First chemo tomorrow--tips, suggestions, cautions?

My palliative staff put me on round the clock meds for nausea-starting the morning before treatment started. He had me alternate Zofran and Phenergan every 4 hours. I set my alarm at night and took the meds around the clock for the first 3-4 days. It really helped make the chemo tolerable.

Also-if your appetite drops, I found Fairlife PROTEIN drinks much more tolerable than Ensure and the other options out there.

Finally--don't get worked up about all the side effects listed. Everyone is different and you may not experience the same as others. Chemo sucks, but you seem positive and your overall health is otherwise good so you may do just fine. 🙂

My side effects were pretty tolerable and I credit getting twice a week acupuncture as well as other meds. Less fatigue and less nausea than expected and almost no neuropathy either during treatment or after treatment. My oncologist and his nurse were very supportive of the acupuncture as there is ample evidence to support its benefit during chemo. I also worked with a naturopath for supplements, cleared through my oncologist, that I also think really helped minimize my side effects. Compazine worked the best for nausea. I did not use cryotherapy. Hope this is helpful. Beth

I forgot to mention that my oncologist absolutely recommended against icing. We had done some research and were going to try it in an effort to ward off cold neuropathy in my mouth and throat. He said it was a "horrible idea." His reasoning was, first, that the studies were not properly conducted and were conducted on patients who were not PC patients. He said they were really more anecdotal than scientifically based. As a result, he said given how painful icing can be, it wasn't worth trying to avoid the neuropathy. He said it would rectify itself with 2-3-5 days (his description). I hope that's true. I drink a lot more when the fluid is cold(er).

I admire your courage. Hope you continue to manage well with your side effects.

Often times change comes about through patient observation and advocacy. Many professional and governmental organizations involved in patient healthcare such as the US FDA, ASCO ( American Society of Clinical Oncology), ECOG-ACRIN (Eastern Comprehensive Oncology Group-American College of Radiology and Imagining Network), HOPA (Hematolgy/Oncology Pharmacist Association) have added patient advocates to committees and working groups to better address the needs of patients. I’m involved as a patient advocate in the above listed groups and work closely with oncologists and surgeons of those professional organizations. In one of those groups I serve on the GI cancers committee involved with designing and modifying and reviewing clinical trials.

With respect to the comments made by your oncologist, it is not the type of cancer in question…it is about a chemo agent that is neurotoxic to peripheral nerves. Oxaliplatin is one such neurotoxic agent causing debilitating and often permanent neuropathy. I doubt very much that your oncologist endured treatment containing a neurotoxic agent that affects peripheral nerves. I have and it is not a pleasant experience.

As an 11 year survivor, my diagnosis and treatment started in 2012. There was no anecdotal accounts of chilling extremities at that time that I recall. Otherwise having come from a professional career in cancer and immunology research, I would have been receptive to trying the technique with the first cycle of Folfirinox. I understand the theory and mechanism of the technique. Although I finished my standard of care chemo regimen nearly 9 years ago, I go back once or twice a year to visit my first oncologist. I recently brought up the discussion on his opinion of the technique and whether he allows his patients to use it if it was requested. He had no issues with a patient wanting to try the technique. Next week I will be at the semi-annual meeting of ECOG-ACRIN and will bring up the question about the use of icing of extremities to reduce or eliminate sequelae as a result of chemotherapy with oxaliplatin and other agents known to damage peripheral nerves. The GI Cancers Committee consists of several noted pancreatic cancer oncologists so it will be a good opportunity to ask this question and note feedback.

I am also a firm believer in the use of obtaining second opinions. When I get a response that doesn’t sound quite right or outright questionable, I’ll seek multiple opinions. And I have done so throughout my 11 years of treatment and routine surveillance. I love my oncologists but I am not married to any of them. If got a response I wasn’t happy with and there were differing opinions, I gathered information through multiple consults to make an informed decision. And sometimes it didn’t agree with the first oncologist. I wasn’t afraid to stand my ground and justify my point of view. Patient self-advocacy is extremely important in dealing with catastrophic illnesses. The tumor board where I was initially treated put me on palliative care right from the start because I was restaged as IV one week after my Whipple surgery. That’s when I spoke up. I was then given very aggressive chemotherapy and while no one believed a cure by chemo was possible, I proved them wrong. What I look for in a physician is being able to “think outside the box. Someone who is open-minded and can adapt treatment to the situation being encountered. Not only did I achieve NED status back in 2014, but have been told by numerous pancreatic oncologists and surgical oncologists they consider me cured by Folfirinox.
https://www.uspharmacist.com/article/ice-chips-prevent-hyperalgesia-with-oxaliplatin
https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.15_suppl.e16140
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7810270/

