? Need to start treatment

I was diagnosed with CLL in May 2016, at age 57, at the time my WBC's were 17. I too was placed on wait and watch and given the impression treatment would be in the very distant future if ever. The other tests that were done put me at Stage 0. So I just went about my business, taking care to stay healthy ( diet, exercise, etc). Now 2 1/2 years later WBC's 59, but MD felt some lymph nodes and I am experiencing some autoimmune issues which by the way I have had off and on the past 40 yrs. I have to go back in January to discuss tx options; Imbrivica has been suggested. A few concerns I have are with the side effects of these drugs the main one being risk of hemorrhage; I had cerebral aneurysms clipped 25 yrs ago; the other being I am an Emergency Room nurse and have built up an iron strong immune system over the years; but have concerns that the drug initially will plummet My WBC 's putting me at greater risk. Any thoughts would be welcome.

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  • Hi cahrmlo1,

    I'm a little confused about the time line. You mention being diagnosed in May this year but go on to say you've had the condition 2.5 yrs. Did you perhaps mean diagnosed in 2014?

    I'm afraid I can't advise on the efffects of Imbruvica but I am wondering what the drivers are at present that are propelling your doctor to suggest starting treatment. Are the lymph nodes significant in size and causing organ impingement problems? Is the autoimmune condition being aggravated by the existence of CLL? You mention your WBC which is slightly less than mine but nothing about your ALC doubling time which is significant. Do you have constitutional symptoms or falling platelets or RBC causing anaemia? How are you immunoglobulin levels and have you had a FISH test done to establish your chromosomal profile?

    Sorry to ask all the questions but at the moment it's hard to know what the clinical imperatives are behind you needing treatment soon. You seem to be from the States and the enlarged lymph nodes will probably put your staging at Rai1 which is fairly low level.

    This link may help, particularly the end section which outlines indications for needing treatment. It could be there are factors or issues underlying the treatment suggestions but I'm wondering if your doctor is a CLL specialist. In view of your worries about past aneurysms, it sounds advisable to have a second opinion if necessary.

    bloodjournal.org/content/bl...

    Best wishes and I'm sure others will advise further. In honesty, I'm wondering if you need treatment, why I don't too!

    Newdawn

  • Hi cahrmlo1, sorry it's time to consider treatment. I recently had to make a treatment choice as well. I decided on Imbruvica and was extremely leary of the reported side effects. So far I can say that there were some bothersome, but not awful mouth sores, bruising, and toe cramping whend I didn't drink enough water. Results have been wonderful. WBC started at 118, initially jumped to 170, now down to 47 after less than 90 days. It was explained to me by the docs at MD Anderson that Imbruvica only targets the CLL cells, leaving your healthy cells intact. The bleeding issue would concern me if I were in your shoes.

    Wish you the best of luck whatever you decide.

    Kim

  • Hi Kim,

    It's great to hear that Imbruvica is working so well for you. However, I think you have misinterpreted the advice given by your MD Anderson specialist. Imbruvica targets ALL B-Lymphocytes as well as a few other body cells (hence the side effects which can make taking the drug challenging for some of us), not just CLL cells. There's not yet an approved drug that can specifically target just CLL cells. Even acalabrutinib, which is a second generation BTK inhibitor and is currently under trial, can't differentiate between healthy B-Lymphocytes and CLL cells, but is claimed to have less side effects because it more selectively targets B-Lymphocytes.

    Neil

  • Thanks Neil, I will certainly have this discussion at my next visit.

  • Be sure your doctor knows about your previous aneurysms . The info included comes from Blood Journal

    "Mild bleeding disorders (grade 1-2) have been reported in 44-60% of patients across clinical trials"

    Virginia

  • Did you have any symptoms?

  • Hello, I was diagnosed just two years ago ( Dec 2014) and was watch and wait until this past July when I started Imbruvica ( 420 mg daily). While my numbers were never terrible my lymph nodes, most noticeable in chin and face were the size of golf balls. They had grown by nearly 50% in the 18 months after diagnosis.

    I've experienced none of the often mentioned side effects other than recently the cracking of skin at my finger tips. The treatment, trim...paint with liquid bandage and apply Eucerin regularly. I'm now going to start using a greaser lotion over night while wearing latex gloves.

    With you being a nurse you'll surely know more about infection and immune systems than I but that's what my oncologist constantly cautions me about.

    The one thing I wish I knew would be is am I going to be taking this forever, I'm 66 . And for my fellow CLLers who are on Imbruvica in countries other than the USA is it just as expensive elsewhere...

  • I am an ER nurse as well. I was diagnosed about 6 months ago just after moving to a new state. I decided that constant exposure to the unknown is not worth it for me. I chose not to go back to work until I figured out what treatment I would go through. When I go back, I think I will lean towards a job in education, management, or one with limited pt involvement. I loved pt care, but for me not worth the risks.

    On diagnosis, the first Hem/Onc thought I would need Chemo within 2 months. Went for a second opinion, that Doc was lets see what your lab trends are doing and how you feel. He was also wanting to do FCR. I am unmutated, so was on the fence between FCR vs Imbruvica. I was able to get a third opinion with a CLL specialist. He had a multi-drug combo trial coming up, so I opted for that. I am hoping to start treatment around the beginning of the year. You may want to look into a trial with on of the second gen TKI drugs like acalabrutinib, or BG3111. I believe they still have a bleeding risk, but it is a smaller % than imbruvica. CLLCanada just posted a video on the BG3111 trial.

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