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Dormant Chronic Myelogenous Leukemia

Hi, I'm DENISE H.

I have been diagnosed with Dormant Chronic Myelogenous Leukemia. No treatment is being done at this time. Just monitoring my WBC every 3 months. Has anyone here been diagnosed with Dormant Leukemia? If so, what are they doing for you?

  • Post #1
  • Tue Feb 13, 2018
Hi, I'm Michael F.

Hi. I haven’t heard the term Dormant CML. I was diagnosed about 3+ years ago. I had been running high wbc for years. Nothing showed up in the peripheral blood work to indicate CML. I had a bone marrow biopsy done and the bcr-abl gene was present. I started on sprycel and was on it for about 2 years. My bone marrow biopsies responded very fast to the medication. Unfortunately I had some side effects like profound fatigue which I was able to live with. But I also developed a significant shortness of breath from the sprycel. I was forced to stop taking it. It took about 6-8 weeks to have my breathing return to normal. I then started on gleevec and have been on it since. I still have significant fatigue. But am still in remission. Why did they call your CML dormant? I am 62 years old and my feeling is if the meds are working why tempt fate. I can adjust my life to the side effects. The key word being LIFE.

  • Post #2
  • Sat Feb 17, 2018
Hi, I'm DENISE H.

Thank you for your response. I have not had a bone marrow biopsy done at this time. I did have a full abdomen sonogram and all organs were normal size. I’m 55 years old and my wbc has been running around 15 and like you, it has been this way for years. My doctor is monitoring my wbc every 3 months and I feel, if it increases he will do a bone marrow biopsy. Can I ask what your wbc was when diagnosed and what it runs now? I do have bouts of fatigue and experience more than usual sweating. I’m glad to hear you are in remission and that the gleevec is working for you. This does give me hope in the case mine does become active. Thank you again!!

  • Post #3
  • Tue Feb 20, 2018
Hi, I'm Michael F.

My wbc was running anywhere from 17-23k. And like I said for years. My PCP wanted me to get checked but I refused. When he finally convinced me to go to hematologist I had all the scans and lab work. They were all normal. My oncologist had me do the bone marrow biopsy and the Philadelphia chromosome was present. On gleevec now my wbc is running around 11. All my other counts have normalized too. Repeat bone marrow biopsies have shown no further bcr-abl present. The TKI meds work very well. But they do have side effects you can read about.

  • Post #4
  • Sat Feb 24, 2018
Hi, I'm Ron S.

Hello, and hope it’s ok if add to this discussion. I was dx. with CLL in July 2015 and I am being monitored every 3 months. During the last 9 months I have had a gradual decline with my platelet count and see my oncologist in April and expect a bone marrow biopsy. Have either of you had any issues with a drop in your platelet count? Thank you

  • Post #5
  • Mon Feb 26, 2018
Hi, I'm Michael F.

Have not had a problem with decrease in platelets. Though I do tend to bruise easily and clot slowly

  • Post #6
  • Sat Mar 3, 2018
Hi, I'm DENISE H.

My platelets are running around 381

  • Post #7
  • Mon Mar 5, 2018
Hi, I'm Caressa

This sounds very similar, if not identical, to what I am experiencing. I do have lymph nodes that are swollen and a mass on my ovary as well. My mother had non Hodgkin’s lymphoma, but I don’t recall her diagnosis being so drawn out. I feel like if it was anything to be worrying about they would have found it in me already. I did recently have a flushed feeling along with bp 170/150 in the er over the weekend, but the ultrasound showed only a cyst, which has been there for at least a year, or that’s what the er says it is

  • Post #8
  • Mon Mar 12, 2018
Hi, I'm Ruby Davis

I was diagnosed with CLL iast November (2017). I had a Thyriodectomy in 2015. Could the CLL somehow stem from the cancer of the thyroid? My endo has been ordering whole body scans and after that scan, he ordered a PET scan and that showed the CLL. I am now going to an oncologist for that problem. I recently finished a 4 week treatment and my lucocytes have returned
to normal. Could I be in remission? I go back to the oncologist in 3 weeks.

  • Post #9
  • Sun Mar 18, 2018
Hi, I'm Susan S.

There will be a CLL meeting in the Nashville area monthly. Yesterday’s meeting was in Brentwood on Sat. morning. Nathan Ferguson ( nkferg@yahoo.com ) 321-604-2559 and Shari Howerton (sharilhowerton@aolcom )are organizers. The people who went are dealing with CLL and have lots of info.

  • Post #10
  • Sun Mar 25, 2018

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