June 5, 2018

We Have a Plan!

My team called yesterday to go over the schedule for my upcoming trial. Things usually pivot from the day they do the cell collection, so that’s where we started. I had a conflict with the first option, so we went with the second…which will be on my brother’s and one of my dear friend’s birthdays, June 19. Before collection can happen, all the pre-tests have to be run. So some of those will start this Friday, June 8, as I was already scheduled to see Dr. H anyway. The remaining tests and the signing of consents will be done the following Friday on the 15th. On Monday, June 18, I will once again receive either a CVC or a PICC line. They haven’t made that final determination. But having done this a few times, I imagine it will be a PICC line. I have only had to have a CVC (the one in my chest instead of in my arm) when I had my transplant.

After the apheresis (extraction of my blood for the removal of particular cells and the returning of the remainder to circulation), it will take 4-6 weeks for the cells to be reengineered and be ready to be returned to me via the trial (CAR T-Cell, Phase 2). That will put my inpatient portion of this shindig approximately early August. I will be in six days to receive pre-treat chemo and prepare for the infusion. These are considered Days -6, -5, -4…. The infusion with be on Day 0. Then I’ll be there for probably another week or so afterwards for monitoring. If everything goes ok, I should be able to go home after that and just come back for my frequent check ups…weekly, bi-weekly, then monthly.

So, we are thankful to have a plan in place. This is very similar to what we did in 2015, but the trial has been revamped…prayerfully with better results. And that is where you come in. Please pray with us for limited side effects and maximum results. The possibilities are endless both ways. But as always, I am in the Hands of my Almighty Father, the Great Physician, the King of Kings and Lord of Lords. What could possibly go wrong?! ☺

April 27, 2018

I Think We Have a Plan

For the past four weeks, we have waited patiently, researched, read, and prayed. Last night, we prepared ourselves for the possible outcomes and how we would respond. Today, we received the ok to be able to proceed with what we feel is the best option for us. CAR T-Cell, Phase 2.

Some of you may remember me having a CAR T-Cell trial back in 2015 that didn’t end up working. Well, they have taken the information from that one, improved it, and have come up with a much more effective outcome. Plus, they have changed the primary makeup of the CAR (chimeric antigen receptor) so the antibodies that I have developed will not be a factor against me.

This trial includes the FC (Fludarabine/Cytoxan) pretreatment, so it will be a bit more toxic than my last one. And I will be in the hospital for two weeks, which is a little longer than before. But as from the beginning, our choices of more aggressive treatment options have played a key role in keeping me alive. That along with a lot of prayer and God’s gracious timing. Dr. H said today that with my P53 deletion, I would not have made it this long without our proactive attack measures. It was encouraging to hear that we have made the right choices. I guess the fact that I’m still here is evidence enough, but it was still nice to hear.

What was interesting to hear was her suggestion of a second transplant. We have pretty much left that as a last ditch effort after having done everything else because the statistics of dying during your second transplant are significantly higher. Well, she told us that those statistics are mostly because second transplants are usually done within a very short time after the first one not working. Since it’s already been six years since my first and it will hopefully be another year or two or five (or ten) before I get to the point where I have no more options, she said that my odds are really great for a second transplant! Much like they were for my first one. So that was really good news. Not that I want to do that again any time soon, but the fact that it’s an option is comforting.

So all that to say, I don’t think I’ll die this year. ☺ I’ve got stuff to do, places to go, people to see, cookies to bake. But I’ll be busy this summer getting my mojo back.

March 30, 2018

The Results Are In

The hours ticked by today and I finally figured that since it was Good Friday that I was probably not going to hear from my team. But around 6:30 pm, Dr. H called with the results of my bone marrow biopsy, cytogenetics, and flow cytometry reports.

In a nutshell, my CLL percentage is up from 20-30% to 50% in five months. The P53 deletion is still a thing. And my donor cell percentage continues to inch downwards little by little. You know how when you think of the Lord, the phrase is “less of me and more of Him.” Well, that was the goal with my donor! But it’s going the other way. :/

Dr. H is meeting with all the various doctors who head up the various CAR trials and is trying to figure out which one I will qualify for and will be the best fit. I mentioned before that there is a big question regarding the NK trial, but the Phase 2 T-cell trial might work. She told me tonight that there is even a trial through Baylor that she is looking into. So I have absolutely no idea. Please pray for my team as they assess these various options for me.