The trend in my ctDNA results has been consistent in not showing the presence of tumor material since achieving NED status. ctDNA was measured on day one of the trial and quarterly from then one. When the trial ended in 2016, because it was determined I had a confirmed complete response, the principal investigator of the trial wrote an Individual Patient Investigational New Drug Protocol that was submitted to and approved by the FDA to continue receiving the medication under the compassionate use provision as maintenance monotherapy. I am still on the medication over 8.5 years now and still receive quarterly ctDNA and twice yearly scans predominately being in the form of MRI’s. The scientific paper that resulted from the clinical trial states Foundation One was the reference laboratory used.

In April 2022 I was attending the ECOG-ACRIN (Eastern Comprehensive Oncology Group-Academy of Clinical Radiology and Imaging Network meeting [https://ecog-acrin.org/about-us/]). I am a research patient advocate member of its GI Cancers Committee. I was listening to a presentation on using ctDNA and showing data of a cohort of patients being surveilled over a long period of time. At the end of the presentation I introduced myself to the presenter as his last two slides of acknowledgments mentioned the institution where it was done at was where I participated in the trial and it also acknowledged my oncologist being involved in the study. I got it confirmed the samples I was contributing to the bio bank for research purposes were used in the study.

ctDNA has been around for years. It first came into use for a better and faster way to monitor minimal residual disease (MRD) in the blood cancers leukemia and lymphoma. The technical issues were worked out through its development and improvement to where it is used as standard practice for long-term monitoring of patient status. It was only recently introduced for solid tumor monitoring where there was a set of different technical challenges to overcome.

Colon cancer being more prevalent that other solid tumors was where the research was focused initially. A working committee at ASCO (American Society of Clinical Oncology) was established to evaluate studies leading to increasing the reliability (sensitivity and specificity) of the test. Eventually the goals were met and it received endorsement to be a part of monitoring for the early detection of reoccurrence of colon cancer.

ctDNA is being evaluated for other solid tumor types including pancreatic cancer. Researchers are working on improving the sensitivity and specificity for other solid tumors as was done for colon cancer. It is already shown to detect progression much earlier than a PET scan, CT or MRI imaging systems. While false negative and positives may occur, ctDNA is not being solely relied upon for surveillance. That is still be conventional imaging or PET scan. CT and PET involve exposure to forms of radiation. MRI involves considerably more time and is not adequate to image lungs. A CT scan is needed for lung imaging.

With respect to the use of oxaliplatin in Folfirinox, most people experience some thinning of hair on scalp and body. That was my experience with it. The rate of tumor shrinkage was significantly enhanced then when I was on “resting cycles” of 5-FU with Leucovorin.

The trend in my ctDNA results has been consistent in not showing the presence of tumor material since achieving NED status. ctDNA was measured on day one of the trial and quarterly from then one. When the trial ended in 2016, because it was determined I had a confirmed complete response, the principal investigator of the trial wrote an Individual Patient Investigational New Drug Protocol that was submitted to and approved by the FDA to continue receiving the medication under the compassionate use provision as maintenance monotherapy. I am still on the medication over 8.5 years now and still receive quarterly ctDNA and twice yearly scans predominately being in the form of MRI’s. The scientific paper that resulted from the clinical trial states Foundation One was the reference laboratory used.

In April 2022 I was attending the ECOG-ACRIN (Eastern Comprehensive Oncology Group-Academy of Clinical Radiology and Imaging Network meeting [https://ecog-acrin.org/about-us/]). I am a research patient advocate member of its GI Cancers Committee. I was listening to a presentation on using ctDNA and showing data of a cohort of patients being surveilled over a long period of time. At the end of the presentation I introduced myself to the presenter as his last two slides of acknowledgments mentioned the institution where it was done at was where I participated in the trial and it also acknowledged my oncologist being involved in the study. I got it confirmed the samples I was contributing to the bio bank for research purposes were used in the study.

ctDNA has been around for years. It first came into use for a better and faster way to monitor minimal residual disease (MRD) in the blood cancers leukemia and lymphoma. The technical issues were worked out through its development and improvement to where it is used as standard practice for long-term monitoring of patient status. It was only recently introduced for solid tumor monitoring where there was a set of different technical challenges to overcome.

