March 20, 2017

He Goes Before Us

As I mentioned in my last post, my doctor was planning on presenting my case to the whole team for a group opinion on what was the best plan of action for my cancer treatment. If you are one of my Facebook friends, you may have already read that she called me this past Friday with some rather unexpected news. Paul and I have had a little more time to think, pray, and research since then, so I wanted to share some of my thoughts with you and let you know where we are since the train hit us a few days ago.

First of all, the call. Dr. H called to first check on me (so sweet) and to let me know that the team had almost unanimously voted on the DLI (Donor Lymphocyte Infusion) over the targeted therapy drug Ibrutinib. Only my Leukemia doctor had voted for the drug. The entire stem cell team had voted for the DLI.

So what’s the difference and why would they make this choice? Good question! The DLI is a much riskier treatment choice, but it is the only option that offers another chance at remission…which could buy me longer life. The drug therapy, from what I’ve read, averages about two years symptom free progression before we would have to make another decision or before I could possibly be out of options. If I wait too long to do the DLI, I may not have high enough donor counts to “boost.” I might be at the point where the only option is a second full transplant, and the mortality rate for a second transplant is not nearly as high as the first.

So it seems their thinking is to try to get my donor count back up, try to get me back into remission if at all possible, and then save the Ibrutinib as my backup plan down the road if and when I have run out of options.

Just to help folks who are curious better understand the details of a DLI, here are the basic details of how it works. They start by preparing my body with Rituximab, a monoclonal antibody that targets the CD20 antigen on normal and malignant B-cells. Then the body’s natural immune defenses are recruited to attack and kill the marked B-cells. Stem cells do not have the CD20 antigen. This allows healthy B-cells to regenerate after treatment. (This drug also helps with GvHD.) The side effects are primarily while receiving the drug and do not continue on. The nickname for it is “Shake and Bake!” I did. Probably will again. But you get over it.

For the DLI, the original donor is again harvested (if willing and available, please pray). His lymphocytes, a sub-type of the white blood cell, are infused to augment an anti-tumor immune response to ensure that the donor stem cells remain engrafted. These donated white blood cells contain cells of the immune system that can recognize and destroy cancer cells. The goal of this therapy is to induce a remission of the patient’s cancer by a process called the “graft-verses-tumor” effect (GVT). The donor T-cells can attack and control the growth of residual cancer cells providing the GVT effect. Complications, as we have discussed before, include acute and chronic GvHD…graft-versus-host disease and bone marrow aplasia, resulting in immunosuppression and susceptibility to opportunistic infections. Other than that, it sounds like a great idea!! ☺

Our main fear has been the thought of GvHD. I have dealt with mild amounts of it after my transplant, but they were able to get it under control. When you have had a dear friend die of GvHD complications, those images are forever burned into your mind and it is difficult at best to choose to subject yourself to something that could result in the same end.

Then came Sunday.

We had offered to take my mom, who has been staying with us since her trip to the ER last Tuesday, to her church yesterday. But when she woke, she was not really feeling up to getting out yet and urged us to go on to our church and let her stay at home and rest. God had a reason for me to be at Creekside yesterday. When our pastor, Dean Wood, was preparing his sermon for this week, I’m certain that he did not correlate my situation with his passage. But God did.

We have just started studying the life of David…starting with getting to know Samuel, the introduction of King Saul, and this week we met Jonathan. We looked at the map of the terrain of the area, where the enemy was in comparison to Israel, how the Philistines were completely in a position of power over the Israelites.

“Jonathan said to his young armor-bearer, ‘Come, let’s go over to the outpost of those uncircumcised fellows. Perhaps the Lord will act in our behalf. Nothing can hinder the Lord from saving, whether by many or by few.’”
1 Samuel 14:6


“Perhaps the Lord will act in our behalf. Nothing can hinder the Lord from saving!” If God has purposed the victory, nothing can thwart it! Faith takes risks.

Jonathan and his armor-bearer went toward the Philistine camp and decided that if one of them asked them to “come up” then that would be a sign from God that He was going to deliver them into their hands. They did and He did! They slaughtered twenty men before the rest became confused by God. Then the Israelites saw what was happening and came in and drove out the rest. Victory…because one man said “perhaps the Lord will act in our behalf” and acted on it.

The Lord has been acting on our behalf for the past five and a half years. He has been graciously answering yes to the prayers of many faithful family and friends. So we are going to step out in faith as Jonathan did with his words on our tongues and in our hearts…
”Perhaps the Lord will act in our behalf. If God has purposed the victory, nothing can thwart it!”

Faith takes risks.




February 27, 2017

My Doctor Called….

