May 16, 2013 at 1:10 pm #50298RandiParticipant
I can only speak from my own experience. I agree that to do chemo or not is a very frequent question on this site. In fact, I think it was the first question I asked when I got on this site when I was first diagnosed.
I had Whipple surgery since my CC was outside the liver in the bile duct near my pancreas. They got all of the cancer and the pathology showed that I had no lymph node involvement. My Oncologist said that if there had been lymph node involvement he would strongly suggest chemo, but because there was none, he left the decision up to me (but he leaned toward doing it). Like others, I was not very keen about doing chemo, but the doctor said that the type I would get (Gemzar) is “well tolerated”. He also made the point that if I didn’t do it and this aggressive cancer returned, I may have regrets.
I opted to do chemo for 6 months and while it was no picnic, I was able to get through it and have not regretted doing it.
To chemo or not is such a personal decision and as Lainy said there are a lot of things to take into consideration (age, stage, health). No one can tell you whether it will help or not, so it’s mostly a crap shoot.
I wish you and your mother the best and let us know how things are going.
-Randi-May 16, 2013 at 3:39 am #50299kaklonMember
A tremendous “thank you” to you for outlining your CC case so well and including nutrition, alternative medicine & maintenance chemo dose. Also for your outlook as to CC being a chronic disease and learning how to live more fully on a daily basis. I have been living from scan to scan with anxiety and then relief when it looks good, or stable.
Blessings & peace to you,
kaklonMay 15, 2013 at 1:04 pm #50301gavinModerator
Thanks for that Percy.May 15, 2013 at 3:16 am #50300pcl1029Member
In case your are interested, I have just updated my journey of CCA from diagnosis to as current as of March,2013 due to request by member on this message board.
Please also check the link below for the discussion of a related CCA topic.
God bless.May 12, 2011 at 7:21 pm #50296pcl1029Member
Let me share my story and hopefully of benefit as an ongoing a case study.At age of 57, I had acid reflux off an on for a couple years taking Pepcid ,the H2 blocker to relief sx. Lost weight for about 5 lbs over several months during 2009. ,drink 3-5 cups of coffee daily. Taught part time twice weekly in college in addition to regular day job since 2008.(may be the added stress decreased my immunity and CCA started to grow. I am also a chronic hepatitis B carrier since birth.)
May2009 diagnosis=intrahepaticCC stage IIB new classification=stage 3
June 2009 left lobe resection,with clear margin 1.5cm. do RFA on 2 spots remaining on the right lobe .no metastases to other parts of the body.
August 2009 start Gemcitabine 3weeks on and one week off,then drop to 2weeks on and one weeks off. for 14 months ;PET/CT scan(that is PET+CT (WITHOUT contrast) every 3-4months till
October,2010 with no recurrence.;Oncologist give me three options for the next step of treatment
1.no more chemo
3. start prophylactic dose of Xeloda(capecitabine) twice daily.1000mg twice daily after meals with a full glass of water;14days on and 7 days off =1cycle.(result not proven,more or less is his clinical judgement and experience)
Since there is no way I could know whether the gemcitabine is really working if I continue to take it forever.and I think I can try prophylactic dose of Xeloda later.
I choose no chemo but switch to CT scan WITH contrast to monitor the CC.
Sometimes PET/CT will not show any activity of the CC if you are still under chemo treatment because the chemo slow the growth of the CC but not completely kill it.
April,2011,CT scan WITH contrast reviewed a new growth(different site) of 1.5cm;MRI a week later discovered another new growth of about 2cm.(MRI is better in finding liver lesions <2cm in size)
May,2011 my liver surgeon indicated that the lesions are small enough that chemoembolization and RFA will take care of the problem;no need to have re-resection (a major surgery compare to chemoembolization with RFA) Chemoembo is using the chemo to surround the tumor and starve off the blood supply to the tumor;RFA is applying radiation to the middle of the tumor and kill it.
5/10/2011,I had the chemoembolization done with mitomycin and Adriamycin .the procedure took about one hour total for the 2 lesions and was well tolerated.I spent 1 day in the hospital just for observation. I was given prescription for Levaquin 500mg orally daily for 5 days for preventing infection from the procedure.
