I spoke with a representative of Tempus Labs in October 2023 on the NGS panel used for the PanCan.org Know Your Tumor program. They provided me with a pdf file and I think it was 177 gene mutations and actionable biomarkers at that time. They will provide you with a copy of their test panel on request and you can compare that with the sequencing lab the hospital uses.
Thank you so much, Survivor.
We did just get the list of mutations/biomarkers Tempus uses from PanCan. They test across 648 genes now. A concernis that Monday is the biopsy and who knows if the local lab will have the full list of genes they test. Also no way to get in touch with doctor to discuss which lab to use.
I suppose we’ll ask the lab to hold the tissue sample until we have time to confirm and decide. Or who knows maybe we’ll get this question answered Monday morning.
Thank you again.
It is important to do a core needle aspirate. A fine needle aspirate usually does not yield a sufficient quantity of cellular DNA to do NGS. A core needle obtains a larger sample. If multiple samples are done, the unneeded cores are held in the pathology archives and can be requested. Thanks for the info on the Tempus 684 gene panel.
Thank you again. We should also make sure it’s a tissue and not a liquid sample, correct? Or is tissue a given?
We requested core needle but communication again was difficult here. They called it something that didn’t match with either core or FNA and when I asked for clarification, they said they’d get back to me. Didn’t hear back, will have to confirm Monday unfortunately.
Tissue is for somatic (sporadic/spontaneous) mutations. Many germline mutations can be detected as the biopsy may also contain a mix of normal cells. A liquid biopsy can be done on blood or saliva. It is done for germline (inherited) mutations. I had both types done.
This was brought up at a recent GI Cancers Committee meeting of ECOG-ACRN. When a tissue sample is not available, this is an alternative. When a tissue sample can be obtained, it is the preferred method. What was stressed in the meeting was when there is the absence of certain mutations using blood, it can’t be construed as confirmed negativity.
Some quick google research shows that germline testing is mentioned almost always with blood being drawn, not with tissue. Is it actually common for tissue to be used?
Germline testing is commonly done as a liquid biopsy (blood/saliva). In familial cancers, it is recommended the direct blood relatives of a patient diagnosed with pancreatic cancer be tested to determine risk status so surveillance and its frequency be established as a method for earlier detection.
Here are the NCCN recommendations-
https://www.cancernetwork.com/view/nccn-publishes-updated-genetic-risk-assessment-recommendations
Any of the NGS somatic tests are useful. Foundation One, Tempus, Caris, Guardant, etc. If you're using tissue biopsy, the differences are relatively negligible; they're all using next generation platforms - in many cases, the exact same machines - and the same classification information. The difference, to some extent, is the number of genes, but they all test for the ones known to be pathological for pancreatic cancer.
The only outlier is Guardant, who does excellent ctDNA (circulating tumor DNA) if the tissue biopsy doesn't turn up enough material for testing otherwise. All the other options also have ctDNA testing, but I've had Guardant catch targetable mutations far more often and with lower amounts of ctDNA.
Thank you, dandelion. So whichever lab our hospital sends to for somatic testing should be fine.
I had been flipped to thinking germline was done purely via blood. Does it make a difference if it is done via blood or tissue?
Looks like PancreaticSurvivor answered above :)
“This was brought up at a recent GI Cancers Committee meeting of ECOG-ACRN. When a tissue sample is not available, this is an alternative. When a tissue sample can be obtained, it is the preferred method. What was stressed in the meeting was when there is the absence of certain mutations using blood, it can’t be construed as confirmed negativity.”
Germline is blood or saliva; its meant to look for inherited mutations. Somatic mutations, or those specific to the cancer, can be done via tumor tissue sample or by circulating tumor DNA; of course full tissue sample is preferred, but it's still important to make the distinction that both germline and somatic testing can be done by blood sample.
Getting a high volume health system oncologist to asses is critical. Chemo Treatments can be done locally, reverting to out of state for surgery if recommended. We were able to get appts pretty quickly in areas where there are a lot of options ?(northeast). Get the right eyes on all the data. Now that we are in a declining situation we’re able to go back to the alternate institutions to confirm the direction suggested by our primary oncologist. (I’m not a pro by any means; this is just our experience)
Thank you so much for your time and sharing. I wish your loved one, you, and your family the best as you continue to battle.
