Time to show Tasigna the door

For the first time in 603 days I woke up and didn't take my Super Dangerous but Absolutely Necessary chemotherapy pills.
Feels reckless.
I take Tasigna, twice a day, every day, because I have Chronic Myelogenous Leukemia (or CML). And I will take oral chemotherapy pills for the rest of my, hopefully, long life. That's why I feel so reckless.
I got some labs back that are not so good. The level of BCR-ABL (the protein that enables the leukemia to grow) in my blood is rising. And over the last few months, has spiked.

The first number is at diagnosis. Below the Red Line is the goal. 

So, my local oncologist and my CML specialist in New York had a meeting of the minds and I will be transitioning to a new drug.
My oncologist actually gave me a "title," if you will. He said he's never had a patient fail on a drug as fast as I failed on Tasigna. Awesome.
Time to show Tasigna the door and switch drugs. It's a good thing. Tasigna isn't doing the job anymore. The side effects are no party, either. Awful bone pain. Nausea. Fatigue (hate that word - it doesn't do justice to the extreme exhaustion that is fatigue). Rash.
Possibly, I will feel better on this new Super Dangerous but Absolutely Necessary chemotherapy pill.
It's called Bosulif. Here's the tagline about the drug:

BOSULIF is a prescription medicine used to treat adults who have a type of leukemia called Philadelphia chromosome–positive chronic myelogenous leukemia (Ph+ CML) who no longer benefit from or did not tolerate other treatment.

It has different side effects.  One being diarrhea. Headaches. Edema. Fun times. But not everyone experiences that. Maybe, maybe I will feel great on this drug.
I'm scheduled to start the Bosulif in a few days. The transition plan is to stop taking Tasigna and get it out of my system before I start the Bosulif.
But it sure feels like I'm being reckless.
At the end of my appointment, my oncologist looked me dead in the eyes and gave me the Gang of Four speech again,

Air. Water. Food. Bosulif.
That's it.

Am I afraid that I failed my first drug within the span of 2 years? Yes.
Am I afraid that this drug won't work? No. I think it will work and will work fast. I think I'll be back below the Red Line in no time.
I know God's got this under control. I just have to be still.
"Be still and know that I am God," Psalm 46:10

6 month report

Every time this package comes I get sad. My Super Dangerous but Absolutely Necessary chemotherapy pills arrived again this week.

My Super Dangerous but Absolutely Necessary medicine.

I need to get used to it. I'll probably be taking them for the rest of my life. 

There are some clinical trials right now where CML patients who are doing amazing are being taken off their meds. It will be exciting to see what happens for them. Will the cancer come back? Will it mutate?  We don't know yet. 

What we do know is Tasigna, my Super Dangerous but Absolutely Necessary chemotherapy pills, WORKS. 

I got my 6-month labs back.

When I was diagnosed in October,  labs were drawn every week. My oncologist checked my counts - white blood cells, red blood cells, platelets, etc.
My counts reached normal values (values for people without leukemia) within 3 months. Great results. My medicine was working. And even though I didn't feel normal, my lab results said I was on my way.
Tasigna works by searching for a protein in my blood (a protein created by the blood cancer) and zaps it. Well, it's WAY more complicated than that. But that's how I can wrap my brain around how it works.
The American Cancer Society has a good scientific explanation of how Tasigna works.
At diagnosis, my oncologist measured how much of the BCR-ABL fusion gene is in my blood. It's measured again at 3 months, 6 months, 9 months, so on. The goal, my doctor said, was to reach a BCR-ABL value of 0.073 at the 1-year mark.
I'm at the 6-month mark and I'm already at 0.022.
I can't believe it!

Actually, I didn't believe it. I called my doctor's office to get it confirmed.
Boom! Just call me The Giant Slayer.
Everyone has giants they are fighting. Leukemia is but one of the giants I face. My pastor, Stu Hodges, at Waters Edge Church said Sunday we already have everything we need to fight the battle and win the war.
Focus on God, not the giants.
Max Lucado says it like this:

Focus on giants - you stumble.
Focus on God - your giants tumble. 

For now, I continue taking Tasigna, managing side effects, praising God and slaying giants.

A picture for Wordless Wednesday ... set for the day

CML survival kit

I'm glad there was no such thing as Facebook when I was in college.

Could you imagine a digital, permanent, documentation of just one of those events? It wasn't pretty. 

Oh, sure, there are a few photos hanging around in albums. But not very many. Developing film was expensive, you know.

Definitely one of the "perks" of going to high school and college in the 80s was the lack of the Internet and instant information.

But, today, the Internet and it's endless instant resources is the cornerstone of my CML (chronic myelogenous leukemia) survival kit - or my cancer hacks.

Facebook
There are many "closed" and "secret" support groups on Facebook. Being "closed" or "secret" means only people who are also members of the group can see what is posted on the group page. I can post to any of these groups and get an answer to a question or words of encouragement within minutes. One of the biggest topics in these groups is which medication everyone is on, what side effects they are having and how are they dealing with the side effects.
It's an instant support group, 24-hours a day.
A few of the groups I belong to:

CML survivors
friends by choice ... CML sisters by blood (women only)
brothers and sisters by CML blood
living with CML
CML survivors and caregivers

To locate these, or any other Facebook group, type a search term in the Facebook search bar. Try typing CML. When you see one you like ... maybe there is a group near where you live ... you'll need to click the Join Group button. You should get a response to your request within a day.

