47 year old male recently confirmed to have CLL with 13 q deletion as the sole cytogenetic alteration, zap 70 and cd38 negative. Currently in w&w with 6 month follow up. MD indicates these are favorable markers but still can't help but worry. Anyone else with similar findings and how long have you been in W&W.
Thank you!
I'm 46, 47 next week. I am also 13q and mutated. I was diagnosed in October of 2016. After reviewing old blood tests, first abnormal test was 2011. I flew to MD Anderson and saw Dr. Wierda and he believes that I may have had CLL for 5 years already. I have no symptoms. My current ALC is 18 which is lower than what it was when it was diagnosed. I also see a hematologist here in KC where I live. Luckily for us with these favorable genetics, treatment will most likely be years and years away...if ever, and we respond well to most treatments. Also, science seems to be advancing faster than my disease is, so I am very optimistic. It's a shock at first, but it does get better. Lots of great people here to field your questions! Don't hesitate to ask anything.
Thank you for the reply. My Hemo believes I have had it for three years. Just trying to get my head around all this. How would I determine the mutation status. I do not see it mentioned in the report . Thanks again
Mutation status is an additional test that is done and sometimes insurance will not cover. The fact that you are Zap70 and CD38 negative points to a mutated status with about 70% accuracy. As I understand it, if you are mutated it means the original CLL clone was 90% or more developed before it went "haywire". This means it is more stable than an unmutated type. It is good to be mutated.
You may ask specialist about mutational test.
Sometimes there isn't direct reference to mutational status from FISH testing Djike and a stand alone test for it isnt routinely done. Sometimes the initial flow cytometry test gives the high probability indicator based on CD38 and Zap 70 levels. If your CD38 is under 30%, your IGHV gene is very likely mutated. If the percent is over 30% the gene is likely unmutated. This CD38 is called a marker and is about 70% correct. Further, the percent changes over time, but rarely goes over or under the 30% mark.
ZAP70 negative is a further indication of being mutated so your prognostics are excellent all round.
However, this is something to discuss with your haematologist. You have an excellent team and your biomarkers are the ones we all desire so ease up on the angst because you got the very good 'risk bucket!'
Best wishes,
Newdawn
Good Morning!
And welcome to a very great and supportive group of people!
I sure this is such a shock finding out that you have CLL. For all of us, it certainly was! However, although it is not curable, there are many more treatments available, depending where you live, then there was even in 2008, when I was diagnosed. By the way, I was 49 when I found out.
I also have 13q as my only marker with no other mutations; I am zap 70 negative as well as CD38 negative and am unmutated. I have been on W&W for the last almost 10 years without treatment. Luckily, I have no B-symptoms and am hoping that needing treatment continues to stay in the background. I am active and live a full life!
There are many people in this group that will chime in and give their stories as well. Some are as young or younger than you. Others are older. I am sure that you find you will get a lot of support from here and don't feel afraid to ask any question that may be on your mind, as they are not stupid questions. The more you learn, the better you will be able to live with your CLL.
I do hope that your doctor has told you to get all your vaccinations...not LIVE ones! And also that CLL is a cancer of the immune system, which means you will be more prone to infections than most other people. So please be sure to contact your doctor with any questions you may have as well.
Nice to meet you and I'm sure that you'll be hearing from others relatively soon!!
Albie
I meant to say that I am mutated!!
Welcome to the community, however sorry to hear you have CLL. I too have a 13q deletion with CD38 negative. I was diagnosed almost 3years ago at age 60, and my B lymphocytes were already rising previous to that. I was quite fatigued and that is what sent me to the doctors in the first place. My B lymphocytes were 63,000, and my platelets were falling, and I was anemic, which caused a complete work up of tests in case treatment was going to be required sooner than later. And immunoglobulins had already dropped way below normal. However, I have stabalized for now, except my platelets seem to be acting up again recently.
The best advise I can give you is to inform yourself as much as you can from reputable sites - there are many posted on this forum. And if you are feeling overwhelmed by the diagnosis, find a councellor to talk with. A lot of people with CLL find it emotionally draining at times, as we have are ups and downs.
Keep healthy and fit, eat a very good diet, stop smoking or drinking heavily if you need to. Read about how to keep infections at bay, and wash your hands often. Great ideas on this site as well.
I hope that you will be on watch and wait for many years to come, and as you have said, science is advancing with this disease.
All the best from the west coast of Canada,
Sandy Beaches
Thank you for the advice !!
I think I am also 13q deleted ZAP70 and CD38 negative and was diagnosed 9 years ago and still nowhere near needing treatment.
I have the same markers, mutated, 13q deletion, diagnosed fall 2015. My CLL specialist at OSU said I would live a normal lifespan with my markers. May need treatment someday, may not. My concerns now are not CLL but making sure the rest of my health is safeguarded. I am prediabetic, so more worried about that and my cardiovascular system. I get the flu and pneumonia vaccines, exercise, avoid exposure to germs, and read HU first thing each morning. Your 6 month follow up is good. I see my CLL specialist once a year buy also see a local hem-onc once a year because he is local and runs blood work, so essentially I see someone for CLL every 6 months. I see other doctors like dermatologist, primary care, eye doctor, gastro, etc., so pretty much checking in with someone almost monthly and my CLL specialist gets all their summary reports and blood work results. So building a team is important for your CLL life from here on out, at least in the US, not sure how that works in UK and elsewhere.
I have the same diagnosis as you, Djike. My oncologist says that indicates the CLL is the slowest of the slow type. I was diagnosed in Oct. 2012 and probably had it 5 years before that since I had severe reaction to no see'um bites ( little black gnats, sometimes called sand flies.) I also react to deer flies and head fly bites. Mosquitos bites are not any more severe than years ago.I am now 68 years old and look to the future with hope that I will never need treatment. If I do, I am hoping for some of those new treatments that do not include chemo.After the first 6 months of being diagnosed, I realized that life goes on and not to worry about the CLL as aging is just as confusing!! I just keep myself busy with art projects, 4-H, grandkids and quilting. Why do house work?? Good luck Djike, I think you will be fine.
Thanks for the reassurance Beargrove75
My husband was diagnosed December, 2015 after a lymph node biopsy and follow up surgery. He had a lump on the side of his neck for months. I finally insisted he have it looked at. The lump was a lymph node, and tested negative for lymphoma, but revealed he had CLL.
He is 13q, mutated with no other markers. His CLL has unfortunately progressed rather quickly since diagnosis. Last year he developed more and more enlarged lymph nodes, his white blood cells and lymphocytes were almost doubling at every three month appointment, and his spleen kept getting larger. No B symptoms. Has lost 28 pounds since being diagnosed. Previous appointment two months ago showed he was now anemic. Platelets hover at just above 100,000.
His latest appointment was this past Thursday. His spleen two months ago was 8 cm long, but at this appointment it doubled in size! It is now larger than a football! His numbers stopped doubling, and based on his blood work alone he still wouldn't be needing treatment, but due to the size of his spleen and how quickly it doubled in size, his doctor said it's now time for treatment.
Everyone is individual in their CLL progression, and I rarely see anyone mention having an enlarged spleen and bulky lymph node load like my husband. Most people with 13q deletion don't seem to be in the treatment position my husband is in either.
He'll be starting Ibrutinib shortly. I'm anxious, as he's only just 60, and I of course worry about long term survival as Ibrutinib is not a cure. One day at a time is all anyone can do.
I wish your husband a speedy and long remission .
Newly diagnosed with CLL
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