CLL/SLL

Hi got Dx Feb 2017 with CLL/ Sll I know they say it the same , but my oncologist said I had both : very confused, Zap 70 positive, Cd 38 positive and depletion of 11p which what I understand is not good for me overall.

Anyone with this type and same depleted 11? Oncologist said it was a bad one, but there was one worse than that, I think she said 17. Bone marrow effected at 70%. Was put on watch and wait go back in June, but she said I would be starting treatment at that time.

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  • Hi PNall

    I expect you are still a little poleaxed at your diagnosis. You mentioned oncologist which hopefully is a slip of the tongue as you should be seeing a haematologist SLL/CLL being a blood illness.

    Most people are monitored for a few visits to find the rate of progression. This is done by measuring the absolute lymphocyte count (ALC).

    Hopefully the doctor you are seeing is a CLL specialist, if not do ask to be referred to an acknowledged expert.

    Sure others of our community will be along with helpful replies, but it would help if you locked your post to our community. Click on the little down arrow and you will have the option to restrict your post to our community.

    Do let us know how you get on,

    Best wishes

    Bubnjay1

  • Thank you for your reply: but she is a oncologist at a leukemia center. I was first seen by a dr in lymphoma clinic and he said I would be better off seeing a leukemia dr. I just thought by going to this well known place that deals with all kinds of cancer would be the best. But I will ask about if a hematologist is own my team of Drs., I have started myself on a alkaline diet .

    I think I click on the right thing to restrict my post

  • Thank you for replying

  • Hi PNall and welcome to our community,

    You aren't the first to be confused by a dual CLL/SLL diagnosis. I was given the same label at my diagnosis. CLL and SLL are effectively the same disease, but given different names before it was found that CLL can manifest itself so very differently in each of us. You can read more about this here: healthunlocked.com/cllsuppo...

    While you don't have the best of prognostic markers, I hope you'll find it encouraging to know that these markers can only predict the outcome of a statistically large enough group - not the future path of an individual, i.e. you. There is much we are still learning about the deeper complexity of prognostic markers, with new ones still being discovered.

    Being CD38 and ZAP 70 positive, you are likely to have the unmutated IGVH form of CLL, but worry about that if and when you need treatment. You mention 70% bone marrow affected, but some of us get into the 90+% range before starting treatment; it depends on the degree your blood counts are impacted, in particular your platelet and haemoglobin levels, which you haven't mentioned. As Bubnjay mentioned, another means of assessing when to start treatment is the ALC doubling time, which incidentally, is only assessed once it passes 30 (thousand). Given your current oncology specialist is talking starting treatment next month, you may wish to get a second opinion. If you share where you live, (after changing your post to private to this community as Bubnjay explained), other members may be able to suggest some nearby specialists to consult for that.

    Dr Sharman, a well known Oregon USA CLL specialist, has written about 11q deletion here:

    healthunlocked.com/cllsuppo...

    Note that this was a couple of years ago and progress with CLL treatment is changing rapidly.

    Neil

  • Neil. Thanks for giving such sound info - we all need to here this.

  • I echo the comments of others that hopefully you are seeing a CLL specialist. As far as being 11q deleted and unmutated IGVH, it just means the disease progresses faster and that you will likely present with bulky lymph nodes. Chemo immunotherapy and the new novel agents such as ibrutinib are very effective in knocking back your particular brand of CLL/SLL. I have deletion 11q and am IGVH unmutated and have been in complete remission for 17 months since I had 6 months of chemo immunotherapy treatment. I feel perfectly healthy, rarely get sick, and recover quickly when I do get sick. I know it's a lot to wrap your head around, but there is hope. It just takes awhile to emotionally and psychologically adjust to your new reality.

  • Hi PNall. I have the same markers as you do. I was dx in April 2016 and expect to initiate treatment probably sometime this year. I hope to join a trial with ibrutinib and Venetoclax. Like the others have said, please do see a CLL specialist. An oncologist or even hematologist is just not good enough in our cases. You need someone who is on the cutting edge of all the new treatments available. I'm still learning but am amazed at the knowledge of the folks on this forum. I don't know as I will ever understand this disease to the extent that they do but everyone is very supportive and quick with their replies. Please keep us advised as to your progress. Best wishes to you.

  • Hi PNall,

    You might be surprised. While 11q deletion is usually not good because it involves an important tumor suppressor (ATM) gene not all 11q- patients have an aggressive disease course. From the Journal of Clinical Oncology - "Mutation Status of the Residual ATM Allele Is an Important Determinant of the Cellular Response to Chemotherapy and Survival in Patients With Chronic Lymphocytic Leukemia Containing an 11q Deletion:" Please bring this article and particularly the last paragraph to the attention of your treating physician as a rationale for getting a KI (kinase inhibitor) therapy for optimum outcome.

    ascopubs.org/doi/abs/10.120...

    You need monitoring but follow B-symptom guidelines and ALC doubling time for indications that therapy is actually needed rather than any timeline expectation.

    Usually an 11q- patient has a pronounced expression of swollen lymph nodes so I hope you can access a KI like Ibrutinib because KIs work particularly well in getting the CLL cells out of the Lymph tissue. Depending on where you are located a Clinical Trial may be a good fit for you. Several new KIs in combo being used in US.

    May your path be well chosen.

    WWW

  • Wishing you all the best. Stay positive. I have 17 p...so far thanks to all the new treatments I am still doing well. Really, no one knows when or how they will die- even those of us with CLL. My mom always said "you could get hit by a bus!" .Since I was diagnosed I have lost 4 friends...all diagnosed with something after I was, or sudden deaths. Just try not to get down, and live each day to the fullest. Believe it or not , in some ways having CLL...even the "bad" one, has made me enjoy life more. I concentrate more on what is important to me. When I was first diagnosed, I had 3 goals...seeing my two oldest graduate from grad school, and celebrating my 50th anniversary with my wonderful husband. My older son graduated last year, and my daughter will graduate next month. That's 2 out of three. My 50th is not until 2024, so that may take a bit of work, and many prayers, but I am up for it. I have now added a third goal...hope to see my sons' weddings :)

    Good Luck!

  • Ok am trying to restrict my post ; I keep looking for the down arrow, is it at top to your right? If so what do. Click on after that?

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