cholangiocarcinoma/Bile duct cancer Chemo options

Lee9409
Lee9409 Member Posts: 4
in Rare and Other Cancers #1

Hello.

My name is Danbee and my Dad was diagnosed with Stage III cholangiocarcinoma July 2017.

They told him the tumor is too "long" to be completely removed so doctors planned to go through 3 months of chemo to hopefully "shrink" the tumor and go through 5 cycles of radiation/chemo together and then surgically remove it.

My dad has received 4 cycles of chemo (12 weeks) and his first treatment of 5th cycle. The chemo used are Cisplatin/Gemcitabine(Gemzar). CT scan showed NO growth, no spread but the tumor did NOT shirk...  My dad had been sent to ER 4 times due to infection, low blood count, low WBC account which was resolved 1-3 days on inpatient care. He had received his second ERCP to place temp stent in bile duct which he is told that he needs replacement every 3 month. My dad is diabetic and takes insulin regularly. 

Surgical doctor told us there they cannot do surgery. Also, radiation/chemo that was planned is not an option at this time (I don't know why).

When I talked to Chemo doctor, he said next options are to try another chemo OR palliative care and stop all treatment. Doctor also said something my dad can do that other patients did is to stop treatment and wait for cancer to spread before seeking treatment again which I thought was stupid because why would my dad wait for cancer to get worse when it is somewhat controlled at the moment??  So, I was bit upset, and didn't know what to do. My dad asking me to make all medical decision and it is very frustrating. The chemo doctor recommended for next 4 cycles (8 weeks) is Folfiri (combo of leucovorin, 5-fu, and irinotecan). 

I don't know if folfiri is the "standard next best treatment" option after the Cisplatin/Gemcitabine... I understand the leucovorin (helps anemia), 5-fu (for bile duct cancer) but I do not understand the irinotecan portion of the chemo and what good it will do to my dad's bile duct cancer. 

I am considering possible second opinion regarding next course of treatments but do not want my dad's treatment to be delayed. 

Can someone please share their experience with me regarding chemo treatments they received??

Thank you very much for your time. 

 

 

 

Comments

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #2
    Hello,
    Irinotecan is a Topoisomerase I inhibitor, and with 5FU, it blocks DNA replication, a process the cancer cells are dependent on for their high cell division rates.
    My wife was origically diagnosed with intrahepatic cholangeocarcinoma (later classified as with "unknown primary") at stage 4 (metastasis to lungs, adrenal and lymphs), and was treated with FOLFOX as first-line of therapy. Her disease continued to progress after three treatment cycles, her bilirubin levels skyrocketed even after a stent placement, and our oncologist told us she had a few weeks. In the mean time, since we knew her liver biopsy had BRAF mutation, I insisted on BRAF+MEK inhibitors combo, even it is considered off-label. Luckily, her disease has been continuing to respond to this over almost a year by now.
    Apart from BRAF, other mutations such as VEGF, EGRR, Her-2, MET, and ROS1 are known in certain cholangiocarcinoma, and there are at least one off-label FDA approved drug is available for each type. So, it is worth getting a genetic profiling for targetable mutations done from biopsy samples. You may find some additional information in publications like this:
    http://pubmedcentralcanada.ca/pmcc/articles/PMC5411274/
    Best wishes.
  • Lee9409
    Lee9409 Member Posts: 4
    #3
    MyJourneywithCancer said:

    Hello,
    Irinotecan is a Topoisomerase I inhibitor, and with 5FU, it blocks DNA replication, a process the cancer cells are dependent on for their high cell division rates.
    My wife was origically diagnosed with intrahepatic cholangeocarcinoma (later classified as with "unknown primary") at stage 4 (metastasis to lungs, adrenal and lymphs), and was treated with FOLFOX as first-line of therapy. Her disease continued to progress after three treatment cycles, her bilirubin levels skyrocketed even after a stent placement, and our oncologist told us she had a few weeks. In the mean time, since we knew her liver biopsy had BRAF mutation, I insisted on BRAF+MEK inhibitors combo, even it is considered off-label. Luckily, her disease has been continuing to respond to this over almost a year by now.
    Apart from BRAF, other mutations such as VEGF, EGRR, Her-2, MET, and ROS1 are known in certain cholangiocarcinoma, and there are at least one off-label FDA approved drug is available for each type. So, it is worth getting a genetic profiling for targetable mutations done from biopsy samples. You may find some additional information in publications like this:
    http://pubmedcentralcanada.ca/pmcc/articles/PMC5411274/
    Best wishes.

