Topic: Newly diagnosed with bile duct cancer - some input will be useful

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?

  • The oncologist's assertion that surgery was not possible

  • A repeat of this assertion following the second MRI, without any elaboration

  • The fact that the schedule has changed from 2/1 to 2/2

  • The choice of drugs

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

Re: Newly diagnosed with bile duct cancer - some input will be useful

Dear Evan, welcome to the best little family in the world but sorry you had to find us. It seems the GEM/CIS  is the cocktail of choice to start with. I have not dealt myself with chemo but I have seen on here that often after chemo surgery may become available. I would make a list of questions and ask for a meeting with your Mother's Doctor and ask away. I know others will be along soon to answer more of your questions here. Wishing your Mother the very best and please keep us posted on her progress.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Newly diagnosed with bile duct cancer - some input will be useful

Hi Evan -
Welcome to the family or the roller coaster ride because it certainly can be first.  My husband was diagnosed in May and thankfully was able to have surgery. He now has 3 doses ( round and a half) of chemo with Gemcitabine and Oxaliplatin and doing well.
As far as being told no surgery my suggestion would be a second or third or even fourth opinion. The surgeon may not be familiar enough to do the very complicated surgery that this involved. I would make sure that all that are involved are familiar with it.
I would also point blank ask the doctor why they chose that cycle for chemo. I know my husband goes every other week for his and I asked the doc and he said that it was a good cycle to keep people from missing or delaying a dose. It gives the blood counts a better chance to recover. And so far we only had to put off the very first dose due to being in the hospital.
Also don't discount surgery completely at this time. There are plenty of people on here that were initially told no but eventually were able to have it.

Take care,
KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Newly diagnosed with bile duct cancer - some input will be useful

My dad is doing 2/1 regimen with Gem/Cis.  He is not able to have surgery.

My advice is to write a list of questions you have and give it to the doctor for him to WRITE the answers along with telling you.  That way you can re-read them. 

Remember...the doctor is working for you.  You can ask him questions whenever you have them and if you have a problem or don't understand ask again.

Re: Newly diagnosed with bile duct cancer - some input will be useful

Hi Evan,
I'm sorry you had to join this family, but you have come to a place filled with wonderful, caring people.
Firstly, you should definitely get a 2nd and possibly 3rd opinion, especially with someone knowledgeable in cc. There are many good oncs, and many of them will have different opinions on treatment.
As far as changing her schedule, it may have to do with her health. Maybe the onc is being a little careful. Chemo kills not only the bad cells, but the good ones, too. It can decimate the blood and platelet counts. Maybe your mothers counts are already low? These are all questions for the onc.
Also, with surgical options... Cc is often found too late for surgery. Many times after treatment, a patient is then deemed resectable. So don't get too discouraged there.
Ask any questions you need to ask. Your onc should be working for and with you, after all.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Newly diagnosed with bile duct cancer - some input will be useful

Evan,

I don't understand the 2 week off routine. Our cycle (we did 8 of them) was 2 weeks of gem/cis and 1 week off. I understand that regimen to be the "standard" protocol for treatment. I would encourage you to ask those questions of the oncologist. There are many people connected to this foundation who have gone through the 3 week cycle.

If they provide a specific reason why your case is different, ask them to explain why - write everything down - and come back to the moderators of this board with those reasons. They have lived through so many situations that they will most likely be able to quickly provide feedback for you - either way.

If they say it takes two weeks to recover the white/red blood cells, platelets, etc. that is not true. They can give a shot of Neulasta after the 2nd round of chemo (in a cycle) and it will help rebuild the immune system.

Constipation may be an issue. It was with us. Between chemo, pain meds, and nausea meds, they all work against the normal system. So try to stay ahead with whatever medications you need. Ask the oncologist about this. During these cycles, our daily constipation meds were 6 Senecot-S tablets, 1 or 2 doses of Mirilax, and Milk of Magnesia when all else fails.