Until the end of April when I go back to see Dr. H (then early May when I see Dr. W, my leukemia doctor), I will just be patiently waiting. They have given me some suggestions to try to help with the fatigue, which has gotten progressively worse, so I will work on that for the time being. And I will enjoy the sunshine, the flowers, the warm weather, sitting on the porch with my sweetheart, going to Oletha, family, friends, good food, conversation, and all the other good gifts that our Good Lord has given.

And then we’ll take the next step. Thank you for walking and praying with us along this journey.

Because of Him, it is still a Good Friday.

“Praise be to the God and Father of our Lord Jesus Christ!
In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead.”

1 Peter 1:3

March 23, 2018

Another Bump in the Road

I’m tired, my hip’s sore, and I really don’t want to talk about this right now…but I know there were many who prayed for me today and I want to share at least what I know at the moment. I won’t have the important results back for one to two weeks. My regular labs are hovering around the same as they have been. Lymphocytes up, neutrophils down. Platelets hanging in there.

The news that threw me for a loop today was that the trial (CAR NK) that I had already been approved for (by MDA and by my insurance company) may no longer be available to me due to my previous participation in the CAR T-Cell trial. Dr. H said that the lead NK trial doctor has gone back and forth regarding my eligibility because the product used to develop the chimeric antigen receptor (CAR) in the Phase 1 T-Cell trial is the same as that of the CAR NK trial. They have seen situations where patients have had second CAR trials, and the subsequent trial did not work because the patients had developed antibodies to the antigen so it didn’t “take” the second time. They are concerned/convinced that the same thing would happen in this situation. So it would be pointless to subject my body to two strong pre-treat chemotherapy drugs when my body will most likely reject the antigen (CAR).

It took us quite a while to wrap our heads around this trial in the first place and get to the point that we were ready to move forward…and we were finally comfortable with our decision, should the bone marrow biopsy comes back as expected. And then WHAM! Time to rethink again! Dr. H is going to re-present my case AGAIN to the team to make certain of their concerns. She also reminded me that the Phase 2 CAR T-Cell trial is still on the table. It uses a different type of product (not mice) in the preparation of the CAR so I would not have the same risk of rejection. I had thought that Phase 2 was only for lymphoma and ALL patients, but that was for standard care. It is still available as a clinical trial for CLL. So there’s still a possible option for me to achieve remission. Sigh.

All of this to say it’s been quite a day. I am thankful for my friend, Deidra, who drove me, talked with me, and kept me sane! I am ever thankful for my medical team who answers my endless questions, even after I get home. I am thankful for my husband and family who loves and upholds me and helps me remember stuff! And I am thankful for my God who calms the waves when the storm rages and carries me when I just can’t take another step until I am filled with His strength to once again journey on.

“God is our shelter and strength, always ready to help in times of trouble.”
Psalm 46:1

“The righteous call to the Lord, and he listens; he rescues them from all their troubles.”
Psalm 34:17

“Whoever goes to the Lord for safety, whoever remains under the protection of the Almighty, can say to him, “You are my defender and protector.
You are my God; in you I trust.”
Psalm 91:1-2

February 6, 2018

Rest for the Weary

Today, one of my dear friends is downtown at MD Anderson having tests run trying to find answers to yet another physical disorder most likely caused by the heavy drugs used to save her life from cancer years ago. Oh, the double-edged sword!

Another friend’s life is hanging in the balance, continuing the fight to recover from a lung transplant.

I am on a treadmill currently, slowly walking through life, enjoying the scenery, stopping every two weeks to check my labs…. This is the plan through March 27.

As I opened the Word this morning, I was reminded to “Come and Rest!” The road ahead of us may be unknown. It may be steep and scary. But we have One whose Hand we can hold onto tightly. Sometimes He walks with us. Sometimes He carries us. Sometimes He holds us close. Sometimes these hard times are the only way He can teach us, or those around us, the lesson He wants us to learn.

