Search Results for 'gemcitabine cisplatin'
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Search Results
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Iowagirl,
This is what the Onc @ Mayo recommended as I met with him while in bed recovering from surgery:
“We reviewed with Mr. Reidy that we are hopeful that this tumor was completely resected and node negative. Despite this, I think the recurrence risks are still significant. Given the rarity of the tumor, there are no prospective randomized trials regarding the value of adjuvant therapy, but retrospective analyses would suggest there is likely some value to this.
In general, I have recommended six months of adjuvant gemcitabine as a very reasonable starting point for discussion. This is the most active single
agent in this disease and does have proven adjuvant benefit in pancreatic ductal adenocarcinoma. This is often well-tolerated with only a few severe side effects such as TTP and pulmonary fibrosis.In metastatic disease, the addition of cisplatin to gemcitabine improves response rates and progression free survival and overall survival. He understands it is unclear whether that means it would be of further adjuvant benefit, but if the physician and patient wanted to err on the side of being more aggressive, this is also quite reasonable.
One could consider gemcitabine and cisplatin in the day 1, day 8, fairly low dose platinum schedule as outlined in the New England Journal of Medicine phase III trial in advanced disease and perhaps attempt four to six cycles of this.
I would certainly back off early with the cisplatin given the unknown benefits if he ran into early troubles with renal toxicity, neurotoxicity, ototoxicity, or other toxicities.”
Iowagirl wrote:Matt, I really appreciate you replying to my first post here. You are the very first person who seems to understand exactly what I’m feeling right now. I’m considering finding a therapist to talk with…..heck…at this point…my out of pocket is more than met…why not. I’m glad to hear that is helping you. What were the long term effects of the chemo you mentioned? I’ve been trying to look into this, but since I have no idea what they have in mind, researching it is a shot in the dark. I think that because I had a small satellite tumor along with the main tumor, my survivability goes down some, and intrahepatic tends to come back more frequently from what I’ve read. What the heck….all bile duct cancer is bad stuff. I, too, am hoping to be in the 60-70% chance group in which it doesn’t return. Really….I am soooo glad to hear from you though. The emotional and anxiety aspect of this and reactions of people around me just has me feeling out of control. I am quite certain that most everyone who has been diagnosed with cancer of any kind has these feelings to some degree, but when you get a diagnosis of bile duct cancer….or pancreatic cancer….some of the more aggressive and resistant cancers and you hear the numbers, it’s more depressing.Hello all,
Well, they sent my son home, he was very happy to be discharged last week.
Now today he went back for his blood test and check up. They say they want to start him on his chemo as soon as this new blood work comes back.He says that his stomach is bothering him a good deal of the time. He still vomits occasionally, and has a kind of nauseaus feeling a lot of the time. I told him about the Marinol, but I guess he doesn’t feel bad enough to consider asking for that yet.
I had asked them to please find out what the meds are that they will be giving him for the chemo. They asked, and they will be giving him Cisplatin and Gemcitabine. Is anyone familiar with those meds??? I think I have seen those names mentioned here.
I have a doctor’s appointment Thursday, and if the doctor says I am not contagious, I will be able to visit him, but I have had these really swollen glands and severe exhaustion for a few weeks. I think I am improving though. I just don’t want to give him something when he is on chemo, (or every for that matter!)
I think my exhaustion could be the stress. Soooo, again, does anyone know about the Cisplatin and Gemcitabine combination?? And how much discomfort does it usually give, (I realize people react differently.)
The oncologist said that it was MILD and shouldn’t cause him too much discomfort. I hope that is true. It really hurts me to hear that his stomach is bothering him so much of the time. This disease is just too dreadful, but of course you all know that.
It just seems to me that he is getting worse, and is more uncomfortable, more of the time. Hard to stay in some kind of denial.
In reply to: Gemcitabine question
Lorna….Gemzar (gemcitabine) had been a standard of treatment. The ABC-1 and ABC-2 clinical trial (UK) compared to gemcitabine alone, the chemotherapy combination of cisplatin and gemcitabine and data showed improved overall survival of patients with locally advanced or metastatic cholangiocarcinoma. This is data reflects results of patients with detectable disease however; given the fact that we don’t have any other large scale studies proven otherwise, physicians like to use this reasoning for adjuvant therapy as well. To this date we still don’t have prove whether adjuvant therapy is beneficial, but we are awaiting results of some studies within this year.