Are you part of a Facebook group? Which ones?

Game Day
As I was doing research on Tasigna, the Super Dangerous but Absolutely Necessary chemotherapy pills I take, I found out the company that makes my pills, Novartis, has some programs in place to help the CML patient and family. One is getting ready to launch this weekend - Ph+ CML Game Day: An educational program for patients living with Philadelphia chromosome-positive CML and their caregivers.
If you have CML, you and your caregiver should both plan to attend one. The Caregiver and I are hoping to go to the one in Charlotte, N.C., on Saturday, June 7, 2014.
These are one-day events held around the country with sessions focusing on coping and managing your life living with CML. Physicians and health care professionals are scheduled to be there as well as the Novartis/CML celeb and patient Kareem Abdul-Jabbar.
By going, you'll also have an opportunity to meet other CML survivors. It's a game changer.
To register, see the upcoming schedule and who is scheduled to speak go to www.CMLPatientSummit.com.
The first one is this Saturday, April 12, 2014, in New York.
Oh, and the events are FREE.

Are you planning to go? Which one?

The Leukemia & Lymphoma Society
LLS, The Leukemia & Lymphoma Society, has a great website, www.lls.org, where you can find all sorts of disease-specific programs. They do an especially good job at caring for the caregiver.
Start by clicking the LLS link and then click the tab for Disease Information and Support. There you can select things such as Leukemia, Managing Your Cancer or For Caregivers.
You can request free educational materials by clicking here.
There is also a good discussion board network here. And online chats here.
LLS also has a Co-Pay Assistance program to help with the cost of medication and doctor visits. Find out if you qualify by clicking here.

Novartis Oncology

Novartis, makers of my Super Dangerous but Absolutely Necessary chemotherapy pills, also have patient assistant programs. You can learn more about what they offer by clicking here.

Cancer Hacks
Say what you will about Lance Armstrong, but the Livestrong Foundation, www.livestrong.org, absolutely ROCKS.
One of my favorites is Cancer Hacks, which is powered by Livestrong. Find it at www.cancerhacks.org. Basically, it's hacks (or tips) from other cancer survivors on things such as:

Researching your treatment options
Low blood count: Safe food suggestions
Home changes
Dealing with emotions

You can explore various hacks or even submit your own.

Livestrong also has an app on iTunes I use called the Livestrong Cancer Guide and Tracker App. You can track your doctor appointments, test results, journal, etc. Learn more here. Free on iTunes but you'll need to create a Livestrong account.
Or, you can get a print version of the Livestrong Guidebook Planner and Journal for free by clicking here.

Do you have a cancer hack of your own?

Here's where I need a disclosure statement. These are just a handful of the plethora of resources available online for cancer survivors and their families. I didn't even list the American Cancer Society. You can find them online by clicking here.
I'm sure I left out one of your "favorite" resources. Don't get mad ... share it ...

I get it now

I finally understand.
The Caregiver and I helped start a camp for grieving children, Mikey's Camp (named after a dog, not one of my Mikes). We believe it so crucial for kids who have experienced the death of a loved one. Every camp, we hear, "this is the first time I've been around other kids who actually get it." It's usually the first time kids meet other kids who have lived through the death of a parent or sibling.
A whole new world has opened up for them. A world where they don't hear,

"Yeah, I know how you feel, my dog died and I've been really sad."

Instead, they hear,

"My dad was sick and dying for weeks."

"My mom won't stop crying. Or get out of bed. Or stop wearing pajamas."

"I hate sleeping in the room with my dead brother's things."

Well, I get it now.
Novartis, the drug company that researches and makes my Super Dangerous but Absolutely Necessary chemotherapy pills, flew a group of CML (chronic myelogenous leukemia) survivors and their own caregivers to a two-day summit in New Jersey last weekend. I will update the details of the summit in a later post. But, it was a great experience.
The weekend began with a yummy lunch at a fancy hotel. The Caregiver and I were the first ones of the CMLers to arrive. Then, others started coming in and it began.

"Hey, I'm Patti."

Some of the CMLers and caregivers. New Jersey, March 2014.

"Hey, I'm F. This is R. You a 'blood sister'?"

I smiled.
And the room filled up. It filled up and I look around and realized they all have cancer, pumping through their veins. Just. Like. Me.
After introductions and we figured out who were the CMLers and who were the caregivers, the conversation quickly switched to finding out which drug everyone is taking and the side effects they are dealing with.
Wow. This was awesome.
Don't get me wrong. It's not awesome that all these other people - some as young as 30, some who still want to get pregnant and start a family, some who are years into their diagnosis - all have cancer. No. That's not awesome at all. That sucks.
What was awesome was that they all get it. They understood how I felt. They've been there. And there was a whole room full of people. Just. Like. Me.
That was awesome.
So, yes, I get it now. When the kids head to Mikey's Camp and meet other grief survivors and are so excited to meet the kids who are just like them, I thought I understood. My father died when I was 9. There were no grief camps in the 1970s. All my friends still had both their parents. But I know what it's like to be 9 and have your daddy die. Then when my First Mike died, I thought that I could, that I did, understand how our kids were feeling. And maybe, hopefully, I did OK. But that's not the same.
It's not the same as walking into a room and seeing it fill up with people who truly get it. People with hopes, dreams, kids, caregivers, pains, struggles. Just. Like. Me. That is amazing.