Back from the hematologist, counts slowly rising.

[jjaarons]

Just got back from my visit with the hematologist. I am 55 years old. I was initially diagnosed in March 2015. WBC 15.5 ALC 10.0. I have 13q and mutated. Now my blood work shows WBC 24.9 and ALC 19. I was hoping with my favorable genetic profile that the rise in lymphocyte count would be a little slower, but I guess that is not the case. I guess I am more in the "watch and worry" then "watch and wait". I have a CLL specialist, Dr. Pinilla from the Moffit Center in Tampa, who follows me along with my hematologist as well. All my other labs are OK. Hemaglobin, platelets, LDH, etc. Its hard to keep a positive outlook when you see the inevitable staring you in the face. I am not ready for treatment but having a hard time coming to grips with it. I read all of your posts every day and gain strength from what you all write. I am thankful to have found this site to see what everyone else is experiencing and any advise I can garnish from the posts. Every time I go to the hematologist I get upset knowing that things are getting worse. I just hope I can hold out on treatment for a while longer. Please keep writing.

[Newdawn Administrator]

Hi jjaarons, I honestly don't see this as being a massive increase to cause severe concern about treatment anytime soon, especially as you say your other labs results are good. Your ALC has only risen by 9 in nearly 18months! Mine went up higher in the last 6 months. Even the WBC hasn't massively increased in the scheme of things and they fluctuate anyway.

You have favourable prognostics, good medical oversight, seem to be well and whilst increases are always a concern, there's nothing to panic about with those figures. Relatively you're still on the 'nursery slopes' and may not require treatment for many many years, if ever!

You're doing better than than you imagine!

Newdawn

[jjaarons in reply to Newdawn]

Thanks for the words of encouragement. I hope you are right.

[neurodervish]

I'm pretty new here too and I am sure that more knowledgeable people will respond soon.

Please take a deep breath and hang in there. I keep reading posts of folks who are struggling with conditions much worse than mine, and my heart goes out to each and every person on this forum. A positive outlook (as impossible as it seems) will actually help reduce stress, and stress is no friend to the immune system. I keep telling myself that. =:0

As I understand it, you want to look at the rate that the ALC is rising (that is, over what amount of time). So in order to evaluate disease progression, more dots on the line are needed. You need to be concerned if the ALC number is doubling over a 2-month period.

There are other things to watch for: drenching night sweats, enlarged spleen and/or lymph nodes, platelets below 100 etc.

Here's a video on when to initiate treatment. I found it helpful.

youtube.com/watch?v=cHRZXG7...(Not working as expected?)

[jjaarons in reply to neurodervish]

Thanks for the video

[Cllcanada Top Poster CURE Hero in reply to jjaarons]

Your absolute lymphocyte count (ALC) is going to bounce around a lot, when it crosses an arbitrary boundary of 30K the specialist will track you more closely.

They then start watching for the absolute lymphocyte count (ALC) to double in roughly 6 months as an indicator of CLL progression... and other factors are brought in like CTsan, comorbidilites, B symptoms, Q of L and so forth...

But the journey from 30K can also be long... mine was about 12 years... to firstline treatment...

~chris

[jjaarons in reply to Cllcanada]

That's quite a long time. Thanks

[Bubnojay]

Hi jjaarons

Try to deep breathe, relax and just live as you always have. Not easy we all know but certainly little reason to panic.

If you are finding it hard to cope and are really stressed, it may help to have a counselling session, it's really helpful to talk to someone who can help.

Best wishes

Bubnjay1

[jjaarons in reply to Bubnojay]

Maybe I need to talk to someone. Wish there was a CLL group in my area. I will ask

[Newdawn Administrator in reply to jjaarons]

Ask if there is a specialist haematology nurse attached to your unit jjaarons. I think you do need to talk this over with someone to give you greater perspective. Don't waste the good years waiting for treatment because on your presentation at the moment, you really ARE doing well. Those figures are not the only indicator and people on here have gone into hundreds of thousands without needing immediate treatment. A 3 point change in your ALC every 6 months isn't a galloping presentation. Many would envy it but I do understand that you'd rather it wasn't happening at all.

Hope you can get the assistance you need.

Newdawn

[sandybeaches]

I can certainly understand your anxiety about your diagnosis - I was in your shoes about a year and half ago, with a Q13 and mutated diagnosis, but with a lymphocyte count of about 65,000. I was beside myself, as I was only 60, and in otherwise very good health, just starting to feel fatigued, which sent me to the doctor. Having finished a long Jungian therapy journey, I decided to go back to see my analyst to help deal with the diagnosis and overwhelming anxiety. So I would urge you to talk to someone who can assist with your anxiety, as suggested by several others on this forum. Also, educate yourself about this disease as much as you can - Dr Sharma's blog gave me wonderful information and is easy to understand. Also, listen to the various u-tube presentations from CLL experts. And get a bit neurotic about keeping your hands clean, home surfaces sanitized, staying away from sick people, careful about foods you eat - if in doubt, throw it out. Use sunscreen during 10 to 4 to limit sun exposure as we are susceptible to skin cancers. Check with your doctor if they advise you to take Vitamin D3. And you will find that once the shock eases, and you get a perspective on this disease, your anxiety will lessen. Now is the time to get yourself as healthy as possible - eat well, workout within your limits, have enriching activities/hobbies. I wish you a very long watch and wait time, and may you never need treatment for this disease.

Sandybeaches

[jjaarons in reply to sandybeaches]

All good advice. Thanks

[Hidden]

I added a head shrinker after diagnoses. My wife and I learned 20 years ago you must must must get at least some of the frustration, anger, whatever negative emotions you particular have OUT of your home. Personally I didn't really want one...I was kind of a dick to her the first two appointments....but as painful as it is to admit..bitching at someone educated in being bitched at...well it helps... alot