My wife who loves me put me on this site to get details from others suffering from CLL. One week diagnosed i have an 11qATM deletion heterozygote and a absolute monoclonal lymoh count of 12,000. My reds and platelets good . No splenomegaly but nodes “waxing and waning” all over. Plus a rash to pollen bug bites..pollen etc.
If you are an 11q ATM CLL, please tell me when you were treated , how old you are, which center
And what meds did they give you, how long. .....did it work? How long disease free etc?
Any clinical trials you know if?
Any information would be greatly appreciated .
Stay well and God bless you for answering
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My father is 11Q- and unmutated, he is starting treatment soon after a wait/watch period of ~3.5 years, it's generally currently believed that treatment via novel agents such as Ibrutinib or clinical trial is preferred over chemotherapy for 11q/unmutated although treatment options will depend on country of residence. You can do a search for clinical trials via clinicaltrials.gov/ct2/home
Only 6 days new to this. I am still confused on unmutated VS mutated? If he is 11q del ATM.....that’s mutated by definition? Or am I missing some other lab value. We haven’t seen DR yet to explain this. Thank you so much for your patience
1) Flow cytometry looks for specific protein patterns in CDs (culsters of differentiaton) in the lymphocyte cell membrane to determine which blood cancer you have
2) The FISH test looks for common chromosomal deletions and mutations
3) IgHV hypermutation test looks for changes in the IGHV gene on chromosome 14 to see how much it has changed from your inherited germ line.
IgHV mutated correlates strongly with a longer time to treatment and longer remissions after treatment. About 30% of those treated with FCR with mutated IgHV have indefinite remissions lasting well over 10 years. With unmutated IgVH, non chemo treatments are a better choice if they are available in the person's country. If you don't know your IgHV, if your CD38 and ZAP-70 results from your Flow Cytometry testing are both negative, you have about a 70% chance of being IgHV mutated.
I cannot find any lab result paper with that IVGH mutational result. I think they didn’t do it. I know I shouldn’t jump gun on these doctors as it is only 6 days into initial but this is what happens when you read stuff., thank you for your help! Bless you for it. Tears again .
Outside of the USA it's rarely done (because it generally can't influence treatment decisions, as access to non-chemo options is limited). In the USA, it may be done at diagnosis, but it really only needs to be done prior to treatment. Mutation status is unlikely to change, but you have about a 50% chance of finding out you fall into the less prognostically desirable unmutated group.
I am by no means medically trained or even very smart when it comes to this disease. But from what I've read I think if you are 11q deleted you are most likely unmutated. Again from what I've read, that used to mean a lot more than it does today with all the new treatments available. The thing that Dr. Wierda told me about 11q unmutated is that chemo would not be a good option for me. He said it would give me remission but only a short one and that's why I went into a trial.
When I was diagnosed I had positive ZAP 70 and CD 38 which are often associated with unmutated IGVH. That worried me because unmutated IGVH carries a less optimistic prognosis. They did not do the gene test for the mutation at first because it is expensive and not done routinely. But my research revealed that in about 25% of cases there is a discordance between ZAP70 and mutation status. I had to insist and pester the hematologist for weeks until he would do the test. When he finally did it, the test came back as mutated (which is good).
This was in Switzerland, but I suspect something similar may have happened to you. The IGVH mutation test is not done routinely and you would probably need to ask for it. It is expensive (I think I paid about $1,500) but worth it.
Great advice thank you very much. His CD 38 is 5% on flow. His Zap70 was not performed as blood too old. All his other mutations were negative including chromosome 14 where I believe the IVGH resides. But that may not be the correct test to drill down and look at gene. I read the 11q is not associated in general with that combination of gene defects. I will research further. Again I do want to be prepared in any event. I don’t want doctors to downplay his illness. I mean it took a year to get to the diagnosis of CLL. I won’t let this test slip through the cracks. Thank you again GumpyFrog. You are AWESOMELY smart.
