Zap 70+ cd5 & cd23

[Pokerguy]

Anyone similar? Diagnosed in late 18 but WBC spiked in 2017 to 17K. Now 57.5K with Lymphocytes at 83% Neutrophils at 14%. Currently on W&W........fatigue is getting the better of me. Not much help from hematologist.......any assistance is appreciated.

[2003UK]

Hi Pokerguy, It sounds as if it has been a scary, debilitating time for you. I cannot imagine the thoughts and feelings whizzing around in your head. Personally I have found writing down all my fears, thoughts, feelings, questions and symptoms down really helps me to make sure I get proper responses from my haematologist or medical team and it really helps me. A problem we seem to face is that anyone who has not had fatigue cannot comprehend what it is like. I had trouble with cause ad effect as mine can set in immediately or up to 48 hrs after I have overdone it emotionally, practically or physically. This is a personal opinion but sometimes I need a nap, sometimes a duvet dive or sometimes, fresh air, interaction with people and gentle exercise. Me and my head are a lethal combination sometimes. We are here to support you and if you need to chat to someone the Leukaemia Care Charity helpline is open Monday - Friday 9am until 5pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. I know I haven't perhaps answered your plea for assistance, but take care and keep posting.

[Pokerguy in reply to 2003UK]

Thanks 2003UK, unfortunately I live amongst the corn here in Central Illinois with the nearest hospital some 25 miles away. Not much support and virtually no choice for medical options. I certainly know what you mean about taking the time to walk away, they don’t seem to understand why I get frustrated and need to disappear for a bit. Thanks again and keep up the fight!

[HAIRBEAR_UK]

Hi Pokerguy thanks for your post and update. Sorry to learn that fatigue is getting the better of you, looking back you have been struggling for a while with fatigue and have no doubt looked for many solutions. Our fatigue information points to many potential suspects leukaemiacare.org.uk/suppor... and CLL patients also report fatigue as the most common symptom thy may experience, here are a few strategies that may be of help leukaemiacare.org.uk/suppor... you did not mention your HB levels/ red blood count and platelet count is this normal? Doubling time of absolute lymphocyte numbers is perhaps the most important number to follow it shows how fast things are moving along, you seem to have a very settled path.

Many of us relate to the phenotype markers and numbers you mention and an early spike could have been down to an infection , Also living with fatigue can be a challenge, 2003 UK has a lot of experience of this, good to read her message. Remember though, your white blood cell count does not define you. I recall similar numbers during my watch and wait journey myself which was very settled like yours and it lasted a lot of years before treatment was needed. Drs don't just treat numbers. They treat the whole person and should explore many other variables and how you feel. Keep pressing for answers, I am sure others will respond if you tell us a bit more about yourself.

Nick

[Pokerguy in reply to HAIRBEAR_UK]

Thanks Hairbear, platelets at the low side of normal as is RBC. To compound it all the fatigue is exacerbated by Bariatric surgery I had some 7-8 years ago......stomach isn’t wired like everyone else and I’m afraid oxygen and nutrient levels are playing heck with my condition. My hematologist looked at me like I was crazy when I suggested the correlation......they don’t call it the practice of medicine for nothing. Thanks again!