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Anxiety: Is CLL the Culprit?

I was diagnosed with CLL two years ago after routine doctor appointment. Fortunately, I live near the James Cancer Hospital at The Ohio State University. I have an excellent care team. I am a wait & watch patient. I am happy I don’t need immediate treatment, but every time something shows up on my body or I don’t feel well, I think it must be that scary CLL thing. Does anyone else experience CLL anxiety?

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  • Ann Harper moderator
    5 months ago

    I also get anxiety when something new happens to my body or when I go for a doctor’s appointment. I too am in watch and wait mode.

  • Catmom23
    5 months ago

    My CLL/SLL journey started at a routine doctor’s appointment 4 years ago. Stage 0 has crept into stage 1, still in the watchful waiting and worrying phase. Every time I go for routine appointments I wonder if this is going to be it, the appointment when my doctor tells me it’s time for treatment. The only time I don’t have CLL anxiety is when I stay busy enough to build a big mental wall around my fears. It’s easy enough for my doctor to tell me not to worry, go ahead and live my life, there are great treatments, etc, but when I do let myself think about things I just keep wondering when the other shoe is going to drop. You’re not alone in experiencing CLL anxiety.

  • Ann Harper moderator
    5 months ago

    So true.

  • Angelkg01
    8 months ago

    Hi, I was also diagnosed with CLL, 1 year ago. I was 6 years breast cancer free ! I do get anxious every time I feel an ache or pain. Therapy, has helped, I take 2-4 mg of valium as needed, and I try to have a positive attitude. I am wait and watch also, but I get IVIG treatments once a month. Also, my oncologist and nurses are wonderful, caring, knowledgeable, and easy to talk to.

  • Ann Harper moderator
    5 months ago

    It helps having a good team of doctors.

  • Pgg
    8 months ago

    I was diagnosed with CLLSLL. 5 years ago. I’m in New York and luckily I have Mount Sinai on that wonderful doctors there I noticed that my weight was down I was feeling very tired and there were some other signs so I went through six months of Antibody treatment.
    My strength came back and I actually felt great about two years later around Christmas time I noticed I started losing weight rapidly night sweats and everything else we’re back
    New Year’s Day I went to the emergency room and after a week in the hospital Play started doing more tests including a P.E.T. and bone marrow My glucose also Rose significantly so getting that town was difficult in order for to do a pet scan. I also had an infection in my leg of the lymph nodes and I was put on pain medicine for three weeks as well as Strong antibiotics
    The doctors at Mount Sinai started me on an oral chemo via a trial
    After four weeks the node started to melt and my weight started to come back the pain was also gone
    Now I see the doctors for a scan and blood tests every 90 days and I have a constant concerned as to what will happen next I can fill some of the swollen lymph nodes when I wash my hair and it other times and it’s just a constant reminder but we keep going forward

  • Carolyn B
    8 months ago

    Early in the diagnosis of an indolent nhl (I have a different one follicular, but like CLL watch and wait is appropriate on occasion and it is incurable at this point in time) the emotional earthquake often creates a lot of anxiety. Several years into this you will likely have figured out how to better live with cancer (took me about 18 months to really get it together – some people take less time, some more). While scan anxiety may still be in the picture, I told my oncologist, when he called to re-schedule an apt several weeks out and then reschedule again several more weeks out that while I was having some symptoms don’t worry about it, I am not about ready to naw my fingernails up to my elbow waiting.

    I think early on in the game what the original poster and the two folks who replied before me is perfectly normal. You are doing several things. First you are adjusting to the entire cancer diagnosis thing. Second you don’t know yet what symptoms matter and what ones are likely unrelated, and third this hasn’t gotten routine yet.

  • seahag
    10 months ago

    I was diagnosed this past July in the same manner. Ironically I had never felt better in my life, physically or emotionally, as I had just remarried after a twenty year long unhappy single life. My new husband and I bought our dream house on the ocean, we opened an art gallery and gained immediate notoriety. Then WHAM!
    I am RAI stage 0, watch and wait, and now I have developed an ulcer from the anxiety it is giving me. I developed serious pain in my upper left quadrant and of course immediately thought it was my spleen, which an ultrasound proved it not to be that. It was the ulcer. I keep thinking I am feeling nodes and now I won’t know for sure until I go to the doctors again in 6 weeks, which exacerbates my anxiety and my stomach acid, which I am now on meds for.
    So the answer is YES, I HAVE MAJOR CLL ANXIETY. I am beginning to wonder if the the mental torture is going to be more harmful to my body than the the CLL!

  • Michellep
    10 months ago

    Yes. I am going through the exact feelings you are going through. I have good and not so good days but I try to stay positive every day. When I get a cold or very tired I always think about my CLL.

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