Maintenance Day 1, Side effects list, Puketastic!

Finally made it to maintenance!  Tyson got randomized to Arm B of treatment which is the protocol that has vincristine and a five day dexamethasone once per month, methotrexate in the spine once every three months, and a double dose of methotrexate once per week.  In other words he got the arm with the highest possible dosage of everything.  In a way I am relieved because hopefully that reduces his chances of having a relapse, on the other hand the point of the study is to measure whether or not those higher doses are necessary.  They are hoping that maybe in standard risk ALL that they can reduce some of the drugs given during maintenance and therefore reduce the amount of side effects these kids experience (now and for the rest of their lives).  Maybe at the end of the post I'll describe all of that in better detail, along with how round one of taking pills goes at the very end.  Today was pretty routine...

We always start with vitals.  He weighed 15.9kg today (35lbs)!  I put the blood work results in the previous post so the only other thing to note are his liver levels are a bit elevated but they said that is expected for a kid on chemo.  ALT 39, AST 54

Getting ready for sedation...he was really wiggly and funny.  This part always makes him nervous.

Playing 'I Spy with my little eye' with dad (yes, dad had to say the whole phrase) while we wait for the doc

There's an I spy quilt on the wall in this room

Having some 'alligator' after he woke up.  He has to stay lying down for 30 minutes to reduce the chance of headaches from the lumbar puncture

Ty's ANC was high enough to go to lunch.  Playing tic tac toe with dad at Red Robin

It was so much fun that dad left his credit card in the little black folder he he. No worries, they are saving it for us in a safe, but I still get to tease him about it endlessly.  I also got to stop and see and hold my sister's new baby boy while Tyson and dad snoozed in the car.  Soooo cute!

I might be curious about this later, or maybe Tyson will be, and I need to get them in my head somehow so I'm going to list the most common side effects of the drugs he will be on for the next 2 1/2 years.  The lists are really long and though we are most likely to mostly only see stuff from the likely group, the less likely group sneaks in there once in a while.  Hopefully we don't ever see anything from the rare but serious group.  If you are interested in reading this buckle up...you might just want to read the likely and less likely sections.  (update on round one of pills at the end)

Dexamethasone: 1 tablet (2mg) twice a day for five days each month
 LIKELY: Overeating, difficulty sleeping, decreased ability to fight infection, personality changes with mood swings, changes in hormone production causing weight gain especially around the abdomen and shoulders, puffy cheeks, muscle weakness and make your body less able to deal with stress, pimples (probably don't have to worry about that one) : )
LESS LIKELY: Damage to the joints, red face, fluid retention, wounds don't heal as well, slowed growth, upset stomach with heartburn, stomach ulcers, high blood sugar, stretch marks and easy bruising, abnormal uric acid in blood, increased pressure in the eyes, high blood pressure, lessening of calcium in the bones making them more susceptible to fracture, cataracts, headache, dizziness, kidney stones
RARE BUT SERIOUS: Inflammation of the pancreas, stomach and intestinal tract bleeding from ulcers, infections, increased pressure in the brain which can lead to difficulty seeing, pressure in the eyes and headache, bone fractures, serious changes in mood, personality and/or severe depression

Mercaptopurine (6mp): 1 tablet (50mg) once a day every day
LIKELY: Fewer white blood cells, red blood cells and platelets in the blood. A low number of red blood cells can make you feel tired and weak, A low number of white blood cells can make it easier to get infections, A low number of platelets cause you to bruise and bleed more easily.
LESS LIKELY: Loss of appetite, nausea and/or vomiting, diarrhea, inflammation and/or sores in the mouth which may look like thrush, red itchy rash and/or hives, darkening of the skin, elevation in the blood of certain enzymes or bilirubin found in the liver which may mean liver irritatino or damage, hair loss, high levels of uric acid in the blod which could damage the kidneys, a feeling of extreme tiredness or weakness or not feeling well, Absence or decrease in the number of sperm which may decrease the ability to have children.
RARE BUT SERIOUS: Inflammation of the pancreas which can cause sever abdominal pain, Inflammation or scarring of the lungs which could lead to chest pain or discomfort and shortness of breath, Damage to the liver which can lead to inflammation and or scarring which could lead to a yellow appearing skin, and fluid collection in the stomach which makes it look larger, A new cancer or leukemia resulting from this treatment

