Trial 3 Cycle 1 Day 1 August 25, 2014

Filed under: Uncategorized — cindytripp @ 6:10 pm
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The more things change, the more they remain the same.

I guess I’m more familiar with the process by now after 1 year of clinical trials at Sarah Cannon. I know how to pack my day bag, to dress for EKG and port and blood-draw accessibility, and to wait through the day (and often evening). I’m actually at peace on cycle 1 day 1, unlike how I am in the few days leading up to any new trial. Of course, that’s how I anticipate any big event: going over all of the details and hoping I haven’t forgotten anything big. Then I wake up extremely early and feel God settle me down.

My friend Sue picked me up at 6:10 AM, and we were off. First day of a trial takes place in a separate room where I can be carefully monitored as the timetable begins. It’s been a long time since I had Benadryl as a pre-med, and so I was surprised about (but also appreciative of) being asleep from 11:30-3:30. Then comes a long 5-hr waiting period of blood draws and observations to see how my body is processing the study drug.

Everyone at Sarah Cannon is professional and personal and encouraging, and I will leave with documents for everything. This week will be busy because I have labs for the next 3 days and other appts for the next 3 weeks. Cycle 2 will be much the same, and then we’ll see how the treatment is going when scans are ordered at the end of two cycles. If I’m responding well, beginning with cycle 3 in about 6 weeks I’ll have only day 1 on my schedule with no other appointments in between those first days of each cycle. That will be nice.

Also, after my initial diagnosis 2.5 years ago, I’m getting better at asking questions and understanding answers. While my cancer remains weird (my word), it is becoming easier for me to grasp, I think. For some reason, the cancer cells have decided to make my lymph system, particularly the nodes, their home. The good thing is that they have been content to stay in the nodes; the not-so-good thing is that there are lymph nodes throughout the body. When I am receiving some kind of treatment (with a chemo element), the cells can be managed and the C-125 marker diminishes to within a normal range. When I’m not on a treatment or when the cancer cells decide they have the power to block treatment, the tumors grow and/or spread, and the marker rises. Managing this process with the right combination of drugs requires tremendous knowledge and skill, and I am blessed to have the resource of a world-class facility in Nashville like Sarah Cannon Research Institute, a place that does all of this so very well. What a gift from the Lord SCRI and its people are to me!

And after 2.5 years, I’m learning how much easier life is for me when I breathe in and out, when I stay in the moment and be thankful, and when I don’t run ahead of myself. I find it’s also easier to listen and respond to the signals my body gives me because they seem clearer at times now. You may not realize this, but other than the large tumor in my neck (the place that was radiated) I have no pain or discomfort from the cancer, just from the treatment—but the treatment is what keeps the cancer in check. It’s a circle to be sure, but not a vicious cycle; the more things change, the more they remain the same. God is here; I am not alone.

Hearing the still, small voice of God is not a lesson learned once and then remembered for always. It’s a daily surrender that God’s people experience every moment. Bottom line is that I’m doing okay. I keep going back to the beginning, and I’m confident that none of this depends upon my input.That definitely is a relief!

Right now I’m waiting for the final blood draws at 6:14 and 8:14 PM and then James will drive me home. Benadryl means that I can’t drive, so that’s another decision I don’t have to make. It’s quiet here on the Drug Development Unit on the 2nd floor, and God has been calling to my mind how much I have to be thankful for. I pray that I can be faithful in the moment, that I can trust Him with the details, and that I will express my gratitude for those near and far who are praying and caring.

May you enjoy the last week of August and find rest in your moments.


pressing forward to trial #3 August 18, 2014

Filed under: Uncategorized — cindytripp @ 7:06 pm

I’m a week out of radiation, a week with more noticeable side effects (“sunburned esophagus”  and extreme fatigue) yet ones that peaked last week and are almost gone today. My neck will hurt for awhile, however, and it will be a few weeks before the scans will pick up how much the tumor in my neck has shrunk.

Now I’m looking ahead to the next trial. Later this week I’ll have baseline scans and also an ophthalmology appointment since a cornea issue could be a side effect. The first day (Monday, Aug 25) will be a long one, but the cycles fall into a regular pattern of 21-day cycles with scans after every 2 cycles. I’ll remain on the drug as long as it is effective, which translates as no growth. Side effects are the usual ones, but I won’t know how I’ll react to the drug until I begin.