“Come to me, all you who are weary and burdened, and I will give you rest.
Take my yoke upon you and learn from me,
for I am gentle and humble in heart, and you will find rest for your souls.
For my yoke is easy and my burden is light.”
Matthew 11:28-30

“…and in the wilderness where you saw how the Lord your God carried you,
just as a man carries his son, in all the way which you have walked
until you came to this place.”
Deuteronomy 1:31

“Even there your hand shall lead me, and your right hand shall hold me.”
Psalm 139:10

“My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken.”
Psalm 62:1-2

“The Lord replied, ‘My Presence will go with you, and I will give you rest.’”
Exodus 33:14

“You will keep in perfect peace those whose minds are steadfast,
because they trust in you.”
Isaiah 26:3

“The Lord is my shepherd, I lack nothing. He makes me lie down in green pastures, he leads me beside quiet waters, he refreshes my soul.
He guides me along the right paths for his name’s sake. Even though I walk through the darkest valley, I will fear no evil, for you are with me;
your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows.
Surely your goodness and love will follow me all the days of my life,
and I will dwell in the house of the Lord forever.”
Psalm 23

“I have told you these things so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
John 16:33

January 18, 2018

What’s Next?

As many of you know, and have been so kind as to continue encouraging and praying for me, last Friday was hard. The Lord has been so incredibly gracious to me these past years in helping me to stay positive and joyful throughout this journey. But every once in a while, when things continue to go the wrong way, you just need a day to regroup. Friday was mine.

In keeping things in perspective, I am not dying…today, or next month. “You look so good!” Yeah, well thanks! Tell my cells! I have friends, and folks I meet at MDA, who are on the brink of death. My heart breaks for them. I understand! And I understand that I am not there yet, this time. Where I am is in an ever-declining state of an incurable disease. Cancers with masses that can be removed and then the area radiated and treated with chemo can be “cured.” Leukemia is a blood cancer. You can’t cut it out, radiate it, and be done with it. It’s just different. It affects your whole being at its core, at the cellular level. Much has been discovered just in the six plus years since I was diagnosed. There are drugs and treatment plans that are being used now that had never even been heard of six years ago. So there is a great deal of hope for the future. But one has to live long enough to get there.

I have already used up several of the protocols that are available to me. I have had a stem cell transplant (which bought me two years of remission) and had two of the major chemo drugs utilized for my disease. I could conceivably have used them one more time in the future, but since I have 17p deletion, I am chemo resistant, so chemo is pretty much off the table except for anything other than a pre-treat drug. It’s not going to work long term. I have had the CAR T-Cell Trial, but that didn’t work…other than keeping me in minimal residual disease status (MRD) for a year or so, but it did not achieve remission. Over the last couple years, my numbers have continued to steadily climb/decline, and my team decided to move forward with the Donor Lymphocyte Infusion (DLI)…one last summer and a second in December. Neither has worked. My numbers continue to go the wrong direction.

The only options I have left are the CAR NK (Natural Killer) Trial which is a very new trial utilizing cord blood rather than my own or my donor’s. The second option is to wait until my numbers meet the specifications of the Leukemia Dept for treatment (I’m almost there) and go on one (or more) of the targeted Leukemia drugs (Ibrutinib, Venetoclax, Zydelig). The thing about those is that they are not designed to bring you to remission. They just keep you from dying…which is a good thing. But most CLL patients are much older than me when diagnosed. If I had been 70+, had been through all I have been through, had bought six years, and then was being offered a drug that could possibly give me 2-5 more years, then I would be all over that. But I was 50 at diagnosis. I am now 56. I am looking to buy a couple decades, not just a couple years! I need to try everything I can to achieve remission…even if it’s scary.

Which brings me back to the CAR NK Trial. I wrote my doctor team last Friday afternoon, thanked them for the amazing care they all have provided me over these past years, but let them know that on that particular day I felt a bit hopeless. My numbers continued to creep in the wrong direction but weren’t yet (by one point in one area) in the range of treatment for the Leukemia Dept. It is difficult to determine “fatigue” when I have been dealing with it ever since the stem cell! And I have never had issues with my platelets. God has just protected me from that the whole time! And if my goal is remission, the only real option at this point is to reconsider the Trial. Before I had the second DLI, there had only been three people who had entered the trial and one had died. Not good odds. Since then, more have joined, with better odds.

“The goal of this clinical research study is to learn if giving genetically changed immune cells, called CAR-NK cells, after chemotherapy will improve the disease in stem cell transplant patients with relapsed (has returned) and/or refractory (has not responded to treatment) B-cell lymphoma or leukemia. Also, researchers want to find the highest tolerable dose of CAR-NK cells to give to patients with relapsed or refractory B-cell lymphoma or leukemia. The safety of this treatment will also be studied.
This is an investigational study. The making of and infusion of genetically changed NK cells and the drug AP1903 (if you receive it, explained below) are not FDA approved or commercially available for use in this type of disease. They are currently being used for research purposes only. The chemotherapy drugs in this study (fludarabine, cyclophosphamide, and mesna) are commercially available and FDA approved.
Up to 36 patients will take part in this study. All will be enrolled at MD Anderson.”

