Abnormal FISH results

Hi@prayerdulforever,
I love your name!
All I know about FISH testing is that it was done when my one and only younger sister was being checked for everything for triple negative breast cancer(TNBC). She had negative FISH results, so I really do not even know what that meant but assumed it was good. She had way enough with being diagnosed with TNBC and was the very first person having any type of breast cancer in all our family history. Hers was not genetic, but because of her diagnosis, I have been put on yearly mammograms although I am older than she and have basically the boobs of a preteen. I went for mammogram with normal results last year, but I was told I have dense breast tissue and 3D mammogram recommended for next one which I have tried to schedule with no success. I am seriously trying to change my Advantage Plan before the very soon deadline. I have a different one to change to in mind. I made a spread sheet today of all my options and the one I am in is not the best for 2026. Many are worse even! But I think I did find a better one to change to. 😊 I hope to get my changed in time.

Hi @prayerful4ever. Oh golly, ok, first thing I want you to do is take a deep, cleansing breath and slowly let it out…do this a couple of times. It can help you reset your mind and bring a little calmness.

Being able to see test results right away can have its merits. But when there is information presented without the presence of your doctor, it can be both alarming and downright scary when searching for what the results might mean. I know, it’s only human nature for us to go skulking around trying to find answers or explanations. Raising my hand as a guilty party myself. But so often, the results need to be taken in context and in relation to other patient factors and better left to interpretation by our doctors…the experts. ☺️

You were diagnosed with CLL 5 years ago and apparently may have been active for at least 5 years prior to diagnosis? You haven’t required any treatment to this point, which is encouraging. It’s generally a very slowly progressing form of leukemia and remains one of the more treatable forms. But over time CLL may progress to the point where it needs intervention. Some mutations which caused the CLL may present a little more of a challenge with treatment.

Doing the search myself for your mutations, at first glance, the results do come up showing ‘unfavorable’…BUT, and it’s a big but, you need to dig deeper than headlines! ☺️
There are medications such as Zanubrutinib which have shown great efficacy in the treatment of these mutations. One such article recently released by ASH Publications just a couple of months ago, so it’s very current has this to say:
~This is an excerpt from that article, with the all important bottom line;
“ In conclusion, zanubrutinib demonstrated strong efficacy in high-risk del(17p) and/or TP53 CLL/SLL, with a tolerable safety profile, further supporting use of zanubrutinib in both frontline and relapsed/refractory settings.”
~Here’s the link to the entire article in ASH Publication: https://ashpublications.org/bloodadvances/article/doi/10.1182/bloodadvances.2025015986/546754/Zanubrutinib-in-the-treatment-of-patients-with-del

I found also found another member, @marytheresacll who has the same mutations as yours. I’ve posted links to two of her comments regarding her treatment: I’m sure she’d be happy to speak with you! Just tag her in a conversation by typing in her @name or in one of the boxes that open up in either of these replies below:
https://connect.mayoclinic.org/comment/1095599/
~~~
https://connect.mayoclinic.org/comment/1013720/
Since you haven’t even started any treatment yet, it’s way too early to worry about ‘what if, or how long’! Sit down and talk with your hematologist oncologist. They may go a long way in reassuring you! Each case is different so it’s really not something that can be compared with someone else’s journey.

Having gone through successful treatments for a very aggressive form of leukemia 6+ years ago, things I have learned along the way are to first and foremost, remain positive! We can change our entire perspective with positive affirmations. Keep a sense of humor is also paramount. Diversion and distraction work wonders for brief respites from worry. Mediation, exercise, staying active and trying to maintain a level of normalcy are super helpful, along with focusing forward on things that are meaningful in your life.

Now don’t forget to breathe!! When is your consultation with your doctor?

Hi @loribmt
I want to start out with a BIG thank you, I did not sleep a wink last night, having gotten the results that I have shared yesterday morning. Right now, I am just getting home from work, which I am way grateful for still being able to perform my job. I am still working 40 hours a week, caring for our home and property, and I still fit in a 2 mile walk almost every night with my girlfriend, this after walking an average of 4-5 miles a day at work.

I tell myself every time NOT to even look at test results because every time they just rattle my day until I am able to see my oncologist.
Just reading your reply has help a LOT in settling me down for the next week, and I am NOT going to look at the results when they post my CT scan this time. (LOL)
It's funny, I don't feel sick, I know I have some swollen lymph's and a slightly swollen spleen, but I truly don't feel anything. I eat good, am not losing weight, don't have night sweats, I literally don't feel like I need treatment.
Anyways, THANK YOU for the advice, the links and the encouragement

You were diagnosed with CLL 5 years ago and apparently may have been active for at least 5 years prior to diagnosis? Yes
When is your consultation with your doctor? December 11th....I just picked up my Barium for my double CT scan tomorrow after work

I pray that God continues to bless you on your journey, and I hope that we get to share many milestones together.

@1pearl I hope and pray that all goes well for you in the new year

Hi @prayerful4ever ,

Thank you and I hope you are feeling more peaceful today. Prayers for all of us to have an improved New Year.