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.

Stem Cell Donation Day!

Today was Stem Cell donation day for Cau Thanh, my mom's brother. We had a fantastic day so I cannot wait to detail it in this post!  Some tidbits:

  • Stem cell = CD34+ cell
  • Stem cell harvesting on the apheresis machine for 360 minutes. This means his blood goes out into a machine, the stem cells are extracted and the blood goes right back into the body.
  • About 18L of blood was circulated through the machine.  He has 4.5L of blood.  That's 4 times through the machine!
  • 360 minutes is the longest amount of time donors are allowed to sit to have their stem cells harvested
  • He gave himself Neupogen shots 4 days leading up to the donation day to boost his normal level of 8 billion white blood cells per liter to 60 billion white blood cells per liter.  He was at 67 billion when we got to the hospital. Over achiever. :)
  • They needed 8 million stem cells.  My uncle gave 8.74 million! Again, over achiever
  • With great foresight, he drank 4 liters of water the previous day so his veins were quite fantastic for the process.

My uncle is quite the man.  He is strong mentally, emotionally, physically and spiritually.  He had no side effects from the Neupogen and he barely had any side effects from the 6 hours of stem cell harvesting.  One of the side effects that most donors get during the 6 hour process is tingling sensations.  This is caused by the lack of calcium.  What causes the calcium deficit you ask?  The anti-coagulant!  While filtering the blood for stem cells, they also drip in an anticoagulant that causes the calcium level in the body to go down, which causes tingling.  To combat tingling, they can either slow down the process or give calcium supplements.  Slowing down the process creates a risk of not harvesting enough stem cells (which obviously was not the problem with my uncle!) so they try not to slow it down too much.  They gave my uncle calcium supplements whenever the felt a tingling sensation.  He never takes any supplements so he resisted the calcium at first, but I explained that it was OK and if he didn't take it, he would risk cramping his fingers which would cause an even bigger problem!  Eating and drinking sometimes help with the calcium deficit, but since he didn't want to use the bedside potty, he avoided eating too.  I don't blame him, I would have done it too!The nurses had so many compliments.  Sometimes during the 6 hour process, the patient's blood slows down and the machines start beeping.  This never happened with my uncle.  He rhythmically squeeze the stress ball for 6 hours and his blood flowed freely.  They gave us a list of foods rich in magnesium, calcium, potassium and iron to help aid recovery, but no recovery was needed for him.After we wrapped up at the hospital, we went and made sure he had a nice heme-iron-rich rib-eye steak for celebration.  Steaks are not common in Vietnam so it's always a fun treat to have him try new things.  Below are several photos from the day.

Apheresis Harvesting City of Hope Celebration

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

My Uncles attends a Neupogen Injection Class

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!

PET Scan - Done!

Mama Pham had a PET scan today at 11:00am. She arrived at City of Hope at 8:30am for preparations for the procedure. To prepare, she was told to eat high protein, low carb foods. Two days before that, she had a kidney stent put in and the urologist told her not to eat high protein foods. It is always interesting to make decisions based on the different recommendations and requirements from different departments! Anyways, she ate the high protein, low carb diet yesterday and stopped eating after 8pm. She was originally scheduled for the PET scan on Friday after the kidney stent procedure. However, she was so exhausted and in pain after the procedure that she went ahead and ate food that the urology nurse gave her. The urology nurse did not know that she had to fast for the PET scan. She was sent home without the scan on Friday since she had food in her system. It turns out it was good that she went home because she couldn't have had the PET scan anyways, due to the Oral Contrast she drank the previous day for a CT scan. To have a PET scan done, patients cannot have oral contrast in their system. There was miscommunication between scheduling and nurses, but it all worked out in the end.When my mom came home from the PET scan, she said it was a little like being in a coffin. They bundled her up and put her in a machine. She also said they "tattooed" her, so I'll have to talk to her doctor and nurse to find out the purpose of these tattoos. She was in high spirits so I guess that's a good sign!Next appointment: Thursday with the oncologist and rheumatologist.

Eating + Supplements

There are so many articles about what to eat and take during chemotherapy.  Some foods are good, some are bad.  Some can counter the effects of the chemo.  Everyone knows that red meat helps the body absorb heme-iron, right? So if the red counts are low, eat more red meat.  But red meat is bad for you.  But we also know that too much red meat in the western diet can lead to cancer.  So what should we do?  We run into these questions many times throughout the day.  I have read any different books and articles about the best anti-cancer diet, the best diet during chemotherapy and the best diet for neutropenic (low white blood cells) patients.  Sometimes all these diets contradict each other.  So we do our best to make sure my mom eats the best foods for each part of the chemotherapy phase.  It is quite important to monitor that Complete Blood Count to know how much hemoglobin, platelets and white blood cells she has in her system.Something that we have heard consistently is to NOT take random supplements.  To ask doctors before taking supplements.  The other day, my mom called to ask about buying Gingseng from some Vietnamese store in Little Saigon in Southern CA.  Ginseng apparently helps make people stronger and has magical healing powers.  Apparently, everyone takes ginseng and it helps cure cancer.  I told her, "NO!", and for the sake of having a real professional on board, I e-mailed her oncologist.  It turns out ginseng can also act as a blood thinner, which is something that is very bad for a chemo patient who already may have a low blood count.  Luckily, she never took it! 

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!

Vietnam Visa Acquired!

We just found out that my mom's brother who is a stem cell match just passed his US Consulate interview and was granted a VISA to come to the United States! Due to high cases of fraud (fake marriages, fake organ donors, fake students...) it can often be difficult to obtain a Visa from Vietnam to the United States. Thankfully, the United States consulate saw the sincerity in our case and granted my uncle a Visa! Every little battle helps. Next battle: Get Mama Pham into remission!

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. David and Mommy

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!

Drug Interaction - 2013 Style

My mom recently developed a blister at the location of the PICC line dressing. The nurse on call mentioned she may want to take Benadryl to help with what she believes to be an allergic reaction to the dressing. Since she was not sure if Benadryl would interact with any of my mom's current drugs, she told me to call her pharmacist. While on call with the pharmacist, I decided to just do a quick Google search for drug interactions, since this is a problem that can easily be solved with a database. The internet comes through once again! Thanks Medscape. Before the CVS pharmacist came back on the line, I already had my answer about Benadryl.  I wonder if she used a similar site to look up the information she recited to me over the phone.  That said, I did not know about the other interactions!  Neither the doctor nor the pharmacy warned us about these other problems with an increase in OTc intervals.http://reference.medscape.com/drug-interactioncheckerDrug Interactions

Blood samples from Vietnam have arrived!!!

Screen Shot 2013-09-27 at 11.05.23 AMAfter 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!