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.

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