August 2, 2017 at 12:01 pm #95301bglassModerator
It is good to hear that the tumor marker is moving downward. Hopefully this is a preview of a good news scan. Please let us know how that goes.
Regards, MaryAugust 2, 2017 at 5:41 am #95300richnkimParticipant
Mary and Melinda thanks for the info-it’s hard to accept when treatments are only working on one area and not all of them.
Right now he is in a clinical trial at UW Madison trial INCB054828 he started it June 29th with a tumor marker of 282 and today’s tumor marker test came back at 97 so it seems to be working, he will be getting a scan Aug 9th so we will see what that shows.August 1, 2017 at 8:27 pm #95299mbachiniModerator
I did/do have metastasis to the lungs. Prior to immunotherapy treatment the tumors in my liver and lungs responded differently to chemo treatments. I would agree that most likely they are metastasis to the lungs.
MelindaJuly 31, 2017 at 7:56 pm #95298bglassModerator
It is my understanding that metastatic tumors have both common elements and differing elements with the primary tumor(s), and hence may respond differently to treatment. I believe doctors will tend to assume that new lesions appearing after a primary cancer is diagnosed are metastases of the primary cancer. And CCA can metastasize to the lungs. It is always possible that there is a second primary cancer afoot, but my understanding is this would be a rare event.
Regards, MaryJuly 31, 2017 at 6:16 am #95297richnkimParticipant
I’m a little confused on the blood sample testing can it tell if you have different types of cancer? The reason I ask this is Rich was doing well on Gem/Cis was getting shrinkage per scans but the nodules in his lungs kept growing. They could not do a biopsy on them because they are to small. So it makes me think that maybe what is in his lungs is not mets from the CC but another kind of cancer.
Also is Guardant Health like Foundation One where if your insur company doesn’t pay the full bill they don’t charge you the rest?
Thanks KimJuly 31, 2017 at 5:28 am #95296marionsModerator
positivity…..it doesn’t take a large amount of tumor tissue for diagnosis, but molecular testing requires a significant larger amount of tissue as the essay will test for up to 500 protein expressions.
Hope this helped.
MarionJuly 31, 2017 at 5:21 am #95295marionsModerator
As far as I know the more advanced the cancer, the more tumor cells circulate in the blood. I think it works best for Stage III/IV but don’t hold me to this statment, please check with the physician for verification.
Having said that I would investitage the possiblily of a liquid blood test.
MarionJuly 19, 2017 at 2:51 pm #95294positivityParticipant
Thanks for all your input.
My oncologist’s office said the blood sample is not as thorough as a tissue sample which tests 300 different mutations. We may not move forward anyway, but will look into the suggestions stated in the above posts.July 19, 2017 at 5:56 am #95293spokanemomParticipant
We had the same issue with my husband’s sample. They went ahead and tried to test it, but it failed in the final round and we got no results. They did not charge us.July 19, 2017 at 3:29 am #95292mbachiniModerator
Here are a few links of articles discussing liquid biopsies. It is nice to have this option when acquiring tissue samples can sometimes be difficult and hard to get with cc patients.
Thanks for the insight Beatriz, and hoping you can check into this option for your mother Positivity.
MelindaJuly 19, 2017 at 1:54 am #95291beatrizParticipant
Holding space for you and your mom and healing to occur…..just wanted to point out for you and anybody else in need of molecular profiling that you don’t need tissue sample.
That is right…blood biopsies are much more precise and effective because the tumor and the cancer shed proteins into the blood stream and that is why it is more precise than the invasiveness of tissue (plus much more cost and time efficiency) In fact I was told that some oncologist do these blood biopsies on regular basis because once treatment has started the mutations change over time to adapt……that is how smart our human body is….so it is not uncommon for patients to have blood biopsies on a monthly basis (if you don’t believe me call Guardant Health and ask them how often do patients get their tests) but again depends on many factors the clinical trial, the treatment, the oncologist, the end goal, etc….I know with my patient it was done at the beginning (to have a base) at the end of the chemo/experimental drug which by the way I was surprised to see the mutations had change. There are several companies out there. Guardant Health (which tests the most gene) and PGD Plasma 64 + MSI the only blood test in the market to test for immunotherapy checkpoints (MSI). Hope this helps you…July 18, 2017 at 8:52 pm #13535positivityParticipant
My mom’s tissue sample was sent to Foundation One for molecular testing and they responded that there was not enough tumor sample to run the test. She will definitely not go through the process of another biopsy! It did not meet minimum requirements, but they can proceed anyway if we want to.
I don’t know if this would be beneficial.
How could they have enough sample for diagnosis, but not enough for this testing?
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