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.
Today's Blood Counds
ANC: 3.2WBC: 5.0 - Pretty good for day 26!Hgb: 8.3 - Close to needing a transfusionHct: 24.2Platelets: 42 - Needs a transfusion
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!
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
Admission to City of Hope for Transplant
Today is admission day to City of Hope. The day started out at 8:00am with the third and dose of Palifermin, used to prevent mouth and throat sores from radiation and chemotherapy. It is a human keratinocyte growth factor that stimulates the growth of cells in the mouth and throat. At 9:00am, she was admitted to the 6th floor of City of Hope's Hospital. It's the top floor, or as I like to refer to it: The Penthouse Suite. This was quite a different experience from past chemotherapy admissions to the hospital. In the past, we sometimes waited for 3-4 hours for a bed in the hospital to open before she was admitted. This time, since she was admitted for a long term stay as a bone marrow patient, they scheduled her for admission immediately after the Palifermin appointment! I guess bone marrow transplant patients are at the top of the priority queue.City of Hope's rooms at Helford are nice. My mom's room consisted of two rooms. The first room is a staging area where visitors can wash their hands, put on masks and hang out. The second room is the patient's room. I hung out for the day, took a short nap and chatted with the nurses before heading home for the night.A completely random note: Duarte, CA was definitely affected by the Southern California fires. Both the outdoors and indoors of the hospital smelled like smoke. Evidently, City of Hope's ventilation system was not designed to effectively handle wildfire smoke from the outside. I brought a portable HEPA purifier for my mom's room to try and help with the smell. Hopefully they will clear it with their air filtration system soon.
New Transplant Schedule
We have an updated stem cell transplant schedule due to insurance approval issues. Hopefully all has been resolved. Below is the updated schedule both for Mama Pham and her brother, Cau Thanh, the donor.Mama Pham:
- January 17th: Palifermin 60 micrograms/kg in OPD
- January 18th: Palifermin 60 micrograms/kg in OPD
- January 19th: Palifermin 60 micrograms/kg in OPD; Hospital Admission
- January 20th: IMRT x 2 (Intensity Modulated Radiation Therapy)
- January 21st: IMRT x 2 (Intensity Modulated Radiation Therapy)
- January 22nd: IMRT x 2 (Intensity Modulated Radiation Therapy
- January 23rd: IMRT x 2 (Intensity Modulated Radiation Therapy)
- January 24th: IMRT x 2 (Intensity Modulated Radiation Therapy)
- January 25th: Etoposide 60 mg/kg (ADJ BW)
- January 26th: Nothing
- January 27th: Cyclophosphamide 100 mg/kg (IBW)
- January 28th: Start Tacrolimusl Loading dose of Sirolimus
- January 29th: Continue Tacrolimus and Sirolimus maintenance
- January 30th / DAY ZERO: INFUSE FRESH DONOR PBSC
- January 31st: Palifermin 60 micrograms/kg
- February 1st: Palifermin 60 micrograms/kg
- February 20th: CMV qPCR draw every Mon & Thurs; consider PCP Prophylaxis
The day of Stem Cell infusion is called Day Zero.Cau Thanh:
- January 25th - January 28th: Neupogen shots to stimulate WBC production
- January 29th, 7:30am: Stem Cell Harvesting!
City of Hope Surprise!
This past weekend, Mike, David and I all went to Los Angeles to visit my mom. She is trying out a new chemo drug, there are many uncertainties and we still had some paper work to take care of for the stem cell transplant donor preparation. My mom knew Mike and I were coming. However, she did not know David was coming, too! He surprised her while she was still at the hospital, and to top it all off, he shaved his head while he was there so they could be bald buddies. That is such a David Pham move. Such a class act. So proud to have him as a little brother. 