Last Friday, late afternoon, shortly before we headed out for an evening of good music and old friends, Dr. H called to check on me. It is one thing to have had one amazingly attentive doctor in my life, but to now be able to increase that count to two is truly a gift! She wanted to see how my endoscopy went. I giggled and told her it went great...I was asleep!! ☺ She had the results that basically showed that while I had evidence of gastritis (probably from all the pain meds I had been on for my knee surgery and dental procedure) that it was now inactive and I shouldn’t need treatment. So that was a relief. She asked how my symptoms were, and while they are much better, I am still having issues with nausea on a somewhat regular basis. So who knows…. But we have crossed one thing off the list.

Then she wanted to re-visit our last conversation about my cancer numbers. You know…the “we have GREAT NEWS” conversation. LOL! I told her that I had also spoken with Dr. Shah and that she had sort of spoken my language and gotten me on the same page, so I was good to go. I also told her how very thankful I am for my new team, their care and attentiveness, wonderful attitudes, thoughtfulness, and thoroughness…it all made me feel very safe and cared for. She understood the relationship I had with Dr. Shah, so it seemed to mean a great deal to her for me to embrace our new relationship.

Then she let me know that some other results had come back since we last spoke. The chimerism…donor percentage level. Shortly after my stem cell transplant, I had successfully reached 100% donor count, which is the goal. Out with the bad, in with the good. Little by little, some of my old bad guys who had been hiding around a nook or cranny and didn’t get killed all the way, started rearing their ugly heads and barging back in. My donor count went down to 95%. Still ok. The past year it has hovered between 89-92%. This count is now down to 82%. ☹

Now let’s go back to my other number that we follow. My lymphocyte count has grown from 2 to now 47% in a year. The window between growing lymphocytes and decreasing donor counts is becoming something to watch.

But I thought that last week she said that we weren’t going to concern ourselves with numbers anymore! Well, maybe that was a bit of an overstatement. Friday, she told me that she is ready to present my case to “the team” (the group of doctors in each department at MDA who discuss all their patients and make recommendations together on each case). There are basically two paths to take…two completely different paths.

The first option, one that we discussed with Dr. Shah before we did the CAR T-Cell trial back in 2015 is a Donor Lymphocyte Infusion (DLI). If you have followed me for a while, you may remember me writing about this in the past. This is like a mini-transplant booster. They re-harvest from my original donor (if he is still willing) and inject/infuse the lymphocytes (a sub-type of the white blood cell) into me with the goal of achieving Graft versus Tumor (GVT) effect. That’s where the donor lymphocytes, which are T-cells, attack and kill residual cancer cells. That’s the plan.
It can get me back into remission and back to full donor count. (A second full transplant is much more risky but not off the table down the road.)

The problem is Graft versus Host (GvHD) disease. That’s when the donated bone marrow or stem cells attack your own body cells. This happens because the donated cells (the graft) see your cells (the host) as foreign and attack them. Somewhere between 1-4 out of every 5 people will develop some degree of GVHD! The incidence of GvHD is very high with DLI’s. Mine was very mild after my transplant. Some in my gut and more with my skin. But we were able to get it under control. It can last for a few months. It can last a lifetime. I have a dear friend who died an extremely painful death due to GVHD. There are no guarantees on this one. It is no respecter of persons.

The second option will most likely be the new immunotherapy drug called Ibrutinib, or Imbruvica. It is touted to improve survival and symptoms. It does not achieve remission. It just helps you not die. Which is good! Folks could conceivably live on this drug “inevitably” while researchers continue to look for new and better alternatives. This did not even exist when I was diagnosed! And it supposedly works even on folks with 17p deletion. So that is a plus!

So this looks like a no brainer, right?! Go with the drug!! Well, there are side effects to it as well. Bleeding problems that could lead to death. Infections, decrease in blood cell counts, heart rhythm problems, high blood pressure, secondary cancers, tumor lysis syndrome (TLS) which can cause kidney failure and the need for dialysis, seizure, and even death. Most common side effects are diarrhea, muscle and bone pain, rash, nausea, bruising, tiredness, and fever. Wow. Been there, done that, have the t-shirt!

So, yeah, this was a fun post! I just wanted to lay it out there and let you know what we were looking at, what we are praying about, what we are researching the pros and cons of. Yesterday, a loved one told me that I’ll know…just keep following my gut. Well, our gut, our heart, our God has led us well so far. We’ll keep listening to that still small voice.


