Hi. I'm new to this site

I name is Todd, I am 52 years old and live in Florida. I was diagnosed almost exactly 10 years ago from lab work from what I thought was a routine physical. My brother died of CLL which transformed into Richters in December 2004 so I am particularly sensitive to that possibility. I am under the care of Dr. John Byrd at Ohio State University, who I visit with once or twice a year. I also have a local general practice Doctor who communicates with them

Although I am unmutated, my CLL not been as aggressive as some. My WBC is around 70,000, my hemoglobin around 12 But recently my platelets have dropped to around 108,000.

I have struggled with repeated bouts with pneumonia. Last year my pneumonia transformed into ARDS. Were it not for a timely intervention and transfer to UAB, I would not be here.

More recently, I had a bout with bacterial pneumonia and a plethora of aggressive antibiotics. I have read where some of those antibiotics cause drop a temporary drop in platelets

A month later, I am dealing with low-grade fevers which peek around 6 PM and mysteriously disappear overnight. I am also fatigued and have a strange itching sensation. Tylenol does not reduce the fevers.

I am not nearly as educated as some of you are on understanding CLL. It flies above my head. I am searching for a better understanding

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16 Replies

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  • Hi Todd. What is ARDs and UAB? When platelets drop under 100 that is one indication for treatment. Also does Byrd think treatment might restore some of your immunity? Best wishes. I'm in So. Fla.

  • I believe ARDS is Acute Respiratory Distress. UAB is University of Alabama at Birmingham. Others, please correct me if I am wrong.

    In a related question / response: What is the general advice for similar patients in regards to the Prevnar vaccinations? Is ther a point in the CLL progression that it is not wise to receive these?

  • Yes, acute respiratory distress syndrome.

    I stopped breathing but fortunately I had a family member in the room and they were able to ventilate me without losing too much oxygen, then transfer me to university of Alabama Birmingham where I spent 10 days on what is called a Roto prone bed.

    That, prayers, and good medical treatment saved my life.

    I'm not sure about your technical question.

  • I don't think there is any contraindication to getting pneumonia immunizations, and it is recommended. Ask your hem/onc.

  • Welcome. There are tons of resources on this site. If u r seeking greater clarity u might wish to specify what is flying above ur head and then others might suggest videos or texts which help clarify points u find difficult . Your level of language betrays that you are not slow thus you may have just been reading texts which are overly complicated. Have a couple of videos I like but they may be too elementary given you have had the disease for ten years. I like Not your father's CLL by Dr. Pagel. I find Dr. Sharman's blog is excellent for clear information.

  • Hello Todd and welcome. Sorry to hear re your brother but glad your is not toaggressive. Lots of expertise here, feel free to raise questions people smarter than I will have an answer

    Milton Keynes UK Marc

  • I guess my biggest question is, how concerned should I be about intermittent fevers that approach 100 every afternoon then wain around bedtime. I've read where that is considered normal but not historically for me.

    Also, The itching without a rash.

    I did enough reading online to be dangerous with my presumptions. I read where both of those are signs of Hodgkinson lymphoma.

    I have had many lab test done and well my platelets are low, my LDH is within normal boundaries. So, maybe there's hope that this is it something too serious.

  • Have you had your immunoglobulin levels checked? You might benefit from IVIG infusions.

    Recurring or serial bacterial infections is often an indication that your immunoglobulin levels may be low...

    ~chris

  • That's a really good observation.

    I wasn't aware of it but my doctor mentioned it on Friday. I did have the lab work done but it is still pending results.

  • Hi Todd,

    I am a 61 yr old female diagnosed Nov. 2016 and just found this site. I have intermittent fever as well and had horrible itching in my arm pits without a rash. Due to an acute sinus infection and low immunoglobulin leve I have now received 2 IVIG infusions. Thank goodness the itching has disappeared!! I am due to have 2 more IVIG infusions, 1 every 28 days. My immunoglobulin level did not rise after the 1st treatment but hoping to see better results when they test before the 3rd one. Like you I had read that the itching was a sign of Hodgkin Lymphoma but my oncologist assured me it is a sign of CLL as well. I'm having surgery to open and drain the blocked sinus in a week so hoping that will help the immunoglobulin level come up. Good luck and I hope you get some relief soon from the itching.

  • Thank yo for sharing your similar experience. Very helpful

  • Todd,

    Have you mentioned these symptoms to Dr Byrd? He is a phenomenal doctor.

    Jeff

  • you need. to make an appointment with Dr Byrd immediately!

  • Dr.Byrd will be able to help you with treatment plan. Itching, infections and fever are indications of CLL

  • I certainly agree, contact Dr. Byrd. I live in Ohio and from what I hear he is the guru in understanding and treating CLL.

  • I want to thank all of you for your warm welcome and helpful suggestions, especially those of you who have recommended I follow back up with Dr. Byrd.

    Following a determination that I have the Epstein Barr virus he wants some follow up labs. While a Richter's transformation is a possibility it is also possible that this can be just a virus and treatable by an antiviral agent.

    As I have said, always seems to go above state university education and finance degree. I am thankful for those of you out there who understand all these technical things and or willing to help me understand.

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