Nelarabine - a new chemotherapy
We found out October 7th the my mom definitely did not respond to the two cycles of chemotherapy - Hyper CVAD A and Hyper CVAD B. Dr. Grant Lewis in Savannah initiated her Hyper CVAD treatment. She continued the 2nd cycle of Hyper CVAD at City of Hope. Dr. Salhotra told us pretty early in the process that if she does not go into remission with this type of chemo, the he would put her on a more aggressive type. This more aggress type is called Nelarabine. Unlike Hyper CVAD which targets a range of Lymphoma and Leukemia, Nelarabine is specific to T-Cell Acute Lymphoblastic Leukemia. Nelarabine is only prescribed to patients who did not respond to at least two cycles of a different type of chemotherapy. We have about two more weeks until we know the full effects of the drug. If there are still blasts in her blood and bone marrow, then we must proceed with other options.While we wait for this to take effect, I am working with my uncle in Vietnam to make sure he is ready with a VISA to come to the United States when necessary to be my mom's stem cell donor. He is a 100% match! Getting a VISA from a country like Vietnam is not easy, so we are hoping for the best with the U.S. Consulate. At least the government shutdown is over and there is a consultant for him to visit!
T-Cell Therapy to fight Acute Lymphoblastic Leukemia
Several weeks ago, I was sent an article about T Cell Therapy for the treatment of Acute Lymphoblastic Leukemia (ALL). Coincidently, City of Hope, my mom's new center, was also at the forefront of testing this type of therapy! I was very excited to see this interview. Below is a blurb about this new form of therapy:The experimental treatment involves isolating infection-fighting T cells from the bloodstream, genetically altering them with a disabled virus, then re-injecting the cells into the body. The virus essentially reprograms the T cells to recognize and attack cancer cells. Unlike traditional chemotherapy, which kills both healthy and harmful cells, this new technology allows the immune system to seek out and destroy cancer cells, without damaging the body’s healthy cells.Here is a direct link to the interview with the CEO of City of Hope, Dr. Michael Friedman:http://www.thedoctorstv.com/main/content/T_Cell_TherapyWe will talk to our doctor today about treatment types. It will probably NOT be this new T Cell Therapy, but it was very exciting to me to learn that my mom's new cancer home is at the forefront of ALL treatment!
Day 20, Labor Day, Release News!
Great news this morning! The doctor came in with her Complete Blood Count results:
- White Blood Cell: 5.0
- Platelets: 117
- Hemoglobin: 9.2
This means that she can be released tomorrow! Her counts are up to the levels of a healthy person. She is right on track with the chemotherapy schedule. Her counts actually recovered about 2 days early. Now it is time to transfer to City of Hope for treatment! More to come soon. Time to celebrate this first win in the fight against cancer. Here's to many more victories in the future!
Day 16 of Chemotherapy: WBC 0.6 billion cells / liter
Nadir is supposed to happen Day 10 -14 of chemotherapy. Since it is Day 16 and my mom's white blood cell count went from 0.4 to 0.6, it appears that she is on track! We just need that number to jump to 5! That would be 5,000 white blood cells per liter of blood. Once it reaches 5, we can hop on a plane to California where she will be admitted to City of Hope's Division of Hematology, a fantastic cancer center that focuses on Acute Lymphoblastic Leukemia. We have already registered at City of Hope, so now we just need our discharge papers. Go bone marrow, go! Do your thing.
Day 11 of Chemo: Last does of Vincristine!
Today, my mom receives her last dose of chemotherapy for this first cycle. We are on Day 11 and the drug is called Vincristine (brand name = Oncovin). It is given intravenously through her picc (peripherally inserted central catheter) line. Her Complete Blood Counts (CBC) are as follow:
- White Blood Cells: 0.3, severe neutropenic, high risk of infection. Normal is 5.0-10.0 in healthy adults.
- Hemoglobin: 9.2, no need for transfusion! Normal is at least 12 for women.
- Platelets: 58. Normal is 150-400. Concerning is below 20. She is low, but not at the concerning level.
The WBC count is what we are watching the most. It needs to get above 5 for the doctor to let her get on the plane and above 2 for me to stop worrying about random visitors! More about neutropenia and white blood cell counts here.Here's to a restful night.
