Anyone have chronic lymphocytic leukemia (CLL)?

@shelli3300 what kind of nutritional therapy?

@dianeled
I.V. Vitamin C and I.V glutathione. Naturopaths administer this, not Oncologists. It is not within Oncologists education in University.

@mulle I have a port and I am so grateful. It makes infusions so much easier. The nurses taught me to put a glob of lidocaine creme, prescription strength, over the port. Then cover with clear wrap(like Suran). Do that at least an hour before your infusion. You won't feel the needle go in. It really does work.

I’d like to connect with other people living with CLL.

Join a support group with CLL Society. Monthly Zoom meetings. Our Minnesota group has been meeting for many years. Check out cllsociety.org

@gg17, I moved your post to this discussion where you will find many members talking about living with chronic lymphocytic leukemia (CLL).
- Anyone have chronic lymphocytic leukemia (CLL)?https://connect.mayoclinic.org/discussion/anyone-have-cll/

Use the group search to find many more discussions on all topics related to CLL https://connect.mayoclinic.org/group/blood-cancers-disorders/

How are you doing? Are you on active surveillance or other treatment for CLL?

Greetings. I’m new to this group, diagnosed a couple of years ago and still in watchful waiting stage. Curious whether anyone else with CLL has experienced bad reactions to the pneumonia or other vaccines. Thanks for your feedback.

Most CLL patients ( due to compromised immune systems) don’t get the full benefit of vaccines. But my CLL team strongly recommends getting them (Covid, flu, Shingrix, etc.). Just NEVER get a live vaccine. The ones listed above are all fine. I typically get little or no reactions, but hopefully some benefit.

Hi @buttercupnj Each of us, whether we have a blood cancer/condition or a perfectly healthy immune system can have a variety of reactions to vaccinations.
I've had some vaccinations where I had nothing but a sore arm and a few others that put me out of commission for a few days with 'flu-like' symptoms of slight fever, chills, aches, etc. While the reactions can be a bit miserable for some of us, the vaccinations work to ramp up our immune system to defend against the worst of the illness if we're exposed.

Vaccinations may not always completely prevent the flu, shingles, covid, etc., but with our immune system already given a head start in recognizing the offenders, the duration and intensity of the illness is usually less.

By the way, welcome to Mayo Connect. So glad you dropped into the conversation about having CLL. There are many other discussions relating to CLL in the forum where other members have shared their experiences.

If you'd like to explore a little more, type CLL or Chronic Lymphocytic Leukemia in the upper search bar. You'll find links to all of the CLL discussions.

Back to the vaccines! What type of reaction did you have to the pneumonia shot?

@pearl72 hi Pearl. It’s awesome reading about the majority of patients you included with improving blood tests results from medications.
I was diagnosed in 2023, moving to doctor2 this month. Doctor 2 intended no criticism explaining my hemoglobin did not qualify for Calquence or Zanubrutinib in her office standards. My side effects pain to the feet was unbearable forcing ending my treatment. Since the medication failing my blood’s condition is more abnormal and i feel slight CLL symptoms.