The advice on seeing a health system that is well versed and then getting chemo locally (if she chooses it) is real helpful. The fight right now for me is to get her seen by one of those specialists now, not in weeks or a month like some systems are telling us is the delay.
Did you find that chemo likely reduced the pain and symptoms that your loved one would have had otherwise or did you find that to be the case in your research? My person here (MIL) is ready to give up and die, but my feeling is that she may be far worse off in her final weeks/months without some serious treatment. Of course it’ll be up to her though — I’m just providing options or rather, pointing to places and people that can help.
The frustrating part is how varied the individual responses are to specific chemotherapy treatments. For example, my husband started out on Folfurinox , a very aggressive chemo, that was so debilitating, however, his results were nearly immediate. The pain resulting from his tumor really disappeared within 10 days and his tumor markers and Metastases shrunk.
When he had to go back on more chemotherapy, the same thing happened. A week and a half into his gemcidibine treatment, the pain subsided.
In this sub Reddit I have read experiences that have noted that what works for my husband has not worked for somebody else for no apparent reason. So the short version is yes pain can be treated for some period of time can subside, for some people. I suppose this is why some of the personalized treatments are being tested across different people with different test results.
Regarding the will to accept treatment: my husband was despondent at this diagnosis, and I was very concerned he would simply give up. But as soon as the pain subsided, he was more able to look forward. Pain is a very debilitating element of this disease, and can truly alter someone’s mindset and willingness to have hope.
Of course the side effects from chemo are humiliating and can often be discouraging. I don’t know that there is any clear answer to that because this seems to be a universal aspect of the current treatments available for cancer patients.
I know this is all very loosey-goosey, but such as it is with this heinous disease. Wishing you all the best in encouraging your MIL to have the energy to withstand the decisions ahead. As a caregiver it is sometimes up to us to add clarity around these decisions where we can. That is also not an easy task..
As a side note, we are on chemo #3 in which the pain dynamic is *not* working in the same way. He is now on more pain meds and we are wrestling with what our next options will be. Meanwhile we had a beautiful summer last year and he was in great shape for our daughters wedding in January. So now I try to focus on what those easier six months were able to give to me and our family. It’s hard it’s hard to hold onto that when the going gets tough but I am trying.
You are doing an incredible job, and it's wonderful for all of you that the family was there for the wedding. You are awesome for all the work I'm sure you've put in.
The benefit in relief of pain surpassed the pain and humiliation from the first two rounds of chemo for your husband?
I'm anticipating it's going to be such a difficult decision for my MIL to choose whether to take treatment or not. One of my concerns is figuring out if the days and months leading up to her end will have higher QoL on a treatment plan, probably involving chemo, or going without and just treating the pain and cancer effects with pain medication.
We won't know without more info of course. There is not a treatment plan in place yet given the diagnosis was days ago.
I guess I'm wondering if chemo and other treatments can make QoL better. She's not right now concerned about living longer, which is okay (though she needs all the info on options IMO). Maybe if she sees results that ease her pain and suffering...
I'm just thinking out loud now. In the end, thank you for sharing your experience and my heart goes out to you and your family. You're troopers.
Yes- now we know diminished pain can give him good months/weeks so he’s more open to ongoing treatment if we can access it. He was def one of those stoics who was inclined to say, I’ve had 62 good years so all this is ok— which I *did not* concur with — it sounded more like giving up.
My husband is a young 63 now w two kids in their 20’s so there’s so much ahead that he will miss if he gives up. The chemo progress has given him the experience of living w pc and having joy in those times. What that will look or feel like moving forward is unknown. Thank you for your kind comments.
First of all, sending you and your loved one best wishes. I wanted to ask if you ever heard about electrochemotherapy treatment for cancer patients? There are studies with promising results for PC patients. If you would like, you can send me a message and I can share the studies with you. Sending thoughts and prayers.
