Chronic Lymphocytic Leukemia (CLL)

Here’s a free collection of resources on Chronic Lymphocytic Leukemia (CLL)- blogs, support groups, first-hand experiences and advice from people who’ve had Chronic Lymphocytic Leukemia, etc.

*Resources about other types of leukemia: ALL, AML, CML.

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Chronic Lymphocytic Leukemia Blogs

Here’s a collection of Chronic Lymphocytic Leukemia blogs- written by people with CLL, or about CLL.

Dr. Brian Koffman	bkoffman.blogspot.com	2016
John Wagner	johncll.blogspot.com	2016
Jim Smith	meandleuk.com	2016
Christine Goodnough	christinegoodnough.com	2016
Dr. Jeff Sharman	cll-nhl.com	2016
Patient Power CLL Blog	patientpower.info/blog..cll	2016
Dave Eckberg	adventureswithleukemia.blogspot.com	2016
Terry Evans	terrysclljourney.blogspot.com	2016
Dr. La Verne Harris	drlaverne.blogspot.com	2016
David Sumner	howsdave.blogspot.com	2016
The CLL Way	cancerwalker.blogspot.com	2016
Shari Howerton	sharihowerton.blogspot.com	2016
Denise	cllalternatives.com	2016
Tamara Fowler	tamarafowler.blogspot.com	2016
Scirocco 2 Morocco	scirocco2morocco.blogspot.com	2016
T-PLL Bill’s Journey For A Cure	tpllbillsjourney.blogspot.com	2016
Ramblings By Randy	randy-ramblingsbyrandy.blogspot.com	2015
Marie Z.	prayerfaithandhope.blogspot.com	2015
Cancer Boxer	cancerboxer.com	2015
David Arenson	clldiary.blogspot.com	2014
Deb	combatingcll.blogspot.com	2014
Ann Gregory	anngregory.blogspot.com	2014
Don	lymphocyticninja.wordpress.com	2013
The CLL Ranch	thecllranch.blogspot.com	2013
My CLL Trail	clltrail.blogspot.com	2013
Steve Freier	cllhealed.com	2013
Nick	whatiscll.com/blog	2013
Terry Hamblin	mutated-unmuated.blogspot.com	2012
Maia’s Into The Moonlight	maiasintothemoonlight.blogspot.com	2009
My Journey With CLL	myjourneywithcll.blogspot.com	2009
Donna Gregory	everydayhealth.com..life-with-cll	2008

Chronic Lymphocytic Leukemia Support Groups

CLL Support Groups On Facebook

Google Plus CLL Support Communities

Other CLL Support Groups And Forums

General Leukemia Support Groups

In-Person Support Groups In The United States

Chronic Lymphocytic Leukemia Survey

We’re surveying people about their experiences with Chronic Lymphocytic Leukemia. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)

**Click here to share your experience with Chronic Lymphocytic Leukemia**

Free resources on other types of Leukemia: ALL, AML, CML

Chronic Lymphocytic Leukemia Subtypes

What subtype/stage of CLL do you have?

Watch and wait. (Wendy, diagnosed at age 53)
Stage 3. (Debra, 56 years old)
Stage 2. (Lynn, 58 years old)
Non-Hodgkin Lymphoma, Stage 4. (Jean, 69 years old)

Chronic Lymphocytic Leukemia Risk Levels

Were you (or your loved one) considered low, moderate or high risk?

Low risk. (Wendy, diagnosed at age 53)

Chronic Lymphocytic Leukemia Symptoms

What CLL symptoms have you experienced?

Fatigue. (Wendy, diagnosed at age 53))
Enlarged lymph nodes, fatigue. (Sally, 54 years old)
Hot flashes, weight loss, swollen glands, tiredness. (Debra, 56 years old)
None. (Brenda, 57 years old)
Enlarged lymph nodes, frequent infections, fatigue, enlarged liver and spleen. (Lynn, 58 years old)
Low platelets, low hemoglobin. Fatigue, infection. (Terry, 58 years old)
Sweating, fatigue, bruises, frequent infections (pneumonia, shingles, viral meningitis, sinus infections), insect bite reactions, poor skin healing. (Jean, 69 years old)

Chronic Lymphocytic Leukemia Causes

Is there anything you believe contributed to your CLL?

