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CLL Support Association
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Laymen’s genetic markers, fish test etc

Wondering where or maybe here someone can enlighten me about genetic markers involved in cll! Plan on starting treatment next month after almost 11 years W/W. I called the dr.s office this am 5:45 to be exact and asked to have a fish panel added. So I guess I’d also like to know what Genetic maker works best with which treatment? I’m north of Sacramento calif and no close CLL specialists. My hematologist/oncologist said he’s open to whatever I want to do! Me I wanna do what will work best! Thanks in advance for any and all reply’s!

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FISH panel is essential, but also you need to be tested for IGHV gene mutation and TP53 mutation..so please get them added, before treatment discussions, because they all will direct your doctors.

Also find a CLL specialist for a second opinion as soon as possible, you may need to travel, likely San Francisco would be closest...

Once you get your markers done we can help you further understand them...

The follow link to a recent patient guide is worth reading

nccn.org/patients/guideline...

~chris 🇨🇦

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Chris thanks so much! Greatly appreciated..........

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As an afterthought, be certain to get a Prevnar13, child's pneumonia vaccine and discuss Shingrix, the new Shingles vaccine with your hematologist.

Also here is a doctors list.. far from all inclusive, but a good start

cllsociety.org/toolbox/cll-...

Also as a last resort, CLL SOCIETY can arrange for a CLL specialist, to look at your test results and have a Skype or telephone conversation as a second opinion... not ideal in my view, but more eyes on your case the better. 🧐

~chris 🇨🇦

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Started a reply and lost it when diagnosed had fish test belwblisted markers! Does it make sense to do another now 11 yes in or will those numbers and markers stay as originally tested? Thanks again in advance. Hap

+ for cd5,cd23, weak cd20

Negative cd38

Lam bad light chain restricted

Bcl-1 negitive

No evidence of transformation

50% bone marrow involvement

So does this help still going thru results from 08 forward

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The nearest CLL specialist is probably Coutre at Stanford (near San Francisco, for those in other parts of the world). A friend and long time CLL patient lives in San Francisco and has not found anyone there, though they have some excellent doctors for other cancers.

Your other option would be to head north to Eugene, Oregon, to see Dr. Sharman. This friend has been treated by both specialists, because at different points in her CLL journey one, or the other, could offer the treatment she needed at the time.

Going down the coast, UCLA, City of Hope, UC Irvine, and UC San Diego have top specialists. Sometimes traveling farther works better because of where other family members or friends live. Let us know if there are other areas in the country that would make more sense, in your case, for a consult.

One person I’ve met traveled from Alaska to the LA area, because he has family here to stay with. He saw my doctor here for a consult, but was able to do his treatments at home. Many have a specialist who they might see periodically, as needed, and who connects with their local hematologist for routine monitoring and with regards to treatment.

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Thanks got a hold of dr Coutre office yesterday I’m going to push my hematologist/ oncologist and she what he says as I’ve altered my blood test extensively...... hopefully he gets it! I’m at the point need to do something!!

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You will be on good hands with Dr. Coutre. He has recently been part of panels for Onclive videos, and clearly is up to date regarding what’s up and coming for CLL. He isn’t known for being the warm and fuzzy type, but I’ve gotten to know several of his patients on line, and they all feel very well cared for.

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I live in Sacramento and travel regularly to MDA. Locally you might want to get a second opinion from Dr. Javeed in Folsom. He has numerous CLL patients and is in direct contact with my doctors at MDA (Jain and Weirda).

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Thanks for reply! Tell me a little about yourself where’s MDA? So you keep your local doc as well docs from MDA? How old are you age at diagnosis? There’s been a lot of info in short time! Not overwhelmed yet thank god thank again and will need to get some testing done asap!

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MD Anderson is in Houston and I was part of the early trial on Ibrutinib & Rituximab at MDA. I was diagnosed in Oct. '13 and began the trial in April'14. I went off Ibrutinib last June because it was running out of gas for me (I have 17P/TP53 markers which are the worst) so I went on Venetoclax & Rituxin and have continued to go to MDA due to the quality of care. Stanford is also good and a car ride away for you but I would encourage you to seek out a CLL specialist who is on top of the latest research and standard of care for your particular CLL. Yes I do keep a local Dr in case things should spin out of control and to feed my monthly blood reports to MDA. It's been an effective team concept for me.

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Wrote a very long response and it is gone!!

Will try to get thru it again.

I was W&W 11 years too! Under 65, 13q. Mutated, anemic, nodes grew. Had FCR 3 cycles. Got port...did great. Neulasta shot did it's job.

Had repeat blood, scans and BMB along with second opinion from CLL expert. My oncologist insisted. They all agreed on treatment. Traveled 4 hrs and stayed overnight for second opinion. Worth it.

G

How old are you? You never had your markers done? Once they know, then they will suggest treatment.

