I am a lab rat

It's official. I am enrolled and one week into my clinical trial drug. I am a lab rat. So far, I have not experienced any side-effects from HKI-272 (Neratinib) pills that prevent me from doing my daily grind. I get tired easily when I move around too fast, and when I go up a flight of stairs, I get out of breath quickly. Perhaps it’s the extra weight I am carrying – which is causing me more stress than anything else. I had one episode of diarrhea (gross, huh) and Imodium fixed that after one dose. And I still should not drive until I get a good ‘swelling has reduced around your brain tumors’ report.

I go back to John’s Hopkins on October 15 for blood work and cognitive testing. The docs also give me written and oral tests to check my memory, emotional state and speed of responses to questions, and they check my motor skills to see if my brain is changing in any way. I get my next MRI and CT scans in early November, so I will not know what is really going on inside of me until then. I am always in an eight week cycle of waiting-for-results mode.  

Have I mentioned lately how much I am sick of this disease? I hate it. I really do. I am sick of the 10-12 pills I take every day. I am sick of waking up at 3, 4, 5 am every night. I am sick of my face looking like Ursula in the little mermaid. Seriously, my neck actually wiggles like a turkey and my face looks like a moon pie. I can’t even fit into most of my clothes because my torso is so bloated.

Yet, I am trying to keep it together. I am trying to cut back on carbs and sweets and salt. I am trying to find semblance of control in this stupid mess where I can’t see, feel or know if anything is working.

As usual, I don’t like to end a post on a negative note. Chris and the kids, my family and co-workers continue to be awesome supporters. Erin and Grace are doing well in college and Jake likes his ‘only child’ status at home. Weekends in the valley with Austin and Taylor and Chris are a sweet relief from the chaos of the DC area. There are many blessings in my life. And I appreciate each and every one.

What’s New in Annie's Adventures in Cancer

Here is the latest in my cancer adventure...

My brain tumors continue to be the focus of my doctors. I had a recent MRI on my brain and aPET/CT scan on my body. The results of both tests were not great, but not terrible.All four of my brain tumors (or necrosis – dead cells – they are not sure what is making up the mass) continue to have swelling around them (which the radiologists say is ‘odd’) and do not appear to be shrinking. From the PET scan, my liver had a tumor that looked active, and there were some lymph nodes in my torso that were ‘lit up’ as well. 

So what to do with cancer that continues to show up and brain tumors that don’t go away? With limited options on how they can treat my brain (no surgery, no more radiation) the next step will be - ah - experimental.

There just so happens to be a clinical trial at the leading cancer research center at John’s Hopkins, that is testing a new drug that may attack the cancer in my body and also in my brain. A link to the clinical trial details and the drug is below for all you medical nerds. Last Wednesday, after an entire day at the amazing Sidney Kimmell Cancer Center in Baltimore – I got accepted into this clinical trial. They are taking 5 people and I am #2. This study originated at the Harvard medical school, and is being conducted at a number of other cancer research facilities around the country.

The experimental drug is an oral medication, with the mainside effect being – gross – diarreah. It can be controlled with immodium. I just have to be vigilant about it. If all goes well with my insurance and baseline scans, I start the drug in two weeks. I am off all other cancer-related meds now, only taking 4mgs of steroids and anti-seizure meds.The steroids continue to be the biggest pain, with weight gain, face and torso bloating, sore legs, thin skin, acne, and worst of all, lack of sleep. Still, I can get up every day, eat (too much) and go to work, so I should not complain.

The good news in all of this is 1) I only need to go toJHopkins in Baltimore once or twice a month and 2) I can get most of my testing done in labs near me and 3) with a new drug, there is hope that it will work,and I will be alive and kicking for years to come.

My parents and family continue to be supportive, driving me everywhere, and helping me stay positive.  I will continue to fight this, and with all the prayers and good wishes from everyone, my blessings will continue.

That’s the cancer scoop!

Love, Annie

Clinical Trial Details:
http://www.hopkinsmedicine.org/kimmel_cancer_center/research_clinical_trials/clinical_trials/search_results/TBCRC022