5/23/2011 ,I had the RFA(radiation frequency ablation) done on the 1.5cm spot in the liver total time in OR and PAR was about two hours,the actual procedure time of the RFA was only 45min.(4cm in dia. of burning to obtain a larger negative margin) ; they could not do the same on the other spot;it is too close to the diaphragm and abut to the hepatic vein and I need to go back to have an resection to take it out .
Again the RFA procedure was well tolerated and I spent one day in the hospital for observation. Levaquin RX for 5 days again was given to prevent infection . No chemo is needed at this time. the chemoembo will take care the CC until they will perform the resection.CEA value by half to 0.8 and CA19-9 dropped by 10 points to 16 for just that one tumor by RFA.
October 24 2011,resection was performed on the 2.3x3cm tumor ;completely resected.I also used the tumor tissue to order “Target Now” biomarkers report from Caris Lab for chemo sensitivity reference to be used in the future.This time the CEA went up by 0.4 to 1.2 but the CA19-9 dropped from 26.4 to 21.4 one month post-op.
“As of Feb.2012, the ASCO still indicated that the “Target Now” chemo sensitivity report and other bio marker lab test of chemo resistance or for diagnosis or prognosis purpose beyond clinical trial settings are of no PRACTICAL value in the overall cancer treatment plans.( I am KRAS wide type , EGFR positive ,tumor is moderate differentiated.)”
November 24,2011 per oncologist to start Xeloda 1500mg twice daily.a month later,2-3 diarrhea/day and redness of the palms and minor skin peeling and cracks prompted him to decrease dose to 1000mg twice daily.PET scan to follow in a couple month.
On December 29 2011, I went to Mayo for a 2nd opinion on oncology medical and hepatology consult. Standard chemotherapy without targeted therapy was given as treatment if current one won’t work later; at this point, the medical oncologist agree with the Xyloda BID regimen,but only for six month. Hepatologist consult went really good,MRI and MRCP was performed on site and biloma ( 9cmx5cm) was discovered but appeared as long as there is no infection , pain , fever or chills developed,it will be fine. The biolma will self absorbed and can be disappeared over time.. And I don’t have any symptom .Nexavar was mentioned as a potential targeted therapy that I may consider if needed in the future.
10/9/2012, follow up PET is clear. Medical oncologist follow up recommended to continue Xeloda maintenance therapy for 2 more years.
2/22/2013 labs normal, bilirubin=0.7 MCV=107, RBC=3.78 WBC =7 , I believe the above higher MCV and bilirubin is related to the side effects of Xeloda; I will take B12 ,ferrous sulfate 325mg and one multivitamin daily to resolve my anemia . Liver enzymes AST,ALT are normal but the ALK phosphate=34 is a bit lower than normal .I think that is because I took vitamin D3 2000 unit a day also and I may need to cut it down a bit. My CEA=1.8 and CA19-9=21.
Currently(2/22/2013), I take 1000mg Xeloda twice daily , 2 weeks on and one week off till otherwise; I also take Oncozac ( yunji extract,雲芝)3 capsules twice daily as an immunostimulant ; Coumadin as blood thinner for DVT; Celebrex 200mg twice daily as antiinflammatory agent that may help to fight cancer,Entecavir 0.5mg daily for Chronic Hepatitis B and Tricor 145mg daily for marginal high level of triglyceride; multivitamin once a day with B 6 , B12 ferrous sulfate; potassium tablet and neutrophos packet for low potassium and phosphous level as needed.finally, I am trying ,on an off and on,as needed basis the “shi quan da bu tan” 十全大補湯-in Chinese herbal practice or called (juzen-daiho-to)in Japan Kampo herbal list I try this complimentary herbal medicine on off days of Chemotherapy it helps me when I am feeling lightheaded and tired due to anemia and fatigue.
3/4/2013 CT scan shows the biloma decreases its size from 9.4×3.7 to 6.8×2.5 & the femoral vein thrombosis resolved and no new lesion is found.
So far thru my research,there are no effective chemotherapy for recurrence of CCA.
RFA, microwave ablation , IRE,TACE and radioembolization are non-systemic treatments that can extend my survival time as an intrahepatic cholangiocarcinoma patient and the PDT and IMRT (ie: Cyberknife),,nano knife,SBRT are treatments for Extrahepatic cholangiocarcinoma patients.
But none of the above treatment choices is a cure for CCA.
