April 6, 2017

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.

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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

  1. CLL Support Group Facebook Group (1,514 members)
  2. CLL/SLL/NHL Cancer support for women Group (491 members)
  3. CLL Caregivers Group (70 members)
  4. CLL support Group UK and Ireland Group (61 members)
  5. Chronic Lymphocytic Leukemia (CLL) Group (4 members)
  6. CLL – Chronic Lymphocytic Leukemia Group (3 members)
  7. CLL Cancer support Group (3 members)
  8. Chronic Lymphocytic Leukemia Group (2 members)

Google Plus CLL Support Communities

  1. Living with CLL Community (116 members)

Other CLL Support Groups And Forums

  1. The CLL Forum (50K+ posts)
  2. HealthUnlocked CLL Support Association (3,664 followers, 6,732 posts)
  3. DailyStrength Chronic Lymphocytic Leukemia (CLL) Support Group (66 members, 181 posts)
  4. Drugs.com Chronic Lymphocytic Leukemia (CLL) Support Group (39 members, 31 questions)
  5. Leukemia & Lymphoma Society Chronic Lymphocytic Leukemia Forum
  6. CancerCompass Leukemia (CLL) Discussions
  7. CancerFocus Chronic Lymphocytic Leukemia Forum
  8. UK Chronic Lymphocytic Leukaemia Forum
  9. CancerConnect Leukemia Community
  10. CancerForums.net Leukemia Forums
  11. Cancer Care Blood Cancers Patient Support Group
  12. HealthBoards Leukemia Message Board
  13. Cancer Research UK Cancer Chat
  14. MDJunction Leukemias Forums
  15. eHealth Leukemia Forum

General Leukemia Support Groups

  1. Leukemia Survivors Group (4,647 members)
  2. Cancer Survivors and Supporters Group (4,384 members)
  3. The Leukemia Foundation Charity Auction Site Group (2,764 members)
  4. FadlCarda Leukemia Foundation Group (1,085 members)
  5. Leukemia & Lymphoma Society-Woman of the Year Campaign Fundraiser Group (527 members)
  6. Leukemia & Lymphoma Society of Canada (Westisle Fund Raiser) Group (454 members)
  7. Leukemia & Lymphoma Society Team in Training Group (398 members)
  8. Leukemia & Lymphoma Society and TNT: Triathlon!! (393 members)
  9. The Leukemia & Lymphoma Society, Lehigh Valley Branch/EPA Group (327 members)
  10. Infant Leukemia Support Group (311 members)
  11. Leukemia & Lymphoma Society, Tri-State Chapter Group (299 members)
  12. Leukemia Support Group – Philippines CML, ALL, AML, etc. Group (261 members)
  13. Leukemia Survivors Google Plus Community (189 members)
  14. Leukemia Relief FB Group (182 members)
  15. Help Fight Leukemia Cancer Group (152 members)
  16. Friends Who Like The Leukemia & Lymphoma Society – OCIE Chapter Group (138 members)
  17. Leukemia Awareness Group (123 members)
  18. No One Fights Alone – Leukemia Awareness Group (111 members)
  19. Fighting Leukemia Group (99 members)
  20. Cancer Support Group/Leukemia Support Group (97 members)
  21. Beat Leukemia! Group (89 members)
  22. Leukemia Support/Love Google Plus Community (73 members)
  23. Leukemia/Lymphoma Group (70 members)
  24. We help fight leukemia! Group (61 members)
  25. Leukemia and Lymphoma Awareness Club Group (59 members)
  26. Guardians of Leukemia Fighting Angels Google Plus Community (52 members)
  27. Leukaemia & Transplants UK Google Plus Community (23 members)
  28. Cancer & Leukemia Center Friends Group (9 members)

In-Person Support Groups In The United States

  1. Leukemia & Lymphoma Society Support Groups (Click link to see if there are any local meet-ups, fundraiser events, etc.)
  2. Cancer Support Communities

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, AMLCML


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)