    Thank you very much for

    Thank you very much for sharing your knowledge, experience, and decisions. The process and decisions were difficult to make but I am slowly learning more about the cancer and the types to make better decision for my dad. It’s wonderful to hear that the treatments are responding for your wife. I hope the best for you and your love and will pray for your both.

    I have discussed with the doctor... they said since tumor did not grow or spread, they will continue with cisplatin/gemcitabine for total of 8 cycle. Since my dad received 5 cycles already, he will receive 3 more cycle (9 weeks) and take CT scan. After that, they will just go ahead with the radiation/chemo combo.

    If the results are still not best after 8 cycles of chemo and 5 cycles of radiation/chemo, they decided to do the genetic profiling to give clinical trial a try. I truly hope that chemo and chemo/radiation will help reduce the tumor enough to be possibly removed with surgery.

    Thank you very much for your time.

     

     

     

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #4
    Thank you
    Thank you very much for updating and for your kind words.
    I think your doctor is taking a logical approach by continuing with chemo right now and planning with radiation/chemo or targeted therapy later. Given there is no major metastasis (any lymph node association?), I am very hopeful for a major treatment response for your dad.
    As for the clinical trials, I would like to add that study criteria are sometimes very stringent in terms of livers function parameters, and thus, especially in cholangiocarcinoma cases, these numbers could throw one out of the eligibility limits, and that could happen too fast. So being proactive and vigilant is important.
    Thirdly, immunotherapy with cell cycle checkpoint blockade can also be an option, especially if genomic profile shows high tumor mutation burden or mismatch repair deficiency. Some recent studies are here: https://cholangiocarcinoma.org/professionals/research/clinical-trials/immunotherapy/.
    Best regards,
  • Kab1947313
    Kab1947313 Member Posts: 1
    edited December 2017 #5
    I am a 70 year old female,

    I am a 70 year old female, diagnosed with cholangiocarcinoma in June 2017.  I started being treated at the University of Iowa Hospital and Clinicsin Iowa City, IA. I had a stent put in and Had a MRCP. The stent clogged every 21 days and after having sepsis each time I had the stent replaced 4 times in 3 months.  In Oct 2017 I was transferred to Mayo Clinic in Phoenix, AZ. after my initial diagnosis in June my RN daughter bullied me into having high dose vitamin C infusions 3 times a week.  My oncologist in IC was ok with it, even though he could not prescribe it because of vitamin c trials for other cancers being done at UIHC at the time. So I found an infusion center in Dubuque, IA that would do the infusion along with my on-again, off-again chemo.  The cisplatin/gemzar combo was too caustic to my hearing and kidney so they took that combo away and did oxcilioplatin/gemzar which had bad side effects. I believe i had within a 3month period 7 Chemo with gemzar and 3 with cisplatin and 2 with oxcilioplatin. I continued to have the vitamin C infusions at least twice a week while doing chemo at the same time.  I was getting 20grams of vitamin c each time.  

    When I had my repeat ct scan at Mayo on Oct 23rd my tumor shrunk by 30%. I was totally flabbergasted but so pleased and happy  I am convinced that the. Vitamin c is what helpers shrink my tomorrow.  BTW I was borderline resectable when I got diagnosed.  My surgeon at Mayo is not convinced that the vitamin. C had any bearing on my progress but I know it did as the chemo was so sporadic. 

    I am now scheduled for surgery to remove the tumor on January 17th and they are very optimistic about the outcome. No Whipple will be done.  I had a spiral cylinder placed in the blood vessel leading to my liver in order to stop the blood flow to the right side of my liver in order to make the left side grow another 10% or so.  They are doing that so when thedo my surgeryand remove part of my liver, I will have at least 30% left which is what I will need to survive the rest of my life.  I will probably never be like I was a year ago but I will be alive, fairly active and cancer free. I had the ct scan yesterday and my liver has grown enough on the left to do the surgery  

    I hope this information gives you some hope for your father.  If you can’t find someone to do the high dose vitamin c then order lipisomal vitamin c made by Aurora from Amazon and have him start to drink this twice a day, increasing as tolerated. It is the next choice after the IV infusions. Good luck and may God be with you.

