Yesterday was a frustrating day at MDA. Results from my bone marrow biopsy were inconclusive on the day that we had thought that we would decide on the next steps in my treatment plan. Instead, we would have to wait until the cytogenetics (FISH) results came back and probably reschedule another BMB. :/
In addition to the delay because of incomplete tests, my new leukemia doctor had a conversation with my stem cell doctor and encouraged her to look at me from a different perspective. From a leukemia doctor’s perspective, I am not at a stage that he would recommend treatment. From a stem cell doctor’s perspective, I am relapsed, no longer in remission, and we need to fix that! I have leaned toward my stem cell’s doctor’s view because I like NOT having leukemia!! But after researching my most recent alternatives, the risks seem to far outweigh the benefits at this stage of the game.
The leukemia drugs have shown some positive results but come with some rather unpleasant side effects. The positive here is that you simply stop the drug and you stop the side effects. The negative is that it is not a “cure.” It is a help. It helps people stay alive with CLL, which is a good thing. The DLI (donor lymphocyte infusion) would provide a way back to remission, but the possible GVHD side effects cannot be stopped by taking something away. It’s like a runaway train. It can possibly be managed with steroids and other drugs. But it can be a lifelong issue or it can take your life. There is no way of knowing until you get there.
Those of you who have been following me from the beginning may remember that I had a unique negative “marker” originally called 17p deletion, which is what pushed us forward with the more aggressive treatment plan early on. It appeared that the transplant remedied that issue even though my CLL returned. However, we have recently been told that it might not be a certainty because they are only looking at very small percentages of my cells. They may have just not SEEN the 17p deletion yet. ☹ With that in mind, the recommendation is to “watch and wait” until my CLL grows or until my 17p deletion pops up again. At that point, there would be no question as to what to do. It would have to be the DLI.
I was reading an article this morning about relapsed CLL treatment options and it referred to the “watch and wait” course as “watch and worry.” I completely understand! While I have determined every day to lay this at the Lord’s feet, it does require a daily decision. Some days are easier than others. This has been a rough stretch. But I know that worry will not add a day to my life. (Matthew 6:27; Luke 12:25) So we will continue as we have…to take this one day, one prayer at a time.
“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
May 19, 2015
May 14, 2015
Keep Believing!
I texted Paul and told him, and he just said “I will fix it.” I told him that it was REALLY broken, but he said that he would do his best. Later that afternoon, I got home from the store and Paul had already gotten home from work and had my “Believe” sign patched up and drying in the garage. He said that we would have to wait and see how it turned out. Because it is a curvy piece, he couldn’t just clamp it like he does other pieces he works on. He had to hold it together gently and give it time to set before he could tape it together for the final drying time. It took patience. It took time. It worked. You can see where it was broken if you look closely, but I just touched it up with a little permanent marker and it is going back up where it belongs.
God is like that with us. We have fallen. We are broken. Some of us are in pieces. We look and think that there is no hope of ever being put back together. But God is patient. He holds us gently while He works with us. Then He gives us the time we need before setting us back out where we can feel mended and useful again. There may still be a few cracks, but that’s ok. God’s permanent marker works quite well. And those cracks are a reminder of what He has brought us through.
“May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.”
Romans 15:13
“But these are written so that you may believe that Jesus is the Christ, the Son of God, and that by believing you may have life in his name.”
John 20:31
“Let not your hearts be troubled. Believe in God; believe also in me.”
John 14:1
“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 41:10
May 13, 2015
Tough Choices
When I was a little girl, I used to love to watch the game show, Let’s Make a Deal, and the host would ask the contestant to choose between what was behind Curtain #1, Curtain #2, or what was in The Box. It was always a gamble. Sometimes they would get a car. Sometimes they would get a camel.
When I was first diagnosed, Paul and I were very confident about the direction we were going to take for my treatment. We had done the research. We knew the risks. We knew we were choosing the aggressive option, but we were confident that it was the right decision. And we were right. My doctor confirmed that just a couple weeks ago. Even though I am no longer in remission, my stem cell transplant bought me three years and apparently got my 17p deletion under control.