“I will instruct you and teach you in the way which you should go;
I will counsel you with My loving eye upon you.”
Psalm 32:8

“Make me know Your ways, O LORD; Teach me Your paths. Lead me in Your truth and teach me, For You are the God of my salvation; For You I wait all the day.”
Psalm 25:45




February 5, 2017

The NEW CLL

This past Wednesday, I had my appointment for my regular labs, a CT, and to finally meet my new stem cell team. I haven’t had a CT since 2014. I had wondered why they didn’t do one during my last annual check-up in May, and I learned during this visit the reason why processes had been changing. I used to get a BMB (bone marrow biopsy) and a CT scan almost every time I turned around. Then they became fewer and fewer. I thought it was just because my numbers had been lower. But no. That wasn’t it. The entire protocol for CLL is changing. And it looks like I’m going to have to change the way I think, and feel, about the whole thing.

First of all, I want to thank all of you who have prayed for this transition to my new doctor team. The whole group seems wonderful. Nurse Kellie has been with Dr. H for fourteen years! That has to say something right there. And she’s been at MDA for twenty-four years! She was delightful and very efficient. My new PA (physician’s assistant), Katie, is a jewel. I was really dreading this change because I LOVE my Mary! It was hard enough losing Dr. Shah without having to lose Mary as well. But such is life. Katie has already proven to be incredibly helpful, perky (you know I like perky), responsive, and caring. Finally, Dr. H came in. She is very different from Dr. Shah…a bit quieter, but still communicative, friendly, knowledgeable, caring. She took her time with me, answered my questions, and educated me with regard to the new direction CLL protocol is headed. She even has a bit of a dry humor as she commented to me, “You’re not going to die! No one dies of CLL anymore!” I think she also wanted me to know that she has my back.

I have known, and mentioned on my blog, that two, now three, new targeted therapies have been discovered since I was diagnosed in 2011. Ibrutinib (Imbruvica) is a targeted drug that even works for folks like me who have hard to treat varieties like 17p deletion. Idelalisib (Zydelig) is another targeted drug. They both block a kinase protein. This drug helps treat CLL after other treatments have been tried. Venetoclax (Venclexta) is a drug that targets BCL-2, a protein in CLL that helps them survive longer than they should. It is especially used in patients with 17p deletion, typically after at least one other treatment has been tried.

Dr. H said that the new protocol is not as much numbers based as it is symptoms based (very enlarged lymph glands, enlarged spleen, low platelets, etc.). For months, we have been closely monitoring my flow cytometry results, watching those numbers double just about every two months. It’s been quite disconcerting to say the least. I have been able to tell, since I am quite in tune with my body, that my lymph glands are slightly enlarged. (Thus, the decision for the CT scan.) I have very little energy or stamina. And I spent quite some time dealing with ongoing nausea. So when should I be concerned?

Good question. Not right now. My WBC (white blood count) and platelets are still fine. In fact, she said that she has had patients with high blood counts (30-40+...high for CLL, not ALL) and still didn’t treat because they were still asymptomatic otherwise. Can you even begin to imagine how foreign this thinking is compared to where we’ve been?! My CT did show slightly enlarged lymph glands in my neck, especially on the left side, and a thickening of my chest wall…whatever that means. Plus, a hiatal hernia. Yippee! But the glands aren't as big as an egg sticking out of my neck, so I'm good! So, we are back to the ever favorite “Watch and Wait.” For those of you without cancer, I’m sure this sounds great! Perhaps for those of you WITH cancer, it might sound peachy as well. I AM thankful that mine is not growing as quickly as it seemed to be there for a while. What is difficult, or emotionally disconcerting at times, is the constant unknown. I am thankful for how this disease has taught us to be thankful for every day, every minute; to keep short accounts, to look for the beauty and the good, to laugh, to love, to cherish. I have learned a great deal from many who have gone before me and those who have walked with me. I am thankful for my God and for what He continues to teach me every day.

So, NEW CLL, here we come. We will still be armed and prepared because that’s what we do. We will watch and wait and not be dismayed because we have a God who calms our hearts and fears. I will continue to reach out to those around me at MDA because I was once that person. I guess He’s not finished with me yet.


“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”
Isaiah 40:10




December 12, 2016

Fragile Peace

This month at church, our pastor has been taking us through Isaiah in preparation for Christmas. It is always amazing to think back to how Christ’s birth was prophesied so many hundreds of years earlier.