Hugs,
MarionPhase I study of adjuvant chemotherapy with gemcitabine plus cisplatin in patients with biliary tract cancer undergoing curative resection without major hepatectomy (KHBO1004)
http://link.springer.com/article/10.1007%2Fs00280-014-2431-y
In reply to: My Introduction
Here’s a timeline with a few more details of my journey thus far:
Wed 12/11/2013 Initial Visit to General Practitioner:
After several weeks of itching, fatigue, and mild abdominal discomfort I finally go to my GP where they drew blood for some testing.Thu 12/12/2013 Emergency Room Visit:
A 6:00pm call from my GP with results from the blood testing the previous day freaks me out and I go to a local ER hoping I have gallstones or Hepatitis and not this cancer thing on the Internet that I don’t even know how to pronounce.Blood test results from 12/11/2013 were Bilirubin (total) 5.3, ALT 741, AST 352, Alk Phosphatase 833
At the ER they do more blood tests as well as urine tests. They do an ultrasound and a CT with contrast. CT shows intrahepatic biliary dilation. UltraSound shows mildly dilated common bile duct, mild intrahepatic biliary dilation, and mild thickening of gallbladder wall.
I’m discharged from the ER after midnight. I’m scared and exhausted and decide to take the following day (Fri) off work to search for a specialist. I chose a local Gastroenterolgy Hepatology practice associated with the local medical college, Virginia Commonwealth University / Medical College of Virginia (VCU/MCV) and was able to get an appointment with one of the doctors for Tue of the next week. Now I’ve got all weekend to continue worrying and doing my own research. I had Hepatitis blood tests even though it was a long shot, and the results were not yet in, so I was still hoping that might be it.
Tue 12/17/2013 Specialist Visit:
This was a brief visit just resulting in more blood tests.Wed 12/18/2013 Admitted to VCU/MCV for Testing:
I’m back at work and receive a call at 9:45am from the specialist I saw yesterday. He says to me “I have your blood test results and am very concerned. I am admitting you to the hospital for more testing. Go home now and pack a bag. Expect to spend a few nights. Someone will be calling you to tell you where to go.” I am in shock and really afraid now. I call my wife at her work and give her the news, find my boss and let her know, and head out.I’m at the hospital with my wife by Noon. I’m subjected to an MRI/MRCP and told that, depending on the results, I can expect a liver biopsy and/or ERCP the following day. I have to wait on results from the MRCP until the following day.
By now I’ve let my parents (78 & 79 years old) who live in Western NY State know what’s going on and my mother hops on a plane that afternoon. She arrives in Richmond, VA that same evening for support and to help care for the kids.
Thu 12/19/2013 “C” Day:
My wife and mother are with me when the attending physician and a fellow break the news that they see blockage and strongly suspect cholangiocarcinoma.An ERCP is scheduled but at the last minute they decide not to move forward with it because the head doctor of the local VCU/MCV practice had been consulting with Dr. Greg Gores at the Mayo Clinic and they believe I may be a good candidate for Mayo’s protocol that involves chemo and radiation followed by a liver transplant. I am told that had they performed the ERCP and taken brushings locally, I would not be able to be considered for the Mayo protocol.
I’m in communication with the financial office at the Mayo Clinic at this point so that they can determine if their protocol is covered by my insurance. It was just past 5:00pm ET so I was forced to wait until the following day to hear if it was or not.
Fri 12/20/2013 VCU/MCV Discharge:
I’m still waiting to hear back from the Mayo Clinic’s financial office on the insurance coverage. I asked my attending physician what people with no insurance or people who’s insurance doesn’t cover a transplant do? He looked at me with a stone cold face and said “They die. That’s our system in the US.”. My jaw dropped open. At 47 years old and without a single health issue my entire life I never read the fine details of my health insurance. Annual maximums? Lifetime maximums? Coverage limitations? How can such things exist, I thought.Thankfully, I work for a fairly large company and have great insurance that does cover transplants and has no annual or lifetime maximums. I received word mid-day that the Mayo protocol would be covered. In fact, my insurance would even cover the related travel and lodging expenses for myself and a caregiver. Amen!
