pcl1029
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Hi, Julie,
As you have already known, HAI pump is a clinical trial for ICCA patients ;it is a method that can directly deliver high dose of chemotherapy agent at the site of tumor. Less side effects of chemotherapy agents has been observed in colon cancer study as compare to traditional intravenous method .However, you are absolutely correct that recurrence rate for ICCA is>75% even after liver surgery with R0 (clean margin). that is why we call ICCA as a chronic disease. I am a patient of ICCA for 58 months with 3 resections and 3 RFA (ablation); It is tough,but if you keep learning and watch your mom closely. you will enjoy lots of Christmas to gether in the years to come.
God bless.
Hi,
Generic names are universal languages for medications; try to find the generic names first in your country and but them;
Generic medications are the “Trade name equivalent ” of that drug and should not make any difference in both drug efficacy and side effects. If the patent of the Trade name drug was not expired, get the name of the generic and bring it to a pharmacist to look it up for you in your country for the Trade name drug your country used. This is his responsibility as a Licensed pharmacist. If I were you, I will just give the Trade name used in the States to the pharmacist and let them find it out for you. if they don’t know or don’t have time, go to another pharmacy.God bless.
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.
Hi,everyone,
Sorry,Theresa,we could not find time to meet.
My appointment including one nite stay after the RFA procedure. Everything works perfectly. It was the flu like symptoms that dragged me down after went back home.
Have not eating for 4 days, it just don’t have the mood .
Thanks for your concern, I hope I will be back shortly to join the discussion board.
God bless.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.Hi
I believe Dilantin was in Dr Patel article
In the reference articles, the first onehttp://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57121#p57121
God bless.
Hi, Ceci,
Base on what your message reply, I will definitely seek a 2nd opinion on interventional radiologist(IR) ASAP since the 11 tumors are on the right side.Radioembo or at least chemoembo to the right lobe will be helpful to decrease the tumor load of the liver .But please remember, I am only a patient like your 42 year old daughter, I am not a doctor; segmental radioembo or chemoembo are relatively easy procedure to have and if I were you, I will consider that first before targeted therapy.
God bless.
Hi,
you may have to report to the oncologist him/herself if the side effects that you described –“during the infusion and for about 3 hours after, she has some strange, scary symptoms: tongue-tied thickening feeling in the mouth – hard time talking; eye twitching; a very very heavy feeling in upper chest & swallowing area. ” continue next time.
Folfirinox infusion is not easy to take and endured.KRAS amplification (G12D)
TP53 R175H
CDKN2A and B (loss of each)
CCND3 amplificationIf I were you, I will wait after the next scan to hear what the doctor say first .All the above mutation or amplification or the loss of the gene function clinical trials ;2 of them are at Mass General on the east coast and most likely they will not let you to have 2 trials going on at the same time.therefore clinical will be my last resort since you still have chemotherapy and targeted therapy options. I do not know what location of your daughter’s tumor, the size of them and the number of them;but in general, if there are a lot tiny ones and large ones up to a certain size, segmental radioembolization(Y90) or chemoembolization of the lesions are some of the interventional radiation choices. If the tumors are <3cm in size each and no more than 4-5 in numbers, they can do RFA or microwave ablation.
Radiation such as SBRT and IMRT done by oncology radiologist can be useful too in controlling the growth of the tumors.
Please remember, chemotherapy is only one of the options to manage this disease; and as always, since this is a rare disease ,the patient population is small therefore competition for treating patient is always a logical concern for patients and their care givers.We need to choose wisely.God bless.
Hi,
The best news is that your wife can have surgery.
As far as the use of chemotherapy after surgery is concern; most doctors will recommend adjuvant chemotherapy and/or radiation or do nothing.
There is not a standard regimen to follow after surgery for this rare cancer. so as long as your wife’s surgeon is specialized in liver surgery, then your wife will be in good hands.
In the meantime, if I were your wife, I will eat well,gain enough energy reserve to prepare for a quick recovery after surgery.
BTW , if I may ask, what age is your wife and where she get treatment and surgery?God bless.
Hi, Caroline,
If every caregivers channel their energy like you in reporting your mom’s journey,let other patients and caregivers know about the most up to date effectiveness and/or side effects of the clinical trials; it will surely decrease the anxiety of those who want to participate in such trials. That will be the way for me too if I exhaust all other options.
Thanks for such easy to read time-line reporting; I sincerely hope that the clinical trial will work for your mom and at the same time increase her quality of life as well. Awaiting good news from you after scanning.God bless.
Hi,
High protein drinks like Carnation Breakfast drink,or Ensure plus or Boost plus[ie: there are 360 Calories in 8oz (237ml)of boost Plus] and add fruits and vegetables.
other people will have their suggestions too.However the reasonable thing to do now besides the above is to prepare for things after the CT scan next month. If I were you, I will check out whether your Government will provide disability benefits to your husband because of his illness.
In the States, cholangiocarcinoma qualify for such benefits and if so, your husband will not need to go back to work and will have more time for you and the family.God bless.
Hi,
Your wife is in good hands especially if the SIRT will be done in 2 sessions to lower the risk of radiation toxicity to the liver.
God bless.
Hi, fntn,
please check the link below and especially the last paragraph.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=84360#p84360
God bless.
Hi, Glen,
May I ask what age is your wife?
You mentioned she have tumor in both lobes? if this is true, will the IR (Radiologist) do the procedure for the whole liver or segmental?that means one lobe at a time to minimize the radiation toxicity to the liver and do SIRT a few weeks later to allow the liver recover more ,then do the other lobe. It is much easier for the IR to do the whole lobe as one procedure. it save time and money, but you can ask above concern to them and let them tell you professionly and medically.
In general, young patient can take a bigger dose of radiation by SIRT on both lobes, but if the patient’s liver functions was abnormal to start with and his/her age is not young(ie: >65,just an example and not a scientific figure), then make your concern known to the doctor especially the patient have other health issues(ie: hypertension,diabetes lung and thyroid issues.) co-exist with the cholangiocarcinoma at the same time of the procedure. So the doctor will be more cautious and will monitor the patient more closely .
My point is the older the patient the longer and harder it takes to recover.God bless.
Hi, Mary,
May be the link below will help. Carefusion is a big company to make TPN and other products for the hospitals.
God bless.
