Feeling Nervous About Watch and Wait Approach

My doctor has me on watch and wait but I am nervous that I am not doing anything to treat this. Should I be concerned?

Surviving Chronic Lymphocytic Leukemia: A Testimony of Hope

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

Struggling with Chronic Illness Disclosure: Who to Trust?

After being diagnosed decades ago, only a handful of people know my condition. Many of them no longer are friends shortly after I shared the news with them. What are your thoughts about who to tell and when?

Starting Chemo Next Week, Feeling Stressed - What to Expect?

New here, I'm starting chemo next week. I'm so stressed. What is it really like?

Navigating Treatment Options for CLL

12 years fighting cll. BTK inhibitors mutation. Now onto obinutuzimab and Venetaclax. A bit fearful of the cardiac side effects I’ve read about. Hoping Dr will start a low dose regimen and slowly ramp up.

Seeking Advice on Zanubrutinib - Any Experiences?

Anyone taking Zanubrutinb?

Struggling with Fatigue and Mood Swings Post Stem Cell Transplant

Hi, new here, i'm after stem cell transplant,How do you deal with the crazy mix of fatigue and mood swings? totally wiped out. just want to get my power back.

Concerns about Dental Implants with High White Blood Count

I have been on watch and wait since 2012 and have a white blood count of 26,000 that varies little. My oncologist does not want to see me any more, but I have blood work done routinely. Are dental implants safe?

My Cancer Treatment Journey: From Diagnosis to Remission

Just to introduce myself. I was diagnosed in 2010, Trisomy 12 unmutated. I was in watch and wait until 2019. Started having significant infections with a steeply declining hemoglobin count. WBC was 287,000 and hemoglobin was below 9 when I entered a clinical trial in 2020 combining Bendamustine (Light 3 cycles to reduce tumor load), rituximab and venetoclax. After 2nd round of Bendamustine, I developed Steven Johnson Syndrome and was hospitalized for 6 days. Fortunately, it wasn't too severe and I recovered pretty quickly. After several months of treatment (rituximab and venetoclax), I became neutopenic, then developed pneumonia with another hospital stay. I am now out of treatment, achieved MRD negative on early 2022, and am currently still in remission. Feeling good, and very happy that there are now multiple treatment options. I now fully expect to live a long l, healthy and happy life. Thankful for all my friends, family and those that provided support during treatment.

Living with CLL at a Young Age: My Journey

Hi again. I was an unsual patient with CLL because I was diagnosed when I was only 45. This is very young to get this leukemia! Now, I am 55 with an 11- year old and 18- year old son and husband. I am very active, and staying active honestly helps with the fatique. Calquence has had few side effects for me, but I have been told that this medicine will not work forever! Perhaps, it will for me!!!??

Introduction and Update on CLL Treatment Journey

Ho just introduce myself I'm 57 Dx CLL 2015 , started treatment Ibrutinib in 2017 and still on it although my numbers are rising and heamotolgy are looking at a possible new drug depending on what btk mutation I have . I suspect it will be piro or similar. Last 16 months I have been getting nodular spots on my skin mainly face ,scalp chest and back and having biopsies done of which are not conclusive although they suspect it's to do with my CLL hopefully have more on this very soon

Concerns about Petechiae and Leukemia: Do They Come and Go?

I've been reading up on petechiae and how they might be related to leukemia. I'm a bit confused, though. Do these spots come and go, or do they stay once they appear? I've noticed some spots on my arm, but they seem to fade and then reappear. Could this be a sign of leukemia, or is it something less serious?

Impact of Diet on Lymphocyte Count: What You Need to Know

Can diet or nutrition have an impact on my lymphocyte count?

Understanding Leukemia Diagnosis and Treatment Process

How was your leukemia diagnosed? What were you feeling? What did your oncologist do ?