Thursday, June 30, 2011

CAL-101 Update: Marian (Completion of Cycle 10)

Great news today. Marian's white count came down to normal this visit. You may recall from previous blog posts that her white count went up at her May doctor's visit and up a little more when it was checked by her PCP in Evansville two weeks later. We were wondering if she was not responding to the 100 mg. dose of CAL-101 as well as her initial dose of 150 mg. But perhaps those three weeks of not taking it (while recovering from pneumonia) or possibly an infection in her body caused the WBC increase. Whatever the case may be (and all my guessing is just that; pure speculation), today's results were great.

Here are the numbers:

WBC:     5.8
ALC:      3.5
Neuts:     2.0
RBC:      4.02
HGB:     10.7
HCT:     36.8
PLT:      185

Obviously, everyone is pleased with her response and Marian will continue on CAL-101 at her current dosage. She says she feels great and only has one complaint. She has a lot of body aches and pains. After her pneumonia, she had some signs of achilles tendonitis (which can be a side effect of Levaquin). But that has cleared up. This is more of a "hurting all over" that she says is hard to describe. She has been wondering if it could be a side effect of treatment or one of the prophylactic medications she takes to protect her body from infection. It's difficult to pinpoint the cause. Many CLL patients have body aches (John does). And Cheryl (our nurse practitioner) said that it could also be associated with the study drug. It's hard to say whether it's the CLL or the treatment, since many CLL patients experience similar aches and pains prior to receiving any treatment at all. Marian did not have these aches and pains until after her pneumonia. And she began CAL-101 therapy in early October.

Another factor is also her age. She will be 79 in October. Her aches and pains have come on seemingly out of nowhere. She has always been so vibrant and youthful for her age. And she still is. If you met her, you would not guess her age. You would be more likely to guess her a decade younger. But we have been reminding her that aches and pains often accompany the natural aging process and she's been pretty fortunate to enjoy such youthful vibrancy for all these years. It's possible she would be feeling her age a little more even if she didn't have CLL. I don't have CLL. I'm 52. And I have exercised religiously for the past 21 years. But I am noticing aches and pains I never had in my forties.

All that being true, I sometimes feel a little guilty for reminding her of her age. I have a feeling I'm not going to want to hear, "You have to remember, you are almost 80 years old" all the time, either!

So ... I'm trying to listen and empathize more rather than simply chalking up whatever can't be diagnosed to getting older!

However, there is a lot to be thankful for considering aches and pains are her only problem right now. And we ARE thankful!

Monday, June 27, 2011

It's been a while...

I am always reading, but it's been a while since I was so impacted by a book that I felt compelled to write about it on my blog. This picture displays my nightstand stack of current reading. In case you can't read the titles, the top book is Allen Jackson's recently published "Freedom from Worry";  Mackenzie Phillips' "High on Arrival"; George W. Bush's "Decision Points"; and "The Wisdom of Menopause" by Dr. Christine Northrup.
I wonder if you can guess which of these I could not put down and wound up finishing first. (My stack also reflects my chronological stage of

My favorite reading is non-fiction. I don't have a particular favorite genre other than my preference for what is real over what is pretend. I love a true story. I love history. I love biographies of all kinds. I love all kinds of spiritual books, from apologetics and theology to challenging inspirational reads. And I enjoy reading about health and fitness. I read to learn rather than to escape. That's why I'm not drawn to fiction. Even on the beach, I would rather read a biography or memoir than a novel.

There's nothing wrong with reading for escape or distraction or entertainment. Reading is probably one of the best and most productive ways to escape from reality or be entertained. But I am drawn to reality and learning. And I learn from every true story I read. I also find that I frequently relate to the people I'm reading about -- as a human being -- no matter how different the details of our lives may be. Whether it's Ben Franklin or Eric Clapton, there are just so many things about we mortals that are common to all of us.

It's always fascinated me how we can all be so unique in so many ways, and yet so much the same. Just like the human face ... We all have the same features (eyes, noses, mouths, ears, chins, cheeks, etc.) and yet we all have such different features. Our bodies are intricately the same in details of functional anatomy and yet intricately unique in composition, shape, strength, beauty, etc. I know the world is filled with unbelievers. I just don't understand how anyone can explain the amazing intricacies of nature, of the human body, of the solar system, of the ocean ... and explain it away as something that just happened from nothing without a Creator, a Designer, a Higher Power. Some don't have enough faith to believe in God. I don't have enough faith to disbelieve. But that is another subject altogether.

