Just got my FISH results

[fugazi]

Hi everyone, I've just been to see my haematologist for my FISH results, the first since diagnosed 3 weeks ago.

He says I have both the 11q and 13 deletions. I know the 11q isnt very good so we were pretty disappointed.

I am starting FCR treatment next week.

Could someone let me know what to expect? I am trying to stay positive, knowing there are good treatment options, but have also read about the relapse rates etc. Not sure what the current state of play is, so any info would be appreciated.

Many thanks.

[Jm954 Administrator]

You’re in Melbourne and I hope @AussieNeil will comment.

If you’re 11q then you have an 85% chance of being UNmutated.

FCR is not equally effective across all subgroups of CLL patients. A retrospective observational analysis of 404 patients who were treated with standard FCR as first-line for CLL revealed that different genetic/chromosomal combinations predict the success rate of this therapy [Rossi et al. 2015]. In univariate and multivariate analyses, patients with a mutated IGHV gene had a 5-year PFS of 58% versus 36% for those with an unmutated gene (p = 0.0005). For patients harboring 11q chromosomal deletion the 5-year PFS was 18% versus 49% for patients without this deletion.

Ibrutinib has changed this landscape for 11q and if you were able to access it that would almost certainly be a better option for you.

Alternatively, there is a clinical trial of Zanubrutinib and an immune checkpoint inhibitor BGB-A317 which looks good and would be worth investigating with your team before committing to FCR.

Here’s the link.

centerwatch.com/clinical-tr...

And another trial here

centerwatch.com/clinical-tr...

Both trials are in Melbourne.

Whatever you decide, good luck and let us know!

Jackie

[fugazi in reply to Jm954]

Wow, thankyou I will discuss with my team.

[AussieNeil Administrator]

You are in the best city in Australia for access to clinical trials, which may be a better choice than FCR for you. Get in touch with Dr. Con Tam at the Peter Mac. He has been coordinating a Venetoclax/ibrutinib trial which is providing very encouraging results.

Neil

[fugazi in reply to AussieNeil]

Cheers Aussie Neil. My haemotologist tells me FCR is his treatment of choice. And Ibrutinib is only available for remission CLL? I don't know whether to push for a trial or go with the FCR.

I will neet him Tuesday when he intends to begin FCR.

[Jm954 Administrator in reply to fugazi]

It would be good to let him know that you’re considering a trial before Tuesday.

[AussieNeil Administrator in reply to fugazi]

V+I is available for first (front line) treatment via clinical trial. closh is on it. See healthunlocked.com/user/closh

Neil

[fugazi in reply to AussieNeil]

Cheers AN

[lankisterguy Volunteer in reply to fugazi]

Hi fugazi,

We often encourage newly diagnosed patients to get a 2nd opinion from a CLL expert.

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And your comment "My haemotologist tells me FCR is his treatment of choice."

causes me to ask- whether your haemotologist will even consider your opinion and choice of treatments. He seems very opinionated but limited in his knowledge of CLL treatments and clinical trials. So please take Neil's suggestions and let your doctor know you are choosing to delay treatment until you can consult with Dr. Con Tam at the Peter Mac.

-

If your doctor reacts negatively - then you should consider changing doctors.

Many of us here have found it important to only use doctors that involve us in decisions about our health- since we have the most "skin in the game".

Len

[fugazi in reply to lankisterguy]

Cheers Len. Thanks

[Bubnojay]

Hi fugazi

Hope you won’t mind me asking a question or two, how high are your lymphocyte counts and was the sweat you experienced when you had your cold a drenching one requiring changing bedclothes ? What other effects are you suffering ?

I only ask because having had cll for nearly 8 years and having the usual symptoms of tiredness and poor temperature control, I am kind of amazed that 3 week’s after diagnosis you are being precipitated into treatment, especially without access to a second opinion by a CLL specialist.

If I have missed something in your previous posts which would explain the urgency I apologise, but this is unusual to me as CLL is not usually an illness requiring treatment so soon after diagnosis without time to think.

Best wishes

Bubnjay1

[fugazi]

Has surprised me also Bubnjay. Lymphocyte count 16,000, same as 3 weeks ago.

But I do have the 11q deletion, and he thinks my lymph nodes have grown since 3 weeks ago.

It is all so new to me, Im not sure what to think. He has come very well recommended and has been associated with the Venetoclax trials etc.

[J_88 in reply to fugazi]

Why are you needing treatment? you have enlarged lymph nodes?

[thompsonellen]

Please seek a second opinion from a CLL specialist. Your lymphocyte count is really low and stable for 3 weeks. I wasn't told to consider treatment until I was at 60,000 and that was only because I'm 17p deleted and things move more quickly (and the number was about 100K and I completely crashed by the time I started treatment 3 months later). I'm not a doc, but this doesn't sound right. Please consider Neil's advice (he is an amazing resource to us). Given the statistics, it seems like ibrutinib would be a better choice, and if you can access it via a clinical trial, it's worth exploring getting into one, not to mention, they will tell you if you really need to start treatment now.

[fugazi]

Thanks guys, I will call Con Tam on Monday

[very]

My husband had FCR in 2016 and is still in remission. He had very few side effects, but he did get 2 chest infections which he had to be admitted to the hospital for iv antibiotics. He was very careful about mixing in crowded places, and if anyone in the family had a cold they did not visit.

jenny uk