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CLL Diagnosis and treatment

Hi, I'm Ranchero63

Hello, I am male, age 56, and I was diagnosed with CLL in October 2019. At first I heard the words “lymphoma/cancer” and my wife and I were devastated. However, after finding a good doctor and getting way more information about the disease; we now feel that it’s just a bump in our road. I feel fine and am pretty active, walking 2 miles daily. I have a wonderful family and support group. My Lymphocytes are high at 55% and my WBC is 28,000; but my doctor tells me that as long as I am not having any life-altering symptoms of the CLL — hold off any treatment. I go every 3 months for blood work and have had one CT. My numbers have been increasing, but I feel fine. The best way that I have been dealing with my CLL diagnosis is by seeing my doctor as scheduled and by living life with positive thoughts. Since my diagnosis, I found out that both an Uncle and my Grandfather on my mother’s side of the family also had leukemia. They both lived into their 80s and died of other illnesses.

  • Post #1
  • Tue Mar 3, 2020
Hi, I'm Charles D.

You will be fine.. my WBC got to 300,000 before i started treatment which was 3 years ago. I get great care with dr. Swanson.

  • Post #2
  • Sun Mar 8, 2020
Hi, I'm Gary B.

My while cell count is around 100,000 and lymphocytes are high. What kind of treatment did you do?

  • Post #3
  • Wed May 20, 2020
Hi, I'm Ranchero63

Good news: My CLL is moving very slowly. My latest blood panel showed only a slight increase in WBC and Lymphocytes. I do have quite a bit of waxing and waning of my lymphnodes. Some weeks they are quite large and are quite enlarged all over my neck, head, and torso. I have also been experiencing a lot of itching all over my body and increased sweating. I was told to add Zyrtec 10 mg for the itching and it does help quite a bit. I make sure to stay hydrated and don’t spend much time in direct sunlight. Otherwise, I am feeling quite normal, no treatment planned yet. I continue to live my life and try not to think about the CLL. I have a wonderful wife and children that support me and don’t treat me any differently. I continue to see my oncologist as necessary and other doctors as needed. Hang in there and try to think positive. You don’t want to let the CLL rule your life!

  • Post #4
  • Fri Aug 28, 2020
Hi, I'm Marty

I am stage four, being treated with a targeted therapy. Imbruvica. Treatment started after C.L.L. was found in back of tongue. After Larnygoscopy. W.B.C. is 29.6. Covid is a game changer. Oncologist prescribed green Tea supplement 3 times a day and Vitamin D3, 5000 units. Scrapes and cuts are healing. Helps immune system. Serious bruising from Imbruvica. Diagnosed in 2012, Imbruvica stared July 2019. The tongue is part of the Lymphatic system, my doctor caught the tongue issue, on a scan.

  • Post #5
  • Mon Aug 31, 2020
Hi, I'm Joyce L K.

I was diagnosed 3 years ago, 68 female . It was discovered by accident due to a pain in my abdomen. It is the best cancer to have everyone says. No treatments or problems. I just come in for 6 month check ups and labs. I figure I will die from something else so I never worry about this. It is shocking to hear the news but it is not the end of the world. I feel very pleased with the care I am receiving.

  • Post #6
  • Thu Dec 3, 2020
Hi, I'm dafurb.

78 year old female. Diagnosed at age 65 with 12000 wbc. Slowly growing to 42000 last November. Ended up in hosp with blood clots in lungs and legs and was put on eloquis blood thinner as my oncologist thought white cells may have caused clots. Got 1st Phizer vaccine in February. WBC went to 58000 in March right before 2nd shot (no side effects from either shot). Waiting for next blood draw to see if shots caused spike in WBC. I will post again after next virtual with my oncologist

  • Post #7
  • Tue May 4, 2021
Hi, I'm Susan C.

I would like to know about any side effects from Imbruvica. I was diagnosed in 2020. My CLL is a bit more aggressive.

  • Post #8
  • Sat Jun 19, 2021
Hi, I'm Michael K G.

I have been on Imbruvica for 2 years in July. Besides having to use the restroom much more often (you have to drink 65 oz. of water every day) I have felt great. My white blood count skyrocketed when I went on it but is almost down to normal now. I am 62 and in decent shape and have not suffered from diarrhea which is one of the more common side effects.

  • Post #9
  • about 22 hours ago
Hi, I'm Michael K G.

I saw two studies showing that CLL patients have around a 50 – 50 chance of developing antibodies to Covid after being vaccinated. has anyone heard from their doctor about that?

  • Post #10
  • about 22 hours ago

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