Jeff OMG Thank you . My wife is here with me . Yes i just got FISH today. You said Texas is good . I am talking to MD Anderson. I heard they were very good. Did you have side effects from the drugs? I have never blogged before so I am pretty lousy at this . Forgive me if I am slow to respond or if I have to answer door or phone .if you are heterozygote doesn’t that mean there is one good allele? Does “more aggressive” mean half time of a regular CLL or is that all just going up in smoke with new meds?
When the disease progresses does that mean you can new mutations if it recurs?
I don’t understand this molecular ? Did the treatment drugs affect your other blood cells?
Try and relax. Gather all your info over the next year or so. 11q tends to progress faster to treatment than most and is bulky in the lymph nodes.
Now is the time to get all your vaccines such as the new Shingrix shot for shingles, NOT THE OLD shot. We can never get live vaccines. Get in shape because when you eventually need treatment, they all whack the body so it helps to weather that storm.
Remember, you may never be treated with what’s out there now so don’t bother worrying about side effects now.
Go talk to an expert and let the doctor do the worrying for you.
Worrying about tomorrow doesn’t change tomorrow, it just robs you of your sanity today.
I go to MD Anderson. I’m biased but believe they are the best in the US.
Again more great sage advice. when I read your words my anxiety level goes down.
one thing i have learned-the deletions and mutations etc were developed in the chemo era because some patients did not respond to chemo. Most of the doctors already practicing today were trained in that era. The doctors who are now in school will be raised in the specialty drug era. Since most of these drugs are relatively new- ibrutinib was in trials 7 years ago-long term expectations have not had enough time pass to know for sure.
Hi “my parents voted for nixon too” by the way. I forgot to vote that election . Ummm I love your answer. It gives me so much hope that I am more than just a 62 year old man with an 11q CLL. Thank you for that you made my weekend. My wife is crying tears of joy as we read your post. So much hope! Wow!
Hi Neil Again not sure how to blog so I just keep replying forgive if I wrote twice on one reply.,. The blood was too old to do the Zap70 so we have to repeat it. The CD38 was 5% on the flow so that’s a negative ? cause it’s under 30% . I guess he is half way there to mutated which is a small blessing in all this molecular madness..
ZAP-70 is less reliable/repeatable than CD-38, so it's unlikely to change the indication of your IgHV mutation status. You are right about the positive/negative labelling. Depending on the test there's a percentage threshold which separates positive and negative. MD Anderson are most likely to run the IgHV test in any case.
With respect to blogging (posting), a couple of tips:
1) I gather your wife established your account and handed it over to you. That's causing confusion for our membership with the username your wife chose, so I suggest you change it as described here: support.healthunlocked.com/... Chose something that no-one you know would associate with you to protect your anonymity.
If your wife wants to stay involved as a carer (and we have many carer members), she can start her own account.
2) It's best to keep replying to your initial post while the discussion stays related and starting a new one for another topic Click in the blue Write box at the top right of this post to start a new one.
3) When you post, be aware of the importance of the answer you chose to the question Who can see my post?
- Anyone, means it is searchable Internet wide. That's how 70% of new members find us, but it may result in less (and less personal) answers to your post.
- Only community members, means just this CLL Support community can read your post.
You can edit your posts at any time by selecting the 'More v' under your post/reply and selecting 'Edit'.
Neil I want to stay is to stay part of community but I don’t know how to lock post. I tried edit button but I cannot find the lock insignia. I searched for help. Sorry if my post is confusing but we are sharing the account. I am literally reading posts to “my love” now. My account should be wehaveCLL as we are so close.
It's best that you learn how for future posts, but reply here if you have difficulty.
Great to hear of your very close marriage, but do keep in mind that it can be tougher for our healthy partner than for us who are living with CLL . They can read worrying (usually very outdated) information that is unnecessarily upsetting. The admins and volunteers make every effort to keep content factual and evidence based, but older content (even just a year or so) may well be out of date!
