Hi everybody,
I was diagnosed several years ago; you can read all about it in my posts, if you want. (Don't blame you if you don't 
However, recently, I've been reading into my old FISH results, etc., which I used to be blissfully ignorant of--& I've become mightily concerned by the whole ATM-deletion thing.
How terrible is it? I'm starting to work myself into a panic ...
--Dave!
Dave,
ATM deletion usually refers to an 11q deletion. They are typically bulky nodes presentation and fairly quick to needing treatment.
However, they respond better and longer to BTK inhibitors than any deletion.
Don’t panic!
Jeff
I'm in almost-full panic mode, Jeff, so thanks.
I admit I read a nine-year-old article by CLL specialist Dr. Sharman (?) that did me a world of hurt.
Hoping to eclipse the dark information I read with some possibly positively angled posts here, such as yours, written by smart people, such as yourself.
--Dave!
Dave,
The information that I shared with you above was literally told to me by Dr Wierda of MD Anderson today at my appointment with him.
I too am 11q deleted and so many good things have happened because of the many great scientific minds.
Fyi, I was diagnosed almost 10 years ago and take ibrutinib for the last 3 years and feel terrific.
Jeff
Hi Jeff,
Oh? 11q- is the same as ATM deletion?
Is it detected only by BMB, or can it be picked up by a more-common FLOW blood test?
Another question: is all 11q- unmutated, but not all unmutated = 11q-?
I'm starting feel like I'm cracking out of my panicky enclosure, and seeing a ray of hope ...
--Dave!
Dave,
11q del is most commonly the same as ATM deletion. There’s 2 arms on that chromosome and sometimes one or both are missing.
The deletion is picked up by a blood test and a BMB as well but most doctors seem to be happy using the blood these days thankfully.
Unmutated is less favorable than mutated and is usually associated with 11q del but not necessarily. It can occur with all the other deletions as well but not always.
Lastly, stay away from Dr Google.
Jeff
Jeff,
Ah, most interesting.
No need to answer, friend, but I wonder if such a deletion can "disappear" with treatment, if one reaches MRD-?, or is it more of a permanent thing?
--Dave!
I note you read an old post of mine on ATM, which, likeJustasheet1 's reply, should be reassuring. I hope that you are appreciating that given you live in the USA and don't need to be concerned about treating yourself with the older chemoimmunotherapy treatments that didn't work well with ATM, you should concentrate on reports about how those with ATM do with modern, targeted therapies. Also don't bother reading anything older than about 5 years ago. You'll find the news is much better. You picked a good time to have CLL with an ATM deletion.
Neil
Hi Mr. Neil,
It's those "reports about how those with ATM do with modern, targeted therapies" that I'm looking for here, yeah, as searching Google for them didn't turn up much lol
Thanks as always, kind sir!
--Dave!
Please don't randomly Google stuff related to our cancer, you will save yourself some stress! Older stuff tends to be at the top, since it has been viewed the most. The newer articles obviously will not have been read as many times, and will be buried. Universities and publications are not spending $$ getting articles they are making freely available be at the top of a search engine, that would be a waste. If you must, read only *newer* items from *medically based* websites. Check the publication date, and who wrote it. Some random ".com" website? A University? A Government site? CLLSociety.org, LLS.org. and other ".org" websites are generally non profit organizations, who aren't trying to sell you something. The only exception to that off the top of my head is the drug industry sponsored "cllcancer.com", which has links to PatientPower, CLL Society, and some others in its "support" section. I like it because AbbVie and Genentech have direct links to their patient funding options, in addition to some reputable non-profits. And the basics are laid out generally, you get a big popup notifying you when you are leaving that site for the drug promotional site. So not too bad IMO. If your doc isn't very savvy about finding free drug for you, this website can guide you to at least the manufacturer to see if you qualify for their free/reduced expense options in the US.
Nine year old CLL info is really outdated. The treatments have advanced so much in the last 5-6 years and there are so many new drugs that outcomes are much, much better. I've been on Ibrutinib and my symptoms improved almost immediately. Trust today's tratments.
I started seeing Dr. Sharman in 2015. Every time I would see him after the first visit, he would say "I've got something better". It is still what he says.
look ahead Dave. There is a lot of good news for those who have the risk markers.
Hope you're feeling well!
JM
Hello DRM18
Not the end of the world. I am unmutated, 13q deleted with ATM deletion. I did B+R chemo and was in remission for 3.5-4 years, now starting V&O and things are looking good. Blessings.
Really, Big_Dee?
Somehow I thought 11q / unmutated & chemo didn't mix?
Congrats on bucking the trend!
--Dave!
It worked for Big_Dee he just had a shorter remission.