I didn't want Ibrutinib when I had one last chance to do 6 months or less.

They may suggest BR chemo. Many successes with that too.

Good luck! 🙏💕

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Thanks would love to read long reply as well thought I was pretty on top of things need to refocus get the markers figured out and find specialist

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BTW 56 diagnosed @ 46

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I think the most important markers are IGHV mutation status and FISH. Knowing these markers is arguably less important today than it was five years ago, but still important.

For many years a chemo treatment called FCR was the gold standard treatment for cll. What they learned over the years is that FCR does very well, on average, with mutated ighv cll and not as good with unmutated cll. There is evidence that FCR can do marrow damage and make one more susceptible to other cancers.

That risk must be balanced with the fact that FCR can give long remissions for some and for those with mutated ighv cll, a possible cure. Some with unmutated non 17p cll do well on FCR, and in some countries its still the gold standard.

As a general rule, if you have unmutated cll, FCR might not work as well. Indeed if someone has unmutated cll and 17p on their FISH, FCR is contraindicated.

The main new kid on the block for first time treaters is ibrutinib. Ibrutinib has recently been proven to outperform FCR and other chemo treatments for all types of cll. Ibrutinib appears to be less toxic than chemo, the big downside to ibrutinib being its a daily drug as opposed to limited therapy chemo (usually six months and done).

Since ibrutinib works for all cll, knowing markers just to make a treatment decision is arguably less important. Most first time treaters are doing well on ibrutinib 7 years out now, so its a good choice for just about anyone starting treatment.

For me, and others might disagree, there is one mainreason I would choose chemo as a front line therapy. Those who are young (under 65) and have mutated cll have an excellent chance of being cured by FCR. There is a lot to be said for a one time therapy that could put cll in your rear view mirror forever.

A counter point might be that the same subset of patients might get FCR type remissions from ibrutinib/venetoclax combos being tested now with less risk of toxic effects. We have about 20 years of data on FCR and just a few on I and V.

At major cll cancer centers they will do more sophisticated testing for harder to find markers like mutations in Notch, BTK and ATM. These markers can inform treatment decisions as well and predict resistance to certain treatments.

Here is a link to a slightly outdated but still relevant article by Dr Sharman. I say outdated just because its only this year a study has confirmed ibrutinib outperforms chemo. I think Sharman is still right in that FCR still has a place for certain folks:

cll-nhl.com/2015/11/fcr-emp...

If you want to understand more about markers, Sharman's blog is a great place to search for topics.

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Good information overall, but unless you can reference later research than that from the Ibrutinib vs FCR phase III ECOG-E1912 trial reported at ASH 2018, it's a bit soon to say that "Ibrutinib has recently been proven to outperform FCR and other chemo treatments for all types of cll."" There weren't many IGHV-mutated patients treated with FCR in that smallish trial, but the conclusion was "However, the impact of treatment did not differ significantly in the patients with IGHV-mutated disease (HR=0.44; 95% CI 0.14-1.36; p=0.07)."

ashclinicalnews.org/on-loca...

Neil

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Yes you took that one small piece out of context. As set forth in some detail in my post, I think FCR is an option for mutated Cll folks.

FCR for mutated did about the same as ibrutinib did in the study. I think when they write “outperform” in describing that study they are taking into account ibrutinib gets you the same length remission as FCR with mutated Cll, with much less risk of toxicity.

I even linked to an article which described in some detail why the risk of FCR might be worth it for those who are mutated and could get maybe permanent remisssions.

It would have taken me another paragraph in an already long post to make the distinction you make, a distinction I think I made by writing that FCR is on the table for that subset of patients that is mutated and young.

Maybe I am just posting too much lately.

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I was wondering if you were aware of newer research, as you hadn't provided a reference for what is a momentous change in therapy outcomes - the end of chemo based treatment for CLL.

No need for an extra paragraph, just change your sentence to "Ibrutinib has recently been proven to outperform FCR and other chemo treatments for all types of unmutated-IGHV CLL." That better fits with your considerable coverage of where FCR may indeed still be a better choice. Those not able to access Ibrutinib will appreciate your acknowledgement that FCR is still the gold standard in some (actually most) countries outside of the USA.

Thanks!

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I replied to cllcanada but I’m hoping you might take a look as well with my fish test results. You probably will understand them better than I and would love to hear what you think this test was done upon diagnosis in 08 do I need it repeated or are these markers in stone? Thanks

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Certainly push for a FISH test, we used to think they didn't change, but new research shows that the genetics do in fact change... clonal evolution...

IGHV mutation...tested direct, is about the only thing in CLL that appears to be stone like... 😳

~chris 🇨🇦

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Thanks every little bit helps ! Yourself and chris have made this a little easier to understand thank you

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OOPS, look below for my comments concerning Sacramento. Sorry haposwald, wrong space to reply.

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