I was anxious to get out to Mayo and begin the testing/evaluation for their protocol and started working with them to that end immediately and managed to get set up for appointments starting Mon, 12/23/2013.
While waiting to be discharged, I made one-way travel plans for my wife and I to fly out to Rochester, MN on Sun, 12/22/2013.
I was discharged from the hospital and home by dinner time that evening. Our heads were spinning. So much to do to get ready to go… so many unknowns… not being home for Christmas with the kids…! My father made arrangements to drive down to VA to be with my mother and four kids for Christmas and beyond.
Mon 12/23/2013 – Fri 01/03/2014 Mayo Clinic Transplant Protocol Evaluation:
I won’t detail all of the testing and meetings here but suffice it to say that I’m no longer afraid of needles or medical tests and procedures and, other than cholangiocarcinoma, have a completely clean bill of health.
While in Rochester, MN we stayed at the Gift of Life Transplant House and I can’t say enough about how wonderful it was. We met lots of supportive people and the rooms and common areas were beautiful.
About a week into the evaluation I had an ERCP and EUS where stents were inserted and within 2-3 days, all of my symptoms were alleviated. I wanted to just pretend this was all a dream. I felt great and other than a weight loss of about 20-25 looked completely normal.
Somewhere along the line we were told that resection was an option for me. We had no idea going into this that it was an option for anyone, so we were on cloud 9 with the news.
Surgery was scheduled for Fri, 01/17/2014, so we headed back home to Richmond, VA for a week of “normalcy”. My wife and I both went back to work for the week and made plans for other family members to watch the kids while we went back to the Mayo Clinic for surgery.
Fri 01/17/2014 Surgery:
The first thing on the agenda was a laparoscopic “staging” where I’d be visually checked for metastasis and also have some lymph nodes pulled out for examination/pathology. At any sign of spreading, I’d be closed back up and no resection would be performed. I prayed to wake up with more than a small hole in my belly button, and I did. The surgery itself lasted about 6 hours.Unfortunately, the drain that was put in my right side was filling up with bile pretty quickly and it was determined that I had a significant bile leak somewhere and they needed to operate again to find and fix the leak. That was scheduled for the following morning.
Sat 01/18/2014 Surgery to Find and Fix Bile Leak:
This surgery took about 2 hours and they successfully found and tied off a leaking bile duct left over from the liver resection.Sun 01/19/2014 – Mon 01/27/2014 Mayo Clinic In-Patient Surgery Recovery:
I spent a total of ten days in the hospital, including the two days of surgery. I had a fair amount of water retention from my waist down to my feet and initial difficulty urinating on my own but eventually everything got back to normal. The room at Mayo was private and, by my limited experience, very very nice.While recovering, I was visited by a Medical Oncology Fellow and his Attending. They recommended adjuvant chemotherapy with gemcitabine/cisplatin or gemcitabine alone for four to six cycles.
Honestly, I was in no mood whatsoever to discuss chemotherapy with them while trying to recover from surgery.
01/29/2014 Mayo Clinic Post-Surgery Doctor’s Summary:
“Mr. Reidy is a pleasant 47-year-old gentleman with a recent diagnosis of de Novo perihilar cholangiocarcinoma. On January 17, he underwent a left hepatectomy, Roux-en-Y hepaticojejunostomy, and hilar and celiac lymphadenectomy and cholecystectomy. His postoperative course was complicated by a bile leak, for which he was taken back to the OR for an abdominal exploration and ligation of the posterior bile duct branch. The remainder of his hospital course was uneventful. He does have partial dehiscence of the skin suture with drainage, for which he has been applying wet dressings three times a day.”Stats:
[list=*]
[*]December 2013 CA 19-9 was 453 unit/mL[/*]
[*]January 2014 surgical pathology demonstrated moderately to poorly differentiated cholangiocarcinoma, 2.5 x 1.4 x 0.5 cm in size with involvement of the common hepatic and left hepatic bile ducts[/*]
[*]January 2014 surgical margins were negative. Multiple lymph nodes, as well as the gallbladder, were also negative for malignancy. Perineural invasion, as well as small vessel invasion was identified[/*]
[/list]Closing Thoughts & Questions:
I still have yet to decide if I am going to proceed with the adjuvant chemotherapy or not. I’m still not prepared mentally or physically for it. That and the lack of data suggesting that it’s worth the risk are big deals to me. I desperately want to live for a long time but don’t want to just trade one evil for another (kidney problems, nerve problems, hearing loss, etc) brought on by chemo drugs, particularly if there is no evidence that it’s helpful in the long run.