All four of the books I have been reading are great books. I read half of my pastor's book in one sitting. I'm enjoying it very much. But since I have heard most of what is in his book in person, in the form of weekly sermons, the material is not new to me. And I am not struggling currently with worry and fear. So, yes, I have been able to put it down.

I have learned a great deal about George W. Bush and his challenges both personally and politically. But since politics do not totally captivate my interest, I am able to read sporadically. I've been reading it for quite a while. It's a very thick book. And I have two chapters left.

I read very sporadically about menopause now. I notice something happening to me and I go to my book or the Internet to find out of it is a common symptom of my current stage in life. I had hot flashes for two and a half months, then they stopped as suddenly as they started. I haven't been having hot flashes for weeks. I got all excited and started thinking that maybe I am just one of the lucky ones who defy logic, who sail through menopause almost unaffected. Maybe I'm just done and it's over rather uneventfully. "Wouldn't that be amazing and great?"... I started to hope. And I still hope that is true for me. But after doing some research, I've discovered that this temporary reprieve does not mean that I'm done or I will never have another hot flash. It appears they can stop for months or even years and then return ... for months or years. The one thing I'm definitely learning about menopause is that it is a lot like CLL in one specific way; it is not identical for any two people.

So now, by process of elimination, you know which book I was unable to put down. Mackenzie Phillips grabbed my heart and took me with her on a life journey I could never even imagine living. I ordered her book after seeing her on Oprah because I felt such a connection to her in that interview. Although the details of our lives are so very different, I related to her in two major ways. She is a daughter who craved an emotional connection with her father which always eluded her. And she was rejected by people she loved for writing openly and honestly about her life. All the details she shared (in a loving and respectful way, I might add after reading her book) were known and acknowledged as truth in private. But it was completely unacceptable for her to reveal the truth to outsiders. Even though it was her life; her story of who she was and how she came to be who she was, she was expected to keep it all hidden as an act of loyalty. Even if through sharing she could help others deal with their own struggles, baggage, and shame, she was still expected to protect and be loyal to an image instead. I so strongly related to that pain and rejection, even though the lives we each have written about are so incredibly different.

Last night I was reading a comment thread from someone's FB page and noticed that there were comments (from people I am related to) that were blocked from my view. It was obvious. Whenever I read a response to someone who "isn't there" in the thread, I am confronted with the reality that this person has such strong negative feelings that they have gone to the trouble of blocking me. It isn't enough that we are not FB friends. They obviously do not want to see me or for me to see them even in a comment thread of a mutual friend. I have been blocked by two past friends that I once considered to be my very closest friends. And I have been blocked by a few members of my extended family. When I first made these "discoveries," I felt a pain in my heart. I felt rejection. I knew why I was blocked. I was disloyal. I made them uncomfortable. And in their view I had betrayed and hurt them by expressing my convictions and telling my story. It doesn't matter that I wrote the truth and did not embellish a single fact. It doesn't matter that I wrote in love. It doesn't matter that my book is completely void of malice or anger. It doesn't matter how carefully I protected people's identities or left out hurtful details that would make someone look like a monster. The only thing I could have done to stay in good standing with certain people was to be silent.

When I discover that I've been blocked today, there is still a sad feeling that accompanies the realization. I don't feel good about it, by any stretch. I can't say that it just rolls off my back and doesn't bother me at all. But it bothers me much less than it once did. I remind myself that just as I have claimed the freedom to share my past and what I have learned from it (for both the cathartic benefit to myself and the benefit to others who relate to me), I have to allow those who turn away from me the freedom to reject me for it. I don't have any right to expect them to accept me, like me, love me or have a desire to interact with me. Even if they are my family. There are repercussions, positive and negative, to every choice we make in life. I made a choice knowing what it could cost me. And although certain repercussions have been painful, I have never regretted my choice. I believe with all my heart that it was the right choice.

