jscott
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What an amazing conference. So many positive things happening. I was frankly amazed at all the new research and especially all the new researchers who are focusing on CC. I actually asked a researcher why all the interest in cholangiocarcinoma?
His answer made my day. He said that while all cancers have a lot of genetic mutations, cholangiocarcinoma has a very large fraction of TARGETABLE mutations. Apparently these draw researchers like flies to honey. Not too long ago, I would have said that as a disease, CC seems to get all the bad breaks. Now, maybe things are changing.
More research, more trials, more progress…maybe a cure?
I sure hope so.
Jason
Hi Greg,
I think the difference is whether or not you think of the surgery as “curative.” If you have CC localized in the liver, then surgery could be curative. If it has spread to other organs, then you still might do the surgery on the liver (and perhaps other locations as well), but you would not think of the surgery as curative. If the CC has spread to other organs, then any surgical procedure is unlikely to be able to remove all the CC cells from the body.
Jason
Hi Crissy,
I think vomiting bile happens, but I don’t think it is too common. I haven’t read that many times on these forums. Having said that, my wife vomitted bile continuously for her last two weeks of life. In her case, the cancer had spread to her abdomen. According to the doctors, the cancer had attacked her large intestine and essentially paralyzed it. With her large intestine not functioning, nothing moved through her digestive system. The stomach still produced bile, however, and the bile had to go somewhere.
Very unpleasant. I am sorry to hear that your father had to suffer through that.
Jason
One thing to keep in mind is that there are very few trials specific to cholangiocarcinoma, but there are some that still accept cholangio patients. For example, some trials target a general category of “solid tumors”
Here are two trials that are recruiting in Victoria that only require solid tumors:
http://clinicaltrials.gov/ct2/show/NCT01292655
http://clinicaltrials.gov/ct2/show/NCT01986218
I am very sorry and frustrated that you can’t get better help finding and better access to clinical trials. Without cholangio patients participating in trials, making progress fighting this disease will be very slow.
Jason
Rohrbork,
My wife experienced a significant amount of “referred” pain in her right shoulder shoulder. She had a tumor growing in the dome of her liver that was pushing against and irritating her diaphragm.
The way it was explained to me was that the nerves from the diaphragm attach to the spinal cord in roughly the same place as the nerves from the right shoulder. When the diaphragm nerves send out a pain signal, the brain interprets the pain as coming from the shoulder (Mr. brain is saying something like “no way could the diaphragm be experiencing pain, so all that nerve excitement must be coming from the right shoulder.” ) That is my lay understanding of what is going on anyway.
Maybe when your stents clog the bilirubin goes up, but that also causes some irritation to nearby areas, and this irritation is picked up as shoulder pain??
If you are experiencing referred shoulder pain, I definitely think you should get it checked out. It was the main symptom for my wife’s tumor growth.
Jason
Cholangotango,
My understanding is that drug companies race to get FDA approval, ANY FDA approval, because that opens up the “off-label” market. I believe the “off-label” market is very lucrative.
My guess is that Merck will have lots of Keytruda available pretty quickly for off-label use, because this is exactly why they were racing to be first out with an anti-PD1 drug (and they only have the advantage until some other company, like BMS, gets their PD1 drug approved).
What I don’t know is how you can get an insurance company to cover the costs of using a drug off-label. Do insurance companies do this??
Hopefully someone with more experience with insurance companies can chime in here.
Jason
I just looked back at this and realized how much had changed since that last update. They talk about the roller coaster, and it has been so true for us. Unfortunately, the roller coaster has been mostly going downhill since the last update.
Starting in late June, Andrea started to have pain in her shoulder. It turned out that this pain was “referred” pain. The pain was really from one of the liver tumors pushing on the diaphragm, but her brain interpreted the pain as coming from her shoulder. Andrea got another scan in early July that indicated there were now 3 tumors, and the biggest was 3.5 cm (the one causing the pain).
The shoulder pain had been steadily increasing, and with the tumor growth the decision was made to switch from xeloda to GEMOX. The hope was to shrink the main tumor away from the diaphragm to allow for easier local treatment. Unfortunately, this did not work.
About a three weeks ago, started to get bloating in her belly. We first thought this was just constipation caused by all her pain meds, but eventually we figured out that she had developed ascites. Not a good development. Our oncologist said there were basically two possibilities for the ascites. One was that the fluid was a reaction to the tumor that was irritating the diaphragm (this was the leading hypothesis), and the other possibility was that the cancer had spread to the abdomen.