I’d love to hear opinions or experiences from those with similar circumstances on the subject.
I’m expecting to go back to the Mayo Clinic this summer for “surveillance” where they will do lab tests (check my CA 19-9 I assume) and perform a CT scan.
Question: Which is better for detecting recurrence, CT or MRI? I’ve had a LOT of radiation exposure in the past 10 weeks and would prefer to limit it going forward. It just can’t be good for you…
The stories on this forum both break my heart and give me hope. I really appreciate the level of caring and sharing going on here and hope to contribute myself, for a long long time.
-Matt
Matt@eReidy.com
(804) 464-7245Hello Everyone! I’m 43 years old and was diagnosed on 10/22/13 with having 5 tumors on my liver. The largest being 10.6cm X 8.5cm. After all the tests I started chemo the day before Thanksgiving. Each round consists of once a week two weeks in a row then a week off. The chemo I am on is Cisplatin and Gemcitabine. At first it was really rough. Ended in the hospital. After lowering my dosages things have gotten easier. Even gotten news earlier this month that the largest shrunk by a cm. I have the mapping prep work for the Y90 next week then the actual radiation treatment next month. I am hopeful for the best. Its a tough road but I truely believe a positive goes a long way. I’ve done research on foods to eat and there seem to be quite a few that could possibly help. They are all healthy so lets face it Kale is always going to be better then a piece of chocolate cake. lol. I’m certainly not an expert or doctor but i know i will being having chemo for quite awhile. If anyone has questions I will be happy to answer them. Ive had blood and platelette transfusions, neupogen shot etc. I’ve learned a few things from other cancer patients on some helpful hints on how to deal with certain things. I like to help where I can. I was glad to find this site and find others that are going through the same thing. This cancer isnt one of the top five cancers so its hard to find more information on it and support groups.
In reply to: Side Effects of Gem/Cis
Hi Mary,
Your experience sounds familiar although not truly alike, my mom had the same drain you were talking about inserted into her abdomen a few months ago. Initially, my mom was on gemcitabine/cisplatin and it worked wonders for her. She did no experience any swelling of the feet/ankles nor did she have fluid in her abdomen as a result of the treatment. She developed the fluid about four months after stopping gem/cis. Having said that, she was having the same problems as you regarding the swelling and after being drained by needle the doctor recommended they place the drain to provide her with additional comfort. The procedure itself was very quick, and my mom had minimal pain once it was complete. She was able to go home about an hour or so after its insertion. It was a very simple solution to the problem, was not messy and very easy to use. In Canada, we are provided with palliative nurses that come to your home and remove the excess fluid as often as you need it done. My mom was doing it once or twice a week and then later moved to every other day. It definitley helped alleviate her uncomfort but it also decreased her blood pressure in several cases (if it is drained too often etc). You have to remember to drink lots of fluid to help replenish yourself after having the fluid drained. My mom was also seeing a naturopath at that time and I know her recommendations helped a lot as well (unfortunatley my mother was at the end of her journey, I truly believe had we started earlier her fate would’ve been different). Nevertheless, I think it is a valuable tool to have to deal with this symptom, it is not permanent and can be removed should that be the case (god willing). Please feel free to contact me should you have any additional questions.
P.S – showering is a bit tricky as you are not supposed to wet the area. The palliative nurses provided my mom with a waterproof tape which they placed over the drain to protect it (so she wouldn’t get it caught on anything etc) and then I would place saran wrap over the area and tape it again when she showered and then I would take it off once she was done.
In reply to: Help
dani_ya wrote:Hello,I’ve been to this forum many times. Thanks to all for sharing their experiences. I need help for my mother.
She was diagnosed last May with extra-hepatic cholangiocarcinoma centered around the gall-bladder. The tumor is small (2 cm x 2 cm). There was no evidence of tumor spread. They didn’t perform a surgery to remove the tumor because it involved the blood vessels in that area. She started Chemotherapy (Gemcitabine and Cisplatin). She finished five and a half rounds. Then she had radiation with oral chemotherapy Xeloda. She finished six weeks of radiation in November. She hasn’t had treatments since then.
