Cycle 1 Day 8: Good Day October 29, 2013

Filed under: Uncategorized — cindytripp @ 9:34 pm

Today was the second of four treatments in this initial cycle of the clinical trial. It was a good day—10 AM  to 5PM, no reaction to study drug, and additional pre-meds meant that I slept through most of the treatment! Overall, the drug’s side effects for the last week have been minimal, and I’m feeling okay most of the time. I’m also taking care to get enough rest. Because of the number of people around me who are experiencing flu-like symptoms, I’m wearing a mask at school and anytime I am in public. People think I wear the mask because I’m sick when instead I wear it because they might be sick! I don’t like wearing the mask, but I’m committed to doing whatever it takes to stay healthy for this trial.

My focus is on the immediate present and not thinking beyond the moment. I’m trusting that my time is in His hands and acknowledging that my worrying about what may happen is counterproductive. I’m considering the lilies…

Consider the lilies, how they grow: they neither toil nor spin; and yet I say to you, even Solomon in all his glory was not arrayed like one of these. If then God so clothes the grass, which today is in the field and tomorrow is thrown into the oven, how much more will He clothe you, O you of little faith? And do not seek what you should eat or what you should drink, nor have an anxious mind. For all these things the nations of the world seek after, and your Father knows that you need these things. But seek the kingdom of God, and all these things shall be added to you. (Luke 12:27-31, NKJV)


First Day of Trial… October 23, 2013

Filed under: Uncategorized — cindytripp @ 10:06 pm

Well, in some ways my first day of the clinical trial was a trial indeed. I arrived at 6:45 AM and left at 8:10 PM—”And thereby hangs a tale” (from As You Like It). Yes, much of the day felt Shakespearean.

First things first. Yesterday taught me that I am absolutely in the best place at the right time. The staff at Sarah Cannon Research Institute and TN Oncology are extraordinarily compassionate and skilled. In the last month, the tumor in my neck (cleverly hidden by scarves) has grown to golf-ball size, and my C-125 marker has jumped to 296 (from 76 in August; “normal” is below 35; when I was diagnosed it was 585; ugh). As I learned yesterday, what this means is that my cancer is again active after only a short time off treatment. Another round of chemotherapy is an option but one with great toxicity and thus not a long-term solution. Since this clinical trial directly targets the protein on my cancer cells with an antibiotic specifically designed for that protein, the study drug may be effective, and I am very, very grateful to have qualified for this trial.

Looking back on my experience yesterday, I can now talk about it without the emotion of the day. Having a blood IV inserted in my veins was hard, requiring access at three different locations because I have awful veins. Then a little way past the halfway mark of the two-hour study drug infusion, I had a reaction. All at once, I was chilled and flushed and nauseous and heaving; if I had had the strength I would have pulled everything out. Thank the Lord James was there: I said the word “nauseous” and he was out the door calling for help. In a matter of seconds, the room was filled with doctor and nurses and staff. The drug was stopped, anti-nausea IV started, ice-pack put on my neck, and another blanket placed over me. Once I stabilized, the study drug was started again at half the rate, and there were no more issues. Of course, that incident pushed the ending time back, and then I had a six-hour post treatment series of blood draws and vital signs. As the hours dragged on, all I wanted was to get home and crawl under the covers and hide. Thirteen hours plus was a bit of a long day.

I felt better this morning but stayed home to rest. Then I was back at Sarah Cannon in the afternoon for lab work and visits with an oncology physician’s assistant and my nurse from yesterday. All the numbers looked fine, and I was encouraged to learn that reactions sometimes occur with trials that have antibiotics. It seems that the body is not happy to have a huge infusion of an antibiotic interfering with its ignoring the presence of cancer cells. They tell me that it probably won’t happen again because the body has adjusted. No matter if that’s the case, yesterday proved that the staff is ready for anything, and that’s very comforting for a patient. I have another lab/visit appointment tomorrow to be sure everything is on target, and then I’ll be on a regular schedule every Tuesday until December 10. At that point, the drug company sponsor will determine if I should continue based on the scans and other numbers.

The reality is that this trial lets me participate in the something that may eventually treat cancers that have this type of protein. I’m in one of early stages of the process, but I have that protein (B7-H3) and I am receiving that antibody which may address the cancer cell. What this means for me is yet unknown, but I am glad to be a participant in a trial like this.