Andrea had a paracentesis procedure where they removed 3 liters of fluid. They tested the fluid and determined that the fluid was malignant. This basically meant that the cancer had left the liver, and progressed to somewhere in the abdomen. Malignant ascites is not a good development. About 11 days after her first paracentesis, she had another where they removed 5.2 liters of fluid. The fluid build up is very uncomfortable, so she is now on a weekly schedule to try and keep it better controlled.
What is the plan? Well the number of possibilities seems to be much more limited. She has switched from GEMOX to FOLFIRI. This has hit her hard after just one treatment. Heavy fatigue and painful cramping. It has helped the shoulder pain though, so perhaps it is working. We will see what the tumor marker shows next week. Andrea also had a biopsy done that was sent off for genetic testing. We should get the results for that on Oct. 6. I am hoping that the genetic testing finds something that we can either target with an off-label treatment, or qualify for a clinical trial.
So that is the update. Lots of twists and turns. So many have been negative recently, we are really struggling to try to stay positive. Hopefully we will get some good news soon.
Best to all,
Jason
The drug in testing is ADI-PEG20
Here are the trials I found searching for this drug:
http://clinicaltrials.gov/ct2/show/NCT01287585?term=ADI-PEG20&rank=1
Jason
Here is a link to the news article:
http://www.neomatica.com/2014/08/21/chromatophagy-new-cancer-therapy-starve-diseased-cell-eats-dna/
and the research article:
http://www.pnas.org/content/early/2014/08/12/1404171111
Jason
For me…
1st choice — Does it need to be a week? could you take the day 8 treatment and move it to day 9 or 10? That would not impact much of anything.
2nd choice — I would add an extra week between treatments and treat it as a mini “chemo break.”
I can’t really point to any medical data or anything other than shifting a day or two and chemo breaks happen all the time.
All of the options are probably about the same to be honest.
Jason
Hi Cazgirl71,
I am not a medical professional, but I have done some research and talked to researchers in the field. Based on that, my understanding is that cholangiocarcinoma is unlikely to have a strong inherited component. Very very few patients have other family members that have had cholangiocarcinoma. It is not impossible, but at this point, CC doesn’t show the characteristics of a strongly inherited disease like some other cancers.
Most (all?) cancer cells have messed up genes that cause them to reproduce uncontrollably. A person could inherit the messed up (or nearly messed up) genes from their parents, or they could have normal genes that mutate into cancer genes during their lifetime. This mutation process could be just a random event or could be encouraged by certain risk factors (e.g. inflammation of the liver from parasites, etc.)
Again, my understanding is that CC is thought to likely be from genetic mutations the person acquires during their lifetime and not something that they inherited from their parents. At this point, it seems like there could be an inherited component, but because so few patients have family members with the disease, the inherited component is unlikely to be that large.
I hope that helps. Keep in mind, this is just the crude understanding of a caregiver that has done some looking into the topic, but is in no way an expert.
Best,
Jason
My wife’s experience:
Tumors completely inside the liver ==> no pain
One tumor on the edge of the liver that was growing and pushing on the diaphram ==> severe pain.
Pain can certainly be from the cancer, but it seems to really depend on each individual tumor location.
Jason
Hi Jane,
Cholangiocarcinoma is usually found at a late stage because symptoms often only develop at a late stage. However, if an extrahepatic tumor causes an early bile duct blockage, then that could contribute to finding it earlier.
My understanding is that you are right in that surgery is the only procedure that is performed with “curative intent.” I don’t think chemo + chemoradiation is generally thought to be curative. However, I believe this is a pretty common approach, and is part of the protocol that the Mayo clinic uses as a preparation for a liver transplant. You could search for “Mayo transplant protocol” to learn some more about that.
I would also echo others in encouraging a second opinion. So few doctors have CC experience, that it is a good idea, in my opinion, to try and find at least a couple of experienced teams and see what they recommend.
All the best,
Jason
It looks like they are starting up this trial at many of the major cancer centers.
The page on clinicaltrials.gov has the other centers (although everybody currently shows not yet recruiting.)
http://clinicaltrials.gov/ct2/show/NCT02150967
Thanks so much for letting us know how things are going.
Jason
