I’m newly diagnosed. I have positive for Zap 70 and CD 38 and Trisomy 12. My CBC and BMP normal. My IGM is low at 28. Ive read and read cancer articles on Zap 70 positive and CD38 positive is a more aggressive CLL. Can someone who has these markers let me know what your oncologist is doing? I’m scheduled for my 2nd follow up Friday Jan 3. I’m super anxious;
Diagnosed with CLL November 2019: I’m newly... - CLL Support
Diagnosed with CLL November 2019
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annetxfan
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Zap 70 and CD38, unmutated, Trisomy 12 etc. tend to be more aggressive. That being said the new treatments called "Oral Novel" agents (a pill) knock the socks off of these. Look up Imbruvica and Venetoclax and the Clarity Trials. Have a happy new year, when you need treatment these should give you many more New Years ahead as well.
NewdawnAdministrator
CLL is listed as a ‘rare cancer’ on NORD (National Organisation for Rare Disorders) and it is classified as an ‘orphan cancer’ (something Chris used to remind us of occasionally).
‘Experts have different ideas about what makes a cancer rare. Some say that a type of cancer is rare if doctors diagnose fewer than 2 in 100,000 people each year.
Other experts say it is rare if fewer than 6 in 100,000 people are diagnosed each year’.
So we are more of an exclusive little club than we imagine and special every one of us! 😉
Sorry to interject on your post Anne but I thought you might find the information interesting too as you reluctantly join our ranks. What I would say to you is recent developments in treatment have blown some of the previous adverse indicators out of the water and you really need not dwell on mutational status in quite the same way now. There’s some heavy hitters out there now (like the Ibrutinib & Venetoclax I’m on) and they are blasting through the deletions, additions and mutations like a scud missile! Stay strong! 😉
Newdawn
What test do you take to know if you are mutated or unmutsted IGVH? I’ve had 2 FISH panels on blood and lymph nodes without mention of IGVH mutations!
Hi Anne
I wanted to respond to your question which reminded me of the first question I ever asked this amazing group shortly after I was first diagnosed too, but I also just wanted to let you know up front that when it comes to markers and so forth I really don't write at all with the same type of knowledge or eloquence as so many of our other members do, as you are about to see! 
I am also ZAP-70 and CD-38 positive. It's my understanding that what can matter significantly here in terms of mutational status is the actual percentage of each that you happen to be. As others have already said, its generally true that to be positive for both may mean you are unmutated, but as my CLL specialist Dr. Furman told me, we also really can't make that assumption. I had one initial test for my mutational status shortly after I was diagnosed and as will happen sometimes, that first test was not conclusive either way. Dr Furman felt it was actually not needed for me to test for that again until or unless I get closer to actual treatment.
In fact at my most recent visit with him this past October, he seemed very unconcerned about the fact that I am ZAP-70 and CD-38 positive, because with the newer treatments and combinations of treatments, this is becoming less and less significant to someone's overall outcome.
I hope this helped a bit, and I wish you the best of luck with your appointment and I hope that you have a very happy New Year too.
Debbie
I'm doing well today Scott, I hope you are having a good day too.
Hi Annetxfan,
Welcome to our group. My version of CLL is also trisomy 12 and although I have mutated IGHV, I am one of those outliers that is Zap70 and CD 38 positive. So you never know. What I mostly want to say, is that this is a really stressful time after diagnosis. I remember feeling like I was desperately searching for all the answers and doing tons of research about CLL early on. I’m a nurse which I think almost makes things worse. But that being said, I prefer to know the facts (which for me is based on scientific research). Everyone is different. I think if you can stick to reliable sources for guidance about what to focus on when newly diagnosed, it will be a great help. This website has excellent info about getting up-to-date on your immunizations, reducing risk of infections, and CLL Society has good info too. Talk with your doctor at each visit. If you can, bring a family member or friend with you who can write down what’s said to review later at home. If it’s possible, it is a very good idea to eventually see a hematologist who is a CLL specialist. Get a copy of your lab work from each visit. It’s good to see that you are already tracking your labs. Try to not get too overwhelmed with everything you read about CLL. Take it a little at a time if you can. This website is filled with so many experienced and kind people with CLL who are very supportive and knowledgeable. I’m glad you found us.