Several times in this post I have almost written something like “This gives me hope,” but I couldn’t because that is not true. My hope is not in the trial or its outcome. My hope is firmly placed in the One who has ordered my days before one of them came to be (see Psalm 139:16). Other verses about hope come to my mind too:

• Yes, my soul, find rest in God; my hope comes from him. Truly he is my rock and my salvation; he is my fortress, I will not be shaken. (Psalm 62:5)

• For you have been my hope, Sovereign Lord, my confidence since my youth. (Psalm 71:5)

• …but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. (Isaiah 40:31)  [Go, Eagles!]

• “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)

• Yet this I call to mind and therefore I have hope: Because of the LORD’s great love we are not consumed, for his compassions never fail. (Lamentations 3:21-22)

• May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. (Romans 15:13)

• We have this hope as an anchor for the soul, firm and secure. (Hebrews 6:19)

• Let us hold unswervingly to the hope we profess, for he who promised is faithful. (Hebrews 10:23)

Fixing my trust, my faith, my hope on Him is the only way through this cancer experience. It is what it is—and He is Who He is. May I hold fast to the truth and know that He has already prepared the way.


Clinical Trial October 21, 2013

Filed under: Uncategorized — cindytripp @ 5:20 pm

Tomorrow (Tuesday, October 22), I begin a clinical trial at TN Oncology/Sarah Cannon Research Institute in Nashville. The study drug directly targets a particular protein on the cancer cells, and my first day will be a long one (8-9 hours) as the drug’s progression and absorption into my body will be carefully monitored.

I’m doing this because for the first time since my diagnosis, a test came back positive for something that may have a treatment. From almost the very beginning, I’ve had cancer of unknown origin, and that meant having treatments for which the outcome was also unknown. In my case, chemotherapy did reduce the size of the tumors and lower the C-125 cancer marker, but nothing offered a permanent solution. Once the chemotherapy treatments ended, the numbers went back up.

I still don’t have a definite diagnosis. There is, however, a definite identifiable protein on my cancer cells for which a drug company has developed an antibiotic. The trial began with test animals in a lab, with 23 humans in the initial phase, and now with about 30-50 humans in an extended phase—and I’m one of those humans! For those who have questions, this clinical trial is open-dosing (doctor and others know what/how much drug is given), and everyone who is in the trial gets the drug with no one receiving a placebo. The trial exists to see if this drug can be effective in treating this type of cancer, and I am praying that it will be and that the study drug can become an effective FDA-approved treatment for cancers with this particular protein. The trial itself is FDA-approved and very carefully monitored, and I’m grateful to have qualified. Only three facilities have been selected for this trial, of which Sarah Cannon is one. Whoo hoo!

This past week I had several scans and studies and labs, and I found my emotions fluctuating between feeling overwhelmed to feeling encouraged. The initial phase of the trial is for the drug to be infused through my port for 4 weeks and then blood work and oncologist visits for the next 4 weeks. The treatment will be considered effective for me if my tumors shrink or do not grow, at which point I can be approved to continue receiving the drug in cycles of three weeks infusion and one week off. All I’m thinking about is tomorrow, however, and about being a good patient and complying with the requirements of the trial study.

Nervous and excited and somewhat anxious and definitely ready—that’s what I’m feeling right now.

My experiences of the last 15 years have refined my ability to wait, which is another way of saying that I continue to have lots of opportunities to trust God and that He is still teaching me how to wait.  While tomorrow I’ll have someone with me all day, I won’t need to take anything to “do.” I’ll be waiting, and I’ll be thanking the Lord for another opportunity to know His presence in a very real way—whatever the outcome of this next phase of treatment.

I am grateful for your prayers and your encouragement and your love for my family and for me. I close with these verses from my favorite psalm:

Hear my voice when I call, LORD;

    be merciful to me and answer me.

My heart says of you, “Seek his face!

    Your face, LORD, I will seek. …

I remain confident of this:

    I will see the goodness of the LORD

    in the land of the living.

Wait for the LORD;

    be strong and take heart

    and wait for the LORD.    Psalm 27: 7-8, 13-14