Newly diagnosed CLL How to interpret FISH results?

Hi @dharma, You were recently diagnosed with CLL, which is a chronic and often slowly developing type of leukemia. I know it’s frighting to receive a new diagnosis. Even more frightening to read blood work and test results when you aren’t familar with any of the numbers or terminology. From my own experience, it’s better to wait and speak with your doctor than try to interpret results on your own. It’s normal for you and your family to be worried. If I can reassure you at all, CLL is one of the more treatable forms of leukemia.

I just responded to your other post about when you would have gotten CLL.
In that reply I’ve provided you with some good informational articles that will help familiarize you with CLL and the possible treatments. Here’s a link to that post: https://connect.mayoclinic.org/comment/1094363/

I think you’ll find those articles helpful. We also have quite a few members in our forum who have CLL. You can find all of the discussions by typing in CLL in the search box.
To get you started I think this would be a great conversation for you to pop into to meet other members. (The conversations are in chronological order so some are dated but still relevant. You can change the order from oldest to newest to see the most current discussion)
CLL. Newly Diagnosed:
https://connect.mayoclinic.org/discussion/cll-newly-diagnosed/
Have you had the consultation with your hematologist oncologist yet?

Thanks for this info. I will check out your links. Thank you Lori.

Hello, Dharma -
I can relate to your worry and am glad you found this site as a resource. I hope that you and your family are finding all the right people and information to support you.

@lorimbt
My husband has recently been diagnosed (two weeks ago) with CLL, intermediate stage. His current doc was not forthcoming with interpretation of the FISH results. I am a deep-diver, and want the information to put my mind at rest and research accordingly. We are awaiting a second opinion appt. Meanwhile, is there a place I can locate what the data means? The results themselves via the on-line reporting seem unclear re variants, ATM, Trisomy 12, Deletions, and IGH. We received these last Monday and our questions are unanswered.

Both of us have family backgrounds in medicine (which we avoided ;), so are eager to understand and feel more grounded.
Thank you very much.

Hi @learnknowgrow. I love your @name…I agree, knowledge is power. There is comfort in being prepared by having a better comprehension of what a diagnosis can mean. But I will caution you about trying to interpret medical results for your husband without having that medical background you avoided. Don’t you wish you had that now?😅

Joking aside, sometimes researching on our own can lead us into grey areas where the information isn’t relevant to the diagnosis or a single result can be misinterpreted without factoring in all the related peripheral information, causing more stress than answers.
Without getting into medical sites where there’s a subscription fee a good source of articles & research papers can be found on Google Scholar. Could you also tap into your family’s medical backgrounds?

I’m glad to see your husband is having a second opinion. His current doctor sounds less than inspiring. It’s important to find a specialist with whom you have a level of trust and confidence.
Cll is typically slow to develop and according to several sources, remains one of the more treatable forms of leukemia. You might be interested in one of the many current discussions in the group on CLL. This is a reply to another member, @joeeduffy whose husband was diagnosed with CLL earlier this year. I put quite a few links in this reply that might be helpful. For context, you can read Joee’s comment right above mine… https://connect.mayoclinic.org/comment/1007740/

Has your husband’s current doctor discussed potential treatment options or is he in an active surveillance period?

My oncologist called me yesterday and said that I still have MGUS and it won't have progressed to SMM until my current 300 mg/L kappa levels are in the thousands. I was a research scientist, but not medicine, and know that the interplay and interpretation of genetics, bone marrow and blood test results, and the whole mishmash is complicated. Still, it seems like my oncologist is underplaying my results a bit. My bone marrow biopsy plasma cells are at least 15% (normal is ~2-3% and MGUS usually 5-10%). He said my gain of 1q21 only impacts treatment if someone has MM. I think this is currently correct because most clinical trials on limiting progression are for MM and later stage SMM. MGUS and SMM are waiting games, I do wish the research papers were easier to read, but they are written to a specific audience. Would make an interesting rom-com or mystery tho. The FISH was creeping up on the unsuspecting patient, slowly slithering along, and then pouncing...Oh No! The chromosomes quaked in fear...

@kayabbott
Slithering FISH…quaking chromosomes…
I anxiously await your rom-com screenplay!
You brightened my morning.

Yes: i do wish I had that training, now 😉 None are hem-oncs, so I'll await the 2nd opinion.
Good advice, and understand why the caution.
I don't let my imagination run away - I keep it focused and make a list of questions. This is where the lack of interaction from the doc is disappointing. Active surveillance, right now. three-month check in. The CLL became known b/o a colonoscopy panel. The presence of it at an intermediate stage, and at his relatively young age (57) is what has surprised us and we're both concerned for process, and want to actively discuss the variables.
@dharma 's name reminds me so much of this process is being present and alive amidst all of the uncertainty.
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I'll check out the other member's thread, too.
Much appreciate your presence here!

I’m 78 recently diagnosed 3 stage MM. Fish test 50%. Went for second opinion, Fish test 10% cancer. However Impact test(DNA test?) showed mutations in the biopsy sample. Started standard DRVD therapy. What should I look for, what questions should I ask?

Keep track of any symptoms (good and not) associated with the MM and DRVD treatment. It is good to ask the doctor which mutation(s) that you have and the potential impact on treatment and remission of MM. Are there foods, drugs, or activities that you should do or avoid, including pain management. Here is a site for questions one can ask: https://www.cancer.org/cancer/types/multiple-myeloma/detection-diagnosis-staging/talking-with-doctor.html

I'm 70 and still at the asymptomatic MGUS stage with 15% plasma cells based on my latest bone marrow biopsy. I have the 1q21 gain mutation; that means that I have one gene duplicated on chromosome 1 on the long arm (q) at location 21 (a geneticists' version of a road map). If it had been amplification rather than gain then the mutated gene would have been 3 times rather than 2 (gain). The mutation puts me at some risk of the MGUS progressing to MM. Not all genetic mutations are bad, some buffer effects of bad mutations. https://www.cancer.gov/news-events/cancer-currents-blog/2024/multiple-myeloma-darzalex-plus-vrd