November 27, 2017 at 10:08 pm #96153
Thanks for passing along this great news about your MIL’s awesome response to treatment.
You are right – since she is pursuing both the standard chemo plus alternative treatment, it is hard to know for sure if the results were due to one or the other, or the combination, or some other unknown factor. Some people do have this degree of positive response to the chemo.
I hope her next visit with her University of Michigan medical team presents a good treatment plan going forward.
Regards, MaryNovember 27, 2017 at 3:59 pm #96147
So, the MIL pet scan was delayed a couple months because she had missed some treatments due to her blood work counts not rebounding enough. She had a cat scan about 4 months ago and that didn’t show any changes. Everything was the same size, so they continued the gem/cis (I think) chemo treatments. She just had her pet scan at 8 months and got the results.
So she had about a 7 cm tumor in the right lobe, and a couple little ones in the left, and a 3 cm tumor in the left lobe. The larger tumor in the right is completely gone. The little ones in the left are gone, and the 3 cm tumor in the left is down to about 1.5 cm in size. So 8 months ago, her liver was lite up like christmas, and now she’s down to just one small 1.5 cm tumor.
So what changed in the last 4 months when the cat scan showed everything was the same size? Well, hopefully I don’t end up dead for saying this, But we really ramped up the cannibis oil capsules. She’s only taking about 1/3 g every night, when ideally we want her to get up to 1 g every 24 hours, but she wasn’t much of a believer in it doing anything except giving her a buzz for a few hours when going to bed.
So, maybe it just took some time for the chemo to kick in, except the dr kept reducing the treatment doses to let her blood work rebound, so she was actually getting a lot less chemo in the past 4 months. Or, maybe it’s the cannibis oil. Whatever it is, I’ll take it as a win. We are going back to University of Michigan on Friday to discuss treatment options now that weren’t an option before. Hopefully they can do something more targeted because the chemo was really starting to take it’s toll on her.September 30, 2017 at 2:59 pm #95740CaitParticipant
More of the same confirmation from me – I was intrahepatic, 9 cm tumor in my liver, and the only blood marker that was elevated was my CA19-9 tumor marker. If they had looked at liver enzymes alone without the CA19-9, they might have thought I was fine even though 83% of my liver was tumor.
You are correct about PETs being more accurate for intrahepatic. They’re also incredibly sensitive and can light up from such innocuous things as someone reading a book before the test and the repetitive arm movement causing the arm to uptake more of the solution. For this reason, biopsies are the gold standard, but CT’s and MRI’s are also used to visualize the mass and see if it has some of the physical characteristics of cancer (i.e. calcification).
Not a radiologist either, just a patient who’s read a ton. Kudos to you for seeking more information and advocating for her! If you ever start to get a gut feeling about things, second opinions are wonderful tools!September 28, 2017 at 8:19 pm #95708
Regarding clinical trials, each have their own eligibility criteria, but generally there is importance placed on trials testing new drugs on a diverse population. If a drug is not tested on a given group, e.g., elderly, then the drug company cannot credibly assert it would work for that group. Given that CCA disproportionately affects older people, it seems that trials would seek to include seniors.
I quickly looked at the information on clinicaltrials.gov for some of the CCA drug trials board members are participating in, and the ones I looked at all include seniors with no indicated age limit as part of their eligible groups. There are other eligibility criteria as well, e.g., current health status and nature of prior treatments. If you have not looked at the site, it has a nice search engine by cancer type and geographic location. There is also good info on this website re trials.September 28, 2017 at 7:43 pm #95707
Thank you for the post. University of Michigan was supposed to take one of the biopsy slides and get it genetically tested to check for clinical trials, but they never heard anything about it. The other thing we “heard” was that once you are over 70 (she is 72) you are considered elderly and probably won’t qualify for any clinical trials. Again, that was just something we “heard”. Yes, U of M was very familiar with CCA and their doctors were very confident and knowledgeable. Hopefully, this is a good reason to go back there after 6 months and get a review of everything and see what they have to say.September 28, 2017 at 4:45 pm #95704
As you describe, this cancer needs a team approach among doctors, and if the day-to-day treatment is done locally, it is imperative that there is good communication back with the major cancer center. The medical providers with CCA experience should be in the lead evaluating and determining treatment. I agree with the concerns you are expressing. I hope the U of M team can get treatment back on track for your MIL, including perhaps recommending an alternative to the esteemed Dr. Q who can inspire more confidence with your MIL and your family.
CCA is sufficiently rare that it is very possible a local oncologist has not seen many or even any other cases. All the more reason to be sure treatments are determined and monitored with involvement of a doctor more specialized and with clinical experience with this type of cancer.
It is possible there may be a conclusion that treatment should change. This may pull your MIL into considering the option of clinical trials. If you have not done so, you may want to start gathering information on this possibility, both using the resources on this website and looking at clinicaltrials.gov to start seeing what trials may be available in your area.
