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Lilly's 4th Battle with Cancer

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Lilly will start Cycle 1 of battle #4 next Monday, October 2nd.

The study Lilly is now enrolled in is a, Phase 1, trial study for pediatric solid tumors. The trial drug, Olaratumab is an “investigational agent” meaning the FDA has reviewed the study but has not approved the agent for minors, as it is currently under investigation for safety and effectiveness. The Olaratumab works by slowing or stopping the growth of the tumor, by basically covering the tumor. Each cycle will be 21 days long. Side effects are minimal, mainly lack of energy, and low counts.

On top of Olaratumab, Lilly will also receive chemo again. These are not high dose chemos, in fact they are 2 chemo drugs that she had in her 1st battle with cancer. She tolerated both drugs well the 1st go around. She does have a few, non threatening side effects and the chemo also hit her counts. These chemos are considered to be more on the “gentle” side. Still, she will have to be admitted if counts are low and she develops a fever. Sadly her hair will most likely fall out again, this will be the 4th time. These 2 drugs will not start until the Cycle 2.  1 chemo drug will be a quick push on day 1. The other chemo drug will be given days 1, 2, 3, 4, and 5(so M-F) of each cycle, except for cycle 1. If I remember correctly we are there 5-6 hours for this 1, so these will be our longer days.

We will also have other days that we are committed to being there to check counts, EKGs, and vital signs. They are done on specific days in the cycle, but should not be long visits. It is all just a part of being in a trial study. She will have scans every 2 cycles, basically every 6 weeks, but it will just be an MRI just of the area where the tumor is located. They will be looking to see if there is any growth in the tumor.

A couple of questions you might want to ask, that we too thought of, so I thought I would go ahead and throw those answers out there now. 

She will not be receiving proton radiation while on the study and more than likely never will again.
She can stay on the trial as long as it in her best medical interest and the cancer does not worsen. We should hopefully not see any more growth of the tumor once she starts cycle 1.
There is not a set amount of cycles. We look to be taking it 1 cycle at a time.
All her chemo treatments will be done out patient. Yay!!!
The trial she is enrolled will most likely not cure her. What we are hoping is that it will keep the tumor from growing and spreading, until there is something that will cure her. It is biding us time. Outlook of “disease control” is good. Cure rate is now(<20%). 

It is not all good news, but we are HOPEful. Even when we are having some of our darkest thoughts, we always have HOPE. We are all in on this and are HOPEing for a miracle. We are TEAM LILBUG! Round 4…FIGHT!!! 

 Think of Lilly....and we think of you




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  • Jared Willis
    • $950 
    • 6 yrs
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Organizer and beneficiary

Brad Evans
Organizer
Roanoke, TX
Leigh Armbruster
Beneficiary

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