Anniversary Date

[Flipper5610]

Today I am celebrating my 3rd anniversary since being diagnosed with CLL. Although my WBC is climbing ever so slowly I have no other symptoms and continue to carry on with life just as I have pre-diagnosis!

[Newdawn Administrator]

Delighted to hear this Flipper. Long may it continue!

Newdawn

[Loves2walk]

Congratulations Flipper!!!!

Wishing you many many more healthy anniversaries!

[ygtgo]

That's what we like to hear ... climbing ever so slowly.

Better still ... no symptoms, now that's worth celebrating.

ygtgo

[Saska-Jul31]

Really pleased for you and also very encouraging for all of us other Watch and Waiters.

Ad multos annos!

[PattiM]

Hi Flipper,

I am 1 year official dx but have had for 2.5 when checking old blood work. I've seen others posting WBCs rising slowly. Mine are also and my doc does not like it. I have bloodwork done every 4 mos. began at 14, then 16, then 19, now 21. Absolute lymph of 18. So I can expect this constant rise until I have nodal and spleen involvement? If any others can share their experience, I would appreciate it. Feel fine, stage 0.

Thanks

Patti

[AussieNeil Administrator in reply to PattiM]

You are following the typical course with CLL, but have a long way to go before you get to the lymphocyte counts of some of our still untreated members, some of whom have counts of over 200. As to nodal and spleen involvement, I was diagnosed over 8 years at stage IV with bone marrow, spleen and nodal involvement and I'm still in watch and wait.

A CLL specialist treats the person, not the numbers. Doctors (GPs and even oncologists) can get very worried about climbing lymphocyte counts because that's of concern in other leukaemias, but it's rarely a problem in CLL. It's falling red blood cell and platelet counts that can be triggers for treatment. Read these posts for some perspective:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Neil

[PattiM in reply to AussieNeil]

Thanks Neil. My hemo/oncologist says the same thing, I treat the patient, not the numbers. But nevertheless says she was hopeful the numbers would stabilize. She also says -live your life and don't worry. The first is easy, I appreciate every day. Worrying is another thing.....

Thanks again.

Patti

[ygtgo in reply to PattiM]

Hi Patti

I was diagnosed with CLL aged 47 in 2006, and have not as yet needed treatment although my blood counts have been gradually increasing ever since.

I can't help you with the actual numbers of the increase, as I don't know them.

I have other health issues that affect my day to day living that need my constant attention, so I made an agreement with my Consultant that she will tell me when it starts to get to the stage where I will need treatment.

So, it's my Consultant who does the W&W, whilst me and my GP, I juggle the symptoms of each illness, all of them 'flippin' chronic ...

ygtgo

[CoBubby]

I just had my 2 yr anniversary since diagnosed. My WBC was slow in increasing, except has really increased over the last 6 months. My lymph nodes are enlarged, especially my spleen. I was positive that I would need to start treatment due to spleen pain, but that's not the case. They look at a lot of things, not just number or isolated issue(s).

I had genetic testing done, and they were able to guess about when I might need treatment. I had a lower percentage of needing treatment at 2 years and more likely at 4 years. I am happy to continue W & W, and hope for continued progress with treatment plans.

Good luck. I have heard many call this Wait & Worry, not Wait & Watch. Depending on how the lymph nodes feel, I can be one or the other!!

[slyford]

Congratulations - my husband is on his 2nd anniversary.