Tag Archive: trials


I hope all of you SLL/CLL and CLL patients are doing well. Lot of great news in the advancements of new medicines. Iburtnib has been giving good results, and has been approved for sale in the USA. It had been approved originally, for only chromosome 17p patients, but I believe it now approved for all chromosome deletions. Please correct if I am wrong on the approval for all patients. Also I have been reading that a Phase 1 trial of second generation BTL inhibitor, ACP-196, and has been demonstrating some very good results.

DATE WBC HGB PLT ALC Lymphocytes/
12/26/10 15.6 12.8 87 4.3 100 Leukocytes
01/10/11 15.8 13.3 112 4.3 27.00%
01/19/11 11.7 13.1 78 4.2 36.00%
02/17/11 12.5 13.7 87 4.5 36.00%
05/12/11 11.6 11.9 77 5.5 47.00%
08/08/11 13.3 12.4 85 7.63
09/08/11 18.5 12.9 63 13.5
10/20/11 15.7 12.1 60 8.6 55.00%
12/21/11 13.4 11.9 64 7.85 58.00%
01/06/12 12.5 11.7 63 62.00%
01/26/12 11.1 11.1 62 8.4
04/26/12 11 11.4 54 7.4 67.00%
05/25/12 11.7 11.1 53 8.1 69.00%
06/22/12 12.4 11.4 59 8.7 70.00% Started eating
08/19/12 9.7 10.7 63 5.9 Bitter
12/03/12 9.1 11.1 73 5.1 55.00% Apricot Seeds
03/04/13 6.1 10.3 63 2.94 48.10% 06/02/12
06/03/13 6.6 11 72 2.6 44.20%
08/08/13 6.4 11.1 101 1.89 29.70%
09/05/13 5.8 11.9 88 1.59 27.40%
12/05/13 5.5 12.7 88 1.29 23.70%
03/05/14 5.8 12.8 80 1.21 20.70%
08/14/14 3.9 12.8 85 0.89 22.60%
09/05/14 6.8 12.7 80 0.92 14.50%
Normal WBC Normal HGB Normal PLT Normal ALC Normal Ly
4.0-10.6 12.8-17.0 150 1.0-3.7 16.2% to 48.2%

As you can see from my last results, my blood readings are staying fairly close to normal, with the exception of course, my platelets. My lymph-nodes went back to normal well over a year ago, and are still that way. My spleen is just a bit enlarged over normal, but undetected to the touch.

I have cut back from eating 18 bitter apricot seeds, to 15 a day. I would like to see my ALC numbers get back into the normal range. Even though they are low, I see that my white blood cell count is in the normal range, and I am thankful that I have no infections, nor illnesses, like any of the current bugs, that are going around. With all of the illnesses around me, I think of Psalms 91:1-4 (AMP). He who dwells in the secret place of the most High shall remain stable and fixed under the shadow of the Almighty (Whose power no foe can withstand). I will say of the LORD, He is my refuge and my fortress: my God; in him I lean and rely, and in Him I (confidently) trust. Surely he shall deliver thee from the snare of the fowler, and from the deadly pestilence.

All in all, I am feeling fantastic. I will be seeing my Oncologist in March, I am looking forward to seeing what my blood counts will be.

Peter said, “Repent and be baptized …………” If you were like me, you were told that this meant that you first change the way you do things, then you get baptised for the remission of sins. However the Greek word used for repent is matanoeo, which means to change one’s mind, or to think differently. It has nothing to do with changing things, but thinking differently (or changing your way of thinking.)

What man of you, having a hundred sheep, if he has lost one of them, does not leave He ninety-nine in the open country, and go after the one that is lost, until he finds it? And when he has found it, he lays it on his shoulders, rejoicing. And when he comes home, he calls together his friends and his neighbors, saying to them, Rejoice with me, for I have found my sheep that was lost. Just so, I tell you, there will be more joy in heaven over one sinner who repents than over ninety-nine righteous persons wh need no repentance. Luke 15

Wait one minute, where and when did this lost sheep repent? In this whole story, I read no where that this lost sheep repented. This lost sheep did not change direction and try to come home. This lost sheep did not say it was sorry for going astray. This lost sheep did nothing but let his Shepard put him on his shoulders. It was the Shepard who rejoiced. It was the Shepard who carried the lost sheep home. It was the Shepard who calls all his friends and neighbors together asking them to rejoice with him, because he had found his lost sheep.

