Newly Diagonised CLL in March

Posted by arooney33 @arooney33, May 30 1:20pm

I am in the watch and wait stage and next appointment is in September. I have had 2 sinus infections within a month, night sweats, severe headaches at times and poison ivy internally that affected by lungs to be on an inhaler. I feel like I am living on Ibuprofen and Acetaminophen. Any suggestions would help

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

minnesotajim | @minnesotajim | May 31 7:28am

Don’t wait until September. Go see a CLL expert NOW!

Lori, Volunteer Mentor | @loribmt | May 31 8:20am

Hi @arooney33. I’m still in shock over reading you have internal Poison Ivy that affected your lungs! I can’t even… I hope that’s been resolved. But you are in a world of hurt with the sinus infections, headaches and other symptoms you’re experiencing with your CLL.

Chronic lymphocytic leukemia or CLL affects the development of white blood cells called lymphocytes. They are an important part of your immune system. So if their production is diminished that can make you more susceptible to illnesses and infections, which you’re already finding out. I’m so sorry to hear you’re practically having to live on OCT pain relievers…that’s miserable!

I found an informational article that might be helpful in explaining how CLL impacts the immune system. Here’s the link:
https://www.medicalnewstoday.com/articles/cll-and-immune-system
The CLL society provides a great deal of information on their site too. Since you are recently diagnosed and in the ‘watch and wait’ period this is a relevant link for you:
https://cllsociety.org/cll-sll-patient-education-toolkit/watch-and-wait-active-observation/
Were you having the same symptoms of night sweats and headaches when you were first diagnosed? Is this what led to the discovery of your CLL?

arooney33 | @arooney33 | Jun 2 7:41am

In reply to @loribmt "Hi @arooney33. I’m still in shock over reading you have internal Poison Ivy that affected your..." + (show)

Thank you for your response and the links. I had headaches awhile before I was diagnosed but the night sweats started about a month ago.

Lori, Volunteer Mentor | @loribmt | Jun 2 8:27am

In reply to @arooney33 "Thank you for your response and the links. I had headaches awhile before I was diagnosed..." + (show)

I realize you were recently diagnosed with CLL just a few months ago. Even though your doctor has you in active surveillance with no appt for 6 months, it doesn’t mean you can’t contact them in the meantime. Any time you’re feeling a possible change in symptoms or concerned about your health you can certainly schedule an appointment, call or write a message in the patient portal to your oncology office.

We have some active CLL discussions in Connect. Here’s a link to a conversation started by @hikerny, who was recently diagnosed.
https://connect.mayoclinic.org/discussion/anyone-have-cll/
Other discussions can be found by typing in CLL or Chronic Lymphocytic Leukemia in the top search bar!

Having a weakened immune system is challenging any time. I’m there myself. So do what you can to boost your immunity with foods rich in antioxidants and vitamins. Drink around 64 oz of water daily and if you’re feeling up to it (and even if you aren’t) try to take walks daily. It helps reduce inflammation in the body.
Sinus infections can really drag a person down too. What are you doing to treat those?

arooney33 | @arooney33 | Jun 2 9:09am

Antibotics, Musinex, Allergy Medication, and Flonase

Please sign in or register to post a reply.