Donor Lymphocyte Infusion Day!

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.

Donor Lymphocyte Infusion Planned!

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 lymphocytesJuly 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!

Will You Marrow Me?

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!IMG_6146

Biopsy Results are Clear after Chemo!

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.BiopsyClear

UCI Health Chao Comprehensive Cancer Center

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!

Intrathecal Chemotherapy Side Effects

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.

Biopsy results! No evidence of Leukemia!

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!Cancerfree

Immunosuppressant: Sirolimus and Tacrolimus

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.

Happy Day 100!

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!

Quiet, Uneventful

Things have been a bit quiet and uneventful the past week, which is awesome. My mom had regular, twice weekly check-ups at City of Hope and everything looks good. Her complete blood count is acceptable and she feels well. She is still underweight and not eating as she should, but that will slowly get better over time. Here's to more quite, uneventful periods. No infections, no nausea, no danger.

Bone Marrow Biopsy is CANCER FREE!

Today is Day 35 post transplant.  My mom had a bone marrow biopsy done on Monday, Day 32 post transplant.  The results CAME BACK CLEAR.  For first time in a long time, Mama Pham's blood and bone marrow are CANCER-FREE!Dr. Salhotra performed a spinal tap and CNS prophylaxis (chemo into the spine) today.  We will find out in a few days if any cancer cells infiltrated into the Central Nervous System.  If there are cancer cells there, then the CNS prophylaxis must be done with aggression.  If there are no cancer cells, then we can be done ever 4-6 weeks for prevention.  Not fun, but not as bad as having to actually treat active Leukemia in the CNS!For now, we fill revel in the glory that the bone marrow and blood are cancer free!

Discharge Day! Day 26 of Transplant!

My mom was discharged from City of Hope on February 25th, 2014 after 26 days since the transplant.  Many people stay longer but the team of doctors decided she is a rockstar and ready to go home.  She still has pneumonia in both lungs, liquid around the lungs, swollen feet (the tissues retain too much water), pain in the abdomen and several other issues, but her white blood cell counts are up and she has been able to eat oatmeal instead of just live off of TPN so she is going home and will coming back 2-3 times a week for out-patient visits.  I initially felt quite apprehensive about her release since she seemed so evidently sick, but she has more comforts at home and has already been able to hold down more solid foods like chao!We had our first outpatient visit back at City of Hope yesterday.  She had some blood work and saw the Nurse Practitioner since her oncologist was out of town.  WBC up to 7, Red Blood cells at 11 (wooo!), and Platelets down a little to 86.  When platelets are down, she bleeds really easily.  Platelets are part of the blood that help the blood clot and thus helps with healing wounds.  The other numbers look great!  Most of the white blood cells are neutrophils, which is great news!In the near future, we still need to try to get rid of the stubborn pneumonia, get the stent taken out, blast out the kidney stones (probably caused from chemo) and figure out treatments for her swollen feet so she doesn't trip so easily when she walks.  A long road ahead, but the road is looking a little more paved at this point.

Day 16! Cancer Free Peripheral Blood! WBC Count of 3.0!