All this lost sheep did, was to rely on his Shepard to do everything.

So what is repentance? Relying on the Good Shepard, Jesus Christ to do everything. It is changing our minds from what we must do to be saved, to what Christ has done to save us.

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It has been awhile since my last blog, but honestly, I was just not in the proper frame of mind to write anything.

Let me begin by telling you that I had very high hopes of getting into a clinical trial that looked to be the answer to my SLL/CLL 17p deletion problem. My doctor ordered all the tests I needed to send for my approval of entering the trial. I was told that I was perfect for this trial, especially as no other therapies offered good results for me. The day I received my results, and was getting them ready to mail, I received a call from the Chief doctor of the clinical trial, informing me that the trail had been filled, and there were no more spaces for me.

After several hours of concern, doubt, and worry, these words entered my mind. We know that all things work together for good to those who love God, to them who are called according to His purpose.

I say this with humility, but never less it is true. I slept very good that night, and so far every night since then.

I was reminded this morning, of that day, and wanted to share this.

One main problem with walking by faith is it often causes us to worry. Why is that? Well “faith is the substance of things hoped for and the evidence of things not seen.” It is impossible to walk by faith and see or know how something, or for that matter anything, is going to work out. In fact, the more we want to walk by faith the more evidence we see that things are not working out so well. We continually imagine how they could work out, or how they should work out, but usually end up disappointed as one scheme after another seems to fall apart.

I believe this is why Jesus broke this faith business down for us in the Sermon on the Mount. When Jesus calls on us to quit worrying about our lives so much, He uses the analogy of the birds and wildflowers in nature. In this sermon, He illustrates the faithfulness of God to meet our needs continuously. Jesus says, “take no thought of your life, or what you shall eat, or what you shall drink; nor for your body to what you should wear. Is not life more than food, and the body more than clothing.” In other words, stop worrying and scheming to make things happen. Then He talks about God taking care of the birds, and how the flowers grow without having to do anything. Then Jesus concludes with, “if God does this for the birds and flowers, don’t you realize that He will do even more for you, ye of little faith.” He then reminds us that no amount of worry can change us in any way, and calls on us to focus our attention on God’s kingdom and His righteousness instead.                                                                                                              

I know this will sound contrary to most; Christians as well as non-christians. For most of us plan daily to do what is needed to succeed.  But I say that living in these times, being that most are living on the edge, this admonition to stop worrying is just as relevant today as it was when Jesus gave this sermon 2000 years ago.              

Jesus hits the nail on the head when he refers to us as, “ye of little faith”.  Please realize that this statement from Jesus is not so much a rebuke as it is an explanation of our problem. It’s not that we don’t have enough faith (the faith as small as a mustard seed is enough to move mountains), but that we seldom use the faith we have been given. Rather than trust God to do what He says He will do, we prefer to worry, complain, and then attempt to fix the problem as quick as possible. Have you noticed how quickly we forget about things God has miraculously provided for us in the past? That’s because faith must be exercised daily rather than just once in a while.

Jesus knows we are going to worry about our lives each day, so He directs us to “seek ye first the kingdom of God and his righteousness”. Instead of thinking about our own needs and planning how we are going to get them met, we are told to seek the kingdom of God. This is the place where God is in charge and makes all the decisions. Seeking this kingdom means that we actually want and trust Him to decide what needs to be done regardless of what it may mean to us personally. Plus we are to seek His righteousness, meaning that we are to concern ourselves with living out the life of Christ in the midst of our circumstances. Our lives are much more than what we have and experience in this physical world, we who believe in Christ Jesus, are really awesome spirit beings who are inseparably joined to Christ. He may make our life comfortable in this country, by His mercy, but we are not here just to be comfortable and have a good time. We are here to be Christ to others! We are God’s workmanship created in Christ Jesus unto good works which He before ordained that we should walk in them.

Instead of worrying about what is going to happen to me tomorrow, I am called to deal with who I am, and what my purpose is today. Do I have what I need to love others like Christ right now? Can I actually care about others around me today? I have enough problems to deal with today; so I need not worry, nor scheme about those that are coming tomorrow.

Our calling of God in Christ Jesus is summarized by the new command to love others like Christ. That we can do no matter what circumstances we face each day. By exercising that tiny faith I have been given, I attempt to love others believing the promise of God. I’ll attempt to face tomorrow the same way.