The study drug is considered a “smart bomb.” The molecules contain the antibody with a bit of chemo in the tail. Imagine your hands coming together and your fingers interlocking; that’s the cancer cell and the antibody. Once they join, the cancer cell opens up (base of hands stays together and fingers open up like a flower), and the chemo part attacks the center of the cancer cell and hopefully destroys it. Very interesting science, isn’t it? Dr. Burris’s research nurse Dee explained it just that way today, and it makes sense to me; of course, any errors in how I explained this are obviously mine.

Tomorrow I should learn what my C-125 marker is now. On July 28 it was 143, up from 94 on July 7, and 49 on June 16.  The number is not heading in the right direction, and that’s why I’m starting a new trial. By the way, the normal range is under 30.

Although it takes a daily and often a moment-by-moment choice, I’m trying to hold on to the present and trying not to look ahead. I almost feel detached from reality at times because otherwise I probably wouldn’t be able to come out from under the covers. As always, though, God gives me encouragement through those I come in contact with every day, in person and by email, and I am reminded that His truth is the only truth that gives hope.

I believe that everything that happens to me is not a surprise to the Lord, and because of that I believe that He prepares the way before me. He is sovereign over my life, and I can rest in whatever the outcome may be.

Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand; when I awake, I am still with you. (Psalm 139:16-18)


every end leads to a new beginning… July 29, 2014

Filed under: Uncategorized — cindytripp @ 8:42 pm

I’ve no longer a participant in the second study drug trial, one that targeted the C-125 marker specifically. After 9 cycles, it’s not effective for me. My C-125 marker jumped again to just under 150, so I really can’t continue.

Today I’ve had the first of ten doses of radiation. It’s a bit weird, but it’s not difficult now that my mask is fitted to my face and my body marked to help the radiation therapists align my body and neck for the treatment. The total time—from the moment I walk in the treatment room, am set up with mask affixed to the table, receive the radiation, and am freed from the table—is about 15-18 minutes. There’s no pain, no awareness of lasers zapping me, no discomfort at all. All I have to do is remain perfectly still; I can breathe and see through the mask, and today I realized that it’s even possible to forget that the mask is snapped into place.

Here’s a photo from the booklet about radiation that I was given so I can understand the process. When the neck or face is radiated, a mask helps keep the neck and head from moving, which is important when radiating this area. I think the worst part for me was waiting for the plastic to harden; now it’s not a big deal (answered prayer!).

The photo is different from my reality in two ways:IMG_1686

  1. There are NO holes cut out from my eyes and mouth. (That must be nice.)
  2. The mask is fitted closely to my face. This one has space between the chin and the mask that is not true for me.

It’s really funny looking, isn’t it? I’ve been told that I might be able to have it when I finish, and that would be cool. I think it might be the perfect headgear for Halloween, don’t you?

Anyway, radiation is every weekday for 10 days. Then scans will determine how much the tumor has shrunk, and decisions will be made about what’s next. Maybe there’s another study I can join.

I’m still a bit stunned by all of this. For the most part, I think I look fine and I feel fine. Although the neuropathy has gotten worse in my hands and feet, other people don’t notice. So I’m fixing my mind on the task ahead and telling myself that I can do this. One down, nine to go—and it ends on Monday, August 11.

Side effects from radiation are sore esophagus, difficulty in swallowing, somewhat sunburned skin at site of the radiation, and a cumulative feeling of extreme fatigue. While these won’t be easy, I’m choosing to say that I can handle anything for the 13 days from today to August 11, and I’ll be praying for that to be true for me.

Brentwood Academy’s class of 2015 selected the following as our theme verse for this school year, and I take comfort in Paul’s words:

For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago. (Ephesians 2:10, NLT)

As strange as all of this is, I am reminded again that He has created me anew in Chris Jesus and that from long ago He has planned good works for me to do.  I am secure—just as I am secure in my mask during the radiation treatment. It’s scary but it’s good.

Thank you for your prayers.


Radiation July 24, 2014

Filed under: Uncategorized — cindytripp @ 9:23 pm

Today was a long, hard day. I had a consultation with a Sarah Cannon radiation oncologist—who is awesome, by the way—with much personal attention by his staff. Then a CT scan set up the radiation plan to treat the painful tumor in my neck. The belief is that radiating the tumor will bring relief and also help bring my cancer under more control.