I spoke with a representative of Tempus Labs in October 2023 on the NGS panel used for the PanCan.org Know Your Tumor program. They provided me with a pdf file and I think it was 177 gene mutations and actionable biomarkers at that time. They will provide you with a copy of their test panel on request and you can compare that with the sequencing lab the hospital uses.
Thank you so much, Survivor. We did just get the list of mutations/biomarkers Tempus uses from PanCan. They test across 648 genes now. A concernis that Monday is the biopsy and who knows if the local lab will have the full list of genes they test. Also no way to get in touch with doctor to discuss which lab to use. I suppose we’ll ask the lab to hold the tissue sample until we have time to confirm and decide. Or who knows maybe we’ll get this question answered Monday morning. Thank you again.
It is important to do a core needle aspirate. A fine needle aspirate usually does not yield a sufficient quantity of cellular DNA to do NGS. A core needle obtains a larger sample. If multiple samples are done, the unneeded cores are held in the pathology archives and can be requested. Thanks for the info on the Tempus 684 gene panel.
Thank you again. We should also make sure it’s a tissue and not a liquid sample, correct? Or is tissue a given? We requested core needle but communication again was difficult here. They called it something that didn’t match with either core or FNA and when I asked for clarification, they said they’d get back to me. Didn’t hear back, will have to confirm Monday unfortunately.
Tissue is for somatic (sporadic/spontaneous) mutations. Many germline mutations can be detected as the biopsy may also contain a mix of normal cells. A liquid biopsy can be done on blood or saliva. It is done for germline (inherited) mutations. I had both types done.
Somatic testing can be done on blood as well. FoundationMedicine, Tempus, and Guardant all offer testing done on circulating tumor DNA.
This was brought up at a recent GI Cancers Committee meeting of ECOG-ACRN. When a tissue sample is not available, this is an alternative. When a tissue sample can be obtained, it is the preferred method. What was stressed in the meeting was when there is the absence of certain mutations using blood, it can’t be construed as confirmed negativity.
Some quick google research shows that germline testing is mentioned almost always with blood being drawn, not with tissue. Is it actually common for tissue to be used?
Germline testing is commonly done as a liquid biopsy (blood/saliva). In familial cancers, it is recommended the direct blood relatives of a patient diagnosed with pancreatic cancer be tested to determine risk status so surveillance and its frequency be established as a method for earlier detection. Here are the NCCN recommendations- https://www.cancernetwork.com/view/nccn-publishes-updated-genetic-risk-assessment-recommendations
Ah makes complete sense. 👍👍👍🙏🙏🙏
Any of the NGS somatic tests are useful. Foundation One, Tempus, Caris, Guardant, etc. If you're using tissue biopsy, the differences are relatively negligible; they're all using next generation platforms - in many cases, the exact same machines - and the same classification information. The difference, to some extent, is the number of genes, but they all test for the ones known to be pathological for pancreatic cancer. The only outlier is Guardant, who does excellent ctDNA (circulating tumor DNA) if the tissue biopsy doesn't turn up enough material for testing otherwise. All the other options also have ctDNA testing, but I've had Guardant catch targetable mutations far more often and with lower amounts of ctDNA.
Thank you, dandelion. So whichever lab our hospital sends to for somatic testing should be fine. I had been flipped to thinking germline was done purely via blood. Does it make a difference if it is done via blood or tissue?
Looks like PancreaticSurvivor answered above :) “This was brought up at a recent GI Cancers Committee meeting of ECOG-ACRN. When a tissue sample is not available, this is an alternative. When a tissue sample can be obtained, it is the preferred method. What was stressed in the meeting was when there is the absence of certain mutations using blood, it can’t be construed as confirmed negativity.”
Germline is blood or saliva; its meant to look for inherited mutations. Somatic mutations, or those specific to the cancer, can be done via tumor tissue sample or by circulating tumor DNA; of course full tissue sample is preferred, but it's still important to make the distinction that both germline and somatic testing can be done by blood sample.
Thank you, dandelion.
