Neupogen is a drug used to stimulate the development of white blood cells (WBC). Chemotherapy patients are often given this shot in the stomach to help the WBCs regenerate. Although that sounds peachy, I always have been a bit skeptical about using a drug to mess with the chemotherapy and artificially cause the bone morrow to produce more white blood cells. However, when doctors tell you that you need it because the WBC count is so low that deadly infections can happen, you agree. However, a few days into it, I realized a few items:
- Not all doctors prescribe Neupogen. When I pushed back on Neupogen, eventually some doctors indicated it was optional, which leads me to the wonder why doctors just give patients such a strong shot without really discussing it in the first place. Giving hospital inpatients drugs without really discussing impact and need is another issue.
- When a nurse found out we had a biopsy scheduled in a few days, she told us to stop Neupogen immediately because it can cause an artificial count of cancer cells (blasts). No one mentioned this previously, but all the Nurse Practitioners and Physicians Assistants at Stanford agreed that we should stop Neupogen several days prior to a bone marrow biopsy.
I know that Neuopgen is prescribed so neutropenic (low white blood cell) patients do not get sick. However, it is always critical to know why it is given, and if it makes sense My continued lesson here is that the need to have patient advocate or be your own patient advocate is so high. Nurses and doctors, no matter now brilliant, do not always have the full picture of each individual’s treatment plan, so we need to tell them.
Today, Mama Pham was admitted to Stanford Hospital’s F Pavilion to start CALGB 9511 with asparaginase, a more aggressive chemotherapy regimen than she has had in the past (Hyper CVAD, Nelarabine). If she responds well, the next step is Donor Lymphocyte Infusion. Her brother will be asked to come back to the U.S. So far, she has had the following:
- Lumbar Puncture with methotrexate. The resident and fellow both tried to do her initial LP, poking her a few times, unsuccessfully. The Nurse Practitioner tried again the next day had much better success. Lesson learned: Nurse Practitioners rock!
- Three doses of chemo: Vincristine, Daunorubicin, Cytoxan.
- CT Scan of the Lungs to use as a baseline
- Chair Yoga
- Art Class
- Several great nurses
My brother and I making sure Mama Pham was included at the First Lady’s Reception.
The State Dining Room, The White House, January 20th, 2015
This is the current state of healthcare interoperability. I wrote my mom’s medical chronology to our new oncologist. The medical release form for City of Hope got lost somewhere so Stanford still does not have her records from City of Hope. The records sent from UCI were not as comprehensive as they need. I was told by the nurse that they don’t have any records they can use. Also, a pile of faxed records is oftentimes too difficult to consume that it’s easier for me to just tell new medical teams what happened. This is not ok. Not everyone has a patient advocate. There needs to be a better way for busy, brilliant doctors to consume large amounts of patient healthcare data. This is why I care so much about healthcare data interoperability.
Made my mom a food cheat sheet today for foods that are iron-rich and have high anti-cancer, anti-inflammatory traits.
Om Nom Nom!
Today was Bone Marrow Biopsy Day. The biopsy was performed by a nurse practitioner named Rhonda. She was the best biopsy experience that my mom has ever had. Thanks Rhonda!
My mom’s hemoglobin counts dropped to 7.9, she she got two units of blood. I told her that Lance Armstrong would WILLINGLY get transfusions. So it’s a good thing. Not that she’s trying to enhance her performance to ride up any mountains anytime soon yet. We’re just trying to make it one mile down the street. 🙂
We visited the Stanford Cancer Institute today. More details to come soon. It is definitely interesting to witness how different hospitals operate when it comes to medicine, facilities, records coordination, parking, communication, electronic records, and many other areas. This is our own personal ethnographic study of healthcare interoperability!
On February 11th, 2015, we found out that my mom has relapsed. This means we are back fighting, stronger than ever. First round of chemo done. We will meet our new Acute Lymphoblastic Leukemia doctor at Stanford next Thursday to discuss the future plan of action. This be will our fifth hospital during this battle. So far, in the past 1.5 years, she has had a total of 5 rounds of chemotherapy, radiation, a stem cell transplant, and six rounds of CNS prophylaxis (chemo in the spine). She is one of the toughest women I know. The following is the list of our hospitals and doctors. We had to do some searching to find the right oncologists for us, but the talented and compassionate oncologists who we have worked with so far have been amazing with communication and discussion of treatment options.
- St. Joseph in Savannah, Georgia: Dr. Grant Lewis. First diagnosis in August 2013. First round of chemo.
- City of Hope in Duarte, California: Dr. Amandeep Salhotra. Three more rounds of chemo, radiation, and a stem cell transplant.
- St. Joseph in Orange, California: Moved on after two visits because of the poor quality of care.
- Chao Family Comprehensive Cancer Center at UCI in Irvine, California: Dr. Deepa Jeyakumar. Follow-up visits closer to home after stem cell transplant.
- Stanford Cancer Institute in Palo Alto, CA: Cancer center that is closer to me!
On the bright side, this has been a quite the opportunity to do ethnographic research of healthcare data interoperability between hospitals of the private sector!
2/12/2015: Admission to UCI Hospital for difficulty breathing. Endotracheal tube inserted to help with breathing
2/14/2015: First dose of Nelarabine chemotherapy
2/16/2015: Second dose of Nelarabine chemotherapy
2/17/2015: Exubation. The breathing tube was removed from her throat.
2/18/2015: Third dose of Nelarabine chemotherapy
Mama Pham is a trooper!
For the past few days, my mom’s trachea has been so swollen that when they deflated the balloon on the ET tube, no air would come through. Today, they were finally able to see some signs of air coming through! This means that the swelling as subsided and hopefully they can extubate her soon!