My Journey

      This morning I would like to thank all of you who read my blog. I appreciate you taking time out of your busy lives to share a moment with me. I do enjoy writing down my thoughts, joys, fears, hopes, and faith for you to read. It helps me greatly, knowing that others have an interest in what I write.
      My posting today, is directed more to those who are battling the same cancer I am, so it may not be of interest to everyone who may read my blog. However I hope that it will make you aware of what some go through to be able to live a quality life. Many of us go to get our blood drawn every month, and if fortunate, every three months. For me, I really don’t like going to the third floor of the hospital after my blood is drawn. The third floor is where I come face to face with my lymphoma/leukemia cancer. While I am waiting to see my Oncologist, I look in the room I am facing, and see many sitting in chairs, reading, listening to music, or news on their iPhones, all of them have a needle stuck in their arms, receiving chemotherapy. For the fortunate, they will leave feeling okay, but most, will be weak, tired, and unsure of their future. I have not experienced any of that yet, as I have been trying to postpone any chemotherapy that I may have to have. I know it is coming, but I do not welcome that day. I know of it benefits, but am sad that I or anyone else has to have it.
     Many ask, and have asked me, why. Why is there so much sickness, pain, sadness, disease, happening. Why couldn’t God just make everything right. My answer has been, He has, look at Jesus Christ and you will know that. Of course I explain my answer in more detail, but for now, it is suffice to just say Jesus Christ. I have come to learn that believing in Jesus is having faith. I have also found out that evidence (knowledge) points to Jesus, which always increases my faith. Knowledge is true justified belief, and belief must be true in order for it to be considered genuine knowledge. However just because a belief may be true, it does not mean that a person really has knowledge of it. My neighbor said that she just knows it will be beautiful next Sunday. Does she really know this? No, she may believe it, but there is no guarantee that her belief is true. What if it turns out that it is sunny next Sunday, and she says, I knew it would be sunny today. Did she really know, I don’t think so, so even though her belief turned out to be true. She had no knowledge of the future, therefore no good reason for her belief. Unfortunately many today, say they believe in something or someone, without real knowledge of their belief. Even the non-believer believes in not believing, and is also required to exhibit knowledge for that belief. I believe in Jesus Christ because I have a reason for my belief, which is based on genuine knowledge, which in turn increases my faith.
      I am posting information for a new trail that may begin soon. This new trial is for anyone who has exhausted all other treatments for SLL/CLL, as well as those who have not had treatment yet. I have posted only a short description of the trial, however if you are looking for a trial, or if you know someone who is looking to go into a trail, please let them know about this new trial. You can find this at http://clinicaltrials.gov/ct2/show/NCT01500733?term=cll+nih+pci-32765&rank=1  It is not yet open for recruitment, but may open this year (2012).
I am not at that point yet, so my doctor says, but I do ask him about the trials I learn about. At some point he may say yes, and refer me into a trail, but not until it is required.
PCI-32765 for Special Cases of Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphoma
      This study is not yet open for participant recruitment.
Verified on October 2011 by National Institutes of Health Clinical Center (CC)
    First Received on December 22, 2011.            Last Updated on December 29, 2011
Sponsor: National Heart, Lung, and Blood Institute (NHLBI)
Information provided by: National Institutes of Health Clinical Center (CC)
ClinicalTrials.gov Identifier: NCT01500733

Purpose

Background: Chronic lymphocytic leukemia and small lymphocytic lymphoma (CLL/SLL) are types of blood or lymph node cancers that mostly affect the elderly. CLL/SLL both create abnormal white blood cells that hurt the immune system and make it more difficult to fight infections. These cancers are usually diagnosed after age 50; more than half of the people with CLL/SLL are over age 70. Elderly people often do not respond well to standard chemotherapy for CLL/SLL. They may have other health problems that make chemotherapy difficult. In addition, individuals who have a genetic abnormality called 17p deletion also do not respond well to standard treatments for CLL/SLL. Researchers want to test a new cancer treatment drug, PCI-32765, to see if it can treat CLL/SLL in these hard-to-treat groups.

Objectives: To see if PCI-32765 is a safe and effective treatment for CLL/SLL in older people and people with 17p deletion.

Eligibility: Individuals over 65 years of age who have CLL/SLL. Individuals at least 18 years of age who have CLL/SLL and 17p deletion.

