Tag Archive: SLL


My Journey

Good morning all, I have not written on this blog now for over a year. So I thought I would bring all of you up to date on my walk with SLL/CLL. And for those who were wondering; yes I am still alive, and doing very well.

I have included an updated chart along with a short version of my last five years. You will see that my 100 Leukocytes has fallen below normal now for three blood tests. What does that mean? It means that it may take longer to beat a cold or infection, if one should occur. Hoping to see them rise when I have blood tests again in March 2016.

As I look back on that day, December 25, 2010, when I was first told I had cancer, I was certainly caught off guard. then just a couple of months later I came to realize that it is not just cancer, but a terminal disease. It  was march 2011 when the doctor finally told me I had Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukemia, (SLL/CLL) stage 4, and there was no cure.

Soon after, I found out that I had the dreaded chromoseome 17p deletion and it was 92% deleted.

Life expectancy, at that time, for those with the17p deletion was that 50% of patients died by nine months after diagnosis, and the rest of them usually died within thirty months. Now in 2015, several new therapies have been approved for SLL/CLL and even 17p patients have much more hope now, to live well past previous life expectancy estimates, of previous years.

I found out, and was later told that chemotherapy was not viable for 17p deletion patients.

In June of 2012, my nose was bleeding, often for more than an hour at a time. My spleen was twice the size it should be. Lymphnodes in my neck and jaw were the size of large marbles and I was short of breath. At my June 2012 appointment, my doctor finally said, “nothing could be done”, that mabybe I should try to get into a clinical trail. On our way back home from the VA in St. Petersburg, my wife and I stopped at the VA cemetery in Sarasota, and got all the information needed for my wife to have me buried there.

The next day I called NIH in Maryland, and after talking to someone, the head doctor called me and said I would be perfect for the trial he was conducting. It took about a month to get all my tests prepared to be sent. However a few days before I received the papers, I was called by the head doctor up there, telling me the trial had been filled. It was now near the end of July 2012.

Feeling sick right at that moment, about one minute later, a verse came to my mind….” And we know that all things work together for good to them that love God, to them who are called according to His purpose.” Romans 8:28. Honestly, all fear left me at that moment. Also one of my favorite verses in the Bible is Isaiah 26:3 Thou will keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. The word peace here in Hebrew is Shalom which means, everything is well.

About one week later, I was watching, on television, a Christian Creationist preacher mention Genesis 1:29. God also said, Look, I have given you every seed-bearing plant on the surface of the entire earth and every tree whose fruit contains seed. This food will be for you. After reading the verse, he said that bitter apricot seeds kills cancer cells.

Believing God, that every seed bearing plant whose fruit contains seed is for eating, I started eating bitter apricot seeds. I was given this verse when my blood counts were near their worse. Cancer count in my blood was at 70%. WBC 12.4, (high 18.5) HGB 11.4,(low 10.3) PLT 59,(low 53) ALC 8.7,(high 13.5)

It is now Sept 2013 and my blood counts had become close to normal again.So my doctor looked at the lymph node biopsy, that was done in March 2011 and yes, the lymph node was positive for SLL/CLL. Okay we concluded, I did and still do have SLL/CLL, but why the consistently improving blood counts. It was then that I told her what I had been eating.

Since that time, my doctor has told me I am at stage 0, which was stage 4 when first diagnosed. My blood counts are now normal or near normal.

Has this been a miracle in my life, who knows, but for me, it certainly is. When I think of what has happened over the last five years, I thank my Father, the God of Abraham, Isaac, and Jacob, for calling me, to believe Him.

The night I was told I have cancer, my wife unknown to me, sat in the hall of that hospital, next to my room and prayed that our Father in heaven would do for me what he had done for King Hezekiah in 2nd Kings 20. Give him fifteen more years. And as King Hezekiah left his sick bed in three days, so it was with me. There is so much more I could tell you, but it would take far to long. There is much more detail in my previous blogs, for those who may be interested.

I do want to finish with this, I do not have faith in bitter apricot seeds, but I do in the One who healed all who were sick, the one who cleansed the leper, and made the blind to see. You see the grace of God is not a subject, just to discuss, the grace of God, unmerited favor, is a person, and that person is Jesus Christ. The Law was given by Moses, but grace and truth came by Jesus Christ. It is one thing to give, you can give at a distance, its another thing to come, personally.

