Might have CLL: Does it come on fast?

My journey started in 2017 with a psoriasis diagnosis. In summer of 2022 my white blood count spiralled & after testing my condition was upgraded to at Cell Lymphoma. Further testing further defined it as Sezary Syndrome. Been in treatment for 9 mo. Unfortunately haven’t found the right one but starting my fourth regime next week

Hopefully your biopsy will better define your condition & you have the expertise & resources close that can get you into treatment.

Stay Strong, as Nelson Mandela said, “Everything seems impossible until it’s done.”

I have found it helpful to just take it one step at a time. The biopsy is one step. I have had six or seven bone marrow biopsies. It is not a walk in the park, but it is doable even for an ordinary person like me.

For me, the procedure took about 15 minutes. The nurse, nurse practitioner, or doctor can tell you what to expect. They will use lots of Lidocaine. After the procedure I just had some soreness, and then I took it easy for a while afterwards.

Sometimes I think that having an observing mind, and some psychological distance helps me get through difficult things. I tell myself: "For a writer, all experience is material."

By the way, I think it is safe to say that the biopsy will give your doctor much more information with which to make a diagnosis.

I just had one and they did find I have a marker that coupled with a genetic test mutation, down the road will give me leukemia. I was put on the donor registry the same day i approved the results. All because my white cells and platelets hovered low. My regular NP is on pregnancy leave, so I kept calling until i got an appointment gal who got me an appointment. Nearly 3 weeks. My new Hematology doctor said it was good my doctor sent me.
I had just decided to connect with my medical oncologist who moved to another hospital. My new one never made an effort to even great me. Her NP was the one i had regularly seen for 2 years, as it took me the 3 weeks. My NP would have referred me,

I will just add that I use a term that helps me. The 3 A's. Awareness/Acceptance/Action. I learned the 27th, I am still at awareness.

I was diagnosed with cll over a year ago and have not had a biopsy. I am not sure why I have not needed the invasive procedure but am glad for that. I have had nothing more invasive than needle sticks. Maybe it was because I had had five blood tests over 6 months, all showing an elevated but stable wbc, before being referred to a hematologist. My lymphocytes are also fairly stable. The Flow cytometry, FISH, and Chromosome blood tests determined the nature of my cll. I guess she regards this as all that is needed and a biopsy would be overkill. Or maybe if I had a different type or my wbc and lymphocyte levels were higher and not stable, a biopsy would be indicated. As it is, I appreciate her conservative approach as I do not want any tests that are not necessary,

I have CLL as does my mom. CLL is a chronic illness that doesn't typically come up fast. My mom was diagnosed in 2019 and has a more aggressive type than I do. She just finished up treatment. I was diagnosed in 2021 and the doctors tell me I may never need treatment as my tests show the most mild type of the disease. I have never had a biopsy and as far as I know, one is not required for diagnosis. At Mayo where our doctors are, a biopsy is necessary to confirm everything prior to treatment. My mom had one about a month before she started treatment. My doc says unless they feel something more is going on or that I may be progressing to treatment, I won't need a biopsy.

@mm7477, I wanted to check in to see how you are doing. Have you received a confirmed diagnosis of CLL in the meantime? What are next steps for you?

I would really like to hear from people living with CLL for a long time now their experiences with the diagnosis. Thank you in advance!

Please define long time.

I was diagnosed with Stage 3 CLL in 2014 and treated with chemotherapy in 2014-2015.
I am now 70 years of age.
My lab work re: CLL has been within normal limits since treatment ended. Some chemotherapy's side effects remain.
CLL is the gift that keeps giving. I do struggle with fatigue on a regular basis.
I still ski, sail, swim and ride my bicycle. Developing arthritis as I have, I have slowed down considerably.
Oddly, I have trouble finding food that tastes good to me. Chemo byproduct.
I should be dead by now.
I’m not. That pleases me.

I had normal blood work over the summer of 2022, then I started losing weight and feeling tired in sept and my pcp did blood work and it showed possible CLL. I had an appt with hematology in oct and they did the cyto and fish, that showed CLL. I have had tons of blood work and pet scans over the last year. They did a lymph node biopsy this August . They have not done a bone marrow one, I think because at this point there is no need to be that invasive. Hope that helps.

Good point I did not define "long" I think your experience is what I was hoping to hear. Probably long would be over 5 years. I am grateful to hear about your journey and you seem to have a hopeful mindset and really have worked to continue to do things that meaningful to you!