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!

Upcoming Events - Lumbar Puncture + Stent Replacement!

Mama Pham is doing well so far. She is still a bit underweight since her taste buds have not returned and she has occasional nausea. We are trying to make sure she eats with shakes and soups (My, Pho, Hu Tieu!). She is hanging in there and some days are better than others.Next week, we have a CNS Prophylaxis (lumbar puncture with chemo), which is chemo into the spine (also known as intrathecal chemotherapy), as a preventative measure. Cancer cells can get into the Central Nervous System, but chemo drugs cannot, so they have to inject it this way.  Mama Pham will have 6 of these injections total.  Each time, she gets about 2 tablespoons (need to insert actual mL) of chemo (I think it is methotrexate, need to verify).Mama Pham will also have a stent replacement to make sure her kidneys continue to properly filter all the meds we put into her body.  It is too soon to blast out the kidney stones so we will keep the stent in there until her platelets and WBC counts are better.  We think the kidney stones maybe have been caused by earlier doses of chemotherapy.  We don't know for sure.Right now, her blood counts are:

• ANC: 1.2 (Low), considered neutropenic
• WBC:  3.4
• Hemoglobin: 8.7 (Low), transfusion optional if patient is tired
• Platelets: 26 (Low), be careful of bleeding.

She will need a platelet transfusion before the lumbar puncture.

Spinal Tap is clear!

The spinal tap came back clear.  There are currently no cancer cells in Mama Pham's Central Nervous System!

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

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

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!

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!

CNS prophylaxis - preventative measures for the CNS and Brain

When my mom first got chemotherapy, we were told that at one point, a CNS prophylaxis would be done.  This is chemotherapy given to the central nervous system (CNS) as a preventative treatment.  A lumbar puncture (also known as a spinal tap) is performed and chemotherapy is inserted into her spine.  The reason they do this is because there is a barrier that prevents normal chemotherapy from entering the spine and brain.  I guess "Go Brain!" for protecting itself.  Our first doctor, Dr. Grant Lewis, indicated that most times with Adult Acute Lymphoblastic Leukemia patients, a CNS prophylaxis is done even if no cancer has been detected in the brain or spinal cord.  It is for preventative measure since cancer presence in the central nervous system is quite a critical affair.My mom was originally scheduled to have the lumbar puncture and CNS prophylaxis tomorrow.  However, presence of blasts (bad white blood cells) in her peripheral blood stream has halted this procedure.  The team of doctors at City of Hope have "concern of seeding the CNS ( due to presence of leukemic blasts in Peripheral blood)."  Also, Hyper CVAD Part B includes two drugs, methotrexate and cytatabine, that enter the brain and CNS, so the CNS prophylaxis is not currently needed.  She will have her CT scan on Friday and will be admitted for her 2nd round of chemotherapy on Monday.  While all this happens, her siblings will be tested for stem cell match.  If there is a match, the transplant will probably happen in 2 months, after chemotherapy cycle 2 (called Hyper CVAD Part B) and satisfactory remission.

City of Hope Day!

It is the long awaited day of our City of Hope appointment!  City of Hope is ranked as the #15 best Cancer Center in the United States by U.S. News Rankings and is also one of the NCCN's 23 hospitals.To get to this day, my mom went through 25 days of inpatient at St. Joseph's in Savannah, braved nadir during her first round of chemotherapy without getting sick, got successfully discharged and flew the 4 hour flight (like a rock star) from Georgia to California!  She will have some lab work, we will meet with the doctor and explore the facility.  Our discussions will include the following:

• Future chemotherapy
• Autologous vs Allogeneic stem cell transplant - most likely Allogeneic.  More about this in another most.  Auto is from your own stem cells; Allo is from another person's stem cells
• CNS Prophylaxis
• Treatment at a local hospital in partnership with City of Hope
• Complete Blood Counts

Wish us luck!  Thank you for all the support thus far.We will get there a little early and hopefully get to explore some of their beautiful healing gardens!  Here's to a healthy mind, spirit and body!

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!