Design: Participants will be screened with a medical history, physical exam, and imaging studies. Blood and urine samples will be taken. Optional bone marrow and lymph node biopsies may also be taken.

  • Participants will take PCI-32765 capsules every day for 28 days (one cycle of treatment). Treatment will be monitored with frequent blood tests and clinic visits.
  • PCI-32765 will be given for six cycles of treatment. Those who benefit from the drug will continue to take it as long as there are no side effects and the disease does not progress. Those who do not benefit will stop treatment and have regular followup exams.

There are many trials recruiting, and here is a link to them: http://clinicaltrials.gov/ct2/results?term=chronic+lymphocytic+leukemia&recr=Open

I hope that this will be of some help to others, please, please, if you know someone who has SLL/CLL let them know about these trials.

I would like to say Happy New Year to everyone who is reading my blog. Of course that wish extends to all my friends, neighbors, and family. I may not get to speak to everyone in my family, on this first day of January 2012, due to several reasons. However, if I did, I would certainly wish them the best year that they have ever had. So here is hoping that all my children, grandchildren, and great-granddaughter have the best 2012 ever, and may the years that follow, even be better.

To those who are fighting cancer, I want to wish them a very special new year. May this new year bring you hope, and success. For me, I will be seeing whether I will be in chemo this year for my SLL/CLL. I continue to hope that I  will not, and continue to be healthy enough to put it off for yet another year. Being on watch and wait for some is not acceptable, but for me, I prefer it. I believe the longer my body fights this leukemia, the better off I will be in the long run. But honestly, I realize that it may be a losing battle, but until then, I will defer from chemotherapy.

A very good friend of mine sent me this news article, from FoxNews.com, this morning(1/1/2012) –5 Medical Advances Predicted for 2012 –

Prediction 1: Medicine gets closer to treating cancer with vaccines. Radiation and chemotherapy reign as the go-to treatments for cancer, but for  20 years researchers also have been exploring the use of therapeutic vaccines.  In 2012 that work may come to fruition. “It’s an exciting time for cancer  vaccine development,” said Dr. Larry Kwak, professor and chairman of  lymphoma and myeloma at the University of Texas M.D. Anderson Cancer Center in  Houston.

“What’s especially impressive is the diversity of cancer vaccine. It bodes well for what you’re going to be seeing in the future,” Kwak said. More than 250 clinical  trials of vaccines, including 34 for breast cancer, are under way, according  to the National Cancer Institute.

Like other vaccines, cancer vaccines use a chemical marker of a disease (in one case, a virus; in another, a malignant tumor) to train a person’s immune  system to fight the disease.

But unlike vaccines for the flu or chicken pox, which are preventive, “we  almost uniformly vaccinate after cancer is there,” Kwak said. Some cancer vaccines in development could be administered to many people,  while others – including Kwak’s vaccine for follicular lymphoma – would have to  be tailored to each patient’s tumors.

Kwak’s vaccine has passed Phase III trials and is moving toward the final  steps of regulatory approval.  The U.S. Food and Drug Administration  approved the first cancer vaccine, called Provenge, in the spring of 2010 for  the treatment of prostate cancer. A vaccine for melanoma performed well in the final stages of clinical trials last year. “What ties them together is they are activating the immune system so it’s primed and ready to fight,” Kwak said.

The National Cancer Institute reports there are ongoing clinical trials for  therapeutic vaccines to treat bladder, breast, cervical, kidney, lung,  pancreatic and other forms of cancer.

So this new year has it hope for new treatments, that will not make us feel worse than before we had any treatment. I do want to say though, that chemotherapy has also come a long way. As I have read about my, small lymphocytic lymphoma/chronic lymphocytic leukemia, I have learned that some of the newest treatments in chemotherapy is very successful. Full remission can last many years, and in some cases, the cancer does not show it ugly face ever again.

In my case, I have been told that I will be given FCR, which is currently considered the best treatment for what I have. So I must be clear, that even though I would prefer not to have to have chemotherapy, I thank God, who has given these wonderful and caring researchers and doctors, the ability to discover these new chemo procedures that have offered extended life to those fighting cancer.

So to all a very happy, successful, joyful, and healthy new year.

Knowing that man is not justified by the works of the law, but by the faith of Jesus Christ, even we have believed in Jesus Christ, that we might be justified by the faith of Christ, and not by the works of the law: for by the works of the law, shall no flesh be justified. Galatians 2:16.