Small Lymphocytic Lymphoma

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:

American Cancer Society

Mayo Clinic

The Leukemia & Lymphoma Society

So, we are keeping our fingers crossed that my “mother” blood cells will be normal!

Hugs and be well!

32 thoughts on “Small Lymphocytic Lymphoma

  1. Oh, Jane, how my heart goes out to you. I pray that all turns out good. What you have been through has been just awful. I hope that this can be behind you and soon. Know you are in my prayers. Love, Amy

  2. My fingers are crossed for you that you are in remission Jane. I know bone marrow tests are very excruciating.

    When will you have the results?

  3. I’m sorry to hear that you’re facing more than you realized at first. But it doesn’t change the fact that, as you’ve said, this is a survivable form of cancer. And if anyone can conquer it, you can. You’re in my prayers, Jane.

  4. Hello Jane … I was diagnosed with SLL, Stage 4A last September. Dr. said I probably have had it for 5 years or so. Bone marrow tests showed 40% & 70% & I had enlarged lymph nodes in the groin, chest & arm pit. I also had night sweats & would just drench my night clothes. I lost about 18 lbs … just the shock of finding out you have cancer. I started with Rituxan & Revlimid in January but in 3 months the cat scan showed no improvement so in April, we switched to Rituxan & a new drug, Imbruvica or Ibrutinib which has been very successful & was FDA approved in Feb. After 3 months (July 1), I had a very good PET scan, no hot spots & lymph nodes had shrunk about 60%. I am being treated at M D Anderson, and they haven’t mentioned anymore bone marrow tests … just a PET or cat scan every 3 months. I return to MDA every 4 weeks to get the Rituxan IV. My local dr wanted to treat me with R-CHOP but MDA dr said they quit using that about 6 years ago. MDA dr said I could start being treated by local dr but I want to stay with MDA for now. Here’s a good blog by Dr. Brian Koffman who has CLL which is like SLL just a different manifestion and is treated with the same meds. BTW, MDA knocked me out for bone marrow tests at my request – nothing to it. MDA did a test on “prognosticators” and I have some of the bad ones but Imbruvica still works anyway. Looks like I will be on Imbruvica (3 pills/day) for the rest of my life. Dr said I’ll be on Rituxan for about 2 years. Only side effect I have is fatigue. Grateful for each day the Lord provides … praying for you Jane. Next cat scan here on Sept 22. Lynn

    • You should be a 4B instead of a 4A. The drenching night sweats are an indicator that you would be a B. I lost 20 pounds, or 16% of my total weight. I too have the swollen glands in my neck, armpits, groin and inside around the thorax. My treatments are every 4 weeks, and I am thinking that maybe I am done, but not sure. Only the bone marrow test will show this. They do the bone marrow test in the Dr.’s office and they do not knock you out for that. Thank you for the link to Dr. Koffman’s blog! I too am grateful that I wake up every morning. My bone marrow test is slated for 9/25. Good luck to you on the 22nd with your scan! Hugs – J

  5. I assume you’ve had Rituxan which can be a “bugga-bear” the first time but okay after that. A couple of other interesting blogs. Once again, these or CLL but all I read indicates that CLL & SLL are essentially the same disease. Both of these guys are on Imbruvica/Ibrutinib as well as Dr. Koffman whose blog I posted in an earlier entry … … and … …. I especially like Dr. Koffman’s blog as he makes weekly entries & he is a medical dr & he is following the research & interviewing the researchers.

  6. Digestive tract issues for me have been minimal. Regarding Imbruvica which I started in April, it was reserved for those whose first treatment course had failed. In a July 28 FDA ruling, it now can be used as a first treatment for CLL/SLL in those who have the 17p deletion – negative prognosticator. FDA press release link … … Hope you don’t need it but the good news is that it is a “wonder” drug.

  7. My first bone marrow aspiration & biopsy was done in dr office in Abilene. I did okay until she started twisting the needle to get it to “core” the bone. I was immediately drenched in perspiration & began throwing up & my BP began dropping. Of course, we guys are kinda wimpy. Glad to be knocked out for the bi-lateral bone marrow at MDA.

  8. You are right Jane … looks like it should be 4B … I guess the dr didn’t remember or know that I was having night sweats. Glad I’m not having them, anymore.

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