Of course, this is good news, but it’s been a hard day. You know the story of the man in the iron mask? Well, today I was fitted for a plastic mask. A warm, porous plastic substance was placed over my face and head to just below my ears and allowed to harden over about 45 minutes. I could breathe through the mask and could see (although it was suggested I keep my eyes closed)—but as soon as the substance was placed over my head, the radiation therapist clamped it down to the board I was lying on. You see, the radiation laser will be hitting the tumor from several angles and my head absolutely must not move during the process, not even the slightest bit that could occur when swallowing. I made it through the ordeal although by the end I was maybe a little too close to wondering if it would be possible to claw my way out. Thankfully, I was unclamped before I had to try that, and now I can look forward to being clamped down each time before I’m zapped. I was very shaky when it was done—delayed reaction because I wasn’t given any contrast fluids or other meds—and I needed to sit down for a bit before I could get into my car to go home. Hard day. Whew.

Enough of that. I think that I’ll focus on how I can get a picture of myself as the lady in the plastic mask.

That will happen soon. I have a practice run on Monday as they clamp the mask down, zap some laser lights toward the target (I actually have several targets marked on my body now), and confirm that everything is lined up correctly. Most likely I’ll start radiation on Tuesday and continue daily, I think for about 10 doses.

Also on Monday I meet with my oncologist at Sarah Cannon to see what is next. My C-125 marker is moving up (it was a little less than 100 on July 7, up from 55 three weeks earlier; under 30 is the normal range). I may be a candidate for another trial (#3 ) with a study drug that also targets the C-125 marker but has a different chemical makeup. I’ll know more on Monday.

My prayer requests?

I am overwhelmingly thankful for the wisdom, professionalism, and compassion of my oncologist and everyone I’ve seen at Sarah Cannon and TN Oncology. Of all of the unknowns since my diagnosis, my doctors are not cause for concern because they have my total confidence. May the Lord bless them with His grace and mercy. I am also thankful for James, Sarah James, and Emily, for the rest of my family and for all of my dear friends. They remind me that I am loved, and as always Abigail brings such joy to my heart.

I pray that I can be faithful in the small things as I move to another path. Many stresses are part of a cancer diagnosis and part of living with a cancer when the goal is control not cure. Trust has to be a conscious choice, and I want to trust Him in everything, especially when it’s hard. I’m not scared of radiation, but I am unsettled by this new change. I remind myself that the unknown is known to Him, and I am praying to be filled with His peace—and to forget about those clamps!

Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. (John 14:27, ESV)


What I know and don’t know . . . July 7, 2014

Filed under: Uncategorized — cindytripp @ 6:24 pm

I know who has prepared the way before me.

I know that my scans on Thursday (July 3) at the end of cycle 8 showed enlargement of two of the three spots that they are tracking, one in my neck and one in my abdomen—and that’s not good.

I know that my C-125 cancer marker has been slowly but surely rising since the carboplatin influsion stopped before cycle 5 —and that happened because my platelet count had difficulty rebounding after treatment. (These cycles are supposed to be 21 days, but my cycle 4 lasted 35 days since my platelets didn’t recover until then.)

I know that the tumor in my neck has become more painful with each passing day—and I learned that’s because there are many nerve endings in that location.

I know that the area around my eyes began swelling on day 12-14 of cycle 7 and of cycle 8 and narrowed my field of vision significantly—and, seriously, made me look like the “before” picture of a woman needing a face lift! (They don’t think it has anything to do with the study drug, but if not, then I don’t know what’s the cause!)

I know that there are no clear answers right now, and I know that four possible options were discussed today:

  • Continue the study drug and add the carbo back to the treatment (depends upon drug company approval).
  • Radiate the neck for 5 days (depends again on drug company approval if I’m to continue with this study).
  • Continue the study drug—and maybe the carbo—after radiation (again, depends upon approval).
  • Discontinue this trial and see if another study drug trial would yield different results (there’s another one upcoming that is different but also targets the C-125 marker).

I don’t know what will happen next.

For the first time today, I left Sarah Cannon without a “next time” appointment because they don’t know yet what my “next time” will include. My oncologist is checking with the lead doctor at the drug company, who has my records, and discussing this with others, including my initial oncologist, who is also affiliated with  Tennessee Oncology. If radiation is next, it can’t be scheduled until two weeks after my last infusion and then the next infusion can’t be scheduled for another two weeks. If it’s adding carbo, then they’ll probably need two weeks to get approval. If it’s scratch this and try something else, then there’s a wait for qualifying and approval and for the next trial to begin.

I know that my confidence in my oncologist and in Sarah Cannon Research Institute is as solid as ever.

Most importantly, I know who holds my life in His hands, and I know that I will trust in His everlasting faithfulness.

What I know is enough and definitely more than what I don’t know.

If you can, please pray that what I know screams louder than what I don’t know and that I’ll rest in that truth—because I’m not there yet.

For we walk by faith and not by sight (2 Corinthians 5:7, ESV)