Two people, after reading my book, told me they had a problem with me writing my perspective and calling it the truth. I have reflected on that many times. The two people both had very strong personal reasons for challenging my perspective. Their perspective on specific personal events were different from mine for obvious reasons. I really did take that criticism to heart and pondered it. But ultimately I concluded that all any of us really has is our perspective. And I think I was very clear in my book that I was writing about my perspective. The events I wrote about were factual, not altered by a perspective. I was very careful with that aspect of the book. Very, very careful to substantiate every memory in mutliple ways. However, my feelings and my opinions and how I was affected and what I believed ... those are the perspectives of every human being in any given circumstance. I don't owe anyone an apology for sharing my perspective. Especially when so many readers have shared with me in writing that they held the exact same perspective and felt that I had written their story as well as my own. Some of those readers were people I had never met and still have never met. But I helped them to heal. And I wouldn't trade that for the acceptance of those who have turned away from me. Not even family members. I accept the consequences of my choices. And although I won't ever like the consequences, I have learned to live with them and take them in stride. I'm really thankful for that. It's progress. (Much needed progress, John would say.)

I stil want everyone to love me. But I know that is an unachievable goal in life. I just have to remind myself sometimes that it's not a healthy expectation for any of us.

Although Mackenzie's book includes language I don't use and experiences I can't fathom, I related to her emotionally more than one would expect. And she educated me on the perspective of an addict. I don't have an addictive personality. I very recently expressed to my husband that I just do not understand how any person (even an addict) can make the same wrong choice over and over to pursue such temporary relief and numbness when they know the lasting consequences that follow the temporary relief. His response: "That is because you are not an addict."

I was so moved by Mackenzie's life. She is not simply a celebrity or an addict to me. She is a person. We were driving home yesterday from a spur of the moment weekend getaway. I was reading parts of the book out loud to John and I got choked up at one point, reading a depiction of John Phillips teaching his daughter how to shoot up. There is something about reading aloud that makes it even more real. I stopped reading. I started to cry as I asked my husband rhetorically how any father could intentionally guide their own child into such self-destruction? It goes against nature. My heart broke for her.

I finished the book this morning. And as I read of the consequences she has faced by telling her story, I couldn't understand how her family was able to forgive all the betrayals of her choices EXCEPT the choice to reveal family secrets. Even when doing so helps so many other hurting people to feel less alone. It is so sad to me that image is such a prized possession in life. We value it sometimes more than people. I hate that. I don't ever want to be guilty of that. Even if I'm the one being tarnished. I always want a hurting person to matter more to me than how I look.

I loved the way Mackenzie described her relationship with her son toward the end of the book. I could have written this myself. It's true of the relationship I have with my own son. And it's something that brings me a great deal of satisfaction. My goal in every relationship is unconditional love and acceptance. Not necessarily approval of another person's choices; but acceptance and love unconditionally because I value the person independently of their choices. And because unconditional love is something I always remember craving. I have that now in many close relationships. I'm thankful that I have been privileged to experience it. And I think I always tried to give my son what I had always longed for.

I felt very good about identifying with Mack here...

"Shane doesn't imitate me. He's not trying to be close to me, because he already is. He can have me for anything, for whatever he needs: emotional support, advice, affection. He knows he doesn't have to do anything to get me. I'm there. I didn't feel that way about my father."

I considered leaving out that last sentence of the quote. Because in no way am I writing about this to diminish my dad. I love my dad. I recently went to see him and we had a really good visit. I left knowing this in my heart: he loves me to the best of his ability. And he has my unconditional love.

We are all flawed. Even the best of us. I think we all just want to be loved and accepted in spite of that. For some of us, it is a stronger desire than for others. And some of us (like me) have to learn through experience that we can endure rejection and be just fine. At this point, I have to be thankful for both the unconditional love AND the rejections I have experienced. You learn things from one that you don't learn from the other ... and vice versa.

I learned a lot from reading "High on Arrival" and I recommend the book. I especially recommend it if you are trying to understand the pitfalls and challenges of dealing with someone struggling to overcome addiction.

Thursday, June 23, 2011

John Update (CAL-101 Clinical Trial)

Today was John's regular check-up with Dr. Flinn. His blood counts are all stable and within the normal range brackets.

Here are the numbers:

 John                        Reference Range
WBC  5.9                       4.6 - 10.9
ALC   3.1                        0.6 - 4.7
Neut   2.5                        2.0 - 7.8
RBC  4.37                     4.04 - 6.13
HGB  14.0                     12.2 - 18.1
HCT  43.7                     37.7 - 53.7
PLT   185                       142 - 424

He did not have to have CT scans this time. After completing the first twelve cycles, he is now able to cut back to scans every four cycles instead of every two. But there are no visible nodes.