The scan they did in August during the chemotherapy showed that the tumor had shrunk, but still not removable. The scan she had in late December showed new nodules in her abdominal cavity. They repeated the scan at the end of January to monitor the new nodules. The nodules increased in number and in size.
The oncologist offered us three options. She could do nothing. She could do second chemotherapy (Xeloda + Oxaliplatin). She could do a clinical trial. He didn’t recommend doing a clinical trial because the chance of an experimental drug working is less than the standard chemotherapy.
What is the best course? I think doing standard chemotherapy or a trial. How soon should we start? Is there an on-going/upcoming trial that’s been beneficial? Is the recommended chemotherapy harsh?
Thank you very much for your help.
I don’t know how old your mom is or what her general health is and the decision on what to do is so personal. Has she expressed an opinion on what SHE wants?
From what I understand, a lot of the trials take people whose first line treatments haven’t worked.
I think treatment affects everyone differently. I also have extrahepatic CC and mine is wrapped tightly around my duct and veins and not, so far, operable. I’ve had gemcitibine (a/k/a gemzar) and cisplatin, 2 weeks on 1x a week and then 1 week off since November. It’s shrunk my tumor some, but it’s hard to measure. I’ve done it since November. I didn’t have to miss any chemo days because my counts were too low and I haven’t had horrible side effects. I’m damn lucky, but I’m also 56 and was in excellent health before this, so maybe that’s part of it. I’m moving forward with starting radiation in two weeks. I’ll continue to get chemo, although a slight variation (dropping the gemcitibine – it reacts too strongly with radiation and picking up 5FU). Our hope is it is going to kill off the tumor. Mine is slightly larger than your mom’s. If that doesn’t work, I don’t know what’s next. That’s the frustrating part.
If you start chemo and you have a bad reaction, you can always stop. My doctor hasn’t talked to me about trials yet, but I would participate in one if I thought it would help me (and others). But again, it’s really a personal decision.
Topic: Help
Hello,
I’ve been to this forum many times. Thanks to all for sharing their experiences. I need help for my mother.
She was diagnosed last May with extra-hepatic cholangiocarcinoma centered around the gall-bladder. The tumor is small (2 cm x 2 cm). There was no evidence of tumor spread. They didn’t perform a surgery to remove the tumor because it involved the blood vessels in that area. She started Chemotherapy (Gemcitabine and Cisplatin). She finished five and a half rounds. Then she had radiation with oral chemotherapy Xeloda. She finished six weeks of radiation in November. She hasn’t had treatments since then.
The scan they did in August during the chemotherapy showed that the tumor had shrunk, but still not removable. The scan she had in late December showed new nodules in her abdominal cavity. They repeated the scan at the end of January to monitor the new nodules. The nodules increased in number and in size.
The oncologist offered us three options. She could do nothing. She could do second chemotherapy (Xeloda + Oxaliplatin). She could do a clinical trial. He didn’t recommend doing a clinical trial because the chance of an experimental drug working is less than the standard chemotherapy.
What is the best course? I think doing standard chemotherapy or a trial. How soon should we start? Is there an on-going/upcoming trial that’s been beneficial? Is the recommended chemotherapy harsh?
Thank you very much for your help.
My husband was diagnosed end of December with cholangiocarcinoma, intrahepatic, stage IVB. It took them 2 months to figure it out. They give him the standard median of 12 mos and palliative chemo of Cisplatin and Gemcitabine. We are on day 17 of cycle 1. We have one more cycle before another CT scan. He throws up bile after huge coughing fits. The mets are in his lymph nodes, lungs, and pelvis bone (which was fractured from the tumor). Believe it or not, no side effects from the chemo. Anyhow…
So I’m looking for second opinions and what to expect kind of stuff. I am a pragmatic person. I need the cold facts. My husband is positive and hoping for the miracle. Which I am too, however, I am a stay at home mom with 2 kids under 4. So, I have to plan every which way. Everyone we know is praying for him and our family. We are being blessed in so many ways, I can’t begin to list them. SO I don’t want you to think I am ungrateful for not having a miracle as of yet. We have had many. Just not the one that everyone is hoping for. But the immediate needs are being met so we can’t complain.