Best wishes and regards, MarySeptember 28, 2017 at 3:59 pm #95703
I thought I posted this comment already, but it might have got lost in the transition to the new forums.
So the MIL has missed the last two chemo treatments because the red blood count was too low, and the dr said if she misses two, then they have to change things up because that means her body is not rebounding quick enough and can’t handle the chemo. She hasn’t had any real side effects from the chemo, so changing it up could cause a whole new set of problems. She’s tired all the time but that could be the low red blood count. Her main dr is at university of michigan and she’s getting the chemo treatments locally by an oncologist she refers to as a “quack”. They are calling u of m now to get an appt and to make sure all the recent records are being sent there because dr quack seems to have just taken over and doing what he wants and they don’t think anything is being sent to u of m. Especially if he’s going to change up the chemo treatments. That’s supposed to be coming from u of m and not dr quacks office. So we’ll see. They originally talked to dr quack but the way he talks doesn’t inspire much confidence. Things like “well we will try this and see what happens”. Also, he has no patients with any form of liver cancer….is that because it’s rare or are they all gone? Either way, nobody wants to hear their dr say things like, “let’s try this”.September 17, 2017 at 8:18 pm #33956bgmat48Participant
Same here. My CC was discovered with a sonogram while they thought I had a gall bladder problem due to mild abdominal discomfort for a year. No other symptoms or signs,It was a 8 cm tumor which was removed with my left liver love. I was fine for 6 months until the next scan that showed recurrence of 2 small tumors. Chemo treatment for the last 18 months, first Gemzar and Cistaplatin for 6 months and now just Gemzar and TACE which injects strong chemo directly into the tumor. Not a cure but a way to control CC.September 17, 2017 at 1:12 pm #33958darlaParticipant
I can only confirm what the others have said. My husband’s liver enzymes and functions appeared normal until very close to the end, which is why this cancer is so hard to diagnosis.September 17, 2017 at 3:24 am #33957
I wanted to chime in on the question of how a person could have normal liver function tests if diagnosed with cholangiocarcinoma. Like Melinda, I also had a largish tumor but normal liver functions. This is one reason CCA can be hard to detect. Depending on the location of the tumor it may not interfere with liver functions if there is enough healthy liver left to keep things going.
I hope your MIL continues to do well with so few side effects of treatment and that the next round of scanning shows good results. Please keep us posted.
Regards, MarySeptember 15, 2017 at 4:40 am #33959mbachiniModerator
I also had normal blood work, my liver enzymes were always normal despite having a 13cm tumor in my liver. I also didn’t look sick. I really didn’t look or start to feel really sick until the toxicity of chemo set in……It is a crazy thing to find out you have cancer with so few red flags. Looking back, I can see more signs…at the time I could account for them due to my job. All my best to you and your MIL. Keep us posted on progress.
MelindaSeptember 14, 2017 at 12:51 am #33961
Thank you for the article. I did read it and at first I was a bit worried with the low percentage of accuracy, but when they got to the intrahepatic the percentages were very high with regards to accuracy. So that answers my questions with regards to how accurate a pet scan is.September 13, 2017 at 10:05 pm #33960karendParticipant
I must preface this post with the fact that I am not a radiologist, but here is a very good and detailed article that may help to answer your questions.
The article is a systematic review which uses the highest quality evidence to present findings. The authors discuss the use of PET/CT in gallbladder and cholangiocarcinoma and go into more specifics on the diagnosis of intrahepatic cholangiocarcinoma (IHCC) using PET/CT.
If you scroll down to section 3.2.2, the authors cite one of the studies in their review which found that PET/CT in the diagnosis of IHCC had a very high sensitivity and specificity to detection of the primary cancer.
Thank you for sharing that you MIL is doing so well! I am happy to hear your news.
-KarenSeptember 13, 2017 at 5:06 pm #3023
So the MIL was diagnosed almost 6 months ago, and will be going to get another pet scan. I guess insurance only pays for those every 6 months. She’s been on chemo for about 4 months, no real side effects. No nausea, hair loss or weight loss. She has some good days and some so so days that she is exhausted.
The really weird part, is she had a checkup with her oncologist, and he’s said this before, and he said it again. That looking at her bloodwork, and looking at her appearance, you would never guess she has anything wrong with her. Her bloodwork shows the liver is functioning normally and everything else is normal. It always has been since she was diagnosed. The original diagnoses came when she was having abdominal pain and went to the hospital. The pain went away without really doing anything, and they did a cat scan and found the mass in her liver. Biopsy showed it was cancerous. If it wasn’t for the fact that she had a pet scan, and from what I understand, the pet scan also confirms cancer, I would be questioning the biopsy results. I mean, if all the doctors were relying on this one biopsy test result to confirm she even has cancer, and nobody looked at the slides again to confirm it, then I’d question if the test was wrong. So am I correct that a PET scan does confirm cancer without a doubt? I’m sure everyone at some point questions the test results, but when the drs keep saying that her liver is fine, and that surprises them, you start to wonder….
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