be of more help but I am sure others will chime in here. Keep on doing as you are doing and I am wishing you both the very best.January 19, 2017 at 3:46 am #93298
Here is an update. My husband was released from the hospital on Dec.30, after a 30 day stay. He went home on IV antibiotics that finished on Jan.14. He had his abdominal drain (for a second abscess that developed) removed on Jan. 16. After repeated vomiting in the hospital, he has not vomited once since returning home. He is able to eat most things that he wants to eat. He has lost 20 pounds since November, but he is just starting to gain some back.
All scans show NED (as they always have, even when they knew a 2cm tumor was in his CBD), although the CT from Jan.9 shows an enlarged lymph node. Bloodwork is mostly good, with elevated ALK PHO and low RBC and Hemo. Recall that he had his common bile duct, gallbladder, left liver lobe and 3 slices of his right lobe removed on Dec.1. He is stage 3B because one local lymph node was positive, along with the tumor in the CBD, and cancer in the gallbladder with positive margins in the liver and down by the pancreas.
The plan is to start gemzar/cisplatin on Feb.2. His biliary drain is scheduled for removal on Jan.30, which is why they are waiting to start chemo. I understand that they can start chemo while the biliary drain is in place, but they want to give him more time to recover from surgery. He will have 2 rounds of chemo before another scan and probably IMRT (radiation) followed by more rounds of chemo. We just got approval to have his tumor tested by FoundationOne, so that might change the plan if any mutations are identified. We love his surgeon, Dr. Juan Mejia, and oncologist, Dr. Mei Dong, here in Spokane, WA, but we are getting a second opinion from Dr. Philip Gold with Swedish Cancer Clinic in Seattle. Dr. Dong has already collaborated with Dr. Andrew Coveler (UWMC, Seattle Cancer Care Alliance) on the treatment plan, so we wanted to get an outside opinion.
Our insurance denied our request to seek a second opinion at MD Anderson, but we decided that was not really a good option for us at this point since we are not interested in actually receiving any treatment in Houston as it is so far away. We can request this again if he fails this first-line treatment, but Seattle is so much closer a more realistic option.
Patrick is doing remarkably well, especially considering he was in the hospital for a month. He was in great health to start, as he is a bike commuter and clean eater. He is a professor and has been able to arrange his schedule to be very flexible this spring. We just do not know how he will react to chemo or radiation, so the flexibility is really nice. Although we have read lots of info, we were still disappointed when Dr. Dong told us that while gemzar/cisplatin is the drug combo of choice for CC, only 30-40% of patients have a response. When Dr. Mejia was not able to get clear margins on Dec.1, he told us that the average life span for cc patients with those conditions was 30 months. Those statistics seem so horrible, but they match the horrible statistics I have read about. Are there any more recent ones?
Patrick will also have genetic testing done. He was previously tested for Lynch Syndrome since he had multiple non-cancerous colon polyps at age 40. That was negative. His mother first had breast cancer at age 39. We have two children; a boy age 13 and a girl age 10.
Thank you to everyone for sharing your stories and all the information. This site has been so helpful to us!
VictoriaJanuary 11, 2017 at 9:57 pm #93297mattreidyParticipant
Please be sure to get genetic testing done on your husband’s tumor. That is the key to potential new treatments. There is still hope. See my story here: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11456December 29, 2016 at 7:04 am #93296
My husband did not lose his appetite or any weight after the stents were installed. He actually felt much better after the pancreatitis was taken care of, which took awhile. He was getting quite jaundiced before the stents were placed and something needed to be done.December 23, 2016 at 2:15 am #93295rwpavocatMember
Hi, my experience with my husband is when the stents are placed effectively his feeling of fullness lessens /disappears and he feels more like himself in a couple of days. Never hesitate to say things dont seem right or are not working…they may be able to do better.
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