So for those of you who are into details, there you go. That’s it in a nutshell. I got word today that they are going to contact my insurance company for pre-approval just to have it ready and on the table for when my body recuperates from the DLI. (You have to wait a certain amount of time between treatments.) This one is a bit scary, and I will have to be in the hospital for a few weeks. The pre-treat is pretty intense, but I just don’t see any other options at this point. Go big or go home.

So that’s it, my friends. Until then, they continue to check my numbers every two weeks. They are trying to figure out why my knees went south again. And we continue to take each day with joy and a thankful heart. Joy comes in the morning. I just had to get past Friday.

Let all that I am praise the Lord; with my whole heart, I will praise his holy name. Let all that I am praise the Lord; may I never forget the good things he does for me. He forgives all my sins and heals all my diseases.
He redeems me from death and crowns me with love and tender mercies.
He fills my life with good things. My youth is renewed like the eagle’s!

Psalm 103:1-5

November 6, 2017

The Decisions Keep Getting Tougher

It’s been a while since my last blog post, so to catch up a bit, I had a DLI (donor lymphocyte infusion) this past summer and then a bone marrow biopsy last month to see it the DLI had worked. It didn’t. The biopsy also revealed that my 17p deletion has come back full throttle. For those who have been following this journey of ours from the beginning, you may recall that the 17p deletion issue was the defining point in moving forward with my transplant. It makes my disease a bit more ornery and difficult to manage.

We knew that a second DLI was on the table, but my doctor called a week or so ago and told us about two new trials that the stem cell team wanted us to consider…a 2nd Generation CAR T-Cell Trial and a CAR Directed NK (Natural Killer) Cells Trial (for B Cell Malignancies). We immediately began our research, becoming more and more concerned, confused, lacking confidence with any direction. During the past six years, we have always felt a strong leading from the Lord and from our own investigation that we were making the right decision. This time has been different. The options have been scary at best, toxic at worst.

This week we would be meeting with our team of doctors, hoping for answers to our many questions. We went armed. Today we met with my leukemia doctor. He is not my primary doctor but he is part of my team. Since I am a stem cell patient, the stem cell doctors act as my primary care team. Dr. W. was very helpful, answering many of our questions about the two trials, about why my 2015 trial didn’t work, and about the two drugs his team has available to me, even with 17p deletion, Ibrutinib and Venetoclax. He discussed the benefits, risks, and the PFS (Progression Free Survival). A third drug is also available, but it carries the high risk of morphing into Richter’s Syndrome, which is what helped take down my buddy Dave. Not even going there.

In a nutshell, it just doesn’t appear that either of the trials provide enough benefit versus risk at this point. While Dr. W is still more of a proponent of the drug treatment protocol, the average PFS is only about two years with any of them. Then I would have to switch drugs or go on another trial. So unless the stem cell team has something amazing up their sleeves on Wednesday, we are now confident in our decision to move ahead with the second DLI. I still have cells in the MDA freezer, my donor was/is beyond a perfect match (14 of 14!), and this round will be done with a higher dose of cells and without chemo. The goal is to get my donor cell count to 100% or as close as possible. They are currently at 84% of my T-cells and 48% of total cells. So we have some work to do. They need to take over and obliterate my bad guys. Or we’ll have to move on to Plan B. And that will mean revisiting all the above.

Sunday, as the Lord so often does, He spoke right to my heart through Pastor Dean. He spoke on Psalm 23 in such a way as I have never quite heard it before. Dean has a way of doing that. So does our sweet Lord. Take a moment and reflect on these words. And thank you for praying and for taking this journey with us.

The LORD is my shepherd, I lack nothing.
He makes me lie down in green pastures, he leads me beside quiet waters,
he refreshes my soul. He guides me along the right paths for his name’s sake.
Even though I walk through the darkest valley, I will fear no evil,
for you are with me; your rod and your staff, they comfort me.
You prepare a table before me in the presence of my enemies.
You anoint my head with oil; my cup overflows.
Surely your goodness and love will follow me all the days of my life,
and I will dwell in the house of the LORD forever.