Colon cancer being more prevalent that other solid tumors was where the research was focused initially. A working committee at ASCO (American Society of Clinical Oncology) was established to evaluate studies leading to increasing the reliability (sensitivity and specificity) of the test. Eventually the goals were met and it received endorsement to be a part of monitoring for the early detection of reoccurrence of colon cancer.

ctDNA is being evaluated for other solid tumor types including pancreatic cancer. Researchers are working on improving the sensitivity and specificity for other solid tumors as was done for colon cancer. It is already shown to detect progression much earlier than a PET scan, CT or MRI imaging systems. While false negative and positives may occur, ctDNA is not being solely relied upon for surveillance. That is still be conventional imaging or PET scan. CT and PET involve exposure to forms of radiation. MRI involves considerably more time and is not adequate to image lungs. A CT scan is needed for lung imaging.

With respect to the use of oxaliplatin in Folfirinox, most people experience some thinning of hair on scalp and body. That was my experience with it. The rate of tumor shrinkage was significantly enhanced then when I was on “resting cycles” of 5-FU with Leucovorin.

Often times change comes about through patient observation and advocacy. Many professional and governmental organizations involved in patient healthcare such as the US FDA, ASCO ( American Society of Clinical Oncology), ECOG-ACRIN (Eastern Comprehensive Oncology Group-American College of Radiology and Imagining Network), HOPA (Hematolgy/Oncology Pharmacist Association) have added patient advocates to committees and working groups to better address the needs of patients. I’m involved as a patient advocate in the above listed groups and work closely with oncologists and surgeons of those professional organizations. In one of those groups I serve on the GI cancers committee involved with designing and modifying and reviewing clinical trials.

With respect to the comments made by your oncologist, it is not the type of cancer in question…it is about a chemo agent that is neurotoxic to peripheral nerves. Oxaliplatin is one such neurotoxic agent causing debilitating and often permanent neuropathy. I doubt very much that your oncologist endured treatment containing a neurotoxic agent that affects peripheral nerves. I have and it is not a pleasant experience.

As an 11 year survivor, my diagnosis and treatment started in 2012. There was no anecdotal accounts of chilling extremities at that time that I recall. Otherwise having come from a professional career in cancer and immunology research, I would have been receptive to trying the technique with the first cycle of Folfirinox. I understand the theory and mechanism of the technique. Although I finished my standard of care chemo regimen nearly 9 years ago, I go back once or twice a year to visit my first oncologist. I recently brought up the discussion on his opinion of the technique and whether he allows his patients to use it if it was requested. He had no issues with a patient wanting to try the technique. Next week I will be at the semi-annual meeting of ECOG-ACRIN and will bring up the question about the use of icing of extremities to reduce or eliminate sequelae as a result of chemotherapy with oxaliplatin and other agents known to damage peripheral nerves. The GI Cancers Committee consists of several noted pancreatic cancer oncologists so it will be a good opportunity to ask this question and note feedback.

I am also a firm believer in the use of obtaining second opinions. When I get a response that doesn’t sound quite right or outright questionable, I’ll seek multiple opinions. And I have done so throughout my 11 years of treatment and routine surveillance. I love my oncologists but I am not married to any of them. If got a response I wasn’t happy with and there were differing opinions, I gathered information through multiple consults to make an informed decision. And sometimes it didn’t agree with the first oncologist. I wasn’t afraid to stand my ground and justify my point of view. Patient self-advocacy is extremely important in dealing with catastrophic illnesses. The tumor board where I was initially treated put me on palliative care right from the start because I was restaged as IV one week after my Whipple surgery. That’s when I spoke up. I was then given very aggressive chemotherapy and while no one believed a cure by chemo was possible, I proved them wrong. What I look for in a physician is being able to “think outside the box. Someone who is open-minded and can adapt treatment to the situation being encountered. Not only did I achieve NED status back in 2014, but have been told by numerous pancreatic oncologists and surgical oncologists they consider me cured by Folfirinox.
https://www.uspharmacist.com/article/ice-chips-prevent-hyperalgesia-with-oxaliplatin
https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.15_suppl.e16140
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7810270/