25 vials—countdown to trial #4 December 1, 2014

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Today after the lab technician finished drawing 25 vials of blood for screening, I figured things could only get better. It took awhile to fill those vials, but the process was like an assembly line, one vial after another. The informed consent form estimated the draw to be about 11 tablespoons, but it seems like more and I wondered if I’d have any blood left when everything was done. I did, of course, and I didn’t feel faint or ill. As usual, the staff at Sarah Cannon took great care of me.

The next step is this Friday (day minus-3), a one-time, small-dose infusion of an FDA-approved chemotherapy drug shown to improve immunotherapies. This drug should help the immune system overcome tolerance to the cancer drugs that target the tumors.

Cycle 1 begins Monday, December 8, with a schedule of two drugs already in the trial procedures but which for the first time are being given together in this trial. One drug is an experimental cancer vaccine designed to help the immune system create antibodies to stop growth of cancer cells. It’s given weekly in shots subcutaneously (under the skin) in four specific places (right upper arm or thigh, left upper arm or thigh, right and left abdomen). The second trial drug is given by infusion and binds an antibody to a molecule on the immune cells. After 8 weeks, the infused drug stops, and the injections continue for a couple more weeks. Scans are scheduled by day 84 (at 12 weeks, around the first of March), and those results plus regular blood work will determine if I continue with cycle 2. The procedure changes then too, with only one treatment every six weeks and the other five weeks off.

The next three months will be definitely complicated, but they feel this procedure is promising. That means I’ll show up weekly for whatever is on the schedule, and I’ll focus on the moments not the weeks. I’ll pray for predictable and manageable side effects and for clear results that indicate whether/when to stop or to continue this treatment, and I’ll continue to put my faith in the Lord.

I remember when I was diagnosed almost three years ago and how confused I felt. From the beginning there has been no certainty except the sovereignty of God. Although I’ve learned more than I ever anticipated about cancer in general and my cancer in particular, I’m still only certain of the sovereignty of God—and of His love and His faithfulness.

What a fitting thought for December. God’s promises are real, but that reality is not predictable. I can’t figure out this cancer or predict the outcome, and I can’t imagine what God intends for me with this experience; however, none of those things matter. I can know that He loves me, and I can rest in that love without knowing the details. What Isaiah records God as saying of Israel is true of me also: “Fear not, for I have redeemed you; I have called you by name, you are mine” Isaiah 43:1). I am redeemed; I am called by name; I am His. What a reality!

“I will give thanks to you, Lord, with all my heart; I will tell of all your wonderful deeds.” (Psalm 9:1)


I’m here… May 6, 2014

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After 7 weeks, my platelets are finally over 100—105,000, to be exact. That’s great, especially since the trial protocol lowered the treatment threshold to 75,000.

For the first time in the trial, I received the cycle 6 drug on the 21-day schedule yesterday rather than the usual 28- or 35-day cycle, which is another bit of great news.

Cycle 5 and 6 did not include carboplatin—that drug’s been stopped due to my recurring low platelets—but the side effects of the study drug have been more noticeable. They’re not unbearable, and I can handle the occasional discomfort. More good news.

It’s been a month since my mother died, and I’ve mourned her loss every day. The little things sneak up on me—ice skating competitions on TV that she loved to watch, the beauty of spring and the fragrance of flowers, her sweet smile and gentle words that were always welcoming, the pure joy she had in being alive another day. I know things will get better; I know I’ll be better too.

I want to share my good news with her: As long as this study drug is working and the tumors are shrinking or simply not growing, I can continue the trial drug infusion every three weeks. That’s wonderful news, and I know what my mother would say, “Oh, Cynthia, I’m so happy for you. That’s an answer to my prayers.” My mother was a woman who always believed in the power of prayer, and I believe in its power also.

Listen, I tell you a mystery: We will not all sleep but we will all be changed— in a flash, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, the dead will be raised imperishable, and we will be changed. . . . When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: “Death has been swallowed up in victory.”

“Where, O death, is your victory? Where, O death, is your sting?” . . . But thanks be to God! He gives us the victory through our Lord Jesus Christ. (1 Corinthians 15: 51-52, 54-55, 57)

Happy Mother’s Day, Mama. Sleep sweetly in Jesus until we meet again.

Upcoming schedule: Day 15 labs on May 19; scans on May 23; scan results and cycle 7 day 1 study drug infusion on May 27. I am grateful for your prayers.


cycle 5 April 18, 2014

Finally on Monday, April 14, I received the 5th treatment of the study drug. I was two weeks out from the optimal range, but then I have never been in the optimal range. Platelets were still low (88,000); however, an amendment to the trial protocol lowered the threshold to 75,000, so I could have treatment. Plus, my doctor decided to hold the carbopatin chemo drug as that’s been the culprit in the lower platelet counts.

That meant a much shorter infusion time (30 min) because there are no pre-meds in the protocol for the study drug. Still, my day was a long one: I arrived at 8:15 and left at 3. Why, you wonder? The drug I’m taking is one that’s in a trial and not yet approved by the FDA (although the study itself is approved), and checking and rechecking of numbers and requirements are involved to ensure adherence with the trial directives. The procedure can’t be rushed, and that’s good for everyone. Besides, now that I’m used to the process, I understand that the wait is necessary, and I’m impressed with the professionalism of the oncology staff at Sarah Cannon Research Institute. I never feel forgotten because someone is always keeping me updated.

I have one more treatment in this 6-cycle trial. I can’t wait to see what happens next, but I’m told that I can continue with the study drug since I’ve had such good results. For that I’m thankful and I pray for continued good results.

Praise God from whom all blessings flow….


Scan results! February 3, 2014

Today scan results revealed no new growth in the tumors—and three of those measured smaller than they were almost ten weeks ago. While no growth was the hope after two cycles of the trial drugs, the reduction in size of the three largest tumors was an unexpected gift.

My platelets are not with the program yet, however, and they remain steady at 57,000.  I’ll wait another week to see if they reach the 100,000 mark so I can begin cycle 3. When that happens, the study drug amount can be slightly reduced, which should help the platelets recover more quickly in the future.

I feel very grateful and cautiously optimistic right now. At the same time I remind myself that my hope is not in the trial or the results but in the One Who Heals. I must keep my focus on seeing and trusting God in the moment. While it may sound trite, the reality is that focusing on results—and not on Him—sets me up for disaster. I struggle with fear and despair if I believe He’s with me only when the results are good. In the words of Paul, “But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently” (1 Corinthians 8:24-25).

Therefore, I will wait and hope and believe that what God is doing in me through this cancer is part of the story of my life, and I will “praise God from Whom all blessings flow….”


schedule change January 29, 2014

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When someone participates in a clinical trial, many people regularly review the protocol for the study and the data gathered from the patient to be sure that everything falls within the requirements. This morning I received a call to reschedule scans and the return visit for results, both of which had been set outside the 21-day cycle of the study. Scans are now this Friday, January 31, with the oncologist visit on Monday, February 3.

Moving things up a week is definitely good news because waiting can be hard. I’m not anxious but do want to give an update about the schedule change. I am grateful for your prayers.