Only surgery can provide the onlypossiblecure for CCA.
and the recurrence is high (50-75%) for CCA.
Of course, everybody thinks differently.In my case,I want to find out whether I need to be on gemcitabine forever and I make the decision with the best way that I know how to monitor my CC. so when the CC come back,I still have a better chance to deal with it. As a patient, I can say the 14 months of gemcitabine treatment is difficult both psychologically and emotionally.I cannot imagine of having the Gemzar for life . Of course, I want to live at least up to the national average of 78.5 years for males.
(I am 63 as of 2/2013.)
For those patients who have been on chemo regimens other than just Gemzar,I tip my hats to all of you for enduring such unkind treatment;for I know most of the side effects thru my practice.Sometimes as a PATIENT,your gut instinct may serve you well.
At this point I will not attempt to use any of the targeted therapy agents because of the toxicity or herbal medicine except as above because of the unproven benefit. And because recurrence is very common(65%),I think I have no choice but to accept it and I will continue to learn more about this disease and share with you about my journey.
Finally, as recurrence is very common , try to view CC as a CHRONIC disease like our Marion said may not be a bad idea, like hypertension or diabetes ,then the negative psychological and emotional impact will be much less for the patients as well as for the caregivers when we first heard of this disease and we can devote more positive energy to prepare learning and treating the cholangiocarcinoma at hand.
God bless.May 12, 2011 at 3:42 pm #50297momfromthebronxParticipant
Thank you to everyone who has posted a response to my inquiry so far. My Mom is seeing 2 oncologists in the upcoming weeks (@ Georgetown + Hopkins) so I will soon have more info regarding the protocols they recommend for her.
Again, if anyone else is kind enough to respond to my post please include the details of the drug regimen you were prescribed and if you felt it to be beneficial.
This information will help us assess if my Mom is being offered a standard CC drug regimen.May 12, 2011 at 6:26 am #50295mrhodgParticipant
Hi mother from the Bronx. I have been on gensidabine and cicplatine that has done great on my CC it has taken my tumor marker from 3,960 down to 35.8 with little side effects. They can adjust the Chemo to the person. I am going in tomarro to start a SIRT sphere process it is a radiation process that puts the sphere in the blood veins that are in the tumor. It is a high does right in the tumor and launches. If you are interested google SIRT sphere
ScottMay 12, 2011 at 4:20 am #50294philipMember
I can very much relate to your story. Not that long ago I was in a similar situation to your mother.
I’m a healthy 50 year-old male in Canada; was diagnosed with cc December 21, 2010 and had the same operation your mother had on January 27 of this year. My pathology report showed clean margins and no spread into lymph nodes or other tissues. It’s now 3 months since the operation and I feel great.
My surgeon and oncologist both strenuously recommended adjuvant chemotherapy. I got a second opinion from another oncologist who agreed. Now that I was finally feeling strong and healthy again, facing the prospect of chemotherapy seemed like a huge step backward; but really, there didn’t seem to be much choice. The problem is that even though the pathology report was encouraging it’s possible that there are still microscopic remnants of the disease lingering in my body – cc is a pernicious cancer with a depressingly high rate of recurrence so there’s no reason to take any chances.
Reviewing my options, I saw four scenarios:
1. I don’t do chemo and I don’t have a recurrence
2. I do chemo and I don’t have a recurrence
3. I don’t do chemo and I do have a recurrence
4. I do chemo and I do have a recurrence
Since I don’t have a crystal ball, I felt I couldn’t take a chance on #1 (above). If I do #2 I’ll never know if it was the chemo that helped me avoid a recurrence; but the main thing is to try and avoid/delay a recurrence even if it means undergoing the toxicity of chemo. With #3 – if I don’t do chemo and I get a recurrence, I’d certainly regret it and wonder that maybe the recurrence was avoidable. #4 is the worst scenario: the chemo didn’t make a difference or maybe it gave me a bit more time?
After reviewing the above 4 scenarios I quickly came to the conclusion that I want to do chemo, since my underlying health is good and that I have a young family and many good things to look forward to in life. Maybe I’d feel differently if I was very old and my underlying health wasn’t so good.
I started chemo Monday May 9, 2011 – a combo of gemcitibane/cisplatin – and while it’s only been a few days since my first treatment so far I feel very good.