For if by one man’s offence death reigned by one; much more they which receive abundance of grace and of the gift of righteousness shall reign in life by one, Jesus Christ. When I put my faith, when you put your faith in Jesus Christ, our position, moves from being condemned by our sin, to a place of righteousness, and no condemnation. That is, not my righteousness, for I have none in myself, but Christ’s righteousness.

God made him who had no sin to be sin for us, so we might become the righteousness of God. 2 Corinthians 5:21.

He Himself bore our sins in his own body on the tree, so that having died to sins, we should live unto righteousness: by whose stripes I am healed. I Peter 2:24.

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%
03/05/15 5.9 13.2 90 0.67 13.40%
09/05/15 5.2 12.8 85 0.64 12.20%
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%
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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.

I just received my blood results, from December 05, 2013, and wanted to share them with those, of you, who have been following my blog.

Again I am thankful for the great results I am having. I tell as many who will listen, what I have been doing. I have had some ask me, “are there anymore people that this has happened too?” I really do not know, but one thing I do know, is that it has happened to me. For some of my closes friends, and acquaintances, they know how I was doing before June 2012, and see how I am doing now. Of course it is easy to believe it, when you actually see it happening in front of your own eyes.

I know for most, skepticism is the rule of the day, and that is not a bad thing. I am skeptical concerning most things, but knowing that, I am still amazed at what is happening to me, and want people, especially those with SLL/CLL to know my story.  I will tell it until I am called home.

Here is my up dated chart.

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%
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%

Over the last twelve months, I have had the good fortune of being able to write, in my blog, the gains I have been having, battling my cancer.

I received my blood readings today, while at the doctors office for my annual check-up. The last entry, dated 08/8/13 is what they currently are. My doctor made an appointment for me to have a sonogram, so they can know exactly how much my spleen has gotten smaller. She believes it is back to normal, as she could not touch it anymore.

DATE WBC HGB PLT ALC
12/26/10 15.6 12.8 87
01/10/11 15.8 13.3 112 4.3
01/19/11 11.7 13.1 78 4.2
02/17/11 12.5 13.7 87 4.5
05/12/11 11.6 11.9 77 5.5
08/08/11 13.3 12.4 85 7.63
09/08/11 18.5 63
10/20/11 15.7 12.1 60 8.6
12/21/11 13.4 11.9 64
01/06/12 12.5 11.7 63
01/26/12 11.1 11.1 62
04/26/12 11 11.4 54
05/25/12 11.7 11.1 53 8.1 Started Seeds beginning of June 2012
06/22/12 12.4 11.4 59 8.7
08/19/12 9.7 10.7 63 5.9
12/03/12 9.1 11.1 73 5.1
03/04/13 6.1 10.3 63 2.94
06/03/13 6.6 11 72 2.6
08/08/13 6.4 11.1 101 1.89
Normal WBC Normal HGB Normal PLT Normal ALC
4.0-10.6 12.8-17.0 150 1.0-3.7

For the first year and one half, I had seen my blood counts moving in the wrong direction, showing my doctor and me, that the cancer was becoming more aggressive. It was at the point where I was told that the best course of action was either a stem cell transplant, or a clinical trial. It was agreed that with my chromosome 17p deletion, chemotherapy may not be very effective.

Since that gray day in May 2012,  knowing I was stage 4, I have seen my cancer go from getting ever more aggressive to remission.  All of this happening without chemotherapy, stem cell transplant, or clinical trial.

I do continue to eat 15 to 18 bitter apricot seeds everyday. I have an apple twice a week, and also the seeds in it. I call it God’s chemotherapy.

As I look back on that day in 2010, when I was first told I have cancer, I have come to realize that it is not just cancer, but a terminal disease. It was March 2011 when the doctor told me I had Small Lympocytic Lymphoma/Chronic Lympocytic Leukemia (SLL/CLL) and that there was no cure. I guess that was a nice way of saying your cancer is terminal.

(Bing dictionary: causing death: inevitably, but often gradually leading to death of the patient affected.)

While focusing on what has happened to me, I remembered back to the time when I first realized that everyone, including myself had a terminal condition.

However this terminal condition was and is, far worse than the physical one I have now. This one is eternal, forever, with no end.

