As many of you know, I was diagnosed with Small Lymphocytic Lymphoma (SLL) back in March. I wanted to recap what I have gone through and my thoughts. Then I wanted to let you know what we found out at the Dr.’s yesterday…
I went to the Dr.’s for swollen glands and a blood test indicated that there was something wrong. Certain levels in my blood were 3 or 4 times of what is the normal range. I had a PET CT scan and a bone marrow test to assist in the diagnosis. I had hot spots on the PET CT but it was the bone marrow test that concluded that I had SLL. The “mother” blood cells told the story.
We were told that this is not life threatening, was treatable, and is not curable. There is no known cause of SLL and it is not contagious. I could have continued on having tests every so often or treat the disease with chemotherapy. I chose to have the chemotherapy due to the discomfort of all the swollen glands.
We were told that I would undergo three treatments. After the third treatment, I once again had to have a PET CT, then I went on to a fourth chemo treatment. The results of this PET CT showed no hot spots, meaning that all looked good. We were told after the fourth treatment that I needed one more, even though my blood looked good. We did not understand this and thought that this had to do with money. I went through the fifth treatment two weeks ago. At that time I was told that I would have to go through another painful bone marrow test.
This raised questions for me and my husband. I was only to have three treatments and have had five. There were no hot spots showing on the PET CT. My blood tests (the last two) have been normal. And, knowing this we did not understand why five treatments and why the Dr. wanted another bone marrow test. We needed to understand, and here is what we were told yesterday.
There are four stages of SLL, and I came up stage 4. We had not been told this previously. Stage 4 means you have the lymphoma outside of the lymph system. I was told yesterday it had spread to my bones. I was told that I was fortunate that it was not in my liver or lungs.
We were told that they do three treatments and then do the PET CT to see if what they are doing is working and that my body is responding they way that they want it to. The Dr. told us no one remembers the information passed on after hearing “three treatments.” I need to say here, that the Dr. did not tell us anything other than three treatments!
Now here is the new information we were given yesterday. With Stage 4, we were told, there are always five treatments. With each and every blood test they are also checking my liver function through the blood tests. The reason for the bone marrow test after the 5th treatment is to ensure that I no longer have the disease in my bones.
So, the long and the short of all of this is: It was worse than what we originally were led to believe. And, depending on the outcome of the upcoming bone marrow test, we will know whether or not I am in remission. If I am not, most likely I will require more chemo treatments.
I am actually glad that I did not know how bad this was because I think this would have negatively affected my mind set. I might not have been so positive as I have been on overcoming this had I known back in March how severe this was.
Researching further there are two types, either A or B of SLL. Looking at B first, this is what I found out about this designation. B means that the disease is advanced. One has to have lost 10% of their body weight (I lost 20 pounds – more than 10%); that one has an unexplained fever over 101.5 degrees (had this too); and that you have drenching night sweats (I would wake up in the middle of the night and my hair was so wet it was if I had just gotten out of the shower). One is designated type A if they do not have any of these 3 symptoms.
If you are new to SLL, ask what stage you are and if you are an A or B.
Now we know that I had Stage 4B SLL. You can read more about this disease by clicking on the following links:
So, we are keeping our fingers crossed that my “mother” blood cells will be normal!
Hugs and be well!