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.

Spinal Tap + New Doctor

Today will be Mama Pham's first big procedure at the local hospital. So far, she has had all treatment at City of Hope, her transplant hospital. Today, she will be getting a CNS Prophylaxis (Spinal Tap + Chemo) done at St. Joseph's Hospital in Orange County. The travel to City of Hope (35 miles, about 1 hour drive) takes a toll on her so she will get some of her procedures done locally in at St. Joseph's (7 miles, 15 minutes). The procedure is fairly quick, but requires 2 hours of stationary, lie flat recovery. We do not want any leakage of the spinal fluid into the body!  The leakage can cause headaches and tingling sensations.She needs a total of 6 preventative CNS Prophylaxes.  3 down, 3 more to go!

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!Cancerfree

Immunosuppressant: Sirolimus and Tacrolimus

We are currently at a stable state of 0.5mg Sirolimus and 1mg Tacrolimus. These are both immunosuppressant drugs. Their doses are adjusted twice a week, after the Complete Blood Count lab work reveals the chemical make-up of Mama Pham's body. Too much of these drugs can compromise the health of the body's organs as well as suppress the immune system too much, preventing it from fighting lingering cancer cells and other infections. Not enough immunosuppressants can increase the risk of Graft vs. Host Disease (GVHD). The goal is to have the perfect amount each day to suppress the immune system enough to prevent GVHD, but still keep the body healthy and strong with the ability to fight the bad guys.

Happy Day 100!

Today is Day 100 post-transplant for Mama Pham! Just in time for Mother's Day. Day 100 is the day when a patient can reduce the amount of doctor visits and lab work from twice a week to once a week. They can also start seeing their local oncologists. I will greatly miss the care from Dr. Salhotra and the City of Hope team. However, I seeing a doctor closer to home will help with Mama Pham's spirits. She will still go to see Dr. Salhotra once a month at City of Hope in Duarte, CA. Her weekly visits, however, will be locally with Dr. Mummaneni at St. Joseph's in Orange County.Hooray for Day 100! Her taste buds have not returned, she is still on a neutropenic diet and is still week, but is definitely in a much better state than Day 0!

Quiet, Uneventful

Things have been a bit quiet and uneventful the past week, which is awesome. My mom had regular, twice weekly check-ups at City of Hope and everything looks good. Her complete blood count is acceptable and she feels well. She is still underweight and not eating as she should, but that will slowly get better over time. Here's to more quite, uneventful periods. No infections, no nausea, no danger.

Stent!

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!

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.

Chimerism Analysis Good!

The Chimerism analysis shows that 99% of Mama Pham's cells are the donor cells!  This is great news.  It means that engraftment is happening (her body is taking the donated stem cells) and that the body is not making bad cells. Day 57 and going strong!I like the Seattle Cancer Care Alliance's description of the chimerism analysis:A Chimera was a creature in Greek mythology usually represented as a composite of a lion, goat, and serpent. Contemporary use of the term “chimerism” in hematopoietic cell transplant derives from this idea of a “mixed” entity, referring to someone who has received a transplant of genetically different tissue. A test for chimerism after a hematopoietic stem cell transplant involves identifying the genetic profiles of the recipient and of the donor and then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue.

Meds, Meds and more Meds!

The first 100 days post-transplant are the most critical days.  Physiologically, is the time when the patient's immune system is most suppressed and the patient is most week. Emotionally and mentally, this is when the patient is quite vulnerable, trying to slowly get life back together.  The first 30 days are spent in the hospital where doctors check-in daily, nurses monitor 24/7 for irregularities, patients are fed through IV if they can't eat, and someone is always there to make sure the right meds are taken.  Once the patient is discharged, it is critical that the patient continues to take very careful care to make all the right medications, eat properly, maintain a clean home and constantly be on alert of irregularities in bodily functions.  Fever is the most important sign to watch.Taking the right medication at the right time is very critical to maintain the correct chemical balance to fight off infection, prevent off Graft vs. Host disease but allow the body enough strength to fight off any lingering Leukemia blasts.  This is where we trust the team of doctors and pharmacists to know the right drugs to combine for the best possible outcome.  So glad chemistry is in the medical curriculum!  Below are a sample set of some of her current medications:

  • Tacrolimis - immunosuppresent to help prevent Graft vs. Host disease, adjusted based on Complete Blood Count every few days
  • Sirolimus -  immunosuppresent to help prevent Graft vs. Host disease, adjusted based on Complete Blood Count every few days
  • Acyclovir - antiviral
  • Sulfamethoxazole - antibacterial
  • Magnesium - Other medications cause a magnesium deficiency
  • Zofran - nausea
  • Protonix - acid reflux
  • Ursodiol - potential gall stones, help with liver
  • Baraclude - preventive measure for Hepatitis B because this is a common liver condition among Asians who have not been vaccinated.  Since my mom's immune system is suppressed, it is critical that we prevent Hep B
  • Voriconazole - antifungal

With so many different, changing medications, we need to constantly check to make sure her chemical levels are good and that the drugs do not negatively interact.  One example is that we want to keep the Tacrolimus and Sirolimus level at the perfect balance so that graft vs. host disease (GVHD) does not happen.  However, the two drugs suppress the immune system, which means they inhibit the body's ability to fight off evil things (like Leukemia blasts).  We eventually need to lower this dosage or stop completely so the body can get stronger.  There are risks when suppressing the immune system too much, but also risks when not suppressing it enough!

Halfway to Day 100!

Day 100 is the milestone for most post-transplant patients.  It is when they can cut back on the 2x/week doctor visits, possibly go off the neutropenic diet and overall start getting back to somewhat of a normal life.  We are at day 50, which is half way there!Mama Pham's taste buds are still shot, she is still weak, the stent occasionally bothers her and she still has to make the 1 hour trek to City of Hope twice a week, BUT she is still cancer-free!  We just need to manage the side effects until she gets strong again.  The 100 day milestone is a great milestone.  Then we will celebrate the 1 year milestone and then the 2 year milestone!

Ocean Therapy

After spending most of our time just driving between home and the hospital, I decided it was time for some ocean therapy on a beautiful day. Completely covered from head to toe, sunblock on any exposed skin and sporting a mask, we went to Corona del Mar and took a little stroll down the empty tree-lined streets and along the cliff side.Beach

"Your medication is not covered."

We have had numerous calls from the pharmacy telling us that some medication is not covered by insurance.  They said that if the doctor can verify that the patient really needs the medication then the insurance will cover it.  One call to the doctors' office usually does the trick.  My question then is this:

How often do doctors prescribe medications that patients do not actually need?

Bone Marrow Biopsy is CANCER FREE!

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.