CLL patient in CT

74 y.o. w/f patient who In 2013 officially dx'd , wbc's elevated, oncologist said w/w for a while as asymptomatic, then in 2014 count .100,000 he said I had to do something so got Treanda - felt lousy with it, had two cycles, then next month Treanda with Rituxin, became totally neutropenic, in hospital for 3+ weeks. No treatment except Prednisone for two years until 2015, MD tried Ibrutinib 140mg, one tablet every day,became nauseated, lost my voice after 1 pill, med d/c'd. In April of 2016 MD and I decided to try Ibrutinib again at one tablet per day. After about 4 days, my left hand swelled up lto the size of a boxing glove, looked like cellulitis.Was on med 7 days. Admitted to Hospital for 9 days, blood cultures negative, massive IV steroids and abx. Resolved. Went to see Dr. Jennifer Brown at Dana Farber in August 2016. No further treatment until November 2016. She recommended an IV chemo drug or possibly Venetoclax, neither of which I was anxious to take. My local MD and I decided to try Ibrutinib at one tab every three days. . At that time my MD said I was dying of CLL .Counts repidly declined, two weeks ago we stopped med due to pain and swelling in both legs, mainly ankles. In February, noticed hearing loss in one ear, not some in other as well. Total workup by ENT MD. Now I have pneumonia but starting to recover. See MD Monday, for labs. Lymph nodes very small axillary, none else where.

15 Replies

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  • You have had it rough. So sorry!

  • Hello. It sounds like you have had a terrible time. There are up & downs hopefully you will experience more ups. You may wish to view my journey over the last 6 months. If so I hope it is of some help to you. Rgards

  • Thank you - how do I access your journey reports?

  • Hi Not 100 percent sure. if you click on my profile you may be able to access. Failing that Aussie Neil is a wealth of information & knows his way round.

  • To follow Jack's journey, just click on his username above his post or reply and select his posts and replies

  • Hi and welcome to our community, where you'll be able to learn from others what good CLL management is all about (and sadly you haven't had it!). Please do not entrust yourself to a local MD or even an oncologist for your CLL management, because they just don't have the experience with newer drugs like ibrutinib to manage any adverse effects well. Long term studies of CLL patients have shown an improvement of median life expectancy of several years when our condition is managed by a CLL specialist. You should not have been treated just because your WBC approached 100,000 and clinical trial data show that stopping and starting ibrutinib or taking a reduced dose are not optimal ways to manage CLL. At least you have good news that your lymph nodes are fine.

    Dr. Jennifer Brown at Dana Farber is a well recognised CLL specialist and my advice to you is to see if you can arrange for her to be your primary specialist, providing advice to your oncologist and MD as needed.

    Wishing you a smooth recovery from your pneumonia and please keep us informed of your status,

    Neil

  • Thank you, Neil - I saw Dr Brown once - she is brilliant but constantly distracted by her huge volume of patients and interruptions. I'm not sure We really had enough time to discuss my case although I will probably schedule another visit.

  • Given Dr Brown's case load, perhaps having her as your go to person for your MD and local oncologist is indeed the best solution. IF your CLL needs treatment again, you would be wise to seriously consider Venetoclax (or whatever Dr Brown recommends, as she does keep across new developments and clinical trials). Venetoclax is not chemo, but a very powerful drug with high specificity to CLL cells, which means that brief hospital stays are needed early on when the bulk of the CLL tumour load is wiped out by it.

    Neil

  • Aussie gave u excellent advice. I think u need specialized advice and follow up. If had access to Dr. Brown I would see her when I needed her and consider her recommendations very seriously. Don't quite know the routine in the US. Will she provide leadership to a local Dr. and see you infrequently. Presume u are not that close to Dana Farber if CT is Connecticut. Will say some prayers u start to turn the corner u have not had it easy.

  • I'm a w&w being diagnosed sll/cll a year ago. I'm also in CT near Danbury area. If dr Brown at Dana is not available then see David Fisher also at Dana. I am using Efrahim Hochberg as my CLL expert, he's at Mass General. Mass General and Dana basically work together, together with Harvard Med School.

    I would personally not rely on my MD fir CLL issues or any decisions but go to someone who specializes as a hematology oncology. You could also try the big hospitals in NYC but I personally hate going into NYC even though is 90 minutes versus 3 hrs into Boston. Are you nearer Boston?

  • I totally agree with Neil - You have not been getting care for your CLL that makes sense! I would run, not walk, back to Boston, and if you find that you and Dr. Brown are not a match then see David Fisher or someone else on her team OR head for NYC to see Rick Furman (NY Pres. Weill Cornell) or Nicole Lamanna (NY Pres. Columbia) or one of their associates. The fact that someone is a specialist does not always mean that they are a good match for you, and that's OK. You are fortunate to live around some of the top people in the CLL world.

    My first oncologist did not know CLL, much less my unusual presentation of it. He started me on a treatment that was absolutely the wrong thing for me, and I was in the hospital septic within a week. The only good thing about that experience was that it got me referred out of network with my HMO to UCLA. I also learned to be an aggressive and involved patient and to dump any doctor I didn't have confidence in (I've dumped several on the way to assembling my "team").

    Once established with a specialist you could probably continue routine care with someone more local - maybe Smilow at Yale New Haven. My cousin's specialist for follicular is at Dana Farber, but his routine care is through someone at Smilow. He hits me up every year for their bike ride fundraiser.

    Dr. Jeff Sharman has someone from Meriden on his list of suggested doctors - cll-nhl.com - which surprised me, as my first teaching job was in Meriden in 1969, but that doctor may be more focused on other NHLs.

    It often works well to go backwards from the specialist to find the right local doctor so that they are comfortable working together.

  • Thank you very much for your advice. My 1st onc MD at Hartford. Was not the right one for me. He left the Practice, moved to S.C. My present doc is really good. He consults with Dr. Brown about my case and works with me as a team. Dr. Brown recommended obinotuzumab but I am so highly sensitive to chemo I felt it might kill me. He said I would have to be admitted if have it. Been reading Dr Sharman's blog too and am particularly interested in the ASHroundtable about treating the disease, not the patient re treatment re IGHV mutation vs unmutated disease. Will see md Monday to discuss. Presently trying to recover from pneumonia.

  • Obinutuzumab / Gazyva is not chemo. It is sort of third generation rituxan. I had it in 2015 and have had a very good response. Like rituxan, it can cause reactions. I had absolutely none. Most people I know had a minor reaction the first day only, though there are people who have had more significant reactions. The first day you get only 100 of 1000 units infused slowly and with more pre meds to test for reactions. On day two you get the rest of the first dose.

    Have you had rituxan before? Did you have problems with reactions, if so?

  • Thank you for your reply - sounds hopeful - in 2914 I had Treanda x 2 f/b a month later Treanda and Rituxin causing severe neutropenia in hospital for 3 weeks. They weren't sure which drug caused it - kind of worried now that you said Obinutuzumab a 3rd generation Rituxin. Dr Brown said maybe Rituxin. I have CT sinuses Friday, then infectious disease MD to weigh in on sinus issue. It is weird as no sore throat and I have huge tonsils. Was on Levaquin for 7 days.

  • Be careful with Levequin and related drugs. There is a black box warning about possible tendon damage and a friend experienced it with Cipro.

    You might ask about obinutuzumab (aka Gazyva) vs rituxan. I don't know whether anyone has compared them as far as reactions.

    I had constant sinus issues before diagnosis. My sinuses would just block - no sore throat, just incredible sinus headaches. Sinus surgery to open things so the sinuses can drain made a big difference for me.

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