Editor’s Note: Today on the blog, caretaker Ulhas Subramaniam shares what he found most important and helpful during his mother’s journey to pancreatic cancer. Keep in mind that Ulhas no Action Network for Pancreatic Cancer (PanCAN) neither an employee nor a medical professional. PanCAN’s Patient Services can provide more information on each of the topics discussed here, along with support resources.
My mother started lose weight over the course of a year, from 135 pounds to 120 pounds. We were concerned, but not overly concerned, as she was still active and eating well.
Months followed to test and procedures, with doctors’ suspicions chronic pancreatitis. My mother’s cancer went unnoticed until she was hospitalized and a CT-scan confirmed tumors in her peritoneum (abdominal wall) and a mass in her pancreas.
It was phase IV pancreatic ductal adenocarcinoma (the most common form of pancreatic cancer).
We had to learn along the way, with the help of wonderful friends, family, charities and organizations such as PanCAN who helped us right direction.
That’s why I’ve compiled a list of steps designed to help families navigate options and talk to caregivers when faced with a diagnosis of pancreatic cancer:
- See if your lover can have it surgery to remove the tumor
- Make sure biopsies are analyzed biomarkers that might help find available treatments
- Ask the oncologist for one genetic test
- Please contact PanCAN
- Concentrate on diet, and meet nutritionists as soon as possible
- Make an appointment with the oncologist to discuss treatment options, and acknowledge that chemotherapy can be recommended to start with
- Get a second opinion of a pancreatic cancer specialisteven if they are far away (it’s not difficult to get a second opinion as making appointments with other cancer centers can be as easy as calling them)
- Stay on top side effects and continue to explore nutrition, treatment options and other care needs
PanCAN’s patient services can help you navigate all of these steps and provide support and information throughout your journey.
My mom’s treatment journey
In my mother’s case, as one phase IV A patient whose cancer had already spread at the time of diagnosis was not eligible for tumor removal surgery. She wanted biomarker testing, but the tissue sample taken during the biopsy was of poor quality. We asked for a liquid biopsy instead, which involved analyzing a blood sample. Unfortunately, no biomarkers have been found that would help in finding treatments. Therefore, it was recommended that she start chemotherapy as soon as possible.
We considered having her come to the Bay Area of California from her home in Maryland to begin chemotherapy. My brother’s and mine’s family both lived in the Bay Area, and we were all convinced that being with her children and grandchildren, one of whom she had never met thanks to COVID, would be immensely motivating for my mother. In the midst of her weakened state and the COVID-19 pandemic, but the logistics of travel was difficult to bear. We decided to start treatment in Maryland as soon as possible to give her the best chance of feeling better, while constantly monitoring that care is transferred when possible.
Fortunately, two chemotherapy treatments in Maryland helped reduce my mother’s peritoneal tumors, while keeping her pancreas mass stable, giving her extra energy. During her third round of chemo, we were able to find safe options to travel through wonderful organizations that help get cancer patients across the country to treatment.
Bringing our family together in one location to support my mother through the pandemic and give her the chance to meet her grandson for the first time meant a lot to all of us.
We keep clinical trials focused on new treatment methods in our back pocket to respond quickly if her chemotherapy is ever ineffective. With luck, my mother’s cancer will continue to respond to chemotherapy or new clinical trials.
PanCAN’s patient services is completely free and has a number of resources to help navigate treatment options and more. Start by asking for their diet and nutrition booklet, as your loved one’s diet will likely have to change significantly as they battle the disease. If you have the results of the tumor sequencing or genetic testing, you should share the results with your dedicated PanCAN case manager so they can help with the list of clinical trials your loved one may qualify for.
Keeping my mom strong through diet and nutrition
All this time, nutrition has been a major concern for us. We had special concerns about my mother’s diet, as did our family vegetarian and usually eat an Indian diet. Many cancer patient nutrition books focus on Western recipes, and many nutritionists may not be familiar with uniquely Indian foods.
So we nutritionists asked many questions to get to the heart of the recommendations (e.g. use easily digestible and healthy oils, avoid fats, boost calories in every meal, etc.) and internalized guidance from sources such as PanCAN’s diet and nutrition booklet (you can please contact PanCAN to get a free copy).
After that, we could make our own plan with my mom: switch to healthy monounsaturated or polyunsaturated oils in our Indian cuisine, include protein shakes, and add high-calorie ingredients to her food so that even if she ate just a little, every bite had extra. calories. We also started making more Western foods at home, such as boiled eggs, whole grain spaghetti with homemade garlic-less marinara and polenta. She enjoyed this new food.
Except for the food itself, as my mother was ultra sensitive to cooking smells, be it Indian or Western nauseous, we also made a concerted effort to only cook family meals in the mornings when she was better able to tolerate odors, and we placed air purifiers throughout the house to remove cooking smells.
At her diagnosis in October, she was eating fewer than 900 calories a day, but now she is taking in about 1500-1600 calories – and hopefully more and more with time.
Fortunately, my mother’s energy and strength are improving. We will continue to support her in this, and I hope that by telling our story I will help other families who are in a similar situation.
All treatments, including clinical trials, mentioned in this story may not be appropriate or available for all patients. Doctors take many things into account when prescribing treatments, including the stage and type of cancer and the patient’s overall health.