Wishing you well,
Edelweiss
I appreciate your response and I too am on healthcare as a Respiratory Therapist. I’m on my feet 12 hours daily so makes for a long day! Been feeling well. I’m doing plant based diet for 2 weeks and my bone pain has subsided greatly! Hope this new year brings everyone better health and prosperity.
I just realized I had markers! I'm headed out to write on the wall.
I have Trisomy 12, and trust me it isnt a cool thing.
Those of us with CLL are basically in three groups: Slow Growth, Intermediate Growth, and Fast Growth. The worst of course is Fast Growth, because that leads to the likely spread of cancer cells to other organs and areas; aside, from the detrimental things caused by the drop in RBC, Platelets, and increased infections.
Trisomy 12 when present is merely a predictive factor on which of the three groups you fit into, and it usually means the person is Intermediate.
Yep, aside from the humor Cancer is real, and a CLL diagnosis is never cool. High Risk status of any sub type is more than just dreadful.
My progression having unmutated IGHV was a classic 40 months TTFT after official diagnosis. It was a slow miserable digression of being able to do little other than sit around feeling more and more lousy as my wife worked double time to keep our insurance and make the house payment.
I trended toward being a recluse because most everyone I came into contact with wanted an update. My life turned into ground hogs day telling the same cancer status story over and over, followed by the standard response "but you look good".
To add insult to injury my mother got lung cancer and I watched two of my best buds lose their cancer battle just as I was ramping up. They both looked good, even up the last days. We joked with each other, always greeting with Hey-You look Good! The upside was that My Mom's outcome turned out somewhat better.
When my lymphocytes doubling time started to accelerate, it was frightening because I became more catatonic mentally and physically. When I needed to be the most stable, I was was the weakest.
I thank God for a multitude of fortunate occurrences including Dr. Sharman, the recent medical advances in CLL, Andrew Schorr/Patient Power, and ..............
I am now hardly aware that I have CLL, but the possibility of uncertainty will always waiting.
Hope great success in your CLL effort.
Look up and Look outward wiz
Hi! I visited with my oncologist who specializes in SLL/CLL. He said my cancer is borderline not cancer because my labs and scan showed enlarged lymph nodes on my armpit. Both FISH exams show I am positive for Zap 70 and CD38. I am going in for bone marrow soon to see if it is in fact CLL. I mentioned I have bone pain and his statement was that it WASNT from my SLL. I was very confused since I’ve never felt bone pain until the last few months. He is very intellectual but not sensitive. I’m going to get a 2nd opinion Monday to get an idea if I need to change doctors.
Anne: If you left your appointment with your concerns being dismissed without a good explanation and not knowing if you have cancer it is time to get a new doctor. I changed doctors early on and it made a world of difference. You are likely in for a long, long fight with this disease so you don’t want to be dealing with someone you don’t trust and are uncomfortable with.
I am also unmutated & trisomy 12. My initial doctor was Harvard educated and had 40-years of experience as an oncologist. It took me a while but I finally realized he was inept. It’s funny we naturally accept that there are good plumbers and bad plumbers. Good hair stylists and bad hair stylists. Good police officers and bad police officers. But when it comes to doctors our initial assumption is they are all of equal caliber and quality and we shouldn’t question them as professionals since they are doctors after all. Well guess what? There are many differences among doctors. Get one you connect with and like.
Best,
Mark
annetxfan,
There is no such thing as Zap 70, CD38 borderline cancer, and CLL can be identified without the bone marrow biopsy.
Have you read your lab report? The lab that determines Zap70 and CD38 is where the prognosis is given, and not the attending physician's interpretation. These markers confirm CLL rather than render it interpretive.
The term "CLL specialist", intends that there is a high degree of credibility in practice that conforms consistent with the most precise and up to date medicine esteemed by the leaders in both CLL clinical practice and research.
Based only on my perspective of what you are stating here, I conclude that the doctor is looking at more than we see. It is probable that rather than the doctor saying you are borderline cancer, they mean to say that based on some given measure it is inconclusive as to whether you are mutated or unmutated in relation to the Zap70 and CD38 by how it is stated on the lab report?