Exercise. We found exercise (walking mostly) really helped right after chemo. It seemed to help Lynn feel stronger after the chemo.

And above all else, do not hesitate to ask any and all questions of these terrific moderators. They will guide you to the best of their ability.

Carl

7 (edited by Pyderman Tue, 27 May 2014 09:51:40)

Re: Newly diagnosed with bile duct cancer - some input will be useful

Thanks to all who have replied.

The chemo schedule has now been confirmed as followed:

Day 1
Day 8
Day 29
Day 36
Day 57

And so on.

When I first looked at this, I saw the gap between Day 8 and Day 29 - three weeks - and was concerned. The oncology nursing team assures me that this constitutes a 2 weeks on / 2 weeks off schedule, since the second dose, given on day 8, will last for a week. Are they right in saying this?

Re: Newly diagnosed with bile duct cancer - some input will be useful

My schedule was different. I was on Gem/Ox and it was every other Monday. The FUDR thru the pump was administered 1st Monday, replaced the next chemo day with saline, then readministered the next chemo day, etc. it was a two week cycle the whole time. 1 on, 1 off.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

9 (edited by PCL1029 Fri, 20 Dec 2013 16:59:52)

Re: Newly diagnosed with bile duct cancer - some input will be useful

Hi, Evan,

I do not think you should read beyond  what it has presented.

1. The choice of GEM/CIS  is the level 1 , first line ,the  standard regimen for CCA.
The link below May be of help to understand the current thinking about chemotherapy for this disease; just read the summary will let you have some idea if you want to.

http://www.cholangiocarcinoma.org/punbb … 198#p57198

2. If you mom went thru the " multidisciplinary  team  evaluation" of her  disease ,then  if you still have question about the surgery options, get a 2nd opinion from a liver surgeon to see what s/he can do.  I don't know any liver specialist from Ireland ,hope you can google it and find a good one who is familiar with CCA..

3. The two MRI were just one week apart, so  I will not pay much attention about this since relatively speaking, CCA is a slow growing tumor, therefore the two MRI results within  a week  apart will be more or less identical without any  significant changes.
4.  2week on and one week off are most frequently  used interval for GEM/CIS.
To allow the body to recover from the toxicity of the chemotherapy and the bone marrow of the patient to have enough time to replenish  the  loss of the blood cells. Each time before each cycle starts, the nurse should draw lab ( CBC,BMP) before the  chemotherapy treatment begins to let the oncologist to decide the treatment should  be proceeded or not. Pre-determined and fixed  "2weeks on and 2 weeks off "  schedules  is uncommon unless your mom has other co-existed health conditions  or the oncologist is treating your mom as part of a clinical trial to find out which interval 2/1or2/2 is better., or your country's treatment protocol dictated as such.  I do not have a real answer for this question.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Newly diagnosed with bile duct cancer - some input will be useful

Sorry to hear your Morher has CC. Its true that if the tumors have spread outside liver or are too close to major blood vessels in liver , resection surgery is not usually an option. On the other hand, there are many who have been fortunate enough to become resectable after good response to chemo and/or other treatments like various forms of radiation.
As for the Gem-Cis chemo cycle: while many have 2 weeks on then one week break, I think your moms Dr may rec a 2 week break be to help platelets and other blood cells recover. To clarify the "immune boosting shots" mentioned above... Even WITH the Neulasta (or Nupogen) shots, my sister still got turned away many times from scheduled chemo for low platelet counts. It is my understanding that the Neulasta and Nupogen shots are for boosting WHITE blood cells, not red blood cells nor platelets. White cells do help you fight infection. Platelets help blood to clot and the only tx for low platelets is to delay chemo for a bit till platelet counts go up Or sometimes get a blood transfusion if they're critically low. Now that my sister is on Taxol, she gives herself the shots for 3 days in a row following chemo infusion.
Sincerely,  Willow
Willow

Willow