During John's examination today, Dr. Flinn remarked about how amazing it is that this lowest dose of CAL-101 is doing for John what FCR (chemotherapy) failed to do. He has been stable for over a year with no side effects or complications. His CLL is not progressing and he is having no issues other than fatigue. Unfortunately, Dr. Flinn said there is really nothing he can do for the fatigue. It's part of having CLL.

The fatigue is not so severe that John cannot maintain his normal routine. He is up every morning before 5:00 a.m. and leaves for work by 6:00. He says he feels best in the morning, but starts to feel himself "running out of steam" by mid-afternoon. At night when he sits down to watch a little TV, he often struggles to stay awake because he is so exhausted. However, he is running on the treadmill at least three nights a week.

He does not have debilitating fatigue. He just realizes that he has to come home earlier these days and make time for R&R. He has not always been so good about that. (I am not just saying this because he's my husband. I have never in my life met anyone with John's work ethic and dedication. He is called a workaholic by many. But I don't think of him that way. He is not always at work because he loves it so much or because he would rather be there than home. He is just incredibly consciencious and hard-working. He takes his responsibility to the business and to his partner very seriously.)

John has also told me that he has occasional days when a "bad feeling" just kind of sweeps over him and he will suddenly feel kind of sick. Sometimes it goes away as quickly as it comes. Other times he feels bad all day. He says, "I guess that is just part of it. I will probably never feel as good as I used to. But I'm thankful I'm doing as well as I am." He has always had a very positive attitude. He took his CLL diagnosis in stride much better than I did initially.

It was about this time in 2007 when John was officially diagnosed. I started reading and soaking up CLL knowledge like a sponge. I quickly learned how important it is to consult with a specialist. I found Dr. Flinn through an online support group just after we had made an appt. to visit the Mayo Clinic in Rochester. I made an appt. to see Dr. Flinn in August but we went ahead with our Mayo consult in July. We mentioned Dr. Flinn to Dr. Zent and he gave Dr. Flinn the highest recommendation. I remember feeling so proud of my research efforts because I had been lecturing John about the importance of being in the care of a CLL specialist and stressing that we should not choose our physician based on convenience. We needed to drive to Nashville to see Dr. Flinn because he's one of the best in his field. There are great doctors here in town, including hematologists. But when you have a CLL specialist only a forty minute drive from your house, it doesn't make sense to go to anyone else. Dr. Zent said some of the very same things to John that I had been saying. Everything Dr. Zent told us at our Mayo evaluation confirmed things I had learned and tried to explain to John. I felt like a world-class caregiver that day. I remember thinking, "Now John will realize that I really do know what I'm talking about." : )

When we met Dr. Flinn in August 2007, we both knew we had found the right doctor. We told him we were not there for another opinion. We wanted John to be in his care. And John has been ever since. Of course, at that time, we had no idea that John's mom would soon be diagnosed with CLL as well (in January of 2008). But when she was, I urged her to establish a relationship with Dr. Flinn also. It only made sense that I would be her primary caregiver and take her for appointments and ultimately treatment when the time came.

Marian's regular appointment is next Thursday. Her WBC has started increasing again -- even on 100 mg. of CAL-101 twice a day. But she feels good and has fully recovered from her bout with pneumonia this past January. She was responding very well to CAL-101 prior to her pneumonia. But she hasn't been getting the same results since Dr. Flinn reduced her dosage. (Reducing her dosage was due to the pneumonia being a possible side effect of treatment. Both CLL and many treatment options compromise the immune system.) I'm not sure at this point whether Dr. Flinn will adjust her dosage or suggest trying something else. But I will post an update when I know more.

Monday, June 20, 2011

Topping off the perfect trip...

Blankets from Photoweavers!
I had these photo throw blankets made for Lexi and Karlie from digital photographs taken during our recent trip to the beach. I just recently came across this company through Groupon. And while we were still in PCB, it hit me that this would be the perfect way to remember all the fun we had.

I let the girls choose the picture and I ordered the blankets Wednesday night. They arrived by FedEx on Saturday. I was amazed that they came so fast. And they turned out beautiful ... except that it is really weird to see your face blown up that big! 

I was excited about delivering the blankets to the girls today. And it was so good to see them. I got used to being with them every day while we were at the beach and I've missed them a lot! I told them I wanted a picture of both of them with the blanket they each chose. And I told them the picture would probably wind up on my blog. I wasn't exactly sure what I was going to write, but as I began this post, I felt inspired to write to them instead of about them. So here goes...