Give them a chance to clarify. If they stand on the premise previously stated, do not simply get a second opinion. Leave the practice, do not look back, and find a CLL specialist that is measured by conformity to leaders in precision individualized medicine.
Follow the leaders, A few of the top generals in CLL warfare that are highly published:
Furman-Lamana-Sharman-Kipps-Keating-Weirda-Brown-Davids-Koffman-Mato-O'Brien-Follows-Hillmen-Tam-Byrd-Shua Ma-Gribben-Parikh-Thompson
GO-FIGHT-WIN-TAKE STATE.
Ok, Today I a positivity tyrant.
I behave tomorrow.
JM
I am also trisomy 12, zap 70 positive, cd38 positive. I was diagnosed 4 years ago. My blood tests show very gradual lymphocytes elevation and decreasing hemagloben, neutrophils, and thrombocytes. So far no treatment necessary. I feel good with no fatigue or night sweats. I get worries when I read my test results, it sometimes puzzles me why I feel so good! If you are new here, welcome. It is a great support and resource. Read the pinned posts, these are posts that the admins have created permanent links to because of their importance to us all. As for T12, recent research and clinical trial results are showing it to be almost the same as other cytogenetic abnormalities for responding to the new targeted therapies. Most information online is old. Look for papers written in the last year after ASH 2019 (this is an annual conference of the American Society of Hematology). Results of clinical trials using the targeted therapies as single agents or in combination are showing good results and making the old prognostic ratings almost obsolete. Don't worry, see a specialist, get a second opinion even, exercise and eat healthy, avoid infections, and enjoy life!
Hi Anne -
I am CD38, Zap 70 and Notch 1. I was diagnosed in 2012 and was on watch and wait for almost 4 years. When my hemoglobin dropped below 10 in 2016 I started Ibrutinib. My blood has been normal since the first month.
There are even newer drugs being tested and you will meet many people on this site who are involved in clinical trials.
It's a journey, but there is much to be optimistic about!
Virginia
Thank you for taking the time to answer by post. I am happy that treatments is going well. What side effects have you had with Ibrutinib? I am having bone pain but switched to plant based diet and has subsided. I hope you have a happy New Year!
I have a list of minor side effects. Leg cramps, skin outbreaks, creaky legs, curly hair (1). Nothing that limits my usual activities.
Virginia
With those side effects we could be twins Virginia 😂
I’m also doing well at present with ibrutinib.
Jeff
We'll have to compare our curls!
As others have stated, you have many reasons to be optimistic. I've been dealing with CLL since 2005 and have what WAS known as a high-risk case: several bad blood factors (11q, unmutated, complex karyotype, etc.). Had 11 cycles of chemo (PCR and BR) from 2010 to 2013 which failed. Then switched to ibrutinib and now venetoclax and i'm doing fine.
Some lessons learned that are relevant to you:
* one of the useful mottos about cll treatment is to "treat the patient, not the numbers." that means your doc should evaluate all of your symptoms--night sweats, fatigue, lymph node growth, etc. --in conjunction with the numbers. just because your numbers may be high is not necessarily a reason to start treatment.
* two key blood tests will identify most of the markers you may or may not have. You didn't mention FISH or flow cytometry tests and they're both important so you and your docs know what you're dealing with. the good news is that the new novel agents--ibrutinib, venetoclax and a host of others--are quite effective against the bad actors, but cll specialists have the most up to date test data on which combination is most effective against whatever marker collection you have
* a second opinion is crucial in cll treatment. try to see a cll specialist before getting treatment. Local oncologists or hematologists may not be fully cognizant of the latest research. a second opinion is crucial in cll treatment. Research data shows that patients of cll specialists are more likely to have better outcomes.
* a local cll support group can be a huge psychological benefit. sharing insights about the disease, the treatments, the financial toxicity of some f the treatments, etc. can be extremely important
Good luck and happy new year year.
