Can CLL change to SLL? Then what?

Posted by traillens47 @traillens47, Aug 14 12:03pm

In 2010 I was diagnosed with CLL. since then I have been getting regular IVIG infusions. In the past year some lymph glands under my arms have begun to swell. I have now been told I have SLL. Everything I have read and doctors have told me CLL and SLL are the same condition. I find this very confusing since my bone marrow continues to produce faulty lymphocytes, which would indicate CLL but now my lymph glands are slowly beginning to swell, which indicates SLL. What is the connection?
Did the lymphatic system decide to join with my bone marrow and start making faulty lymphocytes? Has the CLL worsened and simply spread to the lymph glands? Are there too many bad lymphocytes for my system to dispose of them so they are being stored in the lymph glands awaiting disposal?
The red dots have been on my trunk for years as have episodes of sudden unexplained itching and irregular periods of night sweats. My absolute atypical lymphocytes have more than doubled so the question is.....what's going on with the CLL /SLL?

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Lori, Volunteer Mentor | @loribmt | Aug 14 6:47pm

Hi @traillens47, SLL and CLL are identical under a microscope. The only difference is where the cells are primarily located. CLL in the blood, SLL in the lymph nodes. They’re treated same way and are one of the more responsive forms of leukemia.
I found a great article for you from Healthline.com that compares the two forms of lymphoma.
https://www.healthline.com/health/leukemia/cll-vs-sll
Both forms of leukemia are generally slow to develop. Often people who are diagnosed can go without treatment for many years. The IVIG treatments you’re receiving is actually not a treatment for CLL/SLL. It is an antibody infusion to help keep your immune system functioning at a more normal level. CLL/SLL can lower your immunity making you more susceptible to infections and illnesses.

At some point, there may be changes which warrant your doctor to suggest medicaition for your conditon to keep it from progressing. Have they discussed the possiblilty of a treatment plan?

traillens47 | @traillens47 | Aug 15 1:34am

Hi Lori,
Thank you for the link to Healthline. It was very helpful.
No, my hematologist has not mentioned a treatment plan. The PA, the hematologist and my rheumatologist all day, "I will talk with X, Y, or Z and see what is the best course but they never seem to get around to it so nothing happens. The last visit I had to ask the PA to look at my recent test which showed
my IGVH was unmutated. That was 2 weeks ago and I'm still waiting to hear from anyone.
After all the reading I have done it would seem I should be on some sort of treatment plan.
It's terribly frustrating.

Lori, Volunteer Mentor | @loribmt | Aug 15 7:34am

In reply to @traillens47 "Hi Lori, Thank you for the link to Healthline. It was very helpful. No, my hematologist..." + (show)

I can sure understand your frustration with the lack of follow-through with your doctors.

What I’d do at this point is get a bit assertive. It’s ok to be the squeaky wheel and expect some answers. Try contacting the PA or your hematologist again either with a message through the portal or a direct phone call to the office. Either way, have a list of questions or concerns, express your frustration because of your changing medical tests with no follow through as to what it means for you and is there any course of action that should considered.

Sometimes you need to give your doctors a nudge to get your case back on top of the ‘in box’. 😉 Would it be possible to receive a second opinion from another medical facility?

traillens47 | @traillens47 | Aug 18 4:23pm

A second opinion would require leaving town since Bozeman, Montana is a small town with one hospital. Friday my rheumatologist talked to the hematologist who agreed to one rituxin infusion. And I will see a PA in 2 weeks and reiterate a need for a real treatment plan going forward.
It is unfortunate that the popularity of "Yellowstone" on TV has dramatically increased our population and that is overloading every facility and service in Bozeman. I don't think our doctors, especially specialists such as oncologists, rheumatologists, or neurologists can keep up with their patients needs. The PA'S and nurses all seem to be part time so there is no consistency in care. It all worked fine before the invasion of "Yellowstone" fans.

If we can't come up with a treatment plan I will have to consider one of the large centers such as the Mayo Clinic or the Cleveland Clinic.

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