Was diagnosed in 2014 (I'm 56 now) and have been on Ibrutinib for almost 2 years.
I feel fine and my blood counts are all in the normal range, despite once having had a white cell count of 264k!
I am typing this message in my hotel bedroom at my local airport - tomorrow my husband and me are flying to Costa Rica for a week in the rainforest (I want to see a sloth!), then we're off to Key West in Florida (margaritas!) before finishing off by acting like kids again with a week in Disney World!
As you can see, there is life after a CLL diagnosis!
As others have said, new medication is doing great things for us, and things are still improving and at a rapid pace.
Please try not to panic - read up a little, ask questions here on this amazing forum, find a good CLL specialist, and then try to get on with life.
As I'm in the UK, I can't really help with your question about treatment centres but I hope I can help calm your fears a little by sharing my own situation.
Right, I'm off to bed...I have a plane to catch in the morning!😉
Deb, Thank you kindly for lowering my anxiety level again! Have safe travels and sounds like so many good times, good health and fun. Thank you for the advice.
I was diagnosed in July 2015 as 11q del mutated when I was 56 yo. I went through a lot of the same shock and questions you did but I found this website and the cll society which gave me a lot of great information. There are so many good treatments now. However, you do need to find a doctor that is Cll expert. I also recommend you find a CLL support group near you. You can find them on the CLL society website. I was recommended Dr Kipps at UCSD. Lucky for me, but I also did my homework well! Started treatment on clinical trial in Jan 2017 on ibrutinib plus venetoclax and I am now MRD negative meaning they can’t detect any cancer in my blood or marrow. I am now off trial, taking no drugs since Feb 2018, and living life with no restrictions and with much more energy than in 2015. Not cured, but hopeful for long remission.
Build a support team and do your homework. You can do this!
Thank you so much Buzzjacket. MRD is “minimal residual disease” negative. Did they use FISH to check for that or FLOW to look for MRD? How often were tested? Did the trial end and then they tested your blood? Sorry to ask so many questions but I want to make sure “my love” gets the correct followup
A bone marrow biopsy was performed 15 months into the trial and I was determined to be MRD neg in the marrow. It’s much more difficult to clear the marrow. Venetoclax has the capability of doing that. I was supposed to be randomized on either placebo or continuing ibrutinib at that point, but I elected to get off the trial because I did not want to continue on drugs and risk any side effects.
You’ve already got tons of good advice but I’ll add my story as well. Diagnosed in 2012 with CLL at my annual physical, thankfully my Doc knew enough about to tell me not to worry about it. I did start seeing an Oncologist and then pretty much just watched and waited for 4 years.
Then as the WBC started moving faster finally got the Fish test which highlighted the 11q deletion.
The one watch out I will mention was that as the WBC was starting to move very rapidly I suddenly became very anemic. My Doc says that only happens to CLL patients about 10% of the time. They first put me on prednisone so I didn’t feel bad but I now realize I was headed for the exit door very rapidly!! We treated that with Rituxin for a month then started a six month course of Bendamustine/Rituxin which is much easier on your system than other chemos. I also started Ibrutinib at the same time.
I went to Dana Farber for a second opinion in this process and their more specific blood tests revealed that I also have a little 13p and complex Karyotype to keep my 11q company.
It’s now been 18 months since completion of chemo, I’m still on Ibrutinib and in remission. I feel fine and still work full time and play as much music as I can fit in.
Slow down. This is all new. The treatment landscape has changed so much in the last few years that the bad deletions aren’t so bad anymore. I’m unmutated IGVH and deletion 11q, supposedly markers of a bad prognosis. I was treated 4 years ago with an old chemotherapy protocol of bendamustine and Rituximab (BR) because the new oral drugs such as Ibrutinib had not yet been approved for frontline treatment, and I was seeing a hematologist/oncologist that wasn’t up to speed and didn’t have access to clinical trials. Nevertheless, the treatment put me in complete remission for almost 4 years now with no signs of disease progression. And I switched my care to a CLL specialist, so I will get the best possible care when I next need treatment. I’m confident and CLL is now just a condition I have, and not a death sentence. I started this CLL journey when I was 62 and now I’m 66. You will get through this.
