Treatment already!!!

Hi, my name is Cathy and I am 62 years old. I had breast cancer at 23 and at 34. At a checkup November 2015 I was told I have CLL with WBC at 16000. My Oncologist sent me to get a CT Scan and genetic testing. Everything was good and was told that we would just watch and wait. When I went to my appointment in October 2016 my WBC is 78000 and was told that I have CLL with deletion of 17p. I was told I needed to start treatment immediately. I will take Ibrutinib for the rest of my life. I have been waiting a week for my insurance company to authorize it. This all seems so confusing to me and I have did nothing but read about this disease. My sister has had CLL for about 6 years and she is still in the wait and watch stage. I'm sure I will have lots of questions during my journey.

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  • sorry to hear you didn't get much watch and wait time but sounds like you are being cared for quickly and hopefully the ibrutiniib treatments will be very effective. Good luck and keep us posted.

  • Hi Cathy,

    I'm so sorry you're going through this. You've already had a tough ride, and now this. :(

    I hope some of the more experienced folks will jump in with feedback soon. My main question is whether you're seeing a CLL specialist. I saw in your profile that you're in the USA, but not what state. If you share a bit more info, folks here may be better able to direct you to resources.

    If you haven't seen it already, iw-CLL Guidelines for the diagnosis and treatment of CLL offers info about when to treat CLL (section 4) bloodmed.com/contentimage/g... If you need help understanding this doc, don't hesitate to reach out with questions. Since this is considered your frontline therapy, my understanding is that you will get the greatest benefit from your firstline treatment. So discussing treatment options with your doctor and choosing carefully can serve you in the future. I think that's why having a CLL specialist is so important.

    Dr. Susan O'Brien Compares Ibrutinib and Chemoimmunotherapy in Frontline CLL and says Ibrutinib offers longer progression free survival (PFS)

    Paul Barr, MD: Principle Treatment Options for Patients With a 17p Deletion:

    Hope this helps!

  • I am seeing a Board Certified Hematologist Oncologist. I live in Knoxville, TN and my Oncologist is part of Thompson Cancer Survival Center. Thank you for the information!

  • Hi Cathy,

    From what you've shared, it's your fast lymphocyte count doubling time that resulted in your specialist recommending starting treatment. A world class CLL specialist would not treat you solely on that criteria if you were otherwise well. You can verify that in section 4, point 4of the iWCLL document recommended by neurodervish, namely:

    '4. Progressive lymphocytosis with an increase of more than 50% over a 2-month period or lymphocyte doubling time (LDT) of less than 6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months. In patients with initial blood lymphocyte counts of less than 30 ϫ 10 9 /L

    (30 000/uL), LDT should not be used as a single parameter to define a treatment indication. In addition, factors contributing to lymphocytosis or lymphadenopathy other than CLL (eg, infections) should be excluded.' (My emphasis)

    17p deletion is not a reason to start treatment, but does dictate a non-chemo treatment for best chance at control of the CLL. It is most likely that you had 17p deletion in your results from November 2015. If so, your specialist was correct in putting you on watch and wait last year, because the science of prognostic markers is still not adequate to accurately predict the outcome for a given patient, just the overall, average progress of groups of patients sharing those markers.

    While Ibrutinib is an appropriate choice for you if treatment really needs to be started now, some patients do experience difficulty with side effects and some develop resistance. With CLL, we nearly always have the time to seek a second opinion, which may in your case result in the peace of mind knowing that your current specialist has made the right choice, more time to enjoy life without the inconvenience of treatment, or perhaps acceptance into a trial with better, yet to be approved drugs. If you do find Ibrutinib doesn't work for you, then don't get concerned, because there are other, similarly good new drugs available and more in the pipeline.

    There are several lists of recommended specialists/doctors:

    cll-nhl.com/p/cllnhl-doctor...

    cllsociety.org/toolbox/cll-...

    Jia Bi, MD and Ian Flinn, MD, both of Tennessee Oncology, Nashville are mentioned in the second reference and Ian Flinn is mentioned in both.

    Your current specialist should support you seeking a second opinion for as important a decision as starting treatment. Don't be alarmed at your high WBC. We have other members, still in watch and wait, with counts several times higher than yours: healthunlocked.com/cllsuppo...