God wrote in stone what His commandments (the law) were. And to fix them in stone, must mean they are quite important.

   1.  I am the Lord thy God, thou shalt have no other gods besides Me.

   2.  Thou shalt not make for thyself  any graven image.

   3.  Thou shalt not take the name of the Lord thy God in vain.

   4. Remember the Sabbath, to keep it holy.

   5. Honor thy Father and Mother.

   6. Thou shalt not murder.

   7. Thou shalt not commit adultery.

   8. Thou shalt not steal.

   9. Thou shalt not bear false witness against thy neighbor.

 10. Thou shalt not covet.

So I thought back to the time when I asked myself, okay what commandments have I broken?  To many, was my answer. Then I realized that if it was only one, I would still be guilty under the law. So without listing all of them in order again, I knew I was an idolater, adulterer, thief, liar, and so on.

As I began to read more of what God had to say, I came across these verses. Romans 2:15 clearly shows that the works of the law are clearly written in our hearts, as our conscience bears witness to it.

Now Romans 3:19 says: “Now we know that whatsoever the law saith, it saith to them who are under the law: that every mouth may be stopped, and all the world may become guilty before God.”

And “Therefore by the deeds of the law there shall be no flesh justified in His sight: for by the law is the knowledge of sin.” Romans 3:20

So I thought, when God judges me, am I innocent of sin, or guilty of sin? I had to conclude, if I was to be honest with myself, I am guilty of sin.  I read that the wages of sin is death. Of course back then I was very healthy and realizing that sin led to death, I found nothing appealing about it. I also did not find the second death very appealing either. I did not want to go to hell, period.

Realizing how serious God was about sin, and how severe sin really is, I asked Jesus Christ to save me. I truly felt sorry for everything wrong I had done, even though I knew I could not make most of them right. I still believed Jesus would and could save me from the holy judgment of God. Now more than thirty years later, I am confident He did.

Now in this present time of my life, physical death does not seem as bad to me, as it once did. But that second death, well I am still not crazy about it, and you shouldn’t be either.

And death and hell were cast into the lake of fire. This is the second death.” Revelations 20:14.

But the fearful, and unbelieving, and the abominable, and murders and whore mongers, and sorcerers, and idolaters, and all liars shall have their part in the lake which burneth with fire and brimstone; which is the second death.” Romans 21:8.

Well if the above is true, then God must punish law breakers. But I am told, He is to good to let people go to hell. Well, if someone steals from me, goes to court, is found guilty, under the law, and then the good judge lets that person go. I would not conclude that the judge is good. It is just the opposite, those under the law are found guilty because the judge is good.

So if God is truly good, then He must be just. That’s just great, because He is good, and I have broken  His laws, I must pay. So the wages of sin is truly death!  So how do I get out from being under the law?

Since that time way back in 1978 I have heard many people, over the years, say many things concerning God, I have been told about His goodness, His meanness, His anger, His Holiness, and every other description that man could think of.

Then I read what Jesus Christ says, “take my yoke and put it upon yourself, and learn of me, for I am meek and lowly in heart, and you will find rest unto your souls.”

But wait I then read that God commended His love toward me, in that while I was still a sinner, Christ died for me. Romans 5:8.

And again I read that Christ died for my sins according to God’s word.  1Corinthians 15:3

Then I am told that Christ redeemed me from the curse of the law. Galatians 3:13.

So what am I to make of all of this? Because God is good, He will fulfill His justice, according to the law. And  then I find He has fulfilled the demands of the law.

By His goodness, He sent His only begotten son, Jesus Christ, to stand in my, our place, and receive His judgment.

For the wages of sin is truly death, but the gift of God is eternal life. How? Through Jesus Christ.

For the son of man came not to be ministered unto, but to minister and to give his life a ransom for many.

So if your heart condemns you because of the commandments of God (law), know that God is greater than our hearts, and knoweth all things. Also know that the Son of God is come, and has given us an understanding that we may know Him that is true, and we are in Him that is true, even in his son Jesus Christ. This is the true God and eternal life.

I was told by someone, this all sounds great, but you must really believe it, not just say you do. That person was absolutely correct, and without realizing it, knows what the Gospel really is.