My biggest concern is watching my husband suffer through this. He is a soft, gentle man, who doesn’t like pain and discomfort, who doesn’t right? But he still cries over pulling of band-aids. I almost can’t handle it. My second biggest concern is that I am not going to be patient enough for him. I have taught my kids to brush things off and keep going, as long as things are still attached to their bodies. I am a type 1 diabetic and so i have no sympathy for needles.
I am a survivor of a father who had myelodysplasia, brother who had renal cell carcinoma, aunt who had lung cancer (none smoking), uncle who has glioblastoma, father-in-law who has squamous cell carcinoma of the mouth, cousin who had colon cancer, another cousin who has leukemia and he had a daughter just pass with leukemia last year. My reason for listing this is to show that I am not unaware of the prognosis’ and how things work in oncology. I do take the doctors to heart and listen to their expertise, however, I just want to make sure that there isn’t anything else we can do to prolong – in comfort and humane way – his life. I know liver diseases are awful awful awful.
I love my husband dearly! We have only been married for 7 years. We aren’t the death fearing type, we believe in forever families.
If there is anything I am missing or might need to know, please let me know!
Thanks,
KathyCisplatin and gemcitabine for advanced biliary tract cancer: a meta-analysis of two randomised trials
http://annonc.oxfordjournals.org/content/early/2013/12/17/annonc.mdt540.abstract
Hello all,
My mother was diagnosed with bile duct cancer last week. MRI scans have shown that there is also “a spot” (the oncologist’s words, not mine) in one of her lymph nodes, and another on her liver.
Following an MDT meeting, my mother was called in and was told that the only option was chemotherapy. After three months, they would re-assess and reconsider surgery if appropriate.
In the days following the MDT meeting, and before admission into the oncology ward, she was suffering from severe pain in her gut, and some nausea. Once admitted last Thursday and given medication, these conditions eased significantly. However, she did not have any bowel movements at all up until this morning, despite her eating regularly and been given medication to make her go.
Another MRI was taken over the weekend. The next day, a junior doctor visited my mother to say that based on the scan, “surgery is definitely not an option”. He did not elaborate.
Chemotherapy began yesterday, with a combination of Gemcitabine and Cisplatin. Initially, (at last week’s meeting), she was told that the schedule would be two weeks on, one week off, repeated. The indications now are that the schedule will be two weeks on, two weeks off.
Based on the above set of events, what conclusions, if any, should I draw from these aspects?
[list=*]
[*]The oncologist’s assertion that surgery was not possible[/*]
[/list]
[list=*]
[*]A repeat of this assertion following the second MRI, without any elaboration[/*]
[/list]
[list=*]
[*]The fact that the schedule has changed from 2/1 to 2/2[/*]
[/list]
[list=*]
[*]The choice of drugs[/*]
[/list]My mother does not have the assertiveness to ask these questions of the medical team, and I appreciate that, for her sanity right now, this may be a blessing. And I am walking a fine line between concern and interference. I have an investigative and inquiring mind though, and it is in overdrive right now. As such, all useful input in this forum will be very useful.
Many thanks,
Evan
Topic: New member of the club
(Note: I’m re-writing this after I’ve written most of the following. Just writing this down and reading more of your stories has made me see I’ve got it pretty good. My numbers are continuing to show improvement. CC 19-9 never made it over 1000. I feel good. I’ve got loads of support and love. Maybe I just have to realize that I need to live in the here and now and let the future happen – it’s not cast in stone. I’m an engineer – my job is to solve problems – maybe I need to define what an acceptable solution to my problem is. I’ve read numerous places that cancer is a sickness, not a sentence. “Cancer will not run my life! Cancer will not define me!” Judy Nemes in “Coping with Cancer” September 2013. Easy to say, hard to put into practice. http://copingmag.com/cwc/index.php/rss_article/living_with_colon_cancer)
I found this site by accident. As I read your stories, I found some of my story, but not all of it. I am a very private person but I feel I have to participate. Selfishly for my benefit, but hopefully someone will gain something. I’m taking advantage of the fact that it will take several days to complete my login, so I can edit this (and I have). I started this a month ago – it’s time to post or get off the pot.