A few pics of me/family before, during and after operation:
May your mother go from strength to strength!May 12, 2011 at 2:54 am #50293mlepp0416Participant
My husband Tom’s doctors that he has now say that IF he had had chemo AFTER his successful liver resection in June ’08….he most likely would not be in the position that he is in today with a inoperable tumor.
We will never know because even though we questioned it his oncology team at the Veterans Medical Center in Milwaukee told us that he did not need chemo because they had gotten ‘clean’ margins…18 months later he presented with jaundice and they found an inoperable tumor. His then oncologist told him that radiation/chemo would do nothing and that he would be gone in 6 months at the most…we did not listen to that and after 28 rounds of radiation and then oral chemo (Xleoda) Tom is still here some 20 months later.
My advice (and I am by no means a medical professional) would be to undergo chemo…
MargaretMay 11, 2011 at 5:35 pm #50292BazelParticipant
While ultimately a personal choice – with 20/20 hindsight … had surgery been an option for my dad I (now) know I would have encouraged him to follow up with chemo. Most of the standard cc chemo protocols seems to be quite manageable (my dad had few side effects from chemo) and with what I have learned I would have rather he take out that insurance policy.
Just another opinion to ponder …
BzMay 10, 2011 at 3:19 am #50291jathy1125Participant
Mom, Welcome and sorry you had to find us. I am a CC survivor. I had 2 liver transplants, I will be 2 years cancer free May 24, 2011!! My clinical trial involved chemo and radiation. My chemo drugs were IV gemcidabene and 5FU chemo pump while doing radiation. (Radiation was 5 days a week for 6 weeks). I then took Xeloda an oral chemo while waiting for transplant. I never lost my hair and my naseau was controlled with meds. My biggest sympton was tiredness but naps and rest made it bearable.
You can read my story at http://www.thetelegraph.com under christmas miracle, it is full of hope.
Lots of prayers-CathyMay 9, 2011 at 10:58 pm #50290hollandgMember
Hi Mom from the Bronx
This question of to ‘To chemo on not to chemo’ is a regular discussion point here. My first attempt at a whipples operation in December 2009 failed but the second attempt was successful four months later. In between both operation I had chemo (gemzar and oxaliplatin), which I understand is the standard protocol for CC. The chemo went pretty well all considered – the side effects were manageable. Post the successful operation, I did not have chemo as the pathology report indicated that my cancer was of the non-aggressive variety and it had not spread. I hope this helps you with your decision.
GerryMay 9, 2011 at 10:55 pm #50289marionsModerator
Hi Mom….I would also like to chime in and welcome you to our site. Lainy and Jim both bring up good points and I believe that making the decision of adjuvant therapy may be good reason for obtaining one or more professional opinions from oncologists treating a higher volume of CC patients. Also I am hoping for other members to also share their thoughts with you as this appears to be one of the most difficult decisions to make.
All my best wishes,
MarionMay 9, 2011 at 6:27 pm #50288jim-wildeMember
I had a resection done at NY Presbyterian 4/09 and six months of Gemzar following. While my final path report didn’t show any remaining cancer, the oncologist recommended the Gemzar chemo protocol, based on the pathologist’s comment about the aggressive nature of some of the removed tissue. The onc said there is very little data (this is a rare cancer … < 2000 cases per yr in thew US) and no definitive chemo protocol for cc, although Gemzar and sometimes another agent are used as well. This is a nasty cancer with a proclivity to return. I’d be inclined to go with what the doctors recxommend. I wasn’t too cuckoo about chemo either, but several doctors I trust recommended toughing it out. It wasn’t exactly fun, but not that bad either. Now I can use the ‘chemo brain’ excuse for memory lapses. Good luck with whatever you choose.May 9, 2011 at 3:27 pm #50287lainyParticipant
Mom From The Bronx, welcome to our wonderful famiy and congratulations on Mom getting through a difficult surgery and recovering so nicely.
To chemo or not is one of our biggest questions on this site and it is such a difficult and personal decision. A lot would depend on her age, the Stage she is at and what the ONC says the benefits would be if she did and the downside if she didn’t. The fact the surgeon got it all is wonderful news, but the fact it reached a couple of nodes I would think may be a good reason to do the chemo. Again the decision may be made a little easier by knowing age and Stage. Please keep us posted.
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