If you will confess with your mouth the Lord Jesus Christ, and believe in your heart that God raised him from the dead, you will be saved.” “For with the heart, man believes unto righteousness, and with the mouth confession is made unto salvation. “Romans 10:9&10.

We hear a watered down gospel these days, God is love, God forgives, God cares about you, and all of that is true. But we have neglected to say that God is also Just, and Holy. There is no darkness in Him at all. He renders judgment on those who are under the law, and have not followed the law.

After revealing the whole truth, as written in His word, then and only then can we declare what else He has done.

For Christ is the end of the law, for righteousness to everyone who believeth. -AND- 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 and 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.

I would like to thank all of you who read my blog. May God show you His truth in all matters.

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

Good day to all of you who have taken the time to spend these few moments with me.  In this part of the world, the weather is beautiful. Some may not like it at 92 degrees, but it suits me just fine. Blue sky, some puffy clouds, and a slight breeze coming off of the water, makes a perfect day.

I saw my doctor yesterday, and we had quite a good talk. All of my numbers, except my platelet count, were good. Unfortunately, my platelets again dropped, now being at 53,000. Because of this, chemotherapy was brought up again. My Oncologists asked me as I walked in his office, “Do you have any pain around your spleen?’ After answering no, I was told that it is now 5 inches below my ribs. It has doubled in size, and chemotherapy is really required now. I told him I was still feeling great, but was having frequent nose bleeds.

I had been reading about FCR not being a good chemotherapy for my SLL/CLL with the 17p deletion. Most of the time it had not helped the patient, but the toxcity was so bad, it often made the patients with Chromosome 17p deletion worse. The F in FCR which is fludarabine, was very nasty, for our deletion. I had just watched a video the day before about a new chemotherapy that was just as effective as FCR, but had much less toxicity. It is called Bendamustine and Rituximab (BR), Bendamustine is called Treanda in the United States, but has been used for CLL in Germany for years. Anyway, as we were talking, the doctor said that my chemo would not be FCR but BR. Wow, I got a big smile on my face, and told him I was happy that it would not be FCR, and that I had just seen a video about BR. He told me it still may not work, as no chemo to date has been very effective for 17p deletion, but it would be less toxic and I would only be in the hospital for two days, instead of three. I already knew that there was no guarantee, but at least, to date, it has not shown to make patients with 17p worse.

I have to add here, that the response rate for those of us with the 17p deletion is not good even with BR, but it is a start. We then talked about the new and exciting Ibrutinib (formally known as PCI-32765). I told him I have a friend, where I used to live, who had what I have, and was put in a trial almost three ago, after being told that there was nothing that would help her. The trial was PCI -32765 and shortly after starting the trail, all here blood counts went back to normal, and she has been fine since. She has to take this pill every day, but it has kept her CLL stable so far. He knew about this BTK inhibitor, and went to the FDA website. He was pleased to see that it had been sent in for approval, but no approval yet. At it looks right now, if the best happens, approval may come near the end of this year

With knowing that, the question was, do we wait for the approval, if it comes, or do chemotherapy now? He told me that we were at a point where we needed to make a decision. I asked him if we could wait another month, see the next blood results, and then discuss beginning chemotherapy again, and he agreed. I don’t know if I am making the right decision, but I do know that chemicals in your body are not good. As he said, if my platelets move lower next time, I will have to accept the fact that chemotherapy is a must. I do realize that, and will accept it. I just don’t want to jump into this thing to fast. I feel so good now, that it is hard to agree to something that may make you feel really bad. Of course, there is no guarantee that I will feel bad, I may have the BR and feel the same as I do now.

Boy, it is really hard to figure out what to do, when it concerns your  life.  Any suggestions out their from my chromosome 17p deletion partners? Or anyone else out there that can offer something that may help me to make a decision.

Until later, I leave this post thanking all who are praying for me, and everyone in my family for being so concerned about me.

Well it is Friday, one day after my visit to the doctor. I am so far feeling the same emotions this morning that I felt when I left the hospital.

As I said in an earlier blog, I have been feeling great, and really believed my blood readings would be better than before. After learning about my 17p deletion, and the usual outcome due to it, I have felt better than I had at any time since finding out about by SLL/CLL.

So how did my blood counts look this time?  They were mixed, and unfortunately the one count that needed to be good was not. This is what caused me to have mixed emotions, now for two days.

