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

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