My uncle attended a class at City of Hope on how to give self-injections at home. He said he practice with a needle and something that sounds like styrofoam. As preparation for donating stem cells, the donor is required to do 5 days of injection of Neupogen. This is the same drug doctors give cancer patients, especially neutropenic patients, to stimulate white blood cell growth. He gives himself shots for 5 days, starting January 25th, 2014, then enters the hospital on January 29th to have his stem cells harvested. More details about that in a different post! In a nutshell, they used to have to take the actual bone marrow for stem cell harvesting. Now they do it with peripheral blood, immediately giving you back your own blood after taking out what they need. Pretty rad, right?
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!
Chemotherapy and Transplant
This post will be a random compilation of stories since I have not posted in awhile. On Sunday, November 10th, my mom's brother, Cau Thanh, arrived in the United States from Vietnam. It has been quite the journey to get him here: Obtaining and FedEx-ing blood samples from Vietnam, HLA-Typing match, letters and documents from City of Hope, VISA application, United States consulate interview and flight to Los Angeles!My mom is now in the hospital for her fourth round of chemotherapy. She is on the Nelarabine again. This is the same chemo she had last time. There are still 10% blasts (bad white blood cells) in her bone marrow after the last round of chemotherapy. Hopefully this round will help get that number lower. Since they cannot do a typical transplant unless she is in remission with less than 5% blasts, her doctor is now planning to put her through a clinical bone marrow transplant trial that involves both a transplant and radiation. This is a trial done on patients who do not respond well to their chemotherapy and need the radiation in addition to the transplant. As of now, this looks like the rough timeline:
- November 11th: Hospital Inpatient admission for 5 days of Nelarabine chemotherapy
- November 15th: Discharge
- November 15th-December 1st: Wait for chemotherapy to finish (about 3 weeks)
- December 1st-7th: Prepare for bone marrow transplant. Mama Pham goes to classes and takes fluid samples for the doctor. Cau Thanh needs 5 days of Neuopgen shots to boost his body's ability to make healthy white blood cells. Cau Thanh also goes through a series of tests to make sure he is healthy and does not have any communicable diseases.
- mid-December: If all goes well, the radiation + transplant happens
- mid-December - mid-January: Mama Pham is hospitalize for 1 month post-transplant. Her body's defenses are completely wiped and need to slowly build back up
- mid-January - mid-February: Mama Pham is home, but most likely bedridden. She must be closely monitored 24/7 to ensure that all her meds are taken at the right time, her daily needs are taken care of and she eat
- February onward: Mama Pham makes visits to the hospital for check up. A patient is not considered in full remission and cured until 2 years after the transplant.
That is the tentative timeline for now. Of course anything can change. We are still waiting on insurance approval for the bone marrow transplant so they haven't been able to start my uncle's full paperwork or officially schedule Mama Pham for any bone marrow transplant preparations.Her spirits are overall well. Some days are harder than others, but she is mostly cheerful and hopeful. She has gotten used to the stent that was put in about a month ago to make sure her kidney works correctly to filter all the drugs. She has a large kidney stone that is currently inoperable due to her weak immune system state.Here's to a successful round of chemo, seamless bone marrow transplant preparation and a successful transplant!
HLA TYPING MATCH! 100%
We found out today that my mom's brother, Thanh, is a 100% stem cell match for her!
Blood samples from Vietnam have arrived!!!
After much work and anticipation, coordinating with hospitals and shipping companies Vietnam, my mom's five siblings were finally able to get their blood samples shipped in the kits provided by City of Hope! According the FedEx tracking, the samples arrived safely at City of Hope today at 9:41am Pacific. I am so incredibly excited that all eight of my mom's siblings' blood samples have arrived at the HLA typing lab at City of Hope. Now we wait for the matching process! Dr. Salhotra has indicated that each sibling is about a 25% chance of a match. With eight siblings, that's a chance of two matches!
HLA Typing - Sending Blood Abroad!
Thank goodness for siblings! My mom has 8 healthy brothers and sisters. This means lots of blood tests and Human Leukocyte Antigen (HLA) typing to determine a stem cell match. Each sibling is required to provide two very carefully labeled tubes of blood. Each tube is 10cc, for a total of 20cc per person. Since five of the siblings are in Vietnam, the HLA Typing lab in California sent five testing kits to Vietnam. Each kit has 2 tubes, 1 Instruction Sheet and 1 "Return of Specimen" form. The forms are included in this post. If the tubes are not properly labeled, the blood is rejected. There are specific instructions to not cool or refrigerate the samples. The samples are required to make it to the HLA typing office in less than 7 days. I called our family to translate all the instructions. All five siblings met at the hospital to have their blood drawn but left to go home for the following reasons:
- The clinic's office said they need to go get cooling gel to keep in the packages to keep the blood cold. This is incorrect. Must be at room temperature!
- The contacted the local post office and they refused to send any blood. They then asked FedEx and DHL. Both carriers only allow blood samples from one specific hospital in Ho Chi Minh City. So the siblings would have to go there to get their blood drawn and FedEx would have to pick it up.
We cleared up all misunderstanding! Tomorrow, my aunts and uncles will go to the main hospital in Ho Chi Minh City that has partnerships with FedEx and DHL. After getting their blood drawn, they will label everything and return everything properly packaged via overnight mail back to the United States. It has been a very interesting experience of translating and learning about localization and shipping rules in each country!Mailing Instr - HLA Testing kit - Current-Blood Return of Specimen FormReturn of Specimen Form