Methotrexate when given by mouth:  10 tablets (2.5mg each) once every Thursday
LIKELY: High levels of liver enzymes in the blood which may mean liver irritation
LESS LIKELY: Nausea, vomiting, loss of appetite, diarrhea, chills and/or fever, inflammation of the intestines which may cause bleeding, sensitivity to sunlight and increased risk of sunburn, fewer white blood cells, red blood cells and platelets in the blood, Learning disability, dizziness, sense of not feeling well or tiredness, drowsiness, blurred vision, rashes with itching or hives, hair loss, inflammation of the hair follicles, acne, tearing and inflammation of the eyes, darkening of the fingernails
RARE BUT SERIOUS: Severe allergic reaction which can be life threatening with shorness of breath, low blood pressure and a rapid heart rate, The rapid death of large numbers of tumor cells which can cause the potassium and phosphate salts and the uric acid in the blood to rise quickly and this could lead to a lifethreatening irregular heart beat or damage to the kidneys, severe rashes which can cause loss of skin or damage to mucous membranes or peeling, redness and pain on the palms of the hands and soles of the feet, Damage, inflammation and/or scarring of lung tissue which may make you short of breath and cough, seizures, temporary damage to the brain such that you may experience headaches, drowsiness, difficulty speaking or forming words, blurred vision or temporary blindness, and decreased reflexes, temporary loss of function or feeling in the lower part of the body, severe damage to brain tissue which over time could lead to difficulty carrying out normal daily tasks or could lead to a coma, imflammation and scarring of the liver, damage to the bone which could lead to arthritis pain and weakness of the bone, inflammation of the heart, fluid buildup around the heart, damage to the kidney

Methotrexate given in the spine: every three months at PCMC under sedation (Versed and Ketamine)
LIKELY: Nausea, Headache
LESS LIKELY: Inflammation of the lining that covers the brain which could lead to a severe headache, a stiff neck, fevers, abnormally high number of white blood cells in the spinal fluid, difficulty learning or thinking clearly, confusion or sense of not knowing where you are, difficulty with speaking, vomiting, rash, sleepiness, a feeling of extreme tiredness, unsteady walk, leg pain, fewer red and white blood cells and platelets in blood
RARE BUT SERIOUS: Similar to methotrexate above with one added, Bleeding into the space in the spine where the injection is given

Vincristine: IV once a month at PCMC
LIKELY: Hair loss, reversible nerve problem that may affect the way you walk or the feelings in your fingers (Tyson calls this crunkily, my feet are crunkily) Constipation
LESS LIKELY: Jaw pain, headache, muscle weakness, pain and bloating in your abdomen, numbness and tingling, wrist or foot drop, drooping eyelids, double vision, difficulty seeing at night, hoarseness of your voice, abnormal walk with foot slapping, difficulty with urination or increase desire to urinate, dizziness and low blood pressure when you stand, abnormal hormone function which may lower the level of salt in the blood, a mild drop in white blood cells, red blood cells, and platelets in the blood
RARE BUT SERIOUS: Complete stoppage of your intestinal activity which can result in intestinal blockage, If the blood leaks out of the vein when being administered it will cause damage to nearby tissue, seizures, vocal cord paralysis, difficulty breathing, inability to walk, decreased ability to hear clearly, damage to the nerve to the eye, in combination with other chemotherapy drugs damage to the liver which can lead to inflammation and/or scarring which could lead to a yellow appearing skin, and fluid collection in the abdomen which makes it look larger

WHEW!  That is a lot of stuff!  I like to type it out cause it helps me have it in my brain to recollect if something does happen that I need to be aware of.  He also takes Septra two days a week which is an antibiotic.  And that's my medicine alarm on my phone so I need to go get round one of pills...

ANNNNNNNNNNND so round one of taking pills tonight.  I was trying to be really excited and have him show dad how good he takes pills cause it has been a couple of months since he took any.  He tried to take the bigger one first (6mp), couldn't get it down so after three tries he took it out and tried the little one (dex).  He got it down fine and promptly vomited all over the kitchen floor (whew thank goodness we were in the kitchen).  Sigh, purple gloves on and boy does the kitchen stink now, but the floor is super clean!  We'll try them again in a little while.  Hoping and praying it works, it isn't an option to just skip the meds. : (