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MikeJames

32d

Surviving Chronic Lymphocytic Leukemia: A Testimony of Hope Hi I’m Mike, I was diagnosed with Chronic Lymphocytic Leukemia (CLL); a cancer of the bone marrow and a group of white blood cells called lymphocytes, which help your body fight infection, in April 2006 @ 6.2K Stage 0 which was revealed through a routine yearly physical starting in 2004 that my White Count was rising. CLL are cancer cells that cause an increase of the White Count (WC) in the blood. About 15000 people; commonly affects adults, are diagnosed with CLL each year. Over the next 4 years while in Watch and Wait (W.W.) I had periodic blood tests and met with an oncologist discussing the disease’s progression, treatment options and when to begin treatment, including but never needed a Bone Marrow Biopsy. Treatment is usually considered when the WC reaches 100K but some doctors will wait until 200k. My WC continued to rise; at first slowly then increasing each time I had blood test; occasionally degreasing only to rise again in later blood test. This continued until December 2009 when my WC reach 143k. Also, a Cat Scan revealed that I had a swollen spleen another reason treatment is considered. At my next apt on Jan.12, 2010 My oncologist said it was time to begin a Chemo treatment. Anyway, he said “what else do you have to do this winter?” I agreed and it was explained that the Chemo treatments would be about every three weeks for 5 days each week beginning on Jan.25th using both Fludarabine 1st and Rituxan along with Fludarabine. When I went in for my 1st treatment on Monday morning January 25th the nurse took a blood sample to check my WC which had dropped to 98k before any Chemo. My Chemo proceeded and I continued to have Chemo using Fludarabine throughout the week of treatment. My WC then was checked on 2/1 @ 14.2k and again on 2/18 @ 61k. It was explained it takes a series of treatments to bring the WC into normal range (normal 4.5k-11.0k). On February 22nd I began my second week beginning this treatment with a more aggressive Rituxan Chemo treatment along with Fludarabine. I had some serious reaction side effects during the treatment and it had to be slowed down taking longer to administer the drug. On March 5th my WC was 3k and my oncologist suggested discontinuing the remaining treatments saying I had responded better than most people do to Chemo. My Leukemia remained in remission, at first with the WC in the normal range (10.5k on 6/23/10) with only a slight rise in May 2010 due to a mild case of shingles possibly caused by the cancer or chemo treatment itself. I believe that God's mighty healing hand and the many people praying for me brought me through my Chemo treatment with little side effects and into remission. I followed up with regular labs and meeting with my oncologist or someone from his oncology team. In October 2012 when my WC reached over over 100k I again went through Chemo treatments using both Fludarabine and Rituxan then into remission. Going through Chemo treatments you can have anxiety but I never took any medication for anxiety because I didn't feel any. I was at peace during my treatment. I attribute this to my positive attitude, a strong faith and trust in God that He was control, along with many people praying. As of May 2017 when my WC started to rise again at 201.9k I was prescribed Imbruvica, an oral medication, which is now used as one of the front line therapies for CLL. I have labs every 6 weeks and meet with my oncologist or someone from his oncology team every 6 months. I continue in remission and all of my lab results are normal as of this writing. It's been 18 years since being diagnosed and knowing the cancer can come back is constantly in the back my mind each day. I'm hoping and praying for a cure soon for all cancers. It’s not me but we can do this together!  Stay Strong 💪 and Stay Positive💞 🩸 BEATING CANCER IS IN OUR BLOOD 🩸  18 Year (Apr il 2006) CLL Blood Cancer Survivor  Pray for each other so that you may be healed. James 5:16

Top reply
    • Birkies

      12d

      I just got a call from my doctor today that I had to go back in and have blood redrawn for cryo- something or other as I have smudge cells and a very high lymphocyte count… I believe this test that they drew for is to identify if this is a form of leukemia now or if this is related to immune system issue. I have been googling and find that if you have those smudge cells, it’s pretty indicative of CLL… I am not sure if it could be any other type of leukemia with those smudge cells or not and I’m just a bit nervous about what type it may be. I had breast cancer 18 years ago and I’m blessed that I am now 70 years old, but it’s always scary knowing you’re confronted face-to-face with your mortality. It was very uplifting to read this testament from this gentleman and how long he has been living with CLL. It will be an estimated three days before I’ll get the results, but I’m already trying to mentally prepare myself so thank you for putting up. Hopeful thought in my head that I can hang onto for a few days.!!

