IT IS MINI-TRANSPLANT DAY (aka Donor Lymphocyte Infusion)!!!
How I like to explain this infusion: There are two bad things going on right now. The bone marrow is broken so it makes bad white blood cells. So we are dealing with an evil army, and a broken factory that makes an evil army. The stem cell transplant in the past didn’t work to fix the broken factory, so now we’re taking a new strategy. Instead of doing all stem cells, we are extracting just the lymphocytes. These lymphocytes like the top notch seal team white blood cells. The one downside is that these fighters are so aggressive that sometimes they also fight other things like the liver and kidney and skin in the process. They’re not smart enough to always distinguish. Anyways, we are going to infuse the body with these aggressive good imported fighters, and they are going to attacked any leftover evil army, fix the broken, factory, and restore order to all!
A quick history: Since August 2013, we have done 7 rounds of chemo, 6 spinal taps with chemo, policy hacking to get blood samples sent from Vietnam, radiation, a stem cell transplant, kidney stone removal, and blood transfusions across 5 hospitals in 5 different cities. For a while, we celebrated while the Leukemia went a way and those bad guys disappeared. In February 2015, we found out they must have been hibernating because they came back in full force. We were told some dismal statistics, but healthcare data is super fuzzy (Precision Medicine is still the future) so we charged forward. Two more rounds of chemo later, another trip to America for my uncle to donate cells, and now we are ready to infuse them not my mom. Woo! We won’t focus on the fuzzy data around success rates, just the small victories that have allowed us to get to this point. As of today, she is strong, she is well, and ready for those new, good, lymphocyte white blood cells to go attack the bad, mutating cancer cells.
Since Mama Pham has responded well to the last two rounds of chemo (no Leukemia cells present!) we are clear to move on to the Donor Lymphocyte Infusion! Dates below:
July 6th, 2015: Awesome donor uncle gets labs (must be within 7 days of donation)
July 9th: 2015: Awesome donor uncle sits with an apheresis machine and donates lymphocytes
July 10th, 2015: My mom gets the lymphocytes and we being our journey of watching for Graft vs. Host Disease (GVHD) and hope for full remission forever and ever!
Last month, I attended the Stanford Big Data in Bioscience conference. My mom had labs and a possible transfusion during one of the conference days, so I conveniently dropped her off at the Stanford Cancer Center, parked in free patient parking, and walked around the corner to attend the conference on the university campus. One moment I was on the patient side, and a couple of blocks later, I was on the provider side, talking to physicians and clinicians as my peers in this quest to bring better care to patients and better decision making capabilities to doctors. Talk about integrating work and life into one!
During the conference break, I ran into the Asian American Donor Program students who were hold up a lovely sign that said “Will you marrow me?” If you have not yet, you can help save lives like Mama Pham’s by going to register at Be the Match! It is a very simple process of sending in saliva samples, and if you are lucky enough to be a donor, the donation process is pretty simple as well! It just involves some lab draws, a physical exam, and several hours on an apheresis machine!
Mama Pham’s biopsy came back clear! On April 1st, she started on the CALGB 9511 regiment for her relapsed T-Cell Acute Lymphoblastic Leukemia. This was a very aggressive regimen with asparaginase, and Mama Pham definitely had some tough days. This is her 8th round of chemo overall. None of the other chemotherapy regimens over the past 1.5 years have EVER brought her to full remission (Hyper CVAD, Nelarabine), and they did the Stem Cell Transplant last year with active Leukemia (not ideal). We are not fully in the clear because we still need to do a Donor Lymphocyte Infusion from my uncle, but this gives us a clear to charge forward and that we will! Many thanks to our amazing family of supporters and the doctors at City of Hope, UCI and Stanford for getting us to this next milestone. I am forever grateful.
We love UCI! My mom and I had our first consultation at the UCI Health Chao Comprehensive Cancer Center in Orange County. This is a continuation of my search for a local oncologist for my mom now that she is past her 100 days post-transplant. I would love for her to stay solely at City of Hope (COH), but the drive takes quite a toll on her. Plus, if there is a real emergency, it would be good to have a local hospital that has her records. Thankfully, the entire experience with UCI was fantastic. I am very excited to get to know the hospital and the team. I took the first flight out of San Jose on Monday morning and last flight out of Orange County to return back home. It was quite a flashback to my consulting days. This time, my business objective was: “Establish good local oncologist for Mama Pham.”
