Some days, the acts of kindness of strangers is overwhelming. Many thanks to Cheryl, a physical therapist across the country, who sent my mom a personalized Physical Therapy package in the mail after learning about the weakness and weight loss she has experienced after the last round of chemotherapy and Donor Lymphocyte Infusion.
Up until February of this year, my mom has started to gain weight, slowly returning to normal. Then we heard news of the relapse. That was when we went through three more rounds of chemotherapy, and a Donor Lymphocyte Infusion. All caused various side effects that made it harder to eat including nausea, throat constriction, mouth sores, and loss of taste. Then she had really bad swelling of the feet, which made it difficult to walk and exercise. The combination of both resulted in a greater loss in weight, bringing her down to 82lbs. In February, she had slowly climbed back up to 94lbs, which was a great accomplishment! Before cancer, she was 125lbs and very active. We will slowly get there again, especially with help from people like Cheryl!
Well, we knew this was coming, but had no idea how bad or good it would get. When my mom got her stem cell transplant last January 2014, she showed zero signs of graft vs. host disease. That was great because she didn’t have the crazy symptoms, but some doctors believe the lack of GVHD could have meant that the stem cells were not doing that much fighting. What is GVHD, you ask? It is when the new cells attack the body (the host). My uncle’s healthy white blood cells, in the process of fighting the Leukemia, also attacks the skin, the digestive tract, the mouth, and potentially other organs. Her current symptoms:
- Dry, crusty eyes. In the evenings, her eyes start getting very crusty. By the morning, it is difficult to open her eyes. We are trying Refresh Tears to help lubricate her eyes and lessen irriration
- Skin Rashes. Most of her upper body is covered in rashes. We have found fresh aloe to help with this. We have three Aloe Vera plants out front! Horray!
- Dry mouth and throat. No matter how much water she drinks, her mouth and throat feels dry. This is definitely an attack of the mouth. We have tried salt washes and coconut oil but nothing works. Today, the doctor subscribed a dexamethasone mouth wash to help with the irritation and inflammation.
We want some GVHD to happen to show that the infused cells are working (doesn’t seem very scientific, I know). We do not have any real way to show that the donor infused lymphocyte worked. All we can test for is if it does NOT work and we start seeing Leukemia cells again. So for now, to manage the symptoms in the body, we are doing the following:
- artificial tears
- dexamethasone mouth wash
- aloe on the skin
- keeping my mom busy walks, dinner parties, and excuses to make food!
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!
Today is biopsy day! This is the biopsy after 7 rounds of chemotherapy and a bone marrow transplant (January 2014). The results of this biopsy will determine if we move forward with the Donor Lymphocyte Infusion (DLI). If still in remission, then proceed with DLI. If not, then must discuss other, more difficult, conversations.
While driving to the hospital with my mom, listening to stories of her early years in Vietnam, and later working remotely from the hospital waiting room, I felt a wave of gratitude and joy for the ability to be with my mom and advocate for her and others during this time.
Today is the last day of Chemotherapy #7! Mama Pham got a dose of Vincristine in about 10 minutes and is free to go home to await the blood count recovery process. When we started this journey in August 2013, I met people who were on their 6th or 7th round of chemo and thought that just seemed so far away. It seemed so exhausting, so extensive. Now, one and ten months later, time has flown and sometimes I cannot believe all the things that my mom’s body has endured. She is the strongest 85lb woman I know.
Over the past almost two years, we went from one procedure to another, one round of chemo to another, one blood draw to another, and slowly just walked our road to beating cancer. Each day was another day of hope, hope that the next blood count wouldn’t yield any blasts (Leukemia cells) in the blood stream, hope that we will be in remission forever. Hope sustains us and keeps us charging forward.
Even though the biopsy results are clear, the Blood and Marrow Transplant (BMT) doctor at Stanford wants to do one more round of chemotherapy for a deeper remission before going into an Donor Lymphocyte Infusion (DLI). The regimen:
Intrathecal MTX on day 1
Cyclophosphamide infusion on day 1
Cytarabine days 1-4 and 8-11
Vincristine days 15 and 22
PEG asparaginase day 15
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.
Blood transfusions are a norm for cancer patients. From my experiences, two nurses must double check the blood type before a transfusion occurs. For fun, below is are two blood type charts from the American Red Cross and aabb.org.