Can Chronic Lymphocytic Leukemia (CLL) be cured?

Posted by jameshadyn @jameshadyn, Mar 13 6:17pm

Hi
I was diagnosed with CLL about 2.5 years ago. Initially my white cell count increased but in the last 18 months it has decreased. I have a blood test each 6 months and for last three my reading has decreased. Now is this normal or usual. It is has come down from 6 to 5. My only change in the last 18 months has been a change in my exercise regime. I am now doing impact exercises. Started these for bone density but may be helping my CLL. Is this possible?
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Lori, Volunteer Mentor | @loribmt | Mar 14 10:30am

Hi @jameshadyn Welcome to Connect. You’ve certainly had some good news with seeing a reversal in your CLL labs. There have been cases cited of CLL reversing direction! You may be one of these lucky ducks!

One of our members, @gardeningjunkie shared her story here:
CLL, Spontaneous Regression
https://connect.mayoclinic.org/discussion/cll-spontaneous-regression/
I’m sure your hematologist oncologist is as thrilled to see this as you are. What have you and your doctor discussed about this possibility of reversal? Were you taking any type of medication for the CLL?

nana120 | @nana120 | Mar 14 11:16am

In reply to @loribmt "Hi @jameshadyn Welcome to Connect. You’ve certainly had some good news with seeing a reversal in..." + (show)

@loribmt I w as taking Temozolomide (Temodar) for 3 months for NeuroEndocrine cancer and my CLL (white count) went down from 35-45 (where it had been stable for 10 years) to 8. It has slowly begun going back up since stopping the oral chemo med.

Lori, Volunteer Mentor | @loribmt | Mar 14 12:12pm

In reply to @nana120 "@loribmt I w as taking Temozolomide (Temodar) for 3 months for NeuroEndocrine cancer and my CLL..." + (show)

@nana120 You’re certainly going through a great deal of medical trials right now. That’s exhausting, isn’t it? It’s not uncommon for blood counts to decrease while undergoing chemo. At least in my experience, the rebound each month was slower than the round before. Now that you’re off the Temozolomide that may give your bone marrow a chance to recover its production level of healthy blood cells. Is this just a temporary break in treatment for you or have you completed your cycles?

jameshadyn | @jameshadyn | Mar 14 1:03pm

In reply to @loribmt "Hi @jameshadyn Welcome to Connect. You’ve certainly had some good news with seeing a reversal in..." + (show)

@loribmt
Thank you for response. My Doctor is skeptical at this stage as told me a cure is not possible. I think 3 results over 18 months in a downward trend is enough. I will have another test in 6 months which hopefully proves it to her.

jameshadyn | @jameshadyn | Mar 14 1:04pm

In reply to @nana120 "@loribmt I w as taking Temozolomide (Temodar) for 3 months for NeuroEndocrine cancer and my CLL..." + (show)

@nana120
Thanks for response. I am not taking any meds for CLL. It has just gone down all by it self

nana120 | @nana120 | Mar 14 1:58pm

In reply to @loribmt "@nana120 You’re certainly going through a great deal of medical trials right now. That’s exhausting, isn’t..." + (show)

@loribmt My NET specialist says that big pharma and I do not do well together. Before Temozolomide I was on lanreotide injections for 8 mos. I eventually had a Y90 that seems to be slowly working. However, 2 more small tumors have shown up in my liver, but they are not yet large enough to treat. We are in what he likes to call “a sit tight” period with CT scans with contrast every 3-4 months. To have 2 forms of cancer I consider myself a very blessed 84 (May 28) year old! I love following Mayo Clinic chats & always learn something!

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