Dear Karlie & Lexi,

I have always felt so proud and so blessed to be your aunt. From the moment you came into the world, you were more special to me than you will ever know. I have so many precious memories of time spent with you, and lots of pictures to preserve those memories ~ like our "model" photo shoots when you were little...
I will never forget getting ready for Danny and Rebecca's wedding together and doing your curls ... one spiral at a time. Hard to believe this was almost nine years ago! And I moved to Murfreesboro just one year later. The only thing I miss is being physically close to my nieces and nephews.
I am so proud of the young women you are becoming. I remember our talks about the importance of being "pretty on the inside." I have no idea if it has anything to do with anything I ever said, but you both ARE so pretty on the inside (in addition to your external beauty).

I am so thankful for the time we spent together in Florida. I hope when you look at your blankets and remember our vacation, you will always remember how special you are to me
and how very much I love you!

Your very proud...
Aunt Shari

Thursday, June 16, 2011

Staying Busy...

You know my days are full when I can't find the time to write on my blog!

Whether I am documenting our CLL experience for friends, family and other CLL patients;
whether I am needing to write as a form of therapy or just wanting to express gratitude;
from grappling with my fears to being overwhelmed with the joys of my life (and all the mundane stuff in between), I love keeping a public journal. And when I don't have time to write, I miss it.

After writing several successive blog posts exuding love and gratitude for John recently, he teased that I was going to need to get some new material or I would be losing readers. I told him I didn't care if I did.

One of the things I enjoy most about keeping a blog is being able to openly express my appreciation for the people I love.

After an amazing week with my sister-in-law and nieces, I was eager to write about what the trip meant to me. But I've been so distracted by other commitments and activities ever since getting home last Saturday night, I just haven't had a chance. Thankfully, they have all been fun distractions (including having my daughter-in-law and grandsons spend the last two nights with us).

Right now I need to finish cleaning up the remnants of fun left by my one, four and five-year-old munchkins. I need to work out. And I need to do some web writing so I don't lose my wonderful new part time job! I have another busy week coming up. Volunteering tomorrow. Father's Day dinner with the kids Sunday. And an old friend is coming to visit me from Monday through Wednesday of next week!

So ... I don't know exactly when, but I'll be back to my routine soon!

Sunday, June 12, 2011

Ask me if I had a great time...

...And I'll just show you this picture.
I think the smiles on our faces speak for themselves!
These are my two oldest nieces, Karlie and Lexi, and my sister-in-law Cheryl (who is more like a sister than a sister-in-law). We added some treasured memories to our "treasure chest" of existing memories this week!

Wednesday, June 8, 2011

These lyrics always remind me of John coming into my life...

...And he sent you along like a summer day
With a blue-sky smile on your funny face
And a bird flew by singing eveything's gonna be, ok yea
So we laughed all day with the man in the moon
And we thanked the good Lord for the afternoon
'Cause he showed me His love by sending me you
And it's ok now
Everything's ok
(From "Everything's OK" by Chris Rice)

Having a great time in Florida. Listening to this CD in the condo as I get ready to go from the beach to dinner with my sister-in-law and nieces. Savoring every moment and getting tears in my eyes thinking about how God has blessed little ole me with the world's best husband and the happiest life I could ever imagine.

Thank you, Sweetheart, for all the ways you show your love for me.
I am one lucky woman.
Blessed beyond anything I could ever deserve!
And I will tell anyone who will listen (or read)!

Saturday, June 4, 2011

Taking Time to Make Memories!

I doubt I will be blogging at all this week. I am going to the beach with my sister-in-law and teenage nieces. And other than a few Facebook updates and pictures, I'm determined to take a break from being so connected. I want to enjoy every minute of our girl time. The older we get, the more we realize how precious our time is!

I am so excited about our trip. And I'm sure there will be a blog post soon after I'm home. (John ordered a new laptop for me yesterday and it will be waiting when I return.)

Yesterday was Brittany's birthday. She would have turned 26 years old had we not lost her in 2003. We think about her and talk about her a lot. I have written about her on my blog before and I wrote about her in my book. But it dawned on me this morning, after sharing pictures of her on Facebook yesterday, that I should have a picture of her on my blog. So I'm adding one to the side margin. It is one of the last pictures taken of her. She graduated from high school the Friday before she died.

