spokanemom
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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.
Interesting questions. I am responding about my 42 year old husband, who was diagnosed in November:
1. No other medical conditions
2. No prescription drugs
3. Very active in fitness. Is a bike commuter. Resting heart rate in the low 50s.
4. Everything diet, but very light in red meat and heavy in veggies and whole grains.
5. Not inflammation, but has had issues with reflux and heartburn for years.
6. Tons of other cancers and at young ages. Mother survived breast cancer at age 39 and again at 63. One aunt with breast cancer in her 50’s and another died from colon/liver cancer at age 52 (it was advanced when discovered). Those ladies’ parents died from colon and ovarian cancer in their 70’s.Joe,
I am so sorry about the bad news you received. We just visited Dr. Philip Gold with Swedish Cancer Institute in Seattle for a second oncology opinion. He stated that if my husband was not successful with the first line treatment of gemzar/cisplatin, then the second line treatment recommendation would be folfax. He would recommend folfax for second line treatment regardless of the test results from FoundationOne genomic testing. We will review that recommendation with our local oncologist, who seemed more open to using the FoundationOne results sooner rather than later. I know each case is different, but I hope that info helps ease your mind.
VictoriaUpdate. 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.
Kathy,
Thank you. We did get the insurance to approve testing by Foundation One, and they received a sample, but it was “conditional”, so they requested another sample and hopefully that will be “sufficient”. If not, the doc has to decide whether to proceed with the test using just the “conditional” sample size. I guess it did not have quite enough tumor material in the sample they received.I really hope they get a better sample from the pathology lab!
VictoriaMy husband had abdominal discomfort for 6 weeks before seeing a nurse practitioner on Halloween 2016. She ordered blood work, which showed elevated liver functions. They did an ultrasound, which showed a calcified gallbladder, with stones. He was scheduled to have his gallbladder removed, but his bilirubin was spiking so they figured a stone must have gotten out of the gallbadder and was blocking the common bile duct. They did an ERCP instead and discovered a tumor in the CBD. They did brushings and “bites”, which indicated cholangiocarcinoma.
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!
VictoriaAli,
My husband was diagnosed with Stage 3B perihilar cc in December. They were hoping he was stage 1, but during his 16 hour surgery on Dec 1, they found that in addition to the tumor in his common bile duct, there were cancer cells within the liver ducts and down by the pancreas. His gallbladder and one local lymph node also tested positive. He had his common bile duct, gallbladder, and left lobe of his liver removed, along with part of the right lobe but they never got clear margins either.They are recommending gemzar and cisplatin along with radiation. They will do at least 2 rounds of chemo before the radiation though.
I wonder why the difference in recommendations. We did just get approval from our insurance to get his tumor genetically tested through FoundationOne. Have they done that for your mom already?
Best wishes,
VictoriaThank you so much for sharing. I am also new to this. My husband is 42 and our children are 10 & 13. He has been in the hospital 4 weeks today after an unsuccessful surgery. I look forward to the next step of chemo, also Gemzar and Cisplatin, but we want to get a second opinion at a major medical center. His tumor has not been tested for mutations yet and I just got the form from Foundation 1 to ask the oncologist to fill out. Keep us posted!
Thank you so much for sharing! My husband had surgery on 12/1/16 and they came out after 4 hours to tell us that the margins by the liver and the pancreas both tested positive for cancer, even though the only tumor was 2cm long in the common bile duct. Long story short, they chose not to do the Whipple after resecting more than 70 percent of his liver without getting clear margins. They have told us he is not a candidate for further surgery. We plan for chemo after he recovers from his 16 hour surgery, and your Mom’s story gives us hope!!
Tomorrow will be 4 weeks since my husband’s surgery and he is still in the hospital, although very close to being able to go home. The abscess migrated infected fluid into his right lung and he ended up needing 2 chest tubes for a week, which were taken out yesterday. It has been frustrating to deal with one complication after another, but we are seeing the light of a possible return to home in the next 4 days.
He is eating (and LOVING) solid food and taking long walks. He did have a small fever early this morning, and at this point it is the Infectious Disease doctor who will determine how long he needs to stay in the hospital. They do not want to send him home until they are certain he will not develop another infection.
He will need to be on 3 antibiotics for an additional 2 weeks, so chemo cannot start until then. At this point, the liver board here in Spokane has recommended that he begin with just chemo, Gemzar & Cisplatin.
We have decided to get a second opinion and would like to try the Mayo Clinic. Does anyone know the difference in care between the Rochester and Scottsdale locations? Any particular doctors you do/do not recommend? I see that many of the clinical trials have a contact listed at the Scottsdale location. We could get a direct flight to Phoenix, but not to Rochester.
We can also get a direct flight to UCLA if anyone has good recommendations there. I left a message for the Dumont Liver Cancer Center on 12/22 and no one has returned my call yet.
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.
Hi Ron,
My 42 year old husband was diagnosed with Stage 3b perihilar cholangiocarcinoma last month. I am curious about the statement “A biopsy was performed during the initial endoscopy procedure. Molecular tests revealed no mutations,”Where was the molecular testing performed? My husband had a liver resection that did not finish with clear margins, and I do not believe that any testing has been done to the tumor they removed from his common bile duct. Did you have to request that be done, and if so where?
Thank you so much for sharing!
VictoriaHe actually did not have vomiting until they tried to transition him to oral pain pills, which is why the doc believed it was probably the pain medicine causing it. They switched him to a pain patch, and a different pain med (dilaudid) as a booster whenever he wants.
The scope today showed no blockage (good news)! My husband feels so much better after they drained about 3/4 of a liter of fluid from his right lung. No big fevers today and he is feeling much perkier. They changed antibiotics yesterday based on the analysis of the abscess fluid and hopefully that helped too.
The liver board here recommended chemo first, then radiation followed by more chemo. Chemo first (gemzar and cisplatin) to try and shrink the size of the radiation field. They also recommended that if we want a second opinion, we get it from somewhere other than Seattle, since they worked closely with doctors there on Patrick’s case already (Dr. Coveler). They recommended the Mayo clinic or MD Anderson if we want a second opinion. Someone recommended Dr. Robert Wolff at MD Anderson. Thoughts??
