To give you an idea of the difference...

I took this picture of John yesterday afternoon. This is what his neck looks like after five and a half weeks on CAL-101.

To appreciate the dramatic difference, however, you have to see what John's neck looks like when the lymph nodes are full blown. And John doesn't like having his picture taken when his neck is swollen. So I don't have many. But I do have a few. This picture was taken in March of 2008 before any treatment. John is very thin and has a thin neck. This is what CLL does to that thin neck. The nodes get very large in other parts of his body also; large and uncomfortable.

It's not simply a cosmetic issue. You can see the enlargement in his neck. What you can't see is how those large nodes affect a person when they are in the abdomen and other areas not so visible. Some of the nodes in the groin area even made walking uncomfortable. And when the nodes get very large in the abdomen, they can affect organs and arteries. A little swelling doesn't necessitate treatment. But when they are as large as John's have been, you cannot simply ignore them. It means the disease is very active.

I just thought that seeing these before and after photos might give you a better idea of what CAL-101 is doing for John and why I am so excited. CAL-101 is something a patient can take for as long as it keeps working. I'm hoping and praying that this drug will be the ticket to longterm maintenance of CLL, both for John and many others who are battling the same CLL challenges. It doesn't work for everyone. It seems to work better for patients whose CLL accumulates in their nodes and for patients with Lymphoma. As Dr. Flinn explained to us, it is not a perfect drug. There are patients for whom it has stopped working after a period of months. But I will be grateful for all the time it will buy us.

We have had a wonderful weekend relaxing in Atlanta. I appreciate my husband so much. Yesterday we drove through an area that brought back some painful memories from another time in my life. Just being in this specific location triggered my recollection of a specific event that was so intense, I felt like I was having post traumatic stress. I had knots in my stomach and my chest felt heavy. I remembered how I felt then as if the event had happened last week instead of years ago. I felt like I had to verbalize it rather than try to hold it in. (Poor John; not his favorite subject.) The sick feeling did not leave me for about an hour.

All I could think of was how thankful I am that my life is so different now. God has blessed me with such a wonderful husband and life. And He has delivered me from so much that I could never even begin to share. I will never take one day of my life with John for granted. And that would be true even if he did not have CLL. 

Comments

Randy Shannon said…
Shari,
I am glad it is working well for John. Let's pray that it continues- or the trial leads to a cure.

God Bless,

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