And we've begun!

We are proud to announce that Joshua Paul officially took his first pill tonight!  Really don't even know what to think about it!  Josh is feeling quite nervous - there are so many side effects of the pills he is apprehensive about how he is going to feel these next few days.  And I can understand why - check out this list of common ones (occurring in at least 25% of patients):

Back pain; bone, joint, or muscle aches; constipation; diarrhea; dizziness; dry skin; flushing; gas; hair loss; headache; loss of appetite; mild itching; mild muscle cramps or spasms; mild stomach pain or upset; nausea; runny or stuffy nose; sneezing; tiredness; trouble sleeping; vomiting; weakness.

And here are the uncommon ones:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black or bloody stools; blood in the urine; change in the amount of urine produced; chest pain; confusion; dark urine; fainting; fast or irregular heartbeat; fever or chills; lightheadedness; mental or mood changes (eg, anxiety, depression); numbness, tingling, or weakness of an arm or leg; one-sided weakness; pale stools; seizure; severe or persistent cough or sore throat; severe or persistent dizziness, headache, tiredness, or weakness; severe or persistent muscle pain, weakness, or cramps; severe or persistent stomach pain, loss of appetite, nausea, or vomiting; shortness of breath; slurred speech; sudden, unusual weight gain; swelling of the hands, feet, ankles, or around the eyes; unusual bruising or bleeding; vision changes; vomit that looks like coffee grounds; yellowing of the eyes or skin.

I think the most concerning one deals with the heart, which could lead to sudden death.  Here is the info Tasigna has on their site:

What is the most important information to know about TASIGNA?
TASIGNA can cause a possible life-threatening heart problem called QT prolongation.

QT prolongation causes an irregular heartbeat, which may lead to sudden death.
Your doctor should check your heart with a test called an electrocardiogram (ECG): • Before taking TASIGNA
• 7 days after starting TASIGNA
• Regularly during treatment
• After any dose changes

You may lower your chances for having QT prolongation with TASIGNA if you: • Take TASIGNA on an empty stomach.

Umm, no thank you!  Don't want any of that.  Josh did have a base line EKG this week and then another scheduled for next week.  Our day at MDACC was rather uneventful today, which was a nice change.  The trial nurse was out today so we met with a different one who got us all set up.  Basically all we have to do is take the pills and keep a diary of the times that he takes him.  Sounds easy enough!

They gave us a three month supply in this huge brown sack, and when we walked out with it in hand I really felt like we were stealing something!  Our insurance company approved us to be in the trial, so we were able to get the meds without paying a single penny for them!  We figure we walked out with about $20,000 worth of pills. Insanity!  Of course we still have to pay for every other aspect of his care - bloodwork, EKGs, doctor appointments, biopsies.  We got the bill for our first meeting with Dr. Quintas and it was $455!  For thirty minutes!  Ack!  And that was truly just for talking to him!

We were also able to chat with the doctor who told us he would redo the paperwork for the insurance company for Josh's disability pay, since he did it wrong the first time.  Hopefully all that paperwork gets done.  So frustrating to have to let someone else be responsible for everything.  I like to do it all myself!

We were surprised on our way home with a call from one of Josh's coworkers saying they wanted to stop by.  Luckily my wonderful momma cleaned my house for me today while we were gone! :)  Although I'm honestly at the point of not caring too much at this point.  It was really nice to finally get to meet some of the folks from his work.  I hear so many stories about different people that I have created little cartoon images in my head of what each person looks like.  They were so sweet and supportive and surprised us with an envelope of money they had collected for us.  They hadn't walked out the house for more than 1 minute when I had to just melt down.  I am so touched by how people have reached out to us.  Each and every penny will go straight towards paying all these bills that have started coming in!  Thank you so much UP folks!  I asked Joshua what he wanted to say to you guys,  but he just teared up and said he doesn't have the words to express how it has touched him.  So you guys made him a big ball of goo!

Right now we are asking people to please pray that Josh is able to tolerate the medication.  So many people have to stop this type of med because the side effects are just too great to bear.  And in the long term, please pray that he does not become resistant to the Tasigna.  I'll post more about that tomorrow.  Hope everyone has a great weekend!