We originally picked St. Joseph’s as her local oncology office. After our initial 2 visits, I did not feel at ease leaving her under the care of St. Joseph’s Hospital so I did some more research, talked to some more people and setup an appointment at UCI. Several factors contributed to my decision to move her out of the St. Josephs of Orange County care system. I may write more about that in a different post. The entire experience at UCI was so refreshing. Below are several key points that made our visit great and set me at ease as I returned to San Jose:
- Complimentary valet with a great staff. This saves my mom from having to navigate a parking deck and is definitely a great perk for days when she feels particularly weak
- A friendly reception desk with very competent receptionists and schedulers
- An easy scheduling process. This is important because she requires many appointments, sometimes involving multiple departments and multiple doctors.
- On-time appointment even in the afternoon
- Great nurses
- Easy navigation of the building
- Most importantly, we loved our new oncologist. My mom was very happy; it is very important that she feels comfortable going to the hospital and seeing the doctor.
Each little battle won always feels great. Our battle this time was finding a good local oncology team to continue the great work of all the doctors from City of Hope, and be well-prepared if anything happens. Hooray for UCI!
Yesterday, Mama Pham had a very bad reaction to the Intrathecal Chemotherapy (IT) done at St. Joseph’s Hospital by Dr. Joseph Tison. She had two rounds of IT done in the past at City of Hope with little issues. This time, she had a painful sensation at the bottom of her spine that caused her to have body spasm for about two hours. Dr. Tison by once she developed the reactions, but said he did not know the cause and stated he had never seen that kind of reaction in the patient. He was unfamiliar with the chemotherapy drug (Methotrexate) that he injected in her. My mom had a similar tingling sensation in the past, but it only lasted about 10 minutes. The nurses and I triaged the situation and concluded that it probably was just an irritated nerve. We hypothesized that the liquid that was injected irritated a nerve and caused the tingling. This meant that as the liquid slowly dispersed through the Central Nervous System, the tingling and irritation would go away. After about two hours, the tingling did indeed go away and my mom was completely fine. I do not know for sure if the irritated nerve was the actual issue, but the series of events seem to lead to that. I was very thankful for good, knowledgeable, experienced nurses that day!
The next intrathecal chemo will happen about 4 – 6 weeks from now. We will have it done at City of Hope for continuity and quality of care.
Mama Pham’s 100 Days Post-Transplant Biopsy came back clear! There are no Leukemia cells present. She is currently cancer-free!
She has dropped to 92lbs and is still taking about 12-14 meds per day, but we are definitely one huge leap closer to full remission. She is not considered to be in full remission until the 2 year mark. 110 Days Down. 630 Days to go!
We are currently at a stable state of 0.5mg Sirolimus and 1mg Tacrolimus. These are both immunosuppressant drugs. Their doses are adjusted twice a week, after the Complete Blood Count lab work reveals the chemical make-up of Mama Pham’s body. Too much of these drugs can compromise the health of the body’s organs as well as suppress the immune system too much, preventing it from fighting lingering cancer cells and other infections. Not enough immunosuppressants can increase the risk of Graft vs. Host Disease (GVHD). The goal is to have the perfect amount each day to suppress the immune system enough to prevent GVHD, but still keep the body healthy and strong with the ability to fight the bad guys.
Today is Day 102 post-transplant. Mama Pham went to City of Hope for a bone marrow biopsy and picc line removal. We get the results of the biopsy in a few days. With the removal of the picc line, she no longer has to worry about infection from external devices! Showering will also be much easier. One step closer to a normal life!
Today is Day 100 post-transplant for Mama Pham! Just in time for Mother’s Day. Day 100 is the day when a patient can reduce the amount of doctor visits and lab work from twice a week to once a week. They can also start seeing their local oncologists. I will greatly miss the care from Dr. Salhotra and the City of Hope team. However, I seeing a doctor closer to home will help with Mama Pham’s spirits. She will still go to see Dr. Salhotra once a month at City of Hope in Duarte, CA. Her weekly visits, however, will be locally with Dr. Mummaneni at St. Joseph’s in Orange County.
Hooray for Day 100! Her taste buds have not returned, she is still on a neutropenic diet and is still week, but is definitely in a much better state than Day 0!