1 (edited by dani_ya Mon, 03 Feb 2014 17:30:39)

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.

Re: Help

Dani_ya -
Welcome to the family officially. Glad to have you aboard but sorry at the same time. Unfortunately no one can make the decision for you and your mom but we can sure offer out 2 cents worth.

Where is your mother getting her treatment at and has she had a second opinion on the surgery? If you have not had a second opinion on the surgery then I would try like heck to get one. It may even mean gathering your mom's medical records and shipping it all off to another cancer center.

As far as standard treatment, I can speak to the Oxilaplatin. I know there are other that will chime in on the Xeloda and clinical trials. My husband had 6 months of Gemcitabine  and Oxilaplatin. He tolerated it fairly well until the end with 2 of 3 last treatments giving him a reaction of nausea, hives, swelling and difficulty breathing (not a common reaction). Otherwise the biggest problem he had was cold intolerance. He could drink nothing cooler than room temperature and mostly drank it warm such as warm water, teas and other things. He had to dress warm and wear gloves but that is mostly gone now ( 2 weeks since last dose). He was a little fatigued toward the end but not too terribly.

Good luck with the decision.
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.

3 (edited by PCL1029 Mon, 03 Feb 2014 21:15:05)

Re: Help

Hi,
University of Iowa is the hospital to go to in Iowa, it is a very good regional but not specialized in cholangiocarcinoma . I was from that school.
Back to the question, for quality of life, doing nothing is an acceptable idea since she developed nodules in the abdomen and that is a bit difficult to treat. Sometimes Avastin may be of use when use along with Xeloda or 5 FU  and other agents. For some unknown reason , 5FU including its oral form Xeloda, works better for extra hepatic CC than intrahepatic . Major side effects are as KrisV mentioned above. In your mom's case, systemic chemotherapy or targeted therapy is the option, as well as clinical trials if she had done a next generation sequence genomic profile, if not, depends on your mom'a age and health status, , patient may try to have TIL @ NIH if qualify. ( please check the clinical trials on this web site for info) it is an immunotherapy with  very harsh pre-treatment immunosuppressant protocol,but the result is remarkable. One of our member is in the trial with very good result.
Since GEM/CIS  had been working fine before to shrink the tumors, it can be re- use to treat the tumors again too.
Just let you know, I am a patient like your mom and not in the same medical field as the doctors.
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: 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.

Impatient patient.

Re: Help

Sorry to have to welcome you to this site. The genetic mutation is very important in determining how any treatment will work. There are many mutations of this monster.
For my own experience, I never had cisplatin. My previous onc had me treated with gem/oxaliplatin. It was tolerable for a while, but I had neuropathy occur, and eventually they had to discontinue treating me with oxaliplatin. The other side effects were tiredness, nausea, and lower blood counts. Never too low for treatment.
I was also on Gemzar/Xeloda. The Xeloda did not affect the lymph nodes at all, although it held the main tumor at stable.
As far as clinical trials: there are a few out there. I am on an inhibitor, which is doing a great job of keeping the tumor and nodes stable. It is offered at Fox Chase, U of Penn, and another .. maybe Bethesda? It has progressed to phase 2, and has certain limitations. It is also being administered with cisplatin.
As Percy mentioned, there is another trial that is showing promise.
You need to see what your mother wants to do, and help her make that decision. It's a tough decision to make, and one that is very personal.

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: Help

Thank you all for taking the time to reply. I'm sorry I didn't reply earlier. It's been a busy time. It’s been hard for my mother to make a decision. I think she is decided on doing more chemotherapy. She is also open to the idea of a clinical trial.

Krisv: Thank you for sharing your experience with Oxaliplatin. We were told about the cold intolerance. My understanding is that it's not permanent. It only lasts for a couple of days after the treatment. Has that been your experience as well? As far as second opinion, we did have a second opinion from the beginning especially regarding the surgery. We were given the same opinions that surgery wouldn’t be helpful.

PCL1029: I would prefer if my mother receives targeted therapy instead of systematic chemotherapy. It would probably have fewer side effects, and the systematic chemotherapy is always available. The hard thing is to know which clinical trial to do, coping with the travel that's needed, and knowing that the therapy may not work. My mother is doing well, thank God. I did look into the TIL @ NIH, but she is little older than the cut off age sad The GEM/CIS did appear to work. The scan towards the end of the chemotherapy showed shrinkage. The nodules appeared after the radiation. Could it be because the GEM/CIS was discontinued during radiation? Would GEM/CIS work again? What do you think? I heard that if GEM/CIS worked, the disease would have been stable for longer time. I really don’t know.

Lisa: Thank you for sharing your experience. I wish you all the best!

Kris: We weren't offered genetic testing. Do you think we should do it? I do worry about the neuropathy side effect of Oxaliplatin, especially the intolerance to cold. My mother usually feels cold, especially her feet. Do the side effects resolve when treatment is stopped? I read about your experience with the inhibitor. I tried to call the trial investigators to get more information. I left them a message. Hopefully they can tell me their preliminary experience with the drug. Do you know of any other cholangiocarcinoma patients who had good response as you did?

Re: Help

Don't even worry about keeping us updated. We all understand how crazy this is.

As for the Oxaliplatin for my husband it was usually really bad the first couple of days and then would get better over the two weeks off. He did Gem/Ox every two weeks for 6 months. He really just made sure that everything was at least room temp while he was struggling. He wore a hat all the time and had a scarf for his face, gloves and usually warm socks. He had trouble even getting in the fridge at times. Now however he is not really having any problems.

With the neuropthy, it's just a matter of keeping an eye out for any changes in the feet or hands. Usually starts as numbness then progresses to tingling or pins and needles. It can be more permanent so it is vital to alert the MD if symptoms started.

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.

8 (edited by PCL1029 Mon, 10 Feb 2014 09:29:22)

Re: Help

Quoted:
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?

Hi, Dani,

Sorry, I was under the weather for the last couple weeks,

Base on your message,  I really do think you should get a second opinion from Mayo Clinics( conservative) or MD Anderson( more aggressive in treatment choice,more clinical trials if there are any available ); call there for a GI specialist to coordinate your mom's multidisciplinary team review by liver surgeon,medical oncology,interventional radiologist and oncology radiologist on the spot to get a complete and up to date of your mom' s condition.
Avastin is a targeted agent, and if GEM/CIS seemed working before and stopped,I don't quite understand the reason. In general, if a regimen works ,it will continue until disease progress or intolerable side effects occur.
   A second generation sequencing(NGS) genomic profile through Foundation Medicine will most likely asked to have if biopsy is possible if you go to MD Anderson; Mayo has it's own lab and will do the same if asked. The reason to have that NGS is to help you find the either FDA approval or "off the label use" chemotherapy or targeted agent and immunological agents to treat your mom. But I will not surprise the NGS will find amplification or mutation of your mom's gene but still cannot offer any agent that of miracle benefit to treat your mom.  The point here is you know once for all, what will be the best possible choices for current treatment as well as for choosing clinical trials in the future. It is also true that your mom's data will be of benefits to those who will come after as patients like your mom and myself.

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.