We know we will see her again. But we will always miss her until we do. The first year John and I were married, I had a collage of portraits done (from pictures of Brittany) by my very artistic friends, Terra and Jessica...

The poem in the middle was written for the collage by another friend of mine. It says:

Until again we meet,
Where breath is obsolete,
You adorn our souls,
And greet the One we seek

Take time to enjoy each moment.

Make lasting memories.

And love with all your heart!

Wednesday, June 1, 2011

CAL-101 Personal Experience / Phase I Study

The other day I was reading about the first published results of the CAL-101 Phase I Study which my husband is enrolled in. The article is "CAL-101 Update: half full glass." As I was reading, I realized I had some answers to some of the questions posed (based on personal experience) and thought it might be helpful for me to comment on my blog. My remarks are never intended as medical advice. But I have benefited (as a patient advocate for my husband and mother-in-law) from the sharing of other patients' personal experiences. And I consider it my personal responsibility to share our experiences for the benefit of others.

Background Info (in case this is your first time reading)
My husband entered the CAL-101 study for previously treated/relapsed and refractory patients after receiving no remission from Rituxan alone and then six rounds of FCR (+ experimental Lumiliximab). The hope was that Lumiliximab would enhance FCR and result in a longer remission. The addition of Lumi did not produce those results and that trial was discontinued. But FCR has been the Gold Standard CLL treatment for quite a while and Dr. Flinn's expectation was that John would get a decent remission from it. He was diagnosed in 2007 and his biggest issue was bothersome bulky lymph nodes throughout his body. He would not have required treatment if not for his lymph nodes. His WBC was high for a normal person, but not that high for someone with CLL. And his only symptom other than lymphodenopathy was fatigue (which was tolerable).

John sailed through his first infusion of Rituxan without suffering any of the potential reactions. But when we left, he passed out cold in the elevator from tumor lysis syndrome. With the help of other people in the elevator, I got him back in the doctor's office waiting room where he passed out a second time (sitting down this time). This was one of the scariest moments (perhaps THE scariest moment) of our entire CLL journey. I really thought I was losing him the second time he lost consciousness. But he revived quickly and started making jokes to Dr. Flinn the minute he came to. We practically flew John (Dr. Flinn, the attending nurse and myself) by wheelchair to the ER. He was monitored for several hours and was just fine. So the weekly Rituxan infusions were continued. Unfortunately, Rituxan only worked on his blood and did not produce any lasting relief from the lymph nodes.

The next year John tolerated the swelling, occasionally taking small doses of prednisone for temporary relief. We were trying to avoid chemotherapy for as long as possible. I had read about all the possible risks and side effects (toxicity, damage to his immune system) and even the possibility of transformations from treatment. I was not gung-ho to do FCR and I knew that while it produced great remissions for some, there was no guarantee. When John decided he wanted to have this treatment, I tried to be as upbeat and positive as possible. But I knew there was a chance he could subject his body to that toxicity and not get results.

While he did get some reduction of the nodes during the six months of chemotherapy, they did not completely shrink and they began swelling again within two months of the last infusion. That was a pretty discouraging time. He had failed the Gold Standard CLL treatment. Now stem cell transplant was on the table. (And to say I was not excited about this option would be an understatement.) I had done a lot of researching, investigating and reading personal experiences. I knew SCT was not a magic bullet. Yes, there are some exciting success stories. But there are some very serious complications and risks that can greatly reduce quality of life. And sometimes patients die from complications of the transplant itself. After John's very disappointing lack of response to FCR, I didn't have the highest of hopes that he would be one of the great success stories. (I am not a pessimist, but definitely a realist when it comes to treatment choices. Since John was first diagnosed, I have taken the responsibility for doing the research and learning necessary to make sure John at least makes informed decisions.)

It was around that same time that I was starting to read about a new drug called CAL-101. I had made a CLL friend online (CLL Christian Friends) who also had the struggle John had with lymphodenopathy. He was actually in worse shape than John. He had relapsed from previous treatments and was told (if I'm remembering correctly) that he probably would not see the end of 2011. He was facing the probability of stem cell transplant being his only hope when he was accepted into the CAL-101 Phase I Study at OSU. And immediately after starting CAL-101, he began improving and getting relief from not only the lymph nodes but from the severe fatigue that had necessitated his early retirement from a job he loved. This friend (also in his fifties) was sharing about his dramatic results on CLL Christian Friends. And he even took the time to email me and share his very honest opinion about transplant. He strongly urged me to pursue getting John into the CAL-101 trial and provided me with contact numbers and other info.