“For unto us a child is born, unto us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Of the increase of his government and peace there will be no end. He will reign on David’s throne and over his kingdom, establishing and upholding it with justice and righteousness from that time on and forever. The zeal of the Lord Almighty will accomplish this.”
Isaiah 9:6-7


Yesterday we continued a little further into the book and considered another side of this story. Dean mentioned that he had a friend that didn’t like Christmas music because it lacked internal conflict. It was always basically “holly jolly.” Then he reminded us of the reality of the circumstances surrounding the Christmas story. A teenage mom, a hesitant husband who at first was ready to divorce his bride because of the embarrassing situation, and a young family who would soon be escaping to Egypt as refugees. Doesn’t sound so holly jolly when you put it that way, does it?!

During this time of year, many of us are moved by the remembrance of Christ’s birth, the joy of family, the opportunity of giving, the wonderful smells of holiday baking, and the sounds of laughter and music filling the air. But there are many, probably more than any of us can imagine, who struggle with at least some aspect of pain during the Christmas season. There are broken relationships, families who struggle with the mere thought of getting together, people who have no family at all, those who have lost loved ones and want to avoid the holidays altogether. There are those who are struggling financially and cannot afford to buy their loved ones the gift their hearts want to give. There are many who live far away from their loved ones. There are those who are ill and biggest wish would just be for strength and healing…and to see another year. There are those who are searching for the true meaning not only of Christmas but of life itself. As Dean shared, we are vulnerable. Our peace…fragile.

There are so many hurts. We dress it up with tinsel and lights and the hope that there will be “peace on earth, good will toward men.” How do we help? What do we do?

“Let the peace of Christ rule in your hearts, since as members of one body
you were called to peace. And be thankful.”
Colossians 3:15

“But the fruit of the Spirit is love, joy, peace, forbearance, kindness,
goodness, faithfulness.”
Galatians 5:22

“Make every effort to live in peace with everyone and to be holy;
without holiness no one will see the Lord.”
Hebrews 12:14

“Let us therefore make every effort to do what leads to peace
and to mutual edification.”
Romans 14:19

“Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts
and your minds in Christ Jesus.”
Philippians 4:6-7

“When Jesus spoke again to the people, he said, "I am the light of the world. Whoever follows me will never walk in darkness,
but will have the light of life."
John 8:12


He has given us His Word and His Spirit. May we look within and to those close to us to see how fragile our peace might be this season. Let us invite this Christ Child to mend hearts, restore relationships, renew minds, heal bodies, and give the peace that only He can give.

“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.”
John 14:27


Give Jesus.






December 2, 2016

The Climb Continues

Yesterday, my PA from MDA called to let me know she had gotten the results back from my flow cytometry test. For those who have managed to hang with me during this journey and actually remember what all these various tests are, the flow cytometry test is the blood version of my bone marrow biopsy (BMB). Much less invasive! At one point, the two tests were delivering very similar results, so they decided to spare my backside the pain and suffering of the frequent BMB’s and rely more on the blood draws.

Over the last year plus, my flow cytometry has shown that my CLL has grown from 2-3% to 6% to 12.5% to 18% with some questionable aspects that could only be measured by a BMB. That particular bone marrow test counted it back at 12%, but with the 17p deletion. We were very confused but grateful that my white blood count was holding.

Yesterday, my results came back from this month’s blood test, and it has now jumped from 18% to 27%! That’s a scary number. When this all started, my doctor said that as long as it stayed under 10% we didn’t need to worry. Well, we passed 10% a long time ago! Now the focus seems to be on my white blood count and platelets. As long as they hold, we can hold off on treatment. But to watch my CLL percentage jump exponentially with every draw is a bit disconcerting.

So, this is just to update and ask that you continue to pray with us. I am still working diligently to recover from my knee surgery, and we are little by little trying to enjoy a few things on our bucket list. God alone knows the number of our days. But we plan to live and love to His glory for as long as possible.


“Every valley shall be lifted up, and every mountain and hill be made low;
the uneven ground shall become level, and the rough places a plain.”
Isaiah 40:4

“And I will lead the blind in a way that they do not know, in paths that they have not known I will guide them. I will turn the darkness before them into light,
the rough places into level ground. These are the things I do,
and I do not forsake them.”
Isaiah 42:16



October 24, 2016

Answers

This has been quite a month. At my last appointment with Dr. Shah, we were told about her suspicions about a genetic mutation called “translocation” that showed indications on my March BMB (bone marrow biopsy). So they did another one this past month. During the waiting game, besides having a total knee replacement which was just loads of fun, we did quite a bit of research on translocation. I had way too much time on my hands! If anyone were curious, regarding my situation, it would be like 17p switch instead of 17p deletion. And it did not look good!

