Chronic lymphocytic leukemia

Hi I'm new here and have been researching. This is my story.

Late oct. 2016 during a routine mammogram an enlarged lymphnode was seen under my left arm. After an ultra sound and a needle biopsy I was diagnosed with low grade

B cell lymphoma. Oncologist wanted an excisional biopsy so had a lymphnode removed from the left side of my neck.

The final diagnosis is CLL ..and at this point I am on watch and wait.

My husband calls it watch and worry. Any thoughts on this from anyone would be appreciated. I didn't have any symptoms and I feel good, I'm 72.

16 Replies

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  • Long may you feel well Joanne, welcome to the community.

    Sure you will find it helpful, any questions feel free to ask, lots of helpful and knowledgeable people here.

    Best wishes

    Bubnjay1

  • Thank you. I'm encouraged by what I have read here.

    I'm 72 and so far I have outlived my mother and grandmother.

    And I intend to keep going and going.

    Thanks

  • Hi Grandmajoanie,

    Firstly, welcome to the forum, even if it's not what any of us really want to be a part of if given the choice!

    Sorry to hear of your diagnosis but please be assured that CLL at the watch & wait stage is a good place to be. Some people remain on watch & wait with no symptoms for years and many never need treatment. If your haematologist has placed you on watch & wait then he must be happy that you don’t need treatment. You will probably have been told to have regular check-ups every x months or so. These check-up’s normally consist of a blood test to monitor your cell counts relating to CLL and a physical examination to check for swollen lymph nodes, both relating to your CLL's progression.

    Good luck and let’s hope you can continue on watch and wait with no symptoms for a long time to come.

    Kevin – Essex, UK

  • Thank you so much. I'm positive and hopeful,but the watch and wait is hard for my husband.

  • Hi Grandmajoanie,

    There is some reading material and a few videos on the CLLSA website that deal with newly diagnosed CLL patients, one from a patient himself. Perhaps seeing his story and reading about CLL, particularly watch & wait may help your husband better understand and cope with your diagnosis. Click on the link below to see the material:

    cllsupport.org.uk/cll-sll/s...

    I do hope he can share your positive outlook soon.

    Kevin - Essex, UK

  • Hi i am totally with you. Last year I had a tooth extracted but when the node under my chin grew bulky I had a checkup and was diagnosed with C.L.L. I am also on watch and wait and turn 72 in Feb. I am also diabetic and suffer from Maculopathy which bothers me more than the cancer. Eyes are precious and all my energy goes in protecting mine.

  • Hi Grandmajoanie, CLL is very worrying when you are first diagnosed, but if you are going to get Leukaemia then this is the one to have. I have been on Watch and Worry for 9 years now and am leading a perfectly normal life. The doctors have been great in looking after me and I am about to start treatment next month as my symptoms have increased of late. But such has been the care and time of my consultants over the years that I am completely at ease with the situation. Hope you have a very long W&W, but do remember you are more likely to die with CLL than of it. Just stay away from chest infections and you will be fine. The people on this site are brilliant and free with their support and information and I cannot thank them enough.

  • Hi grandmajoanie

    I was diagnosed with CLL in a similar way to you in Jan 2011. I so clearly remember the feelings of shock and fear that my husband and I felt at the time. That continued for three months. Then, one day I was doing some gardening and I suddenly realised that nothing bad had happened to me since diagnosis and that there were so many others who would happily swap places with me if they could. I also realised that I could get knocked down by a bus at any time before my CLL got me! Bizarrely, that was a comforting thought!! This helped us both put aside the fear and anxiety and allowed us to get on with everyday life. I still get a tad anxious just before my check ups, but otherwise I just try to stay as fit and healthy as possible and, very importantly for me , last year I decided to take a short rest if I feel tired, instead of pushing myself to get everything done. I believe this has helped me to avoid going down with some of the nasty chest infections that I suffered during previous years.

    I am now a full six years from diagnosis, with no treatment apart from a very occasional course of antibiotics, and I am enjoying life!

    I do hope that this helps.

    HappyCat

  • Greetings grandmajoanie

    Welcome to the community!

    Like you - a mammogram sourced out my CLL diagnosis. Felt very vulnerable, as finding enlarged lymph nodes near breast tissue launches one rather quickly into a series of interventions ( ultra sounds, biopsies). Final diagnosis- CLL (currently watching and waiting). In terms of watching and waiting- it's a difficult concept/action plan for me- as I tend to live a "pro-active lifestyle". In stating this.....I'm adjusting. To note, my "pro-activity" is now directed to seeking information (regarding CLL)- trying to be an informed CLL survivor!

    A few thoughts...F

  • Thanks for your thoughts. Seems we are all in this together somehow.

  • Your story sounds so much like mine. I was diagnosed in February 2016. Found the exact same way. I had a bone marrow biopsy to confirm mine instead of lymph node removal. I was 57 at the time. I went to 2 different oncologist in the Phoenix area before deciding on taking my health case to Salt Lake City. I am on watch and wait. But at SLC I have found the support and education I was not getting from the doctors in Phoenix. I pray for strengh for you to endure the burden of watch and wait. Watch and wait is also a blessing.....it gives us time to research. Take care.

  • Interesting - Phoenix to Salt Lake City. Who is your doctor there? I would have thought Los Angeles or San Diego would be the choice, if not the Mayo in Phoenix. It's always good to know of good doctors around the country.

  • I am seeing Dr. Stephens. My insurance restricted who I could see.

  • thank you for your reply. Yes it hard to watch and wait. J

  • Take a look at Dr. Jeff Sharman's blog post about watch and wait (or watch and freak out) - cll-nhl.com Search is on the left. Hopefully it will help your husband to understand W&W a little bit. It is a hard concept to wrap you head around when first diagnosed.

    cllsociety.org has a good list of CLL specific links and a lot of good, current information.

  • Watch & Wait Article by Dr. Sharman - Pinned post on the right (or at the bottom if you use a tablet/smartphone):

    healthunlocked.com/cllsuppo...

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