on Ibrutinib for less than 2 weeks and lymph node in my neck have gone from silver $ size and about 3/8 inch thick toa little larger

than a split pea! the stuff is fantastic so far..knock on wood .. MD Anderson has a clinical trial going on now , randomized , open testing Chlorambucil and Ibrutinib... I got the Ibrutinib.... only thing is the bone marrow test (8

days ago ) still hurts like hell. Good luck fish61

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  • Hey Fish, that's terrific news about your nodes ! I am on a similar trial with Idelalisib and B + R and after one month had a significant node reduction! ( see other posts)

    Now three months into treatment my doctor and I reviewed two CT scans ( before treatment and last week.) which showed an 80% + reduction in nodes deep inside me!

    My doctor has described the effect of Idelalisib like squeezing all the lymphocytes out of the nodes into my blood stream - ready for the chemo to attack them !

    Hence high Lymphocyte counts initially.

    I hope you continue to make good progress !

    Marty

  • hey Marty

    How is the fatigue factor.. I used to play tennis 3 times a week and walk a mile every day , but fatigue has cut that down to almost zero.. Does the fatigue go away??

  • Hi Fish,

    You must be on the RESONATE2 trial (Ibrutinib v Chlorambucil)? I am also on that trial and also on the Ibrutinib arm and also just finished my second week. The nodes in my neck have gone on one side and barely palpable on the other. The nodes in my armpits and groin have also gone.

    However, they are only the tip of the iceberg, I have extensive lymph on my spine and in my abdomen. It's because of the bulky lymphadenopathy (and other reasons) that I didn't want FCR. The BMB was my second, one I had at diagnosis and the second 2-3 weeks ago. I'm pleased to say that both were painless. Sorry you're still getting pain/soreness.

    I am at Bournemouth, where are you?

    Mikey

  • Hi Mickey, I am to start FCR shortly and like you have bulky lymphadenopathy- wondering why you don't want FCR? Glad you are doing well! Take care!

  • peneloope, I have the 11q22 deletion (missing 1 copy of the ATM gene) which is associated with bulky denopathy. I wouldn't get a long remission with FCR and risks outweigh the short term benefits of FCR. I'm assuming that I will have to have some form of chemoimmunotherapy at some time in the future.

  • In Houston , not sur e were Bournemoutn is but my preference for Ibrutinib comes from its low history of side sffects

  • Mikey47 have you had to deal with fatigue at all ? fish61

  • Not too much, Fish, a little more tired but not what I'd call fatigue.

  • Never said I amd getting FCR.. I think that was penelope.. What is FCR? fish61

  • Ooopss!! Sorry, yes it was. Fludarabine, Cyclophosphamide, Rituximab.

    I'm still playing tennis :)

  • Hi Fish

    I am smiling with you ... keep the good news coming ... and if there is a little pain .. I'll send you one of my badges - You Gotta Go Oww !

  • ygtgo

    I am a wuss .I hate pain ..Thats why I waited for a shot at Ibrutinib... 15 days on Monday should be interesting.

    Have fallen off a roof , have had bypass surgery, defibrillator, and multiple stents nothing hurt like the drill in my hip while not sedated... going the sedation route next time .. fish 61

  • Wusses don't fall off roofs and climb back up again ..... next time take your own drill in with you, they probably used one of those cheap foreign jobs .......

  • Ygtgo,

    You may be on to something there....

    Come to think of it she was holding the drill with chop sticks. Fish 61

  • i just got a scam from mary 200 ... avoid her and I cannot seem to get to management to report her... any ideas?

  • fish61, I presume you received a PM from this scammer? I can't see any member with the ID mary200 in our community, so I assume that HU management have already taken appropriate action.

    Normally it should just be a matter of going to the Help page and sending a email to report the problem by clicking on the email us link found under Contact Us on the right side of the page and HU should promptly take care of the matter (though you might have to wait until Monday if it happens on a weekend). In the meantime, you can PM Hairbear and me and we can restrict the person from posting to our community. Only HU can ban them from other communities.

    Neil

  • Hi fish61 I have forwarded all this to HU management asking for immediate action .

  • Gratias. Fish 61

  • Thanks for sharing your experience Fish. I too have the 11q deletion with bulky lymphadenopathy and feel I am getting closer to needing treatment. I've seen my local hematologist but am in the process of seeing a CLL specialist in NY. Your post provided some very useful information to add to my question list when I go. It's good to have more info about FCR, Thanks again and glad to hear of the success of your current treatment. I always go with sedation. I'm a nurse and see just about everything. Seeing a bone marrow biopsy early in my career was one of the only procedures that almost made me pass out!

  • Jomary8505

    Glad i could help .... I got a few note from "mary200" don not believe her... it is a Nigerian scam artist.. I can't figure out a way to report her..so I am doing it individually fish61

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