Thank you for offering your information. I’ve had 2 FISH blood work. Both state I am positive for CD38. Trisomy 12 and Zap 70. I have read many cancer oncology articles that state the prognosis is aggressive with poor outcome to treatment. I have 5 enlarged lymph nodes under left arm. My CT scan did not see any am normalities. Spleen is normal. My oncologist is a CLL specialist and is the guest speaker in February for the LLS in San Antonio. He practices in Austin, Texas. That’s actually how I heard about him. Dr. Matsui who was from John Hopkins. I’ve had one appt with him. He ordered a slew of blood work and a body CT. All good except for the CD38, Zap 70 and Trisomy 12. I am on a plant based diet and feeling so much better. My bone pain is less and more energy.
lots of good things here, especially being seen by a cll expert. did your FISH test not find 11q, 17p or other broken chromosomes? If no evidence of them, you're in better shape than you may realize.
here's a link to the key details from FISH testing:
cllsociety.org/2019/09/more...
be careful about articles about cll outcomes based on old data. were those articles written 3-4 years ago? based on data from 5-6 years ago? or are they from the ASH 2019 or ASCO 2019 meetings? if the articles are more than a few years old, and therefore based on data from even earlier, they may not be too relevant to your current outlook.
chatting with your hemoc about his view of the current literature and your outlook would be quite useful for you.
indeed CLL specialists ike Rick Furman now say zap-70 and some of the older test results aren't as indicative of outcomes as they used to be because of the new pills.
this excerpt from an article on the cll society web site is relevant:
The issue of most of our markers and their relevance to prognosis and response to treatment has changed from the time when treatment choices consisted of chemo & monoclonal antibody drugs and little else. Markers that include ZAP–70 are thought by CLL specialist Dr. Rick Furman in an Onc Live video
youtube.com/watch?v=zlKKLFy...
to be “no longer prognostic” in the era of newer drugs like the KI (Kinase Inhibitor) class of drugs such as Ibrutinib & Idelalisib and the Bcl–2 inhibitor drug, Venetoclax.
here is a link to the entire article:
Yes my FISH states I have no deletions in 11q, 13, an 17p only Trisomy 12. Headed to see a very good and CLL expert who is now in Austin Texas, Dr Matsui. He is from John Hopkins. He’s doing a talk in CLL at the LLS meeting in February in San Antonio. Very blessed to have found him. HappyNew Year!🎉🎉
No 11q or 17p are excellent results. definitely great way to start the new year. As others have said, live your life and try to avoid stressing over cll. every reason to be optimistic!
Larry,
That was extremely well said. Way to let others learn from you.
Jeff
thanks Jeff. i'm just paying it forward, trying to help others the way they helped me.
HI ALL
AND MY VERY BEST FOR 2020.
I so very much agree with you 'TREAT THE PATIENT AND NOT THE NUMBERS!"
Now on IB for 26 days, doing vey fine. Oncologists have very different opinions
when to start treatment. My main indication was a very much enlarged spleen. All other showings were sidelined and were minor.
I am so happy to have found "THE HEALTH UNLOCKED CLUB"
So very much informative on so many levels.
Sincerely,
Wait and See patient for 27 years .....
I was diagnosed in 2016 unmutated but not Zap 70 or CD 38. At that time I was reading all the old life expectancies based on traditional treatments and it got me really stressed. Then I found this forum. Now I subscribe to OncLive and this forum, but I don't get obsessed about any of it. I eat very healthy, I exercise 5 or 6 times a week, get 7.5 to 8 hours of sleep per day, and I meditate regularly to reduce stress. Lastly, I resolved a chronic inflammation issue I had for many years by eliminating gluten from my diet. This isn't a cure, but my blood has been stable for two years now starting about the time I made the life style changes. I'm told that this could change at any time but either way I feel much better. I'm enjoying the end of my engineering profession, (I'll be 63 in a few weeks), in addition to running one of the larger wineries in Wisconsin. My hematologist, (who specializes in Leukemia), told me to go on living my life and that's exactly what I'm doing. Take care of yourself and think positive.
Jay
Dear annetxfan,
Please do believe what so many are saying. I have your markers and Ibrutinib has kept me in remission for 5 years. I was told in 2010 that it was aggressive. Now the same docs are telling me I could live another 15 or 20 years and I just turned 79.
Trisomy 12 is a predictive factor that indicates the type of CLL is Intermediate growth as opposed to slow or fast.
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