My WBC (white cell blood count) was at it highest 18,500, on 09/08/2011, yesterday it was 11,000. Normal count for WBC is 4,000 to 10,600, and as you can see, my count is real close to normal, and has come way down.

My HGB (Haemoglobin-protein that transport oxygen) was at it lowest at 11.1  on 1/26/12, yesterday it was 11.4. Normal count for HGB is 12.8-17.0, and as you can see it went up. It may seem to many that it didn’t go up much, however since 1/10/11 it has steadily gone down from 13.3 since then. This is the first time since I was diagnosed that it went up.

Now the one that was very discouraging, my Blood Platelets (stops bleeding). The highest it has been 112,000 was on 1/10/11, and my last reading on 1/26/12 was 62. Yesterday it had fallen to 54,000 which is the one thing my Oncologist is looking at to determine when chemotherapy is required.

So I have to go back on May 25th and if my platelets have not gone back up to 60,000, I am afraid that I will have quite an argument on my hands about starting chemo. I should not be surprised that they were low, as I have had a bleeding nose every morning for the last four days, and last night while sleeping, it started bleeding again, and woke me up. So I am once again trying to raise those pesky platelets.

Now for some other news. Since my wife’s sister and two cousins have been here, we have been to Disney World, Downtown Disney, the beach several times, shopping (not me), eating out, and will be laying on the beach looking at the Atlantic Ocean tomorrow. It has been a nice time for them all, even though I think I may have slowed them down a little bit, but today they are shopping, and I am at home resting.

Again I want to thank all of you who have been praying for me.

It has been awhile since I last posted anything, so I thought I would bring everyone up to date on what’s happening.

As I said in a previous blog, I have a 17p deletion, which is the worst one to have in the game of SLL/CLL. Life span is not usually to good for those with this deletion. Somewhere around 32 months, where as I have had this cancer going on 52 months so far. I am still on watch and wait, and am real happy about that, as no current chemotherapy works very well on this deletion. Sounds bad, but all of this time, I have felt quite healthy, occasionally having bouts with shortness of breath, excessive bleeding, but really nothing that stopped me from living my life as I always have.

Many have been working on finding something that will work on this 17p, and as I have been reading, I have been seeing that two new therapies are being tested, and are in their third phase of tests. PCI-32765 and  CAL-101. It looks as if they are targeted drugs, and are in pill form. They have not been approved yet, but there is much promise in them, and hopefully will be approved for human use soon. The PCI-32765 has shown to be quite promising for those of us with the 17p deletion.

The following is from the National Cancer Institute, April 2, 2012. Investigational targeted drug induces responses in aggressive lymphomas

Preliminary results from clinical trials in a subtype of lymphoma show that for a number of patients whose disease was not cured by other treatments, the drug ibrutinib (formly called PCI-32765) can provide significant anti-cancer responses with  modest side effects.

Lymphomas are the fifth most common form of cancer. They are caused by an abnormal proliferation of white blood cells, can occur at any age,  and are often marked by lymph nodes that are larger than normal, fever, and weight loss. Diffuse large B-cell lymphomas (DLBCL), which were studied in this trial, are aggressive cancers that grow rapidly and represent 30 percent to 40 percent of newly diagnosed lymphomas. DLBCL originates from B cells, which play a crucial role in the body’s immune response.

Based on this molecular research, investigators chose to use the drug ibrutinib (formerly PCI-32765), a potent inhibitor of BTK, in their clinical trials. Ibrutinib is an oral, highly specific and irreversible inhibitor of the BTK enzyme.

Participants in these studies were given ibrutinib as a pill at a fixed dose of 560 milligrams daily until the disease progresses. Ibrutinib  induced multiple responses including some complete remissions in ABC        lymphomas. Remissions were also observed in patients with non-ABC DLBCL, suggesting a broader role for the B-cell receptor pathway in this type of lymphoma. A final analysis will provide additional insights into the safety and efficacy of ibrutinib in the treatment of DLBCL.

I know that the above may be uninteresting reading to some of you, but thank you for reading it anyway. There are some who read this blog that are going through this fight right now, and I hope that if they have not seen this information yet, reading this blog with lift their spirit. It is my hope that these new therapies will be effective for those whose current therapies just will not work.

