CLL WITH NO TREATMENT

[Akansha09]

My mom has been diagnosed with slight CLL , she's also been a heart and diabetic patient from past many years now. When the reports came in doc said there is no need for any treatment as of now and asked us to come back if she has high fever or dropped hemoglobin, Iam worried for her TLC which is increasing (21k-25k within a week) please help

[Newdawn Administrator]

Hi Akansha and I’m sorry to hear you’re worried about your mom’s situation. My first question would be what is your mom’s ALC (absolute lymphocyte count) presently and what kind of doctor is she seeing? Don’t concern yourself with percentages incidentally, it needs to be the absolute which you’ve described as total.

You mention your mom as having ‘slight CLL’ which suggests it was a fairly indolent or low presentation initially with perhaps no other worrying blood levels (just speculation on my part there) but an increase of 21-25k in her ALC) in a week requires further investigation and perhaps a more skilled response. At this level her ALC would soon double in months and this is a clear indicator that the condition is becoming more aggressive. If it’s just a one off increase however and doesn’t continue, it may be due to an infection but even that needs attention particularly with a heart condition and diabetes.

Based on this limited information, I really does sound like your mom needs to consult a haematologist skilled in CLL.

Best wishes,

Newdawn

[AussieNeil Partner Administrator]

Hi Akansha

I read your reply differently than Newdawn and assumed you meant Absolute Lymphocyte Count (ALC) when you used the acronym TLC for presumably Total Lymphocyte Count. I also assumed that you meant that your Mom's ALC (TLC) has increased from 21k to 25k over a week.

If I have interpreted your post correctly, I may be able to reassure you and your Mom by letting you both know that the ALC can jump around quite considerably even from day to day. What is important is the overall trend. For that reason, it is important to have tests done at the same time of day and at the same lab. Even then, CLL specialists don't pay much attention until the ALC climbs above 30k and only then do they look at the doubling rate. If it doubles in under 6 months, they will watch more closely and in particular for other symptoms that show the CLL is becoming aggressive and treatment needed. Some of our members are still not in need of treatment with ALCs of over 200k!

I hope my interpretation is right, but even if Newdawn's interpretation is correct and your Mom's ALC is much higher, it's the overall trend over months that is important.

Neil

[Newdawn Administrator in reply to AussieNeil]

I actually interpreted this in exactly the same way Neil and realised Akansha had used TLC (total lymphocyte count) instead of ALC. I only mentioned the percentages in case she was tempted to interpret them in this way.

It’s difficult with limited information and as I commented, a one off rise of 21-25k in her ALC wouldn’t necessarily be as significant as a continuous rise. If her level had risen by that amount in a week, it would seem reasonable to assume that the ALC is now probably over 30. However, what still concerns me from Akansha’s response is advice that an increasing TLC (ALC) isn’t significant until it reaches 100k. Obviously the level of the ALC isn’t as important as how quickly it got there and there seems to be little concern here about progression time or doubling rates. A random and arbitrary level obviously isn’t useful but how quickly it’s reached is pretty critical.

I may have misinterpreted time scales because there don’t appear to be any but I’d still urge greater monitoring because no patterns have been established yet. There is no mention of a follow up appointment, instead waiting for fever or dropped haemoglobin.

Perhaps this is the specialist you are referring to Akansha and your mom’s GP/primary doctor is monitoring in the meantime? I certainly hope so.

Obviously there is no mention of country here so it could be that there are different monitoring protocols in place.

Regards,

Newdawn

[Akansha09]

Thank you so much admin for ur reply ,I did get inform doc about her growing tlc rate but the doc said it's not of a concern till it reaches 100k, also no treatment or medication required till her hemoglobin drops or she gets fever for more than 5 days for a unknown reason . I did meet oncologist haematologist , asking about her survival rate he said it could go on till 10years too but then depends . Just if u could put some light , I plan to go for second opinion next month

[Newdawn Administrator in reply to Akansha09]

Yes please ask for a second opinion Akansha. I sense from your post that you’re not convinced your mother is receiving the best treatment and you need more information than you’re presently receiving.

Best wishes,

Newdawn

[Akansha09 in reply to Newdawn]

Thanks correct ! Iam really not convinced by the doc , or there is a saying half knowledge is devils place ,being in other city than my mom lives makes me even more worried ! After having a chat with u and Neil makes me calm down a bit and the decision of going and having second opinion has become even more stronger.

[AussieNeil Partner Administrator]

I'm pleased to hear that your Mom is not being considered for treatment now, but am very glad that you are seeking a second opinion after reading "the doc said it's not of a concern till it reaches 100k". Oncologists (who deal primarily with solid tumours) may not be across the latest information on how to treat CLL and may treat it as just another Non Hodgkin's Lymphoma. A couple of studies have shown that being managed by a specialist who sees lots of CLL patients can increase life expectancy by several years. That's entirely understandable when you consider how much has changed in the last 5 years with treatment options.

If you share where your Mom lives, other members may be able to recommend CLL specialists near you. (First edit your post so that it is readable only by our community - not anyone on the Internet by selecting the 'v' and choosing 'Edit' and changing the setting "Who can read my post?" Otherwise I can point you to a couple of listings of CLL specialists for consideration.

While you are waiting for that second opinion, these posts will provide background on the treatment considerations for someone with CLL:

The 100k myth (hence my concern at your Mom's specialist's mention of 100k)

healthunlocked.com/cllsuppo...

How high can you go?

healthunlocked.com/cllsuppo...

When will I need treatment? Is Watch and Wait still the best option with newer treatments?

healthunlocked.com/cllsuppo...

When do white cell counts trigger treatment?

healthunlocked.com/cllsuppo...

Neil

[Akansha09 in reply to AussieNeil]

Thanks Neil for the links they are really helpful

[Akansha09]

Thanks neil! I fee much better talking to u both. We are from india and yes Iam in other state than where my mother lives ! The worry from far off eats u up! Hoping we are going in right direction.