  • Lee9409
    Lee9409 Member Posts: 4
    #6
    MyJourneywithCancer said:

    Thank you
    Thank you very much for updating and for your kind words.
    I think your doctor is taking a logical approach by continuing with chemo right now and planning with radiation/chemo or targeted therapy later. Given there is no major metastasis (any lymph node association?), I am very hopeful for a major treatment response for your dad.
    As for the clinical trials, I would like to add that study criteria are sometimes very stringent in terms of livers function parameters, and thus, especially in cholangiocarcinoma cases, these numbers could throw one out of the eligibility limits, and that could happen too fast. So being proactive and vigilant is important.
    Thirdly, immunotherapy with cell cycle checkpoint blockade can also be an option, especially if genomic profile shows high tumor mutation burden or mismatch repair deficiency. Some recent studies are here: https://cholangiocarcinoma.org/professionals/research/clinical-trials/immunotherapy/.
    Best regards,

    Thank you very much for your

    Thank you very much for your reply and your knowledge again. My dad is doing fairly well, he is eating well, no major side effects from the chemo which I am so grateful.

    According to the doctor, thankfully it has not metastasis anywhere and hopefully it will stay that way.

    But I am actually looking at second opinion prior to starting radiation at this point due to recent event.

    When I talked to the oncologist after last CT scan in November 20 2017. He told me the reason surgery is not possible is because although tumor did not "get bigger" it did not shrink either to do the surgery. 

    But I talked to the nurse manager of the oncologist recently who read the oncologist's notes for me which said tumor has "EXTENDED" into the duodenum.

    I am so confused rather this doctor made mistake or not but I am unable to trust this doctor no longer.

    I am meeting with the same oncologist on Jan 30 (which they said is the soonest that he is available) to listen to his explanation regarding this issue one more time.

    If my dad is not happy, we are looking into second opinion at Florida Hospital in Tampa which AMC told me is one of the leading dile duct cancer treatment center.

    Again, Thank you very much for your time. I pray for the best for you and your family. 

     

     

  • Lee9409
    Lee9409 Member Posts: 4
    #7
    Kab1947313 said:

    I am a 70 year old female,

    I am a 70 year old female, diagnosed with cholangiocarcinoma in June 2017.  I started being treated at the University of Iowa Hospital and Clinicsin Iowa City, IA. I had a stent put in and Had a MRCP. The stent clogged every 21 days and after having sepsis each time I had the stent replaced 4 times in 3 months.  In Oct 2017 I was transferred to Mayo Clinic in Phoenix, AZ. after my initial diagnosis in June my RN daughter bullied me into having high dose vitamin C infusions 3 times a week.  My oncologist in IC was ok with it, even though he could not prescribe it because of vitamin c trials for other cancers being done at UIHC at the time. So I found an infusion center in Dubuque, IA that would do the infusion along with my on-again, off-again chemo.  The cisplatin/gemzar combo was too caustic to my hearing and kidney so they took that combo away and did oxcilioplatin/gemzar which had bad side effects. I believe i had within a 3month period 7 Chemo with gemzar and 3 with cisplatin and 2 with oxcilioplatin. I continued to have the vitamin C infusions at least twice a week while doing chemo at the same time.  I was getting 20grams of vitamin c each time.  

    When I had my repeat ct scan at Mayo on Oct 23rd my tumor shrunk by 30%. I was totally flabbergasted but so pleased and happy  I am convinced that the. Vitamin c is what helpers shrink my tomorrow.  BTW I was borderline resectable when I got diagnosed.  My surgeon at Mayo is not convinced that the vitamin. C had any bearing on my progress but I know it did as the chemo was so sporadic. 

    I am now scheduled for surgery to remove the tumor on January 17th and they are very optimistic about the outcome. No Whipple will be done.  I had a spiral cylinder placed in the blood vessel leading to my liver in order to stop the blood flow to the right side of my liver in order to make the left side grow another 10% or so.  They are doing that so when thedo my surgeryand remove part of my liver, I will have at least 30% left which is what I will need to survive the rest of my life.  I will probably never be like I was a year ago but I will be alive, fairly active and cancer free. I had the ct scan yesterday and my liver has grown enough on the left to do the surgery  

    I hope this information gives you some hope for your father.  If you can’t find someone to do the high dose vitamin c then order lipisomal vitamin c made by Aurora from Amazon and have him start to drink this twice a day, increasing as tolerated. It is the next choice after the IV infusions. Good luck and may God be with you.

    Hello Ms. Kab

    Hello Ms. Kab

    Thank you for sharing your experience with me. I didn’t hear about the high vitamin C infusion which I will definably ask the oncologist. Thank you so much for the information. Like you said, if insurance won’t cover it, I will ask the doctor if we can just do that over the counter Liposomal Vitamin C or pay out of packet if needed. I want my dad to try all the treatment he can as long as he himself wishes to.

     

    It’s wonderful to hear that your treatments plans are going well. I pray for your success in surgery and being cancer free !!

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