Much has happened in the last 16 days!  As you may recall from a previous post, the stem cell transplant day is Day Zero.  We are now on Day 16.  The first two weeks are the hardest part of any stem cell transplant.  The patient feels all the side effects of the radiation and chemotherapy from the previous week and the body has to deal with having 8.7 million new cells from another person's body.  Here's now I like to compare it to a wartime scenario:  The original fort (the body) is almost completely annihilated with different types of poison (radiation and chemo in this case) leaving just enough infrastructure so that the fort can be rebuilt.  Once it is deemed that enough of the enemy has been eradicated, a completely new army (enemy/cancer free) is sent in to rebuild.  The fort is still reeling from all the damage, and the army still has not adjusted so the first two weeks is quite rough.  Hopefully, soon, all the damage slowly starts to heel, the army gets acclimated and everything works in full force to rebuilt the fort again.  During that time, we just hope that no other enemy comes in to attack since neither the fort nor the army are ready for battle!During the past two weeks, unfortunately, my mom's defenseless body has had to fight some infections.  She has had bronchitis in both lungs, swollen intestines and many mouth and throat sores from the radiation and chemotherapy.  The hospital has kept those infections under control by varying different anti-fungal and antibacterial medications. She has been put on oxygen several times to help her breathing.  She was also put on Total Parenteral Nutrition (TPN), which is food through the IV since she has been unable to eat.  She has been hanging in there.Yesterday, we heard great news.  Her peripheral blood is completely cancer free and her WBC is up to 3.0!  We still need to wait on bone marrow biopsy to see if my uncle's stem cells have grafted and if the bone marrow is cancer free.  She has always had disease in the bone marrow and not just the peripheral blood.  But this news is great news so far.  There is still much ahead, but this is fantastic news at this point.  Next week, we will have more scans to figure out the source of some of her infections, have a bone marrow biopsy done at one point and hopefully get her eating real food again. :)Here are some references from medical resources that have some nice summaries about stem cell transplants and the donation process:http://medicine.utah.edu/internalmedicine/hematology/bloodMarrow/collection.htmhttp://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/bonemarrowandperipheralbloodstemcelltransplant/stem-cell-transplant-transplant-process

Graft vs. Host Disease - The Happy Number of Stem Cells?

My uncle donated 8.7 million stem cells.  They said the minimum that they needed was 3 million.  They need at least 3 million to increase chances of the cells grafting, which means that the body accepts the cells and the cells start producing blood for the body - white blood cells, red blood cells and platelets.  They have a cap at 8 million because beyond that, there are increased changes for Graft vs. Host disease, which is a condition where the body attacks the cells because they are foreign.  Since I mom got over 8.0 million cells, I naturally had questions.  The best response I got was (paraphrased):  Well, studies show that 8 million is max, but 8.7 million isn't that much more (that's almost 10% more!) and we think it will be ok.  We want to increase her chances.So here's to the cells grafting, the body accepting all that is done to it, the bone marrow making new cancer free blood cells, and my mom never suffering Graft vs. Host Disease! 

Stem Cell Infusion!

Start time: 11:15am PacificEnd time: 12:50am PacificNow, wait time!First two weeks: Wait for engraftment to happen. Meaning, we wait for the body to accept the stem cellsFirst month: Monitoring in the hospitalFirst 100 days: Serious monitoring, but patient allowed to go homeFirst 2 years: Regular check-ups with hospital.  After two years, if all goes well, remission can be declared!

Day Zero: A Beautiful Day

Today is a relaxing, beautiful day.  We have had rough moments coming up to today.  I am sure there will be rough moments after today.  However, today we are basking in the glory and grace of everything in our life, thankful for everything that has gone right up to today, thankful that my uncle's stem cell harvesting went so well yesterday, thankful that my mom is receiving the stem cells through a fairly painless process and just enjoying this beautiful Transplant Day Zero together here at City of Hope. Sending my love out to all our supporters during this journey.Day Zero is the terminology used for Transplant Day.

Rest Day!

Since admission day on January 19th, 2014, Mama Pham has had radiation treatments twice a day. Usually around 8am, then back again at 2pm. She hated all 10 of those Intensity Modulated Radiation Therapy appointments. Her last radiation visit was Friday afternoon. On Saturday, they gave her a dose of Etoposide, an anticancer drug with rough side effects. But today is rest day! It falls on a Sunday, on the 7th day of treatment.Her appetite quickly diminishing, partly due to the side effects and partly due to the fact that she doesn't like the hospital food.  City of Hope has a fairly decent hospital menu, but since the food isn't typically Vietnamese, my mom has a hard time eating it.  Outside food is not allowed unless the patient eats it within one hour of preparation. I have spoken to her doctors and dietician and at one point if she continues eating very little, she may have to put on IV food.Upcoming important dates:January 28th: Mama Pham's Birthday!January 29th:  My uncle's stem cells get harvestedJanuary 30th: Transplant Day