Leukine, you troublemaker

This morning, during Dr. Lewis' daily checks, he informed us that he found some blasts in her blood smear.  Blasts are immature white blood cells that should not be found in the circulating blood.  He mentioned this might be due to the Leukine injections in her stomach, which assist with the production of white blood cells to help maintain a level that can better fight infection.  I previously wrote about Leukine here.  Since the Leukine might be causing problems with blasts, he has stopped the Leukine injections.  For us, this means we will need to continue to be fastidious about what she eats, who she sees and what she touches so she does not get sick.

This means not allowing just anyone to visit.  Yesterday, one of her previous co-workers decided to stop by and despite all of her objections, brought a bag of overly-ripe bananas and home-made cold foods.  Ain't nobody got time for that.

It is Summer. Less Hair is Better!

The oncologist is certain that my mom will lose her hair around day 10-14 of the hyper-CVAD treatment.  I have scourged the internet for ways to deal with hair loss, types of wigs and types of head coverings.  My mom and I have talked about this and we will probably cut her hair short before all this happens.  We may consider shaving, but have not had that discussion yet.  The internet is filled with opinions ranging from shaving it all off to leaving it long and letting it fall out at will.To prepare, I have ordered two beautiful hats that will cover her head.   I have also visited the local Savannah American Cancer Society for support and they gave me a free wig for my mom!  The National American Cancer Society receives wigs from Pantene (the hair products company) and sends them to the local chapters.  It really was a joy to visit the local Savannah American Cancer Society, discuss hair loss and bring home a beautiful wig for my mom.  Thanks, Pantene!  We may also buy wigs one day and have them styled, but for now, it was a huge blessing to have a place to go that understands cancer and was able to empathize while I showed them photos of my mom and we picked a wig together since my mom could not physically be there.  She has said multiple times she doesn't think she will need a wig and a hat will be fine, but it is better to stay prepared in case she changes her mind.  I have never gone through hair loss so I have no idea how that can feel.Pictures soon to come.

The Comforts of Sleeping on a Cot

I spend most of my days and each night with my mom at St. Joseph's.  One of the night nurses found me a cot on my first night here.  It is quite comfortable!  During the 4 days of chemo drugs, the nurses came in every 2 hours or so throughout the night to check on the IV, check my mom's pressure and occasionally give pills.  The chemo drugs are over with for now, so we get most of the night uninterrupted with the occasional blood pressure, oxygen and temperature check.  Woo Hoo!Please don't judge my unmade bed:Below is the beeping culprit that would beep throughout the night.  It is now unplugged!  It beeps each time there is an air bubble or the liquids need replacing.  

Hyper-CVAD

On August 14th, 2013, I talked to our oncologist and he told me he wanted to immediately put her on the Hyper-CVAD chemotherapy treatment for her T-Cell Acute Lymphoblastic Leukemia.  Our original plan was to fly her to California immediately to start treatment closer to family.  However, the oncologist could not in good conscience sent her across the country without starting treatment.  The cancer was quite progressive.  Therefore, my mom and I both decided it was best for her to start her first cycle in Savannah, Georgia under the care of Dr. Grant Lewis from Summit Cancer Care.(Note: I will be writing a summary now and update this post with more detail later)Hyper-CVAD includes 6-8 cycles of chemotherapy.  Each cycle lasts about three weeks, with a three week break between cycles.  The bulk of the chemotherapy drugs are giving 3-4 days at the beginning of the cycle.  Mama Pham got them orally and intravenously (IV).  There were many warned side effects, but she has not had any of them.  Here is the list of chemotherapy drugs she has received in the past 4 days:

• Cyclophosphamide (Cytoxan), by IV Q12hours over 3 hours (6 doses) Days 1, 2, and 3
• Vincristine (Oncovin) by IV,  Days 4 and 11
• Doxorubicin (Adriamycin), an antibiotic with anti-tumour effects, by IV, Day 4
• Dexamethasone, by IV, 1 to 4 Days 11-14
• Mesna, by IV, to reduce side effects of the other drugs, Need to look up when this was administered.  I think it was administered over the 4 days throughout the day.

Side Effects

• (Side effects to be added soon)

Mama Pham has had very little side effects so far.  We are on Day 5.  As the oncologist says, "Boring is good."  So let the boredom begin for the next 2.5 weeks!