Neutropenia, Nadir and Risks for Infection and Sepsis
I have read much about a neutropenic diet, nadir and infection in the past several days. My mom is currently classified as a severe neutropenic, which means she is at high risk of infection. Some definitions below.NeutropenicSomeone who is neutropenic has low levels of neutrophils. Neutrophils are the most dominant type of white blood cells. Levels of neutropenia are classified by the number of Absolute Neutrophil Count (ANC). The ANC is measured in cells/microliter of blood. Below are the classifications from Wikipedia:
- Mild neutropenia (1000 ≤ ANC < 1500) — minimal risk of infection
- Moderate neutropenia (500 ≤ ANC < 1000) — moderate risk of infection
- Severe neutropenia (ANC < 500) — severe risk of infection.
My mom is currently at severe neutropenia, with ANC < 400. Using different units, sometimes this is also referred to as 0.4, instead of 400. Where WBC count is 0.4, so the neutrophil count is even less than that!NadirNadir simply means the lowest point of something. In Chemotherapy, the red blood cells, white blood cells and platelets all have their own nadir periods. The white blood cell nadir period is critical because this is when the body is most prone to infection. My mom is current in her nadir period and it may last for another 10 days. We are on Day 10 of Chemotherapy. Her white blood cell count may not get back up to acceptable until Day 20. During nadir, we must be extra cautious. This means keeping a watchful eye on what she eats and making sure her nurses understand this as well. Surprisingly, not all of my mom's nurses are aware of her severe neutropenic state. This is quite unfortunate.Infections and SepsisNeutropenia and nadir simply means that she is at great risk for infection. Infection can lead to sepsis. We have to keep an eye on her temperature, blood pressure and urination frequency in the next 10 days. Basically, her body's army is gone and we home no little terrors come along during this time! We can only do as much as we can to keep infection out of the room and away from her. One of the ways to keep infection away is to stay on a strict neutropenic diet. This basically means avoiding any fresh foods of any kinds. This includes fresh fruits, veggies, nuts, raw spices, soft serve and anything that might foster bacteria of any kind. Here is a pretty good chart from a surviving Leukemia blog with foods that we should allow and avoid. The Leukemia and Lymphoma website also has a succinct description of foods we should avoid:
- Avoid all uncooked vegetables and most uncooked fruits. You may eat fruit that you can peel a thick skin off of, such as a banana or an orange. Cooked vegetables and canned fruits and juices are safe to eat.
- Avoid raw or rare meat and fish and uncooked or undercooked eggs. Cook meat until it's well-done. Thoroughly cook eggs (no runny yolks).
- Avoid salad bars and deli counters. Buy vacuum-packed lunch meats instead of freshly sliced meats.
- Consume only pasteurized milk, yogurt, cheese and other dairy products.
- Avoid soft mold-ripened and blue-veined cheeses such as Brie, Camembert, Roquefort, Stilton, Gorgonzola and Bleu.
- Avoid well water or boil it for one minute before drinking. At home, it's okay to drink tap water or bottled water.
So here's to the next 10 HEALTHY, INFECTION-FREE days! Go Team Mama Pham!
Cytogenetics, Chromosome 11, Mixed-Lineage Leukemia (MLL)
Today, Dr. Lewis talked to us about my mom's cytogenetics results. I will try to describe this in a accurate way, but please keep in mind that my road to learning the language of Cancer is still relatively new. I also need to brush up on some high school and college biology classes!She has abnormalities in Chromosome 11. The results say:Abnormal female karyotype with a deletion in the q-arm* of chromosome 11 in 4/5 metaphase cells available analyzed. These abnormal cells also had additional non-clonal abnormalities.The remaining 1/5 cell showed a 46,XX karyotype.Submission of a follow-up specimen to monitor karyotypic evolution should be considered as clinically indicated. Karyotypic evolution often precedes disease progression. *I read that q-arm = long-armThis basically means that she is high risk. The abnormalities of Chromosome 11 affects the Mixed Lineage Leukemia (MLL) gene. The possibility of a stem-cell transplant is quite high at the moment. There is much to learn about cytogenetics and I will be updating this post as I learn more.I found this article about Chromosome 11 and MLL.