For me currently, I have been feeling real good since my last visit to the doctor, so good, that I sometimes wonder if they made a mistake in my diagnosis. Wouldn’t that be nice.  Anyway I have been doing really good, I have no pains, spleen, stomach, or neck, and no night sweats. It seems that some of the tumors that I had in my neck have gotten really small, and some of the bumps on my back are gone.

I am eating more than I had been, and I work around the place more each day, because I am not losing my breath at all, and I don’t get tired as easily as I did before. At my last visit, my doctor was surprised that the aggressiveness of my cancer looked to  have stopped. He did not know why, but was pleased, as was I.

Again I have to thank all those who have been praying for me, and I have been thanking the Great Physician. I am reminded of one of my motorcycle club members, that was told he had throat cancer, stage 4, and had five months to live. He told the doctor that he was going to talk with the Great Physician, and the doctors reply was, if you change doctors, you will not be covered by your insurance here any longer. (That was two years ago, and his last tests showed he no longer had throat cancer).

So with this dear doctor in mind, I am talking about Jesus Christ, the one who said, “Come to Me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls. For MY yoke is easy and My burden is light.”

I will be seeing my Oncologist on April 26th, and I have no idea what my blood results will be, but one thing I am sure of. It is God who knows the number of my days, and until that number is up, I will be here enjoying and marveling at all He has created.

But what if I seek to be made right with God through faith in Jesus Christ, and find out that I am still a sinner? has Christ led me into sin? Of course not! Rather I make myself guilty if I rebuild the old system I already tore down. For when I tried to keep the law, I realized I could never earn God’s approval. so I died to the law, so that I may live for God. I have been crucified with Christ. So I live my life in this earthly body by trusting in the Son of God. I am not one of those that treats the grace of God as meaningless. For if I could be saved by keeping the law, then there was no need for Christ to die.      Galatians 2

So if you chose to put your faith in Christ, do not at a later time try to become perfect, by your own human effort.

http://justin.tv/alphamin – great live Sunday service at 11:00 am. If you don’t like mountain music, then tune in around 11:20 am. I guarantee that you have not ever heard, what you will hear there.

God bless, and keep the faith

My Journey

It is now February 8th, 2012 and I am finally writing this blog, while sitting on my couch, in the living room. I have hooked up my notebook to my 42″ television, and bought a wireless mouse and keyboard. Now I can view the internet with the click of a button. Not to bad for a 68-year-old with CLL.

When I think of the first phone I ever talked on, a large brown box, where you lifted the phone to your ear, and spoke into the box that was connected to the wall. I remember that we had to listen for the amount of rings. There were so many other people on the same line, you didn’t want to pick up if it was for them.

The first color television, I saw, well I thought it was color, was when I looked into a store window that had color plastic on the window. The television was actually black and white, but looking through the colored plastic, I thought it was color.

But something we had then, that is not around so much today. The big V-8 engine. I had a Mercury Comet 289 V8, and it was fast, with blue racing strips down both sides. We didn’t worry much about gas consumption back then, as gasoline was $.21 a gallon. Later on I bought a Mercury Montego Super Sport, Cleveland 351 V8 engine with two air intakes on the hood. What a car, all leather interior, with power windows, and fast. Sad to say, but now that I am a bit older, I drive a four cylinder, square looking, gray car. But lets not forget, I still have my 1500 cc cruiser motorcycle. Oh well, I certainly enjoyed the times I had, and am very thankful for them.

I am having a Bible study tonight, so I have to do some finishing touches on my Powerpoint presentation. So for now, I will stop rambling on, and get on with things I have to do today.

Galations 3:19a -What purpose then does the law serve? It was added because of transgressions, till the Seed should come to whom the promise was made;

Galations 3:24- 25 – Let me put it another way. The law was our guardian and teacher to lead us until Christ came. So now , through faith in Christ, we are made right with God. But now that faith in Christ has come, we no longer need the law as our guardian.

Hoping that all will have a grand and glorious day.

Well it has been a little over a week since I met with my Oncologist.

I was told that my blood counts were staying steady, so I would not have to see him again until April 2012.

I want to thank those who have been praying about my suituation, God answers prayers.

I have been crucified with Christ; it is no longer I who live, but Christ lives in me; and the life which I now live in the flesh I live by faith in the Son of God, who loved me and gave Himself for me.   Galatians 2:20