Now my stem cell doctor and leukemia doctor have offered three different treatment plans for consideration. Knowing us as they do, they told us to go home and research all of them and we would discuss the pros and cons next Monday at my appointment with my stem cell doctor. Mother has been going to all of my appointments with me these last months, but Paul will be going to this one as well. Paul has begun the in depth research as he always has in the past and I have started mine. We have talked at length. But so far we do not have a clear answer on this one. The risks are rough on all three. I have ruled out one because it has a tendency to lead to Richter’s syndrome, which is what led to the death of my buddy, Dave, so I simply just can’t.
The DLI (donor lymphocyte infusion) is different than the stem cell transplant in that only lymphocytes or T-cells are used…not the whole cell. Not only do they help fight infections but they are also able to recognize abnormal or cancerous cells and kill them.
The DLI is an effective treatment for minimal residual disease and to treat mixed chimerism, meaning that most of my cells are donor cells but some are still my old ones, which need to go away!
The DLI sounds like it would be the obvious choice, but it has a very high risk of GVHD (Graft versus Host Disease). There was the risk for this with the SCT as well, but not as high as the DLI because there is no chemo used in this procedure. Some GVHD is manageable. Some GVHD is life threatening. It is a lot to consider.
The leukemia drug, a targeted therapy, would simply manage it, not cure it. But the side effects are brutal. Or I could do nothing and wait until my leukemia is worse and take my chances on enjoying quality of life.
So do we take what’s behind Curtain #1, Curtain #2, or what’s in The Box? Please be praying with us. Pray for clear guidance from God. Pray for peace in whichever decision we make. We had that the first time. We are praying for that this time.
“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 25:4-5
“Let me hear Your lovingkindness in the morning; for I trust in You;
Teach me the way in which I should walk; for to You I lift up my soul.”
Psalm 143:8
“I will bless the LORD who has counseled me;
Indeed, my mind instructs me in the night.
I have set the LORD continually before me;
Because He is at my right hand, I will not be shaken.”
Psalm 16:7-8
“I will instruct you and teach you in the way you should go;
I will counsel you with my loving eye on you.”
Psalm 32:8
When I was first diagnosed, Paul and I were very confident about the direction we were going to take for my treatment. We had done the research. We knew the risks. We knew we were choosing the aggressive option, but we were confident that it was the right decision. And we were right. My doctor confirmed that just a couple weeks ago. Even though I am no longer in remission, my stem cell transplant bought me three years and apparently got my 17p deletion under control.
Now my stem cell doctor and leukemia doctor have offered three different treatment plans for consideration. Knowing us as they do, they told us to go home and research all of them and we would discuss the pros and cons next Monday at my appointment with my stem cell doctor. Mother has been going to all of my appointments with me these last months, but Paul will be going to this one as well. Paul has begun the in depth research as he always has in the past and I have started mine. We have talked at length. But so far we do not have a clear answer on this one. The risks are rough on all three. I have ruled out one because it has a tendency to lead to Richter’s syndrome, which is what led to the death of my buddy, Dave, so I simply just can’t.
The DLI (donor lymphocyte infusion) is different than the stem cell transplant in that only lymphocytes or T-cells are used…not the whole cell. Not only do they help fight infections but they are also able to recognize abnormal or cancerous cells and kill them.
The DLI is an effective treatment for minimal residual disease and to treat mixed chimerism, meaning that most of my cells are donor cells but some are still my old ones, which need to go away!
The DLI sounds like it would be the obvious choice, but it has a very high risk of GVHD (Graft versus Host Disease). There was the risk for this with the SCT as well, but not as high as the DLI because there is no chemo used in this procedure. Some GVHD is manageable. Some GVHD is life threatening. It is a lot to consider.
The leukemia drug, a targeted therapy, would simply manage it, not cure it. But the side effects are brutal. Or I could do nothing and wait until my leukemia is worse and take my chances on enjoying quality of life.
So do we take what’s behind Curtain #1, Curtain #2, or what’s in The Box? Please be praying with us. Pray for clear guidance from God. Pray for peace in whichever decision we make. We had that the first time. We are praying for that this time.
“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 25:4-5
“Let me hear Your lovingkindness in the morning; for I trust in You;
Teach me the way in which I should walk; for to You I lift up my soul.”
