CLL Support Association
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Balooning lymph nodes

Male 62y, 7.5 years since diagnosis, last wbc at 60k which was 20k higher than about 18 months previously. Lymph node swellings in neck and shoulders have increased at an alarming pace in the last couple of months after being progressively stable for the last 3-4 years, although generally I still feel quite well and free from infections. I am due to see my hematologist later this week so am anticipating a more serious than usual conversation regarding the start of treatment. I knew this time was likely to come at some stage but now that it is here I have to admit to feeling more than a little apprehensive. I was hoping to hang it out for a few more years in the hope of being able to take advantage of some of the promising combination therapies that are currently being trialed.

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Redlion, I feel your anxiety. I hope you have another or others to talk with as you approach this next appt. And if you haven't in the past, have someone with you. Our ears begin to refuse to hear with clarity and our memory gets clogged in times of stressful confrontation with our condition.

I, when I know something is going on. almost have to drag myself to the Dr. even though I know it is best to know (at least in my case.)

The being in suspension, waiting, wondering while we watch and wait is part of the CLL situation that others AND THE DRS. often don't understand.

Mind over matter in our situation is not the piece of cake it is touted to be.

Please keep us informed as you continue.

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My oncologist/hematologist told me that this swelling of lymph nodes usually means that treatment needs to be started. After a short time on ibrutinib (thanks to foundations for helping to pay for it), all my blood count numbers were back in range. That is a huge relief. However, CLL still has its way and manifests in other dimensions.

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I managed to avoid treatment 8 years in hopes that WW would go on indefinitely despite enlarged nodes and spleen. Totally agree with encouragement to have a support person to help you listen and ask questions at your appointment. Take a note pad to write on too.

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Thanks to all of you for your support and suggestions, will let you know how it goes.

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Just an update to my previous post. Had a scheduled 3mth appointment last Friday, WBC actually has gone down from 60k to 42k, which was a little surprising, however as I stated in my previous post my lymph nodes in neck and clavicle zones have grown and multiplied at an alarming rate in the last couple of months, now starting to look like the Bug Man in Men in Black. My usual consultant was supplanted by someone else for some reason but it turned out she seemed a good deal more clued up than the former, so all to the good. Having another full body CT scan to determine lymph node activity, the last one was about 9/12mths ago. Been told that postponing treatment is no longer an option and it will have to start soon after my next appointment in 3 weeks time, so hopefully the healing process of my ankle fusion will be far enough on by then (10 weeks since op) not to cause a problem. I also gave blood for a FISH test yesterday which I requested and was granted (surprisingly). Tiredness and fatigue have definitely been increasing lately so I think the time is right to move on to the next phase, although having endured 3 years of major orthopedic treatment for motorcycle related injuries during which time I have been mostly on crutches I do feel that I am going into this treatment with the fuel gauge nearing empty. Cheers.

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