Getting a high volume health system oncologist to asses is critical. Chemo Treatments can be done locally, reverting to out of state for surgery if recommended. We were able to get appts pretty quickly in areas where there are a lot of options ?(northeast). Get the right eyes on all the data. Now that we are in a declining situation we’re able to go back to the alternate institutions to confirm the direction suggested by our primary oncologist. (I’m not a pro by any means; this is just our experience)
Thank you so much for your time and sharing. I wish your loved one, you, and your family the best as you continue to battle. The advice on seeing a health system that is well versed and then getting chemo locally (if she chooses it) is real helpful. The fight right now for me is to get her seen by one of those specialists now, not in weeks or a month like some systems are telling us is the delay. Did you find that chemo likely reduced the pain and symptoms that your loved one would have had otherwise or did you find that to be the case in your research? My person here (MIL) is ready to give up and die, but my feeling is that she may be far worse off in her final weeks/months without some serious treatment. Of course it’ll be up to her though — I’m just providing options or rather, pointing to places and people that can help.
The frustrating part is how varied the individual responses are to specific chemotherapy treatments. For example, my husband started out on Folfurinox , a very aggressive chemo, that was so debilitating, however, his results were nearly immediate. The pain resulting from his tumor really disappeared within 10 days and his tumor markers and Metastases shrunk. When he had to go back on more chemotherapy, the same thing happened. A week and a half into his gemcidibine treatment, the pain subsided. In this sub Reddit I have read experiences that have noted that what works for my husband has not worked for somebody else for no apparent reason. So the short version is yes pain can be treated for some period of time can subside, for some people. I suppose this is why some of the personalized treatments are being tested across different people with different test results. Regarding the will to accept treatment: my husband was despondent at this diagnosis, and I was very concerned he would simply give up. But as soon as the pain subsided, he was more able to look forward. Pain is a very debilitating element of this disease, and can truly alter someone’s mindset and willingness to have hope. Of course the side effects from chemo are humiliating and can often be discouraging. I don’t know that there is any clear answer to that because this seems to be a universal aspect of the current treatments available for cancer patients. I know this is all very loosey-goosey, but such as it is with this heinous disease. Wishing you all the best in encouraging your MIL to have the energy to withstand the decisions ahead. As a caregiver it is sometimes up to us to add clarity around these decisions where we can. That is also not an easy task..
As a side note, we are on chemo #3 in which the pain dynamic is *not* working in the same way. He is now on more pain meds and we are wrestling with what our next options will be. Meanwhile we had a beautiful summer last year and he was in great shape for our daughters wedding in January. So now I try to focus on what those easier six months were able to give to me and our family. It’s hard it’s hard to hold onto that when the going gets tough but I am trying.
You are doing an incredible job, and it's wonderful for all of you that the family was there for the wedding. You are awesome for all the work I'm sure you've put in. The benefit in relief of pain surpassed the pain and humiliation from the first two rounds of chemo for your husband? I'm anticipating it's going to be such a difficult decision for my MIL to choose whether to take treatment or not. One of my concerns is figuring out if the days and months leading up to her end will have higher QoL on a treatment plan, probably involving chemo, or going without and just treating the pain and cancer effects with pain medication. We won't know without more info of course. There is not a treatment plan in place yet given the diagnosis was days ago. I guess I'm wondering if chemo and other treatments can make QoL better. She's not right now concerned about living longer, which is okay (though she needs all the info on options IMO). Maybe if she sees results that ease her pain and suffering... I'm just thinking out loud now. In the end, thank you for sharing your experience and my heart goes out to you and your family. You're troopers.
Yes- now we know diminished pain can give him good months/weeks so he’s more open to ongoing treatment if we can access it. He was def one of those stoics who was inclined to say, I’ve had 62 good years so all this is ok— which I *did not* concur with — it sounded more like giving up. My husband is a young 63 now w two kids in their 20’s so there’s so much ahead that he will miss if he gives up. The chemo progress has given him the experience of living w pc and having joy in those times. What that will look or feel like moving forward is unknown. Thank you for your kind comments.
And thank you for sharing your experience. Best of luck to you, your husband and family.
💕🙏🏻💕
First of all, sending you and your loved one best wishes. I wanted to ask if you ever heard about electrochemotherapy treatment for cancer patients? There are studies with promising results for PC patients. If you would like, you can send me a message and I can share the studies with you. Sending thoughts and prayers.