Category: Side Effects

CNS Prophylaxis #5!

I have a backlog of posts about CNS prophylaxis side effects, kidney stones, a nephrolithotomy, and hospital staff. Hopefully I will get around to those soon!

Today is Mama Pham’s fifth CNS Prophylaxis. I have written about this procedure in the past. It is chemo that is inserted into the spine as preventative measure. Leukemia cells can infiltrate the Central Nervous System, but normal chemo cannot. Therefore, oncologists take preventative measures and insert chemo directly into the spine. While doing so, they first draw some spinal fluid to test for irregularity. The process of puncturing the spinal tissue and drawing fluid often causes patients to get extreme headaches because of the depletion of fluids around the brain. This can be remedied with drinking fluids or getting fluids through IV. However, if there is a leak at the puncture point, spinal fluid continues to leak into the body, causing continuous fluid depletion around the brain. That causes continuous headaches, nausea, dizziness and neck pain that cannot be remedied by much, not even strong pain medications. The leak is caused by the body’s inability to quickly heal the wound.

She has had very different reactions to the past four procedures. Here’s to a successful, pain-free, headache and nausea free Lumbar Puncture!

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.


The stent outpatient surgery went well today. We left the house at 5:00am to make it to City of Hope by 6:00am.  The whole procedure includes anesthesiology with Dr. Hum and then the cystoscopy and stent replacement with Dr. Yuh.  The actual stent replacement only takes about 15 minutes.  While they were there, the checked out the size of the kidney stones.  She has a 2cm kidney stone that is mainly composed of calcium.  We are not sure the source of the kidney stones, but think they may be a result of the chemo. They will probably need to do an invasive surgery to get it out.  There are different methods to remove stones, but since hers is so large and hard, the surgery will be more involved.  For now, the stent will do and we will revisit the topic in 4 months!

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:

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 harvested

January 30th: Transplant Day

PICC Line and Dressing

A PICC line is a Peripherally Inserted Central Catheter. Many chemotherapy patients have a PICC line put into their arm to make it easy to draw blood and give medicine without constantly pricking the patient. It’s great. The downsides include living with tubes sticking out of your arm and also the slight risk of infection at home. The PICC line dressing needs to be changed each week. The PICC Line even has its own sterilized cleaning it. It is serious business! There is nothing really holding the PICC line in besides the dressing so it is critical that the dressing is done properly. My mom has had a PICC line in her arm since her first admission into the hospital. They took it out when she left St. Josephs, but put it right back in again at City of Hope. She has never had any issues. This last time, however, she felt some irritation when the nurse cleaned it. The irritation just recently turned into a blister about the size of an inch. The triage nurse on call at City of Hope does not think it is a big deal, but since my mom’s white blood counts are dropping and infections are harder to cure, I emailed her doctor to check if we should do something about the blister. We went to a chemotherapy class a few weeks ago at City of Hope and the nurse emphasize that nothing is ever too small for chemo patients, so we are giving everything, even a 1 inch blister, attention!

Below is a photo of the PICC line and dressing right after my mom had it put in. They also gave her a waterproof arm cuff to wear in the shower. Apparently some people also take it swimming!

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.