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Life and its Curve Balls Part II

Renee Stevens


Hello all, first off let me say thank you to everyone for the kind words and support. I appreciate it more than I can say and it makes me so grateful to be part of such an awesome community. With that being said, with the news I got today it cements the fact that I am unsure when I will be returning to GA full time. As such, if you post a review, send me a PM, or any other form of communication, if I don't get back to you immediately, it is not that I am ignoring you. Now, onto the update. I received the following from my brother, though I have edited it a bit to the facts.



Essentially everything that was suspected was the furthest from actuality. What was thought to have been a super quick acting, just came on, stage 3 lymphoma is not my reality. The doctor said this most definitely has been in my system a few months minimally, but realistically could have been a couple years in the making Also, the disease has spread throughout my entire lymph system, and is also in my blood and in my spleen. By very definition, it is surely stage 4 cancer (the highest stage possible). They are a little confused, however, because the cancer I have is almost always found in patients over the age 60. My actual cancer is CLL/SLL (Chronic Lymphocytic Leukemia/Small Lymphoctyic Lymphoma). It sounds like a double diagnosis (lymphoma and leukemia), but the two are very closely related and it is a single cancer diagnosis. so the scary part.... My doctor ordered another blood test today (6 more tubes, lol), I will actually be doing blood work once a week for quite some time. The main test she is doing is called a FISH panel test.


This test takes some time (1-2 weeks) to fully examine and get precise results and the results of this test is of utmost importance. This test is to determine the specific mutation causing my cancer. There are four things to come out of this : 17p deletion, 11q deletion, 13q deletion and the last would be kind of a general classification. Good and Bad here... 13q deletion is a good mutation that responds very well to chemotherapy. Success rate for remission and/or elmination...80-90% very, very good. A general classification, reasonable sucess rate at at least controlling and so forth. If it happens to come back 17p or 11q, not good, not at all. These two specific mutations aren't really responsive to chemo. not really gonna go to detail on that, but we can all read between the lines. pray for me and my family that is doesn't come back with one of those two. My oncologist said today she was kind of planning on a bone marrow biopsy to verify if it was in the bone marrow, but the blood results with it being in the blood stream and spleen, she already knows the result. She said it is pretty likely that a bone marrow transplant is somewhere in my future. That may be be 6 months, 1 year, 3-5 years, but she said it's likely.


Treatment for me is going to be chemotherapy. She definitely didn't want to wait for results for the FISH Panel test to start, so my first session is this monday. Treatment will be three consecutive days followed by 25 off days. Cycle is every four weeks and will likely go 5-6 months then re-evalutaion. Many tests in between, etc. The doctor said that especially the first couple rounds I would probably feel relatively normal and be able to carry on my regular regiman...work, etc. As I get to the 3/4/5 treatments, roughly a week after treatment there may be a day or two here or there that I'm just wiped out. My chemo will be three primary drugs, however, the most potent of the three will not be given to me in the first round this next week. There is so much cancer tissue that as the cells die the kidneys need to get that all through the system. Using that most potent drug could cause to much harm that my body couldn't handle it, so that one won't start till session two.


Thank you to everyone for all the kind words, thoughts, etc. I appreciate it more than you know.


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Good luck to you all. Your brother seems like a very pragmatic sort of guy, so he should be able to deal with whatever comes, but he'll still need all the support he can get. I'll be keeping you in my thoughts.

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HOpe you get some encouraging feedback from the test Renee. Will be praying for your brother and family. Hugs.

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Thank you NotNoNever, Joann, and Andy.  I apologize for not responding earlier, my mind has been a little... well... unfocused lately, but I appreciate all the kind thoughts!!!  Hugz!

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