I wasn't sure if Dr. Flinn was participating in the same trial. I knew he was involved in CAL-101 clinical trials as combination therapy (with Rituxan and chemotherapy drugs). But my gut feeling was that John should do CAL-101 alone. He had already received Rituxan twice without benefit. And he had just failed chemo. So why infuse drugs into him that we already knew had not proven helpful to him? I ask lots of questions and express my own opinions at our visits with Dr. Flinn. It's never bothered him. He answers my questions thoroughly and never makes me feel like I'm taking up too much of his time. I've cried in the exam room and we've also had a lot of laughs. I have never met a better doctor and I love his staff. So I didn't want to go anywhere else. But I was willing to go anywhere if it meant John being able to try CAL-101 alone. Before our next appt. with Dr. Flinn, I had an appt. lined up at OSU with Dr. Byrd (just in case CAL-101 alone was not an option with Dr. Flinn). I can't stress strongly enough, I had no desire to be in the care of anyone other than Dr. Flinn. We love Dr. Flinn. But I felt that John should try CAL-101 before considering transplant.

At our next appt., I brought up the CAL-101 trial with Dr. Flinn and told him I had contacted Dr. Byrd's office just in case we needed to travel to get John in it. He said that he was participating in the same trial and, if that's what we wanted to do, he would try to get John enrolled. We waited about three weeks and finally received word of his acceptance into the trial. Right after he was enrolled, this trial was closed to new CLL patients. I did not know (until reading the initial findings published on CLL Topics) that there were only 54 patients enrolled in this study. John started CAL-101 (May 2010) at the lowest dose (50 mg. twice a day) and has gotten excellent results with -- so far -- no toxicity or side effects. I am aware that this dose doesn't work for every patient. But it has for him. CAL-101 has been a miracle drug for John so far.

Other than still battling some fatigue as the day progresses, John has no symptoms. He has made adjustments (like coming home earlier), but he still works six days a week unless we go out of town. And he is back to running on the treadmill regularly. His lymph nodes started to reduce within days of his first dose. (We saw a difference after the first day.) They continued to shrink to almost normal size and have remained stable ever since. He is now in the rollover phase of the study (after completing the first 12 cycles) and will continue on CAL-101 as long as it keeps working.

Details relating to the trial results:
  • The median age of the study group is 62. John turned 57 in March. He was diagnosed at 53.
  • Some of the other patients in this study have been more heavily treated than John.
  • John does not have the 17p deletion. He has all good markers with the exception of being unmutated (which is considered a poor prognostic marker).
  • John never experienced the rise in white count that many patients initially have on CAL-101.
  • John has not had a subsequent bone marrow biopsy, but at the beginning of the study his bone marrow was only 20% infiltrated. (My mother-in-law is in another CAL-101 study in combination with Rituxan. She is 78 years old and was previously untreated. Her bone marrow was 80-90% infiltrated at the beginning of treatment and a recent BMB showed that her marrow infiltration has been reduced to 30% after the first six cycles. Since there was no mention of bone marrow status in the abstract cited by CLL Topics, I thought this might be useful information to share.)
My mother-in-law started CAL-101 at the 150 mg. dose (twice daily) in October 2010. She developed a severe case of pneumonia in January (diagnosed as bronchitis by her primary care physician). Of course, we now know that 24% of patients in the first trial also developed pneumonia. So she will be included in that statistic in her study group.

Marian is fully recovered (after two weeks in the hospital, including three nights in ICU) and is doing well. She says she feels great and is back to her normal routine. (She is a very vibrant and youthful 78!) Dr. Flinn took her off CAL-101 until her pneumonia ordeal was over. I think she missed about three weeks of medication. And she resumed CAL-101 at a reduced dose of 100 mg. (twice daily). At her last visit, it appears that the 100 mg. dose is not working quite as well as 150 mg. Her WBC has started to increase again. Her next evaluation is at the end of June and I will give an update on her status at that time.

For any CLL patients reading this, please feel free to ask me any questions you may have either here in the comment section or by private email. My email address is I am always more than happy to communicate with other CLL patients and caregivers. I enjoy hearing from readers!

As always, I hope this information is helpful to someone.