Scared & Emotional

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wodarczak
wodarczak Member Posts: 1 *
in Leukemia #1

After waiting 16 days, without my PCP giving me any info except a referral to a Hemotologist, I was told I have CLL. I now have to wait 7 more days to find out "specifics". The lack of communication with my health care providers is frustrating.

I'm staying positive with my family & friends, but silently I'm freaking out.

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  • Theresa_M
    Theresa_M Member Posts: 1 *
    #2
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    Please calm down. I was diagnosed 2.5 yrs my spleen n liver swelled. First my stomach I just thought I need to exercise more. But next I got a pain my left side that would not go away and felt so tired. Went to hospital, after labwork and MRI doctors sent me to Medstar Georgetown Univ. Hospital. WBC high, RBC low and Platelets. After many tests and bone marrow biopsy....CLL and Anemia. I was already type 2 diabetic. Now I'm SCARED. I know I wanted to live. I had a very good Oncologist after a week in hospital I was sent home with all these meds Prednisone 2.5 months of brain fog, folic acid, Alloputinol to prevent me from getting gout. After 2 weeks I began taking Calquence acalabrutinib pills 2x day for CLL at first I got headaches dailybecause I didn't know extreme heat from the sun was making me sick. Now I know stay out of direct hot sun, must use sunblock and in some cases wear long sleeves, brim hat and cover legs too. My newest problem stated when Astra-Zeneca changed meds from capsules to tables my legs hurt every morning muscle spasms, cramps and achy joints. I must endure because the Calquence keeps my WBC in check. I'm 64 ,other than the leg pain and fatique I am still able to work virtually from home, babysit my grandbaby and do other tasks just at a slower pace. Your body will tell you what your limitations will be and you adjust. Peace n Love.

  • johnwick
    johnwick Member Posts: 1 *
    #3
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    Feeling scared or emotional is natural and understandable. Acknowledge your emotions and try to identify the source of your fear or emotional distress. directv plans Reach out to someone you trust for support or consider practicing relaxation techniques such as deep breathing or mindfulness to help manage your emotions. Remember that it's okay to seek professional help if needed. You're not alone.

  • po18guy
    po18guy Member Posts: 1,474 Member
    #4
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    Sorry to hear of this. The "C" in CLL stands for chronic. That indicates time. The good news in all of this is that time is on your side, as the development of drugs to treat CLL is on-going. If the variety which you have been diagnosed with is "Philadelphia positive", then a very effective drug named Gleevec (Imatinib) was introduced some years ago. A book about it entitled "Magic Cancer Bullet" was authored by Dr. Daniel Vasella. Even if not, there are many effective treatments available.

    Both the Lymphoma Research Foundation and the Leukemia and Lymphoma Society have information pages which should help you understand the disease as well as provide hope. Interestingly, Small Lymphocytic Lymphoma (SLL) is the same disease, but for some reason remains in the lymphatic system rather than being confined to the marrow.

    As to how to deal with it, what do you believe? Do you have a world view, cultural practice, philosophy or religion? If so, now is the time to dive in. We are body and spirit and the spirit is as important as the body.

    Note that many of us here have nightmare medical resumés but are still here and still believe that life is worth living. I have been in therapy for almost 16 years and four cancers and remain delighted to be anywhere.

    '

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