As I said previously I am 13q, 11q and unmutated and am being treated at M.D. Anderson. I was 69 when I was first dx and went about a year and a half before treatment and like I said, I am in a trial. For the last 3 bone marrow biopsies, I am MRD negative - which Dr. Wierda explained to me that that meant that they couldn't detect any CLL cells in 100k cells. I think MRD negative is the best we can hope for and I am there. There are always trials at M.D. Anderson but at other cancer centers as well. I don't know how long I will stay MRD negative since they don't have many out of this trial yet to have any definite conclusions yet but from what I was told ALL of them have stayed MRD negative so far. Stay positive although I know how scary it is now and you will be fine. Go live your life as if you didn't know you had this.
I am also 11q and unmutated. I was diagnosed at age 54 in November 2013. I was on watch and wait until the fall of 2016. At that time, my hemoglobin had dropped to 8.0, I was having frequent infections, significant weight loss, and fatigue was too much to handle. Around the same time I was diagnosed with blood clots in my legs and lungs. I was started on an anticoagulants and then ibrutinib. Could only stay on the ibrutinib for 10 days as it did not mix well with the anticoagulants and caused bleeding so I started on a trial of TGR1202. I had a partial response to that medication and was on it for 10 months. My CLL once again got out of control with all the same symptoms as noted above and I was given acalabruitinib in January 2018. I am still on it and have been responding to it very well. There is no interaction with the anticoagulants and I had only minimal side effects the first couple of weeks (headache, very mild diarrhea). My labs last week were all normal. When I was diagnosed in 2013, the options for treatment were limited. In just 6 years, we now have many options from which to choose and the future looks bright. Remain hopeful and live your best life.
Hi Nan, thank you so much for reaching out to me. Every time I fall into despair waiting to see my doctor someone throws me a lifeline. sounds like a good trial? Where can I get on that trial? What’s centers have it? Did you have bulky nodes? Best wishes,
I had extremely bulky nodes all over my body, but that is typical with 11q. When I was given acalabruitinib it was not through a trial. My doctor was able to prescribe it for me off-label. At the time, he was deciding between acalabruitinib and Venetoclax. He decided on the acalabruitinib because for the 10 days I was on ibrutinib, my CLL was responding really well and the only reason it had to be stopped was because of my bleeding issues. Since it was felt the risk for bleeding with acalabruitinib was not quite as high, he thought he would try that first and keep venetoclax in his back pocket. Acalabruitinib is still in clinical trial for CLL, but is already approved for MCL. That is how he was able to prescribe it to me outside of a trial setting. If you are interested in participating in a clinical trial, you can go to Clinicaltrials.gov. Then search "CLL". It will come up with all the clinical trials currently going on and you can see if there are any that would be convenient for you and for which you would qualify. However, let me add that with normal hemoglobin and platelets and a lymphocyte count of 18,000, it still may be quite a while before you need to start treatment. By the time treatment is needed for you, there may be new therapies available and new trials on the horizon that we don't even know about yet. I know how overwhelming this is, so please feel free to ask any other questions you have. This group is filled with very knowledgeable people who got me through some of my most difficult moments. You will feel much better once you meet a CLL specialist. I promise, it does get easier.
How long has he been living with this? It is very hard to live like nothing is happening especially since we haven’t had any consultations with CLL specialists.
He has been living with it about 12 years I believe. His blog has the entire history. He was one of the first on the clinical trial for imbruvica. He recently did Car-T as well.
There is great amount of CLL Information on his site.
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