Psalm 143:8
“I will bless the LORD who has counseled me;
Indeed, my mind instructs me in the night.
I have set the LORD continually before me;
Because He is at my right hand, I will not be shaken.”
Psalm 16:7-8
“I will instruct you and teach you in the way you should go;
I will counsel you with my loving eye on you.”
Psalm 32:8
May 2, 2015
May 2, 2015 - Today is my 3-Year Re-Birthday!
Three years ago today, I received my life giving cells from a postman from Massachusetts. Even though I am no longer in remission, it saved my life! The 17p deletion chromosome issue I had was something that would not respond to any treatments at the time. The SCT was the answer, and it came through!
When I was diagnosed, I had only been married to my high school sweetheart for one year. We are now about to celebrate our fifth anniversary. At that time, I only had one grandchild with one on the way. We are now about to welcome our sixth grandbaby in May. There have been a lot of changes in life. This “new normal” is real and has been difficult at times to get used to. But the alternative would not have given me this time with my family. There are no words to express my thankfulness and gratitude.
I have been able to spend more time with the Lord and in the Word than at any other time in my life. I see life differently. While there are times that I miss my fast pace past, this slower walk through life helps one not miss things that might be more important than the menial things that distract us. However, the times of aloneness because of a lowered immune system has been one of the most difficult to bear. So, I painted the house! ☺ It took several weeks of coaxing my doctors and them following my level of fatigue, but they finally agreed…using the no-fume kind. Of course, Paul was busy with me almost every evening after he got home from work. Bless his heart! He’d do anything for me. He loves me more than I deserve!
As we celebrate this day of life, we are looking at more possible procedures. My body just doesn’t seem to want to cooperate. The CAR T-Cell reduced the minimal residual disease (MRD), but did not get rid of it…did not bring about remission. So the team at MD Anderson is re-contacting my Postman to see if he would consider re-donating cells for a DLI (donor lymphocyte infusion). He was a PERFECT match, so it would be wonderful if he would give again. It’s like a mini-transplant without the chemo. I’ll keep you up to date.
But today I’m alive and choose to focus on the beauty around us. I take one day at a time and enjoy each moment…whether I’m painting our house, spending time with my sweetheart, getting to see family or friends, or alone with my God. Joy comes from within. And it has nothing to do with cancer.
The LORD is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him.
Psalm 28:7
Oh give thanks to the Lord, for he is good, for his steadfast love endures forever!
Psalm 107:1
When I was diagnosed, I had only been married to my high school sweetheart for one year. We are now about to celebrate our fifth anniversary. At that time, I only had one grandchild with one on the way. We are now about to welcome our sixth grandbaby in May. There have been a lot of changes in life. This “new normal” is real and has been difficult at times to get used to. But the alternative would not have given me this time with my family. There are no words to express my thankfulness and gratitude.
I have been able to spend more time with the Lord and in the Word than at any other time in my life. I see life differently. While there are times that I miss my fast pace past, this slower walk through life helps one not miss things that might be more important than the menial things that distract us. However, the times of aloneness because of a lowered immune system has been one of the most difficult to bear. So, I painted the house! ☺ It took several weeks of coaxing my doctors and them following my level of fatigue, but they finally agreed…using the no-fume kind. Of course, Paul was busy with me almost every evening after he got home from work. Bless his heart! He’d do anything for me. He loves me more than I deserve!
As we celebrate this day of life, we are looking at more possible procedures. My body just doesn’t seem to want to cooperate. The CAR T-Cell reduced the minimal residual disease (MRD), but did not get rid of it…did not bring about remission. So the team at MD Anderson is re-contacting my Postman to see if he would consider re-donating cells for a DLI (donor lymphocyte infusion). He was a PERFECT match, so it would be wonderful if he would give again. It’s like a mini-transplant without the chemo. I’ll keep you up to date.
But today I’m alive and choose to focus on the beauty around us. I take one day at a time and enjoy each moment…whether I’m painting our house, spending time with my sweetheart, getting to see family or friends, or alone with my God. Joy comes from within. And it has nothing to do with cancer.
The LORD is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him.
Psalm 28:7
Oh give thanks to the Lord, for he is good, for his steadfast love endures forever!
Psalm 107:1
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