On FISH after Dx of SLL my trisomy 12 was 70%. Comments? Advice? Prognosis? Treatment?

[banrambo]

Seems confusing ... SLL or CLL? Watch and wait a lot longer, or hit it while my health is probably at its best for now?

[Cllcanada Top Poster CURE Hero]

What stage SLL? How do you feel? Experiencing node enlargement or spleen pain? What is your IGHV mutation, Zap70 or CD38.

Is you lymphocyte count raised?

These are questions you should raise with your CLL doctor.

[banrambo in reply to Cllcanada]

Thank you Cllcanada. Not yet staged. I have fatigue headaches some itching nausea. Plenty of node enlargement widespread. No spleen involvement apparent. IGVH is 77%. No results on zap70 or cd38.

[banrambo]

Upon 2nd opinion I am learning more. Hopeful recent blood tests will give better details. I just thought someone would have an experience to share. Seems my docs aren't in full agreement.

[MsLockYourPosts Passed Volunteer]

Doctors not being in agreement is not unusual. Start with your numbers and your own symptoms. Then if you need more than one opinion about whether or not to treat get one or two more from doctors who really know CLL. The doctors need to make their best decision based on what they see. Ultimately sometimes we have to make our best decision about which doctor we trust, which is usually not easy in the case of making a decision about treatment.

[banrambo in reply to MsLockYourPosts]

Thank you! I hope the recent blood tests give more definitive Dx and prognosis. Then maybe 2 of 3 docs will have same thinking.

[lankisterguy Volunteer]

banrambo wrote: "Seems confusing ... SLL or CLL? Watch and wait a lot longer, or hit it while my health is probably at its best for now?"

You are correct, it is confusing and as you learn more you will discover that "SLL or CLL?" the answer is YES, both have CLL cells, it only depends on where most of them appear. Some docs just call all variants CLL.

Time to treat is an art not science. Your docs will not use a single blood test level, they will track your rate of change of ALC and look for declining RBC components that indicate your marrow is being crowded. But most of all your symptoms and quality of life: lymph nodes causing discomfort, fatigue, night sweats, etc. will be the primary drivers of starting treatment.

Nearly every one of us- CLL patients is different, and our diseases behave differently, so there are few absolutes in the decision, and you, the patient also get a vote too. You can get multiple opinions from the docs, but then you must choose which recommendation you want to follow.

Treat early- has not been proven to improve outcomes - yet- but with the new Kinase inhibitors many would like to test the idea again- but it may take many years before we collect sufficient statistical data to change the Watch & Wait (Active Surveillance) paradigm to not wait until we reach the edge of the cliff before starting treatment.

Len

[banrambo]

Thank you, lenkeck, for your insight. Blood levels have been within normal range. Fatigue is problematic, and lymph nodes are enlarged, tho they have not caused any issues of which I am aware. For now I take one day at a time and plan for the next.