My current story began July 3, 2013 (the back story will have to wait). I had been working 8-12 hours a day 5-7 days a week for 10 weeks and had lost 23 pounds with no end in sight. I’m 5′ 10” so 150 pounds was a little light. Primary Care Physician ran some blood tests and scheduled me for a CT scan July 5 with a colonoscopy the following week (my first, even though I am 62). First visit to Oncologist was July 10 (Seidman Cancer Center joint venture between University Hospitals in Cleveland, Ohio and University Hospitals in Lake County). She said it was inoperable, radiation would not work, and if I didn’t start chemo soon, I would be dead in six months. Tri-fecta. CA 19-9 was 636. Alkaline phosphatase was 761. MRCP on July 22. Identified cancer in lymph nodes, lungs, and liver. Liver tumor was 19 cm. Biopsies confirmed cancer in the lymph nodes and liver. I understand that late diagnosis at stage 4 is common.
Started with cisplatin and gemzar (gemcitabine hcl) July 24 but changed to carboplatin and gemzar. Had another CT scan September 20. Liver tumor had shrunk to 17 cm. Yesterday’s CA 19-9 was 61 and alk-phos was 157. Completed my sixth round November 13. Had to take last week off, platelets were 77,000. Back up to 199,000 yesterday. Will have next CT scan in mid-December (after round 7).
Weight is back to 160-165 pounds (lowest was 140 pounds). Very little neuropathy. No nausea. Platelets are low, 90,000-130,000. Had a wellness screening at work. All numbers were textbook. If it weren’t for CC, I’d be the healthiest I’ve been for years.
The liver biopsy said the main cancer type was pancreaticobiliary (90%) with CC as the subtype (88%). I don’t have a good handle on what the differences are between main and subtype, and pancreaticobiliary and CC. Can someone help with that?
Oncologist is talking about possibly stopping chemo after the December CT but was a little light on the rationale. Is this normal? I’ve read a bit on reasons for stopping chemo, definitely not reassuring for the long run. Sounds like I might be reaching the point of diminishing returns. Has anyone stopped chemo then restarted?
Right now my biggest concern is my emotional stability. The first two weeks were tough, telling my sisters and three adult children. My wife was there when I learned. About once a month a have a pity party for myself, no guests allowed. My wife is wonderfully supportive as are my family and friends. I’m on several prayer chains and keep them updated. But the questions ares why? me? now? I’m ready for retirement and we have plans to keep busy, including travel. No grand children on the horizon. What could God want from me in heaven? I’m ready for 25 years of heaven on earth with my family. Statistics say I might get two, five if I’m fortunate. I’ve supplied enough whine, others need to bring the cheese. Someone from work said it may not be about me. Maybe I will have an influence on someone else, maybe not even someone I will ever know. My thoughts and prayers go out to those with CC. My condolences to those of you who have supported CC patients who have died. You may think I’m a baby, but I’m scared. Anyone have experience with hospice care? My next visit with oncologist will be Christmas Eve. Will be the best or the worst ever.
Next thing I have to deal with is genetics. Both of my parents drank and smoked, had cancer, died from heart issues. So it might be in both X and Y chromosomes. What time bombs have I planted in my kids? But David Servan-Schreiber (Anti cancer A New Way of Life) pointed out evidence that genetics may not be a main player.
Too many questions, not enough answers.
In reply to: Finally delurking – husband has nonresectable CC
Hi Mary,
My understanding is that Gemcitabine + Cisplatin is the standard first line treatment. I would ask your oncologist the rationale for going 5fu + radiation instead of gem/cis.
There could be a very good reason, but I would want to be sure I understood the logic.
Best of luck,
Jason
In reply to: chemo question
We went through 8 rounds of gem/Cis. We saw good results. Even with the good outcome, our oncologist suggested taking a break from the combination and move to just gemcitabine as a maintenance plan. Her primary reasons, which were confirmed by our second opinion doctors both at Sloan and fox chase, were 1) the long term effects that cisplatin can have on the body, especially the kidneys. And 2) to give the body some time to recover from the effects of the combined drugs. We just finished the first round (3 infusions) of gem only. So far it is much easier on the body.
Carl