Bad luck. (Wendy, diagnosed at age 53)
Round Up…pesticides. (Debra, 56 years old)
Genetics. (Brenda, 57 years old)
No. (Terry, 58 years old)

Chronic Lymphocytic Leukemia Interesting Facts

What are some interesting things you’ve learned about CLL?

All of it is interesting but upsetting. (Wendy, diagnosed at age 53)
That you my not need treatment right away. (Debra, 56 years old)
Genetic predisposition. (Brenda, 57 years old)
We each handle it and the treatments differently. Our symptoms are different. We require treatment for different reasons. (Terry, 58 years old)
It’s different for everyone. (Jean, 69 years old)

Chronic Lymphocytic Leukemia Pain Relief

What are effective ways to relieve CLL-related pain?

A nice glass of wine, relaxing, salt scrubs are amazing and hot baths. Relax by the fire, read…enjoy life. (Wendy, diagnosed at age 53)
Yoga, smoking weed. (Debra, 56 years old)
Exercise. (Brenda, 57 years old)
Pain meds are all that have worked for me. Morphine. (Terry, 58 years old)
Rest with prescribed medication. (Jean, 69 years old)

Chronic Lymphocytic Leukemia Difficulties

What are the most difficult aspects of living with CLL?

The fatigue bothers me most. I want to be as energetic as before and I don’t see that happening, sadly. (Wendy, diagnosed at age 53)
Wondering when it will progress. (Sally, 54 years old)
Energy level. (Debra, 56 years old)
Mental stress. (Brenda, 57 years old)
Fatigue, watching and waiting. (Lynn, 58 years old)
Not knowing when or how long before remission will end. Starting new treatments. (Terry, 58 years old)
Infections, bruises, fatigue, not feeling well, sweats. (Jean, 69 years old)

Chronic Lymphocytic Leukemia Advice

What words of advice/encouragement could you give someone recently diagnosed with CLL?

It isn’t the end of the world. Your life still definitely changes, but don’t let it end your pleasures. (Wendy, diagnosed at age 53)
Get a juicer, rest when you’re tired. (Debra, 56 years old)
Enjoy your life, do things you love, remove toxic people. (Brenda, 57 years old)
Take it easy on yourself, practice yoga and mindfulness, breathe, relax when tired. (Lynn, 58 years old)
Know God. (Terry, 58 years old)
Trust your doctor, have a support person go with you for all appointments. (Jean, 69 years old)

Chronic Lymphocytic Leukemia Recommendations

Anything you would or would not recommend for someone with CLL?

Keep your hopes up, let others help you. (Wendy, diagnosed at age 53)
I would tell people to eat healthy..stay away from sugar. (Debra, 56 years old)
Reading statistics. (Brenda, 57 years old)
Get a CLL specialist. (Terry, 58 years old)
Live day to day, be optimistic, have a support person. (Jean, 69 years old)

Chronic Lymphocytic Leukemia Treatments

What’s been your experience with treatments (radiation, chemotherapy, surgery, etc.)?

I had a horrible experience with a bone marrow biopsy. Get someone who does it often. (Wendy, diagnosed at age 53)
I have done well with chemotherapy…drinking lots of water and having lots of rest. (Debra, 56 years old)
None. (Brenda, 57 years old)
None yet. (Lynn, 58 years old)
Had 4 rounds FCR 7 years ago. Had a 2.5 year partial remission. Got very sick from an infection. Then had a Spleenectomy and Rutuximud. Had a 3 year partial remission. Now I’ve been in Inbruvica for 1 Year this June. (Terry, 58 years old)
Staff will help you get through tough times during therapy. (Jean, 69 years old)

Chronic Lymphocytic Leukemia Resources

What specific CLL resources have you found most helpful?

Personal blogs. (Wendy, diagnosed at age 53)
Internet. (Sally, 54 years old)
Friends, family. (Debra, 56 years old)
Internet- CLL forum. (Brenda, 57 years old)
Cancer support community- formerly Gilda’s club, LLS and most recently CLL Facebook. (Lynn, 58 years old)
My Doctor, Nurse Practitioner, support groups. (Terry, 58 years old)
Lymphoma society. (Jean, 69 years old)