Anyone out there with a very high ALC and not needing treatment.

[helenolton]

I just came back from the Dr. and my ALC is 63.5 getting near treatment. Just wondering if anyone has higher numbers than this and not needing treatment.

Thanks,

Helen

[AussieNeil Partner Administrator]

No, no, no, Helen! If your ALC is the only reason your doctor has given to you for nearing the need for treatment, RUN to another specialist. Read the following to understand why I say this:

The 100k myth

healthunlocked.com/cllsuppo...

How high can you go?

healthunlocked.com/cllsuppo...

When do white cell counts trigger treatment?

healthunlocked.com/cllsuppo...

Enjoy a long period of Watch and Wait; you may never need treatment!

Neil

[helenolton in reply to AussieNeil]

Thank you for that great information.

[AAli]

Hi Helen,

My AlC touched 228 and now is 184 but my doctor not advised any treatment. As Neil said ALC alone could not be a justification to start treatment.

Best wishes and stay blessed

[helenolton in reply to AAli]

Thank you.... I feel so much better seeing people with high ALC and not needing treatment.

[Graham2222]

I started treatment at 252. The trigger was a very rapid rate of increase over a short period - quadrupling in 3 months - and some other B symptoms.

[helenolton in reply to Graham2222]

Wow .... It is really great to get this information.

[bkoffman CLL CURE Hero]

Helen,

Every good doctor should know that you treat the patient, not the lab test. Unlike CML, counts can climb to very high levels in CLL without any increased risk of stroke or clots.

I have known folks with counts over 700,000 who did not need therapy.

Stay strong.

We are all in this together

Brian Koffman

Volunteer Medical Director

cllsociety.org

[helenolton in reply to bkoffman]

Thank you,

[Bubnojay]

Hi Helen

It occurs to me to ask, how are you feeling? If you are feeling ok except for some tiredness and maybe a broken thermostat then I would not put myself through treatment yet.

At least not before seeking a second opinion.

Good luck

Bubnjay1

[helenolton]

Thank you ....I will get a second opinion.

[joed1rt]

My ALC was around 55 on my last appointment and treatment is not even being considered. Still on 6 month checkups. Doc said they don't see me needing treatment anytime soon. Get a second opinion for sure.

[PaulaS Volunteer]

My ALC was approaching 300 when I started treatment. And it was my large spleen that meant treatment was necessary, rather than the blood counts. (Spleen was pressing on the stomach, stopping me eating properly).

Everyone's different though. Sometimes people get very enlarged lymph nodes that press on various other organs in the body, which can cause problems and necessitate starting treatment, regardless of their ALC.

Best wishes,

Paula

[Cllcanada Top Poster CURE Hero]

There is a case to be made where counts apply...in pretreatment...

Absolute lymphocyte count (ALC) is considered in pretreatment assessment... if your lymphocytre count is well over 30K and it doubles in a period of 6 months, then a treatment assessment may be done, looking primarily at B symptoms, your physical vigor, and perhaps a prudent CTscan would be ordered to see internal node involvement...

But on their own counts should not be the sole reason for treatment...

~chris

[helenolton]

My platletes are 119 were 89 and RBC 3.6 and my spleen is mildly enlarged. Is Dr Byrd the best CLL dr. for a second opinion. Thanks everyone for all your valuable information.

Helen

[AussieNeil Partner Administrator in reply to helenolton]

If you can see Dr Byrd, look no further. Platelets consistently under 100 and dropping or Haemoglobin under 10 (more accurate than a RBC) are reasons for starting treatment.

Neil

[helenolton in reply to AussieNeil]

Thanks Neil

[ThreeWs in reply to helenolton]

You could not do better than Dr. John Byrd even though there are other highly competent CLL specialists. The James Cancer Hospital is now the third largest cancer hospital in the US having just opened in Jan. 2015. Byrd and colleagues work with the most advanced CLL drugs. John's knowledge of drugs and CLL biology saved me from a potentially deadly therapy recommendation of a heme/onc and bone marrow transplant specialist in NY.

WWW

[alexmcg48]

I was told at the outset my count could go up to 150 or so & I still might not need treatment. Treatment depended on how I was in general & whether I was getting or showing any associated symptoms.

[ThreeWs]

Hi Helen,

ALC (Absolute Lymphocyte Count) at 63.5 k is not actually very high. Remember that CLL cancer cells in the peripheral blood as measured by ALC are largely cells that are worn out from reproduction signaling activities while they were in the germinating centers of the lymphnodes and bone marrow. They migrate out into the blood for a vacation and to reinvigorate before returning to the lymph node tissue breeding compartments. These peripheral blood ALC cells are not where the action is and is why some patients have been able to remain treatment free with counts over one million.

I had an ALC count of >300k but it was the massive nodes impeding breathing and the anemia from the 91% bone marrow infiltration that drove me into treatment, not the ALC count.

WWW

[helenolton in reply to ThreeWs]

Thank you,

[Ezjacobs]

Helen,

My WBC count last week was around 75K and I am still watching and waiting. So far I feel good. I may need treatment with a steroid and Rituxin because of my Auto Immune Hemolytic anemia (CLL related) which has been keeping my red blood cell count in the 10.5 range. If it goes below 10 I will need treatment for it. I think they base need for treatment for the CLL on the rapidity of the doubling of the numbers and symptomatology. I have heard of people with a lot higher numbers than mine still in W and W. We shall see. Elaine

[helenolton in reply to Ezjacobs]

Elaine,

I asked the Dr. what drugs I would be taking and they were Rituxin, Bendamshine Phoshate and Decednor. I may misspelled the names of the drugs because I cannot read my Dr. writing. Sounds like we might be taking the same treatment in the future.

Thanks,

[helenolton]

Thank you Elaine

[Ezjacobs]

Helen,

Bendamustine is a chemotherapy. I am not familiar with Decednor. I would be treated only for my anemia at this point and not for my CLL. I suggest that before your go on you get a 2nd opinion from a CLL specialist! The treatment your doctor is proposing is serious business.

[helenolton in reply to Ezjacobs]

Thank you so much for that information. I keep telling the Dr. I cannot take any medicines. Every drug I have taken in my life I have been admitted to the hospital except for Antibiotics. He makes it soud like these drugs will be no problem for me that scares me ,becaus after reading all these posts there are so many side effects.

[emmiekay]

I can't tell from my lab results which is my ALC. It says Lymphs-96.1 and Lymph#-136.58. Not sure what the difference is in these two.

[AussieNeil Partner Administrator in reply to emmiekay]

Lymph# is your ALC. Ignore the 96.1 result as that would be the percentage of white blood cells which are lymphocytes - a useless figure if you have leukaemia.

Neil