    • Birkies

      12d

      I just got a call from my doctor today that I had to go back in and have blood redrawn for cryo- something or other as I have smudge cells and a very high lymphocyte count… I believe this test that they drew for is to identify if this is a form of leukemia now or if this is related to immune system issue. I have been googling and find that if you have those smudge cells, it’s pretty indicative of CLL… I am not sure if it could be any other type of leukemia with those smudge cells or not and I’m just a bit nervous about what type it may be. I had breast cancer 18 years ago and I’m blessed that I am now 70 years old, but it’s always scary knowing you’re confronted face-to-face with your mortality. It was very uplifting to read this testament from this gentleman and how long he has been living with CLL. It will be an estimated three days before I’ll get the results, but I’m already trying to mentally prepare myself so thank you for putting up. Hopeful thought in my head that I can hang onto for a few days.!!

    • Michele.PatientPower

      23d

      Hi Mike. If I'm reading your post correctly, you are still on Ibrutinib/Imbruvica? I too have CLL and was diagnosed in 2012. I started treatment in 2015 on a clinical trial of Ibrutinib plus FCR. I enjoyed a bit of a treatment holiday and relapsed. Been on Acalabrutinib/Calquence since November 2021. How are you feeling on Ibrutinib? I want to allay your fears about relapsing. Should you there are so many more drugs. now for CLL than when you were first diagnosed and also from when you relapsed. We have many programs here on Patient Power regarding these. Please LMK if you need some links.

    • Walker_

      24d

      Hey, remember! this diagnosis doesn't define you. you’re way stronger than you think, Don't let this hold you back. Keep pushing forward and rising above it!

      • Michele.PatientPower

        23d

        @Walker_ @Walker_ YES!!! Great advice.

    • Jack1943

      25d

      Today, 5/2/24, They put me on Brukinsa, supposedly the latest and greatest. We’ll see. Hope the side effects are minimal, Blessings, Jack Dixon

      • Michele.PatientPower

        23d

        @Jack1943 @Jack1943 Hi Jack! I have heard great things from the leading CLL specialists about Brukinsa/Zanubrutinib as well as from patients. Please keep us posted on how you are feeling on it.

    • jordangreet

      26d

      You're already showing how resilient you are by facing this head-on and I really admire that. And let's not forget, you're not just a statistic but a part of a whole community rooting for you. Take good care of yourself and keep basking in hope

      • Michele.PatientPower

        23d

        @jordangreet @jordangreet Love your comment! You point out some great strengths here that help keep us all going: resilience and hope! plus the power of community. Thank you!

    • Lyudi189

      29d

      Hey Mike! Thanks for sharing your story, buddy!So, you were diagnosed back in 2006, and it was caught pretty early, right? That's awesome! Stage 0 is great, and I'm sure that's a huge relief. I can imagine it was pretty scary at first, though. I mean, hearing the ""C"" word is never easy. But it sounds like you're taking it in stride and staying on top of your health. Take care and keep kicking cancer’s butt!

      • Michele.PatientPower

        23d

        @Lyudi189 @Lyudi189 What type of leukemia do you have?

    • Jack1943

      30d

      I’m 81, they want me to go on Brukinsa (zanubrutinib). The common side effects seem to be too severe to want to do this. If I went on it, how much time would it buy me. It’s only going to retard the progression. Shouldn’t I just reject the treatment?

      • Michele.PatientPower

        23d

        @Jack1943 @Jack1943 Hi Jack. I too have CLL. From what I have learned from the leading CLL specialists I have interviewed here on Patient Power, there are minimal side effects. I am not a doctor, nor do I know your medical history, but they are possible side effects meaning they do not happen to everyone on the drug. These drugs save lives. I was diagnosed in 2012. Thanks to the earlier versions of Brukinsa, which have greater chances of side effects, I am still alive today!

    • boolyyy

      32d

      Thank you for sharing !! 🫶

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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The testimony is about Mike, who was diagnosed with Chronic Lymphocytic Leukemia (CLL) in April 2006. He underwent a series of treatments including chemotherapy using Fludarabine and Rituxan, which brought his white cell count into the normal range and put him into remission. In October 2012, when his white cell count rose again, he went through another round of chemo treatments. As of May 2017, he was prescribed Imbruvica, an oral medication used as one of the front line therapies for CLL. He continues to be in remission and has been living with CLL for 18 years.

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