Hello DRM18
It is a personal choice and depends on what your priorities are. When I did B+R I could have chosen ibrutinib instead. Average remission length at that time on B+R was 3-3.5 years for unmutated and 5 years for mutated. Did 6 months of B+R and then over. Ibrutinib remission time was up to 6 years and counting. I chose to kick the can down the road hoping something better would come up and it did. 4 of 5 CLL Specialists understood my choice and agreed. Blessings.
Hello DRM, I am happy to be the one to give you encouraging information about your Cll. As Neil correctly wrote, while 11q deleted Cll (which is where the ATM is located) carried a more poor prognosis for Cll in the chemo days.
Interestingly enough, not only has that changed with ibrutinib, there is some data to suggest those with 11 q Cll actually have an excellent prognosis, even compared to those with favorable markers:
“When we did this, we found that the analysis revealed that patients with 11q, when we assimilated the data from all of these groups, actually did better than patients who had no detectable cytogenetic abnormalities. Now, the P value is approaching significance, so if anything, we can say, with some assurance, that the patients are not faring worse. We need to follow these data along”.
onclive.com/view/analysis-s...
And how about this article:
“Surprisingly, we observed that ibrutinib-treated patients with del(11q) actually had a significantly longer PFS than ibrutinib-treated patients without del(11q) (42-month PFS rate 70% vs. 65%, P = .02)”.
These articles appear to suggest that with btk treatment, 11q is arguably a good prognosticator
I’ve read more than a few articles that say the same thing. Since the atm gene exists on the long arm (the q arm) of the 11th chromosome, many people with 11 q Cll also have a deleted atm gene
Add to that, no matter what markers we have, good or bad, these markers guarantee nothing. We can have good markers and aggressive Cll, or poor markers and indolent Cll
Of course I qualify this be saying I’m no expert and these are just lay opinions. That said, I have linked you to a couple articles that clearly state that the prognosis for 11q Cll have much improved with the new novel drugs I hope these articles are helpful to you. You can google 11q and atm with ibrutinib and perhaps find even more examples of encouraging data.
You're pretty awesome, CajunJeff!
I read your post with great interest, and am thankful, sir.
... Seeing how useful the -ibs are for 11qs, I wonder why they decided to treat me with V+O three years ago?
Anyhow, cheers!
--Dave!
Possibly because of the rise in BTK resistance, before they knew the venetoclax resistance percentage, coupled with data showing the short term, multi drug regimen was getting deep remissions. Even if overall side effect percentages are the same for the two options, a shorter treatment time means less time dealing with them. Thus overall better patient Quality of Life. IMO. Some people can't tolerate/have easy access to the infusions/infusion centers, too. Ask your doc, it would be interesting to hear the rationale for you.
Thanks, SofiaDeo!
I wish I could, but I can't ask the doc who recommended my treatment 3 years ago, as seeing him was a one-time shot, but I believe he said it was because I was youngish (51 at the time), basically.
Curiously, I spoke with Dr. Davids from Dana Farber last week (another one-time shot lol), and he said, if I need retreatment, he'd opt for V+O again, assuming enough time has passed, but if a few years haven't passed (I'm on the cusp of 2 years since stopping all meds right now, but he made it seem like 3 would be ideal--I couldn't really pin him down on that), then Acalabrutinib would be the choice.
Who am I to doubt him?
... Your wisdom is always appreciated, SD!
--Dave!
What I personally am doing, is not looking so much at "X amount of time must pass" as an absolute for retreatment, but looking at X as compared to my 4 month doubling time variant. If I get only 18 month remission, I may still retreat with the same agent. I personally am not having intolerable side effects, compared to when I was on ibrutinib. So for me, personally, a BTK will be a last choice. But that's based on my personal variables. I know there is debate about "what is a good time for remission, before redoing the same treatment is a good decision." And of course, our docs would always prefer our remissions be longer.
And considering how some people do react strongly/have very severe side effects, I am beginning to believe one shouldn't necessarily spend a great deal of time getting invested in choosing one treatment over another. If you start it, and can't tolerate it, you will need to change or be miserable. I should have stopped my BTK when after 4 odd months, my side effects were worsening instead of resolving.
I think the waffling on V&O might have something to do with Covid. Avoiding completely wiping out one's abilities to make antibodies for at least a year after treatment stops, may not be a good idea idea if a new, really evil Covid strain pops up. I know Covid was a major factor in why I did V alone, versus V&O.
I am an 11q too, and I will repeat something that encouraged me and I have posted before. From data from British Columbia, “Although median TFS of 11q- patients in this cohort was short at 2.5 years, OS remains long at 14.7 years, even when most patients received initial treatment without alkylators.”. And keep in mind that the majority of these folks did not get access to targeted treatments as this paper was from 2016, the average will be much longer now 😀
p17 deletion. Can anyone advise or cheer me up?!
Started Zanabrutinib
Feeling confused about starting treatment 😱
Female Issues ?
What kind of fatigue do you have?