    Neil

  • Cathy,

    Five years ago having CLL was a bleak existence. Now it is a chronic illness and there are a lot of new drugs being developed and tested. The future looks much brighter.

    I do not think that you will be on Ibrutinib for the rest of your life. There are promising drug treatments such as Venetoclax which hold the promise of the cure. It is being tested on people with 17p deletion. You may want to see if any trials are available. If you read the posts, you will find members talking about their experiences in the Venetoclax trials.

  • Thank you as I really have no clue about any of this but I am sure I will learn quickly!

  • It's only a 2.5 hour drive from Knoxville to Nashville and it could make a major difference in your health outcome to see a CLL specialist. This disease is complex and heterogeneous. A CLL specialist will have a clearer picture of all the treatment options and how to individually treat you. Some people fly across the country and other drive 5 plus hours to see a CLL specialist for this reason.

    I want you to get the best possible care Cathy! :)

  • Good point neurodervish and the science backs this up!

    Cathy, analysis of life expectancy shows several years longer survival times when patients see someone who specialises in CLL. (Hematology/Oncology covers a wide range of conditions and CLL is rare.) Treatments are advancing rapidly and by seeing a specialist, not only do you get to see someone who is likely to have seen other CLL patients like you (we all differ in our journey due to the heterogeneous nature of CLL), you have a better chance of gaining access to better treatments with less side effects. If you like your current local specialist, you may find they are amenable to local monitoring of your health with CLL under guidance from the remote CLL specialist, reducing the need for trips to Nashville.

    Neil

  • Hi Cathy. I have found that it is important to post even what seems as the silliest of questions, no one will judge you. The good people in this family have a vast wealth of knowledge & can also provide you with links to assist. Best wishes.

  • Sorry you are having to go through this as you have already been through enough in your lifetime! I agree with the others that have said you should get a second opinion before starting treatment! It is worth the drive and the effort. I also went to a board certified hem/onc but when I went to the CLL specialist it was as different as night and day. You owe it to yourself to do it.

  • I am a younger patient with 17p deletion so I think my experience is very relevant for you to hear. The decision to start treatment with ibrutinib at U Penn was decided at a WBC of about 60,000 and no other danger zone issues because they said they like to leave a little extra runway. That was in March and I decided to delay treatment until June to participate in a clinical study by which point WBC was at 97000 and my hemoglobin dipped to 5.5 requiring hospitalization right before the trial and my lymph nodes got huge (biggest 10x5 cm in my stomach). I was lucky to get it back over 8 to participate in the trial. The reason I did the trial was because Dr. Bryd at OSU said while ibrutinib was a game changer, I would not likely get the runway out of it that I needed as a young patient (I'm 48 but 62 is also young in my opinion) because people with 17p are more likely to relapse on ibrutinib. This is well documented online but doesn't get discussed because only 5-8% of us are 17p deleted at the front line. It still might be the best option for you, but like others have said, I would urge you to see a CLL specialist in a leading CLL center if you can. If you have started taking ibrutinib, your options for now will be limited, but you need to know state of the industry in particular, and this includes what is your Plan B if ibrutinib doesn't work (perhaps venetoclax).

    I don't mean to scare you, but you need a specialist now that you are part of the 17p deleted club, the club we didn't want to join after joining the CLL club.

    On the plus side, I'm doing great and you will too, even on ibrutinib. It works very well and you will see an improvement in how you feel quickly.

    PS Get the second opinion, but don't delay.

  • I agree with Ellen. I saw Dr Flinn in Nashville for my 3rd opinion (long story). They have a couple of trials going in now, and one with Venetoclax coming up. I am moving my primary oncologist care to Flinn so I can hopefully participate in a trial. I drive 2h15m to see Flinn. It is worth it. I wish you the best with your decision.

    Nathan

  • Cathy - Dr. Flinn is a recognized CLL specialist. I join with others in encouraging you to get a second opinion from him. In addition to really knowing CLL, he is involved with some of the cutting edge trials. Several people at cllforum.com have posted about their experiences with him over the years.

    Just an FYI. You might want to lock future posts to community only. It protects your privacy and that of anyone responding. You can edit this one to lock it by clicking on the v next to like and scrolling down to the bottom to click on community only.

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