Why wait for Chemo???????
My husband had the Whipple done in December 2023 with a follow up of chemo for 8 mos. He's stage 3. His CT/PET scans have been good; even a NED. Last PET scan in July showed a reoccurrence of a slow growing nodule 1 cm and some lymph nodes too. It is inoperable because of the location. He feels GREAT. Has been gaining his weight back and has a lot of energy, He looks great too! My problem is they (VA) are waiting to start chemo again until he is sick??? That seems weird to me???? I have to say, they sent blood somewhere to get a better idea of the type of chemo to use. We got a second opinion and this doc also agreed. We are eat up with anxiety hoping the cancer doesn't invade other organs while we wait. (Terrible way to live) I'm sure we aren't alone on this?
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It’s understandable that a blood test would be done to determine if gene mutations exist so that the treatment could be better matched to his specific case. However, that should have been done when he was first diagnosed!
You might use this time for a second opinion.
Thank you for sharing your experience with your husband's health. About six months ago, during a CAT scan, doctors discovered that my pancreatic bile duct was dilated. Subsequent MRI and EUS did not show anything concerning, but a repeat MRI four months later confirmed the initial finding. I have an upcoming appointment with Dr. Andrews at Virginia Mason and I am feeling very anxious, to the point where I am having trouble sleeping and eating. I originally sought medical help for digestive issues like excess gas and regurgitation. I am grateful for the support and prayers, and I continually pray for my outcome. I will now add your husband to my prayers. I pray that both your husband and I will overcome our challenges and share a testimony of how good God in spite of our trials and challenges.
Thank you...I will also add you to my prayers!
@howleegirl , this does not sound like a confidence-inspiring plan to me.
Are they testing his CA19-9 levels frequently?
Did they start with germline mutation testing (like Invitae), and then create and follow through with a ctDNA test like Signatera and other next-gen sequencing (like Tempus) of the Whipple tissue?
Was the additional opinion at an NCI designated center of excellence or a National Pancreas Foundation recommended comprehensive cancer center? If not, then consider arranging a consult at one of those large, high volume centers.
When you mention blood was sent out to determine the types of chemo to use, that is a bit confusing. There is a chemo sensitivity testing procedure where tumor cells are sent to a special lab that can grow 3-D tumors in tissue culture called organoids. Multiple chemo agents are tested on the organoids to determine the degree of sensitivity or resistance of each.
Other blood tests sent out could be for a liquid biopsy to determine germline (inherited) mutations. These are mutations acquired at birth and found in every cell. It can also detect some somatic mutations but the preferred method for somatic mutations is sending surgical biopsy specimens to a sequencing reference lab and doing Next Generation Sequencing. Another blood test is the Signatera ctDNA test by the company Natera that is used to detect recurrence at an earlier time point than what is capable by conventional imaging using PET, CT and MRI. It is unlikely the VA would have used this test as it is not yet standard of care and more often used in the large nationally recognized high volume pancreas centers.
During my treatment for pancreatic cancer, I knew using standard of care protocols was was only going to provide standard results. Even before I was told I progressed to stage IV, I was ahead of the curve and early on started a search for other treatment methods such as ablation using RF or IRE and clinical trials using targeted therapies, immunotherapies or small molecule drugs. Once the results of genetic testing were completed, a mutation was found that was targetable. That piece of knowledge was the key to finding a clinical trial. It was a contributing factor in my surpassing 12 years since the Whipple and surviving stage IV disease.
The patient must self advocate and be respectfully assertive in getting better treatment. Go through the medical records and find out exactly what tests were done. There should be both germline and somatic testing done. If pathogenic mutations or actionable biomarkers were detected, contact the Pancreatic Cancer Action Network (#PanCAN.org) at 877.272.6226, M-F, 7:00am-5:00pm PT. They will initiate a free clinical trial search. If NGS testing on the primary tumor was not done, they offer a free NGS testing program to do that. If no mutations or biomarkers are found, then the search will focus on small molecule drugs which is the most rapidly growing area of cancer clinical trials.
My sense, even as a non medical pro, is that chemo should be continued for as long as possible.
Just my opinion ... if your husband has insurance (Medicare) why would he be at a VA center? He needs, as has been mentioned, to be at a "pancreatic cancer center of excellence." You should move to be near one. Just my opinion.