Treatment

I am a 66 year old Trisomy 12, Zap 70 positive (>20%), unmutated CLL patient still on watch and wait. I was diagnosed in March 2014 after having a long cold that just wouldn't go away. My doctor had a CBC done on me. My WBC came back at 21,000 and my doctor made an appointment for me with a hematologist/oncologist who diagnosed me with B cell CLL.

Just curious. If there is anyone else in here with a similar genetic marker profile. My doctor really hasn't given me any specifics of what kind of treatment I can expect in the future. If you have had treatment or are going through it now, I'd like to know how you are being treated.

11 Replies

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  • CLL, stage 4, non Hodgkin’s, B cell, Zap 70 positive.

    After my experience with all this crap with doctors, I would advise you to seek a second opinion from a CLL specialist from Dr. Sharman's list. I have seen two in Florida where I live, and I traveled to Boston to see Dr. Jennifer Brown at the Dana Farber. All three 'second opinions' would NOThave given me chemo and maintenance as my hematologist/oncologist put me through!

    The folks on the page are extremely helpful, concerned, and friendly. I met a few people who live in my neighborhood through here.

    Wishing you all the best, Roslyn ღ

  • Thanks Roslyn. My oncologist is on Dr. Sharman's list. I feel I'm in good hands. Best to you,

    RK66

  • My question to anyone out there as to what changes in diet, have you added anything to you diet? Is there a diet that will help keep numbers down? Im at a lose as to what to do. Just diagnosed with cll. My doctor has not me what to do or not to do. He tells me I have very little cancer in me. My outlook is very good. Do I continue living eating as I have? Thank you

  • My oncologist doesn't believe diet will postpone progression but thinks staying healthy can only help. I have read green tea extract and vitamin D might. I try to eat as healthy as I can, stay away from a lot of sugar and I walk 30 minutes or more a day. Everything in moderation is the best policy but I suggest still trying to enjoy your life. There are people in here far more knowledgable than I and might disagree with me, but so far so good for me and I want to live as normal a life for as long as I can. I don't want to be sick someday regretting that I passed on an In N Out burger.

    All the best to you on your journey. Just know there are a lot of us traveling this journey too and that you're not alone.

    RK66

  • Hi Mamajama,

    I think you're a newcomer here, so I'd like to say "Welcome to the site."

    It's great that your doctor has said you have very little cancer in you, and your outlook is very good. :-) However, doctors are often not so good at telling us simple, practical things we can do, to help us in our "journey" with CLL.

    Eating well is just one of those things, but there's a lot more - not complex medical stuff, just simple, do-able stuff. A few months ago I wrote three posts specially for newly diagnosed folk, that you might find helpful.

    After I wrote the first post, many people mentioned points of their own, which I have added to my lists. So, the lists became quite long.. But I hope you'll find something there that's relevant to your situation. :-)

    healthunlocked.com/cllsuppo...

    healthunlocked.com/cllsuppo...

    healthunlocked.com/cllsuppo...

    Do let us know how you get on, as you continue on your journey.

    Wishing you well,

    Paula

  • Hi RK66,

    I am also T12, UNmutated, but Zap70 neg & CD38 pos. diagnosed in 2008 and treated in 2010, 2012 & 2015

    You commented that your doctor is on Dr. Sharman's list and that is the most important suggestion I could make. I did not choose my first doctor wisely and struggled with her lack of experience and knowledge. Eventually she treated me with Rituxan monotherapy and proposed semi annual maintenance therapy- following a protocol used for Follicular Lymphoma - not for CLL.

    I was on a clinical trial with Idelalisib/Zydelig and Rituxan starting in 2012 and that quickly yielded normal blood results, nodes and spleen until early 2015. In May 2015 my ALC reached 9 and I switched to Ibrutinib/Imbruvica immediately. I was getting slow steady improvements but had to pause Imbruvica for 4 weeks due to a skin rash. I restarted the Imbruvica yesterday.

    In general the UNmutated factor will likely mean faster time to treat and your Zap 70 also suggests the same. But each of us is unique and our CLL often follows a different path than people with the same markers. So I hope you will have a long time in W&W and when treatment is needed you can use ACP-196 (the improved Ibrutinib) + ABT-199/Venetoclax + Obinutuzumab/Gazyva and get to Minimal Residual Disease and a complete and long lasting remission.

    Len

  • Hi Len:

    Thanks for your kind words and reinforcement for my choice of a Dr. Sharman recommended hematologist/oncologist.

    I have taken note of your postings and find you to be both knowledgable and helpful to others. I wish you the best and a long life in our mutual CLL journey.

    Happy Holidays,

    RK66

  • Where is this list from Dr. Sharman?

  • Dr. Sharman lists doctors in the US who he knows - CLL and NHL specialists. You might want to ask about doctors listed, as not all of them focus on CLL. If you are not in the US, if you post your general location someone here may be able to recommend a specialist near you.

  • Thanks for the response pkenn. I am in the U.S. and my doctor is a CLL specialist and just happened to be on Dr. Sharman's list but I had already chosen her before I knew that. Dr. Sharman just confirmed what I already knew. I spend a lot of time researching my doctors before I ever see them. I have several doctors. I see a dermatologist twice a year because melanoma is often a secondary cancer with CLL. I have a urologist for annual prostrate exams and, of course, I have an internist. I have a wonderful team helping me. Interestingly enough, my entire staff of doctors are female. I find they listen better and I think they will relate better to my wife when I do get sick. That's not to discount all the very talented and devoted male physicians such as Dr. Shaman, but I feel my choices work best for my wife and I. I feel blessed to have the care I do.

    Best to you,

    RK66

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