Because of the pain from my surgery, time was not flying by, and what I thought had been three weeks had only been two! I kept emailing my PA checking to see if my BMB results had come back. Finally, on a Friday, I saw on my MDAnderson webpage that there were results back. I knew that I’d be getting a call on Monday. I did. I usually follow Dr. Shah without any problem, but this time it was all so confusing. I tried to convey the message to Paul when he got home, but we both still had questions. So the next day, I sent an email asking for some clarification. They were very sweet as always and understood how it had gotten a bit puzzling.

The long and short of it is that the March BMB had indicated a possibility of translocation. The October BMB clearly showed 17p deletion (not the switch which would have indicated translocation.) So the point of this is that they needed to definitively determine that the CLL was back and then “type” it. I have been in what was referred to as “Minimal Residual Disease” (MRD) for the past couple years. I was in remission for two years after the stem cell transplant, then MRD for the next couple years. Now it’s moved forward to the level that it can be “typed.”

The fact that the 17p deletion has returned is not good, but it’s not as much of a death sentence as it was the first time. 17p deletion typically makes CLL not respond to treatment. That was the main reason for my stem cell transplant (that and I had all the other negative markers as well). Since the time of my original diagnosis, researchers have developed a couple new targeted agents that have shown incredible promise. They have actually replaced one of the old tried and true medications. So when the time comes, Ibrutinib will probably be my first go-to choice. And if all else fails, a second stem cell transplant is always an option. I don’t intend to go down without a fight!

But we’re still a ways from that. My WBC and platelets are still holding. They could look good for months, years, or days. My doctors will continue to monitor those numbers now that they have the typing determined. That is why we will continue with the same mantra…One Step, One Day, One Prayer at a time.


“Therefore the LORD longs to be gracious to you, And therefore He waits on high to have compassion on you for the LORD is a God of justice;
How blessed are all those who long for Him.”
Isaiah 30:18


“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties.
For when I am weak, then I am strong.”
2 Corinthians 12:9-10


“The LORD is my strength and my song, and he has become my salvation; this is my God, and I will praise him, my father’s God, and I will exalt him.”
Exodus 15:2




September 26, 2016

“The Terrible, Horrible, No Good, Very Bad Day”

Do you remember the notable children’s book from the ‘70’s, “Alexander and the Terrible, Horrible, No Good, Very Bad Day?” Well, we just had one!

It started out like many bad days have for many other folks…our travel plans went awry. But the fact that we even HAD travel plans was so incredibly exciting that I chalked it up to experience and the interesting end to a wonderful four days!

But then it continued. I had doctor appointments first with my mom, then on to MD Anderson for mine. It was supposed to just be my labs and a visit with Dr. Shah. I wouldn’t be getting any results until at least a week or two. We discussed the current issues I’ve been having, and since we’ve been together for this long, we both knew just what I needed and what probably caused most of it.

Then she leaned in with “that look.” I know “that look” because we’ve been through a lot! She said that she had additional results from the last set of labs that she hadn’t had an opportunity to share with me. They were about my DNA. Well, I just figured that my donor percentage had dropped again. Been there, done that. But she still had “that look.” She went on to talk about “translocation” and other words, some that I knew, some that I didn’t. But the one that I had no problem identifying and that caused “that look” was 17p deletion. :( It looks like it might be coming back.

Since she’s been monitoring me primarily by peripheral blood draws instead of the frequent bone marrow biopsies, she wants to do the BMB this Thursday to further investigate and study the findings in the blood. Please pray that 1) it’s not there! or 2) that it is minimal. For those who remember my issue with 17p deletion the first go round, it was the main negative marker that made it necessary for me to have the stem cell transplant. Since then, new advances have been made in CLL research, even with 17p deletion, that could allow me to be treated with other options.

With having been awake for 29 hours at that point, I was not a pillar of emotional strength, and I got a bit teary. Then the conversation turned to my upcoming knee surgery and I was teasing how I refer to her as my primary care physician (PCP). She suddenly had this really weird look and exchanged glances with my PA. I felt like I had completely said the wrong thing! Then she shared with me that she and her family were relocating to California. Her husband had been offered a great position and she was taking a new direction as well. While I wanted to be excited for their opportunity, I just lost it. She has been part of my life team for the past five years! She is family! I could tell that it was as hard for her to tell me as it was for me to hear. How many doctors offer to give you their personal contact info? Please pray for whomever she chooses to be my new doctor. There will be amazing, fast paced shoes to fill! We have her until the end of the year….

As for us, please pray for our hearts. We’ve been here before. It was scary the first time when we had no clue. It’s scarier now when we do. But God continues to walk beside us, pick us up when we’re tired, carry us when we’re weak, remind us of His love, care, and peace. Our desire, our prayer is for time. He has graciously given it so far. We humbly ask again.



Then there was the baggage.