Indolent CLL

[emg112253]

If you have indolent CLL. Do you really have CLL?

[Mystic75]

Indolent only means the CLL it is developing slowly. The description 'indolent' is often applied to a wide range, some developing more slowly than others.

[Indolent]

Indolent says yes.

[lankisterguy Volunteer]

Hi emg112253,

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If you want to read more- here is a list of the 205 times indolent was mentioned in a previous posting: healthunlocked.com/cllsuppo...

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The people that have only a really small amount of CLL cells in their blood, but probably will never see them increase are considered to have MBL- or pre-cancer CLL.

See healthunlocked.com/cllsuppo...

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Len

[SofiaDeo]

Yes, just because it's slow growing/not very active, doesn't mean it isn't there. The diagnosis comes from defects in the cells. Whether cells carrying those defects are actively causing other health problems, or not.

[Pacificview]

The bad news is yes. But the good news is that your very blessed being indolent! Enjoy it, savor it, go and do and don't worry about the disease. Defer any worry to if and when it should ever become active enough to cause problems.

[emg112253 in reply to Pacificview]

Thank you 🙏🌸🌿

[Cleggett]

Yes, I have indolent CLL, I was diagnosed 15 years ago, no treatment and still have no symptoms. I had a Flow Cytometry test in June that confirmed CLL.

[RZ8983DV in reply to Cleggett]

Same with me so far. Diagnosed 15 years ago but never had symptoms or needed treatment

[Tortola2019]

Yes, indolent cancer is still cancer. The mother of my first born had the "indolent" version of granulosa cell tumor...it killed her horrifically at 36 years of age after her long courageous battle. I have indolent CLL where the numbers of tumor cells keep rising to stratospheric heights and beyond...whenever my slow growing cells overcrowds the limited space inside my bone marrow, and platelets or erythrocyte production drops below acceptable levels...I'll need treatment. Until then, I've still got some level of immunosuppression caused by my indolent CLL, just as everyone with CLL has.

[Pearlpink]

yes! Don’t let anyone persuade you different. It’s fabulous if it stays that way, and in a third of us it does. But I was dismissed by the first consultant I saw as a medical professional, “ oh you know all about it. Best one to have, you’ll probably never need treatment”! Oh well I replied “at least I know why I’ve got fatigue”! She dismissed that too - fatigue isn’t the cll she said lol! Three years later, in the middle of a covid pandemic, I needed treatment and I really really resent her attitude. I was treated with less compassion than someone with a sore toe. I am under a completely different specialist now, and he is the complete opposite! and treatment has been fine.

Don’t let anyone dismiss the CLL. You are special! You have something that, if it should ever need treatment, is usually completely treatable. The new drugs are amazing.

This site is amazing. If you have CLL that is indolent - long may it last, but treatment is also ok. Keep posting as I found the very beginning was the worst.

All my love x

[dianejoyce in reply to Pearlpink]

I was diagnosed with CLL in 2009 and didn’t need treatment until 2016. Now I’m in. Cycle of about every three years. I actually feel blessed to have CLL as I could have been diagnosed with a different form of Leukemia with a less favorable outcome. Chemo has been tolerable and when I’m in remission I feel great! I just fell out of remission this last month and I still feel really good. I look at having treatment as more of an inconvenience than anything else.

[joed1rt]

I think I am considered indolent, which I am very thankful for. Diagnosed 11 years ago and probably had it 4 years prior to that. My current counts are better than they were at diagnosis and I have had no symptoms....KNOCK ON WOOD. In the back of mind I know that can still change without warning.

[bennevisplace]

Hi, as everyone here agrees, an indolent form of CLL is still CLL. From your bio it looks like your specialist is lining up to treat your CAD, a type of autoimmune hemolytic anemia (AIHA) associated with leukemia among other conditions. If Rituximab monotherapy gets it under control and your hemoglobin level returns to an acceptable level, I guess that would put you back on W&W for CLL. Has that been discussed?

[emg112253 in reply to bennevisplace]

No but I will still be visiting for regular blood draws probably every couple months instead of every month! I am sure they will be checking any symptoms that would result from CLL. 🤔