Enlarged nodes but ALC good. Dr recommends FLAIR trial. Anyone else in same situation?

I was diagnosed with cll around 4years ago. From what I can tell myl lymphocyte count is good at 39 however I have enlarged lymph nodes everywhere. Recently my doctor said lymph nodes increasing treatment needed, suitable for FLAIR trial. I don't feel any different Anyone else in same position?

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  • I am having tests ready for the FLAIR trial. Been on watch and wait for nine years. Now lymphocyte count is high, but lymph nodes only increase when ill or stressed. Get fatigued in the evening, but manage on autopilot in the day.

  • You'd need to consider all of the potential Stage 2 effects - of which enlarged lymph nodes are one example - and the rate of increase in your ALC in thinking about when treatment should start. Your lymphocyte count seems low at present. But enlarged nodes, for example in the thorax, are not always painful but may nonetheless need to be addressed if becoming large or voluminous.

    Flair would give you a 50% chance of Ibrutinib or FCR, if you go ahead with treatment.

  • If I understand your question correctly, you are wondering why you need treatment if you feel fine. I was diagnosed in Nov 2012 (Lymph # 70 & ALC 12.9) and started treatment in April 2014 (Lymph # 68 & ALC 8.4). As you can see my numbers were getting better but lymph nodes were much larger. I was feeling fine but I had difficulty turning my neck. My spleen wasn't enlarged but I had lymph nodes the size of an orange under my armpits. First, I refused treatment because I was feeling normal and was working full time but eventually enlarged nodes started to interfere with my everyday life situation such as driving or sleeping. I live in US and I was lucky enough to start the treatment when Imbruvica was approved. Remember each situation is different and you need to consider pros and cons before committing yourself. In any case I wish you the best.

  • Thank you for your reply, everything I read seemed to relate to people where the blood counts were very high and getting higher, I could find very little in relation to the illness being the other way around, was very nice to hear from someone else in the same situation. hope everything is going well for you.

  • May I ask how you were able to be prescribed Imbruvica since it seems you had been previously untreated. Was this part of a trial or did you work with a doctor who was able to prescribe off-label? If the latter, did the doctor work with Pharmacyclics (or insurance perhaps?) to get it covered?

  • I think your question is directed to me. I live in U.S. and I believe once a drug is approved by FDA (Food and Drug Administration) doctors can prescribe the medication to their patients if the insurance companies are willing to cover the cost. That is where everything gets complicated. Which insurance company (Blueshield, Bluecross, Anthem......) is covering the cost of the chemo drugs. In most cases, specifics are not known until a patient needs the medication. Also, it is extremely important for the doctor's office to deal directly with the insurance companies and to emphasize the necessity of the drug for the survival of their patients. My oncologist office has three employees with their job being getting authorization for the chemo drugs. Again, it makes a difference where you receive your treatment. For a third opinion about my treatment, I saw the head of the hematology department at UCSF (University of California San Francisco) and he was surprised that I was able to get Imbruvica. I am glad, I am not under his care. Their CLL patients receive mostly BR with the exception of one or two who receive Gazyva + ...

    I recently lost my sister-in-law to lung cancer. She was under the care of a very reputable oncologist at UCSF. His office did a terrible job getting the authorization for her chemo drugs and she passed on waiting for any type of treatment.

    Let me know if I can help you in any way. Warm wishes.

  • Hi, My husband who has SLL started on the FLAIR Trial in Oct. He was on W&W for only a year when his consultant decided he needed treatment although like you he was surprised as he felt very well but his lymph nodes were numerous and enlarged and his bloods were all going the "wrong way". She was very keen for him to join the trial and explained all the benefits of this new "wonder drug" Ibrutinib. It is a random 50/50 chance of getting the Ibrutinib but also knew that FCR is a tried and tested treatment.

    He did get the Ibrutinib arm and now 4mths on his latest blood tests showed all results are within normal margins except platelets which are 122 (so no problem) Only side effects have been v dry hands and a few small blood spots which come and go. He plays golf 2 or 3 times ( if allowed ) a week and feels really fit and well.

    Long may it last....... . Two more infusions of Retuximab (no side effects ) to go and then we are off to find the sun in our camper van for a couple of mths before the next appointment and the dreaded bone marrow test. (although have insisted on having a sedative next time!!!)

    We cannot praise the Haematology dept in Bournemouth hospital enough.

    Hope all goes well with you,

    Best wishes from us both.

  • thank you for your reply, I hope everything continues to go well for your husband. Best wishes.

  • I was in the position of being considered for the FLAIR trial, due to significant fatigue, but the decision was eventually made, by the group of consultants meeting, after some of the initial tests before the trial, that the blood and bone marrow readings had not changed enough since initial diagnosis.

    I found it a tough decision to consider treatment, and I was encouraged that the consultants meeting together didn't include me in the trial in light of the pre-trial tests. I still have every confidence in my own consultant, and in the process for taking people on the trial.

    All the best in your situation,

    Barbarann

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