I'm new to this community Am from India My ALC count is 37500 and it came across during a routine check. Is it too high?

[shallovercome]

My cancer consultant is not ready to start any treatment or investigate further. Prefers a wait and watch approach. My pulse rate is 95 and I am a bit worried about it. No fever till now.

[AussieNeil Administrator]

Welcome Shallovercome,

Your consultant is quite correct not to be concerned about your ALC, because with CLL, it's how fast the ALC doubles which is important, rather than the absolute count.

This post explains the triggers for starting treatment: healthunlocked.com/cllsuppo...

Your high pulse could be due to what is called "white coat syndrome", or in other words, due to nervousness around your doctor. How is your pulse and blood pressure when you are relaxed?

Have a look through our pinned post section for more background information on how to live well with CLL:

healthunlocked.com/cllsuppo...

Neil

[shallovercome in reply to AussieNeil]

Thank you for your reply. My pulse rate continues to hover around 95 pm. I forgot to mention that since yesterday night I'm having a small painful lump around my armpit of

[shallovercome in reply to shallovercome]

Worried if I could be heading to ALL. Im 61 years old

[AussieNeil Administrator in reply to shallovercome]

I had assumed that you were diagnosed with CLL, given you came to this site with a high ALC and were placed on watch and wait. The median age for a CLL diagnosis is 71. Do you have a CLL diagnosis? Do you know your other blood counts? (Platelets and haemoglobin are the most important.)

If your specialist thought you had ALL, you would be started on treatment quickly. CLL doesn't change to ALL.

Neil

[lankisterguy Volunteer]

Hi shallovercome,

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We have several members living in India and some past discussions about finding CLL expert doctors and treatments in India. Here are some links and excerpts you may find useful.

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healthunlocked.com/cllsuppo...

VikPa healthunlocked.com/user/VikPa

Hello Rifka,

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I am based in India currently and getting the consultation for my mother's CLL from the following doctors.

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Dr. Dharma Choudhary, BL Kapoor hospital, Pusa road, New Delhi,

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Dr. Ashok Vaid, Medanta, Gurgaon ( very close to T3 international airport Delhi)

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Dr. Tarun sood, Medanta, Gurgaon.

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All three are quite good in their work and have a good reputation. I can share the contact details (private message) of their assistants who can help you book an appointment with them. God bless.

healthunlocked.com/user/VikPa

++++++++++++++

healthunlocked.com/cllsuppo......

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having a CLL expert is the best first step we can recommend. And Watch & Wait is the usual method even from the experts. Please see this pinned post: healthunlocked.com/cllsuppo...

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We have several other members from India, and I hope you may be able to get some suggestions from them. You can use these links to see their profile and send a private "Message" to them.

vinnet

healthunlocked.com/user/vinnet

venk_46

healthunlocked.com/user/ven...

ABHINAVGARG

healthunlocked.com/user/ABH...

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One of the important facts I learned, is that CLL causes problems with our immune system, so we often get infections from bacteria, viruses or fungus that is separate from our CLL. Finding a doctor that is willing to investigate beyond the obvious is a challenge. If you have a good General Practicioner they may be able to parse out a cause. Eventually it may requre a specialist that deals with unusual infectious diseases like HIV Aids or Multiple Sclerosis to separate out these causes from the CLL.

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Len

[shallovercome in reply to lankisterguy]

Thanks. How do I contact them.

[lankisterguy Volunteer in reply to shallovercome]

I provided links (click on the blue text above like healthunlocked.com/user/vinnet ) that will take you to each of their profiles. Then clickl the white "Message" box - upper right of their profile page - that will allow you to send a Private message to only that person.

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Len

[shallovercome in reply to lankisterguy]

Thank you

[country76]

My WBC was 30,000 when I was diagnosed with Cll after routine labwork.

Previous lab work 7 years prior indicated WBC was 12.5.

I was on watch and wait for 7 years before needing treatment. Everyone is different.

[AussieNeil Administrator in reply to country76]

You are absolutely correct about everyone being different with CLL; it's a very heterogeneous disease. However, I suspect you've used different lab reports for your WBC count mentions. While the USA in common with the rest of the world, uses metric measurements for blood cell counts, most US labs use a thousand times larger reference volume, so a WBC count of 30,000 from most US labs is the same as a WBC of 30 elsewhere. I'm pretty certain that your WBC changed from 12.5 to 30 or alternatively 12,500 to 30,000. Finally, it's the absolute lymphocyte count that should be monitored to most accurarely assess changes in the blood's CLL tumour burden, as the WBC count includes five types of white blood cell, all of which can independently rise and fall.

I really wish labs would agree to use just one international standard for all blood measurements. CLL is challenging enough to understand without further obfuscation! Some blood tests can be reported in one of three different unit choices, with the reference ranges overlapping, requiring anyone quoting such readings to also provide the reference range.

Neil

[country76 in reply to AussieNeil]

I am always trying to figure out when it actually started. I remember having occasional thigh cramps in the evening about 5 or 6 years prior to the 12.5 lab result. I was doing a lot of exercise at that time so my doctor said I needed to stretch more??? I probably had Cll at that time, low magnesium or sodium. I wish I knew then what I know now. Isn't that always the case. lol

[shallovercome in reply to country76]

Thank you so much. Useful insight.

[LeoPa]

How are your hemoglobin levels?If they are low a racing heart would make sense.

[shallovercome in reply to LeoPa]

My Hb count is 11.9 a bit on the lower side.

[LeoPa in reply to shallovercome]

check out buteyko breathing technique on YouTube. If it does not help it won't harm either. Worth a try.

[shallovercome]

Thanks, I will

[wizzard166]

I'm sure you will get a lot of replies from many people, some of whom will go into much more detail than I will. The count on total White cells and Lymphocytes and Neutrophils are important, but not the main factor from which the Specialist will determine if you stay Watch and Wait or go into treatment.

I'm two and a half years into W&W and my total White count is 36,500 with Lymphocytes being about 75% of the total count. All that tells them is that you likely have CLL. Since I've been following this site I've seen people report counts over 100,000 who are still in Watch and Wait. My pulse regularly during the day ranges from 80 to 110 and regularly is near 90.

The Specialist will look mainly at your Red Cell Count, Platelet Count, and whether or not you get too many infections. If the Red Cell Count gets too low, that can cause a problem with lack of Oxygen. Platelets getting too low can cause Internal Bleeding. Infections speak for itself. The White cells that increase over time don't die and are dysfunctional, so they take up space and push the Red Blood Cells and Platelets out of the blood stream. The illness overall decreases our Immune System, so frequent infections can become a serious problem. As long as the three things I've mentioned stay at a non problematic level, in general they keep you on Watch and Wait.

[shallovercome in reply to wizzard166]

Wonderful insight. Thank you so much

[shallovercome in reply to shallovercome]

Hi A further update, Since yesterday night Indian Standard Time 8 PM, i become febrile with a temperature of around 99 degree F. Also I have a small lump on my left armpit since yesterday. How serious it is? Should I visit my oncologist rightaway?

[shallovercome in reply to shallovercome]

The fever remits early morning.

[MsLockYourPosts Passed Volunteer in reply to shallovercome]

I would call your doctor for your own peace of mind. A lump and a low fever could indicate an infection somewhere in your system. Don't panic, but do get things checked out.

[shallovercome]

Thank you for your suggestion.