Monitoring the basics

[Ageon]

Hi I have been looking at the various posts on this forum over the last few months and am learning a lot about my CLL from all of you (big thanks to everyone). This is my first post.

I was diagnosed with CLL 11q in January 2019 at the age of 68 years. This was quite a shock to me as the diagnosis came about as a result of a routine health check. I had no symptoms (i.e. no fatigue etc.). After diagnosis, I was advised to stop swimming due to the risk of infection (major blow to me as I have been a regular swimmer for several years and this was a major part of my fitness regime).

Due to doubling lymphocytic time (over a 6 month period) it was decided to start treatment. This was Obinutuzumab + Chlorambucil for 6 months. Unfortunately, the treatment was aborted after 5 months due to the Covid-19 pandemic. I am about to have my first telephone consultation with my consultant 4 months after the treatment finished to review everything so I am quite apprehensive about this as I just don't know what my blood results will show.

During this 4 month period I have been logging all my blood results that were notified to me from the start of my diagnosis and I am unsure of what the key metrics are that I should be monitoring (seems very confusing to me).

Regularly see - WBC, Neutrophils, Platelets, Lymphocytes and HB.

Occasionally see - LDH, LFT's, CRP and eGFR.

Rarely see - Haemaglobin, Monocytes, Potasium, ALT, Billiruben, ALP and HbAlc.

Can anyone advise what I should monitoring as I am setting up an Excel spreadsheet so that I have all the relevant information recorded in one place and can see any fluctuations/trends over any period? This will allow me to query any abnormalities with my consultant.

I appreciate anyone's advise on this.

[AussieNeil Partner Administrator]

Check out the templates available per the Determining your risk of infection section in this post

healthunlocked.com/cllsuppo...

The most important blood tests now that your treatment has probably finished, are your haemoglobin, platelets and lymphocytes. Many of the other results you mentioned would have been useful to track during treatment.

Neil

[Ageon in reply to AussieNeil]

Thanks Neil. I will focus on those blood test results from now on and will update my spreadsheet accordingly. Thank you also for the link to some more informative reading for me. It's a cold wet day here in the UK so a great time for reading.

[lankisterguy Volunteer]

I agree with AussieNeil 's comprehensive lists, and would emphatically recommend the Excel sheet for tracking and plotting charts for your blood test results.

healthunlocked.com/cllsuppo...

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Len

[Ageon in reply to lankisterguy]

Thanks Len. I'm having a problem opening the .xls version. It tells me there is a conflict with a 'built in name', (Print_Area) and requires a new name. Doesn't like whatever I put in.

Any ideas what I can do?

[lankisterguy Volunteer in reply to Ageon]

Hi Ageon,

I have forwarded your request to AussieNeil to ask for his help. He is much better at computer software than I am.

I have a much older version that I got from Chaya Venkat of CLLTopics/Updates fame and I did not fix many of the issues that Neil resolved.

There is also the simpler version from the CLL Society- cllsociety.org/toolbox/keep...

(the link in Neils posting doesn't work for that one either).

Len

[lankisterguy Volunteer in reply to lankisterguy]

Hi Ageon & AussieNeil ,

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Neil said

Hi Len,

The websites now only accept https, not http addresses. Hopefully they should work now. I'm also hopeful that we can get slightly updated versions with UK and US reference ranges for the more important CBE results hosted on the new CLL Support UK website next month.

Thanks for your help and support,

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Here are fresh links- and they seem to work OK:

cllforum.com/view_topic.php...

cllsociety.org/toolbox/keep...

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When I downloaded the latest Excel sheet BloodTestDataPlotsV1.2.2C.xls in .xls and then tried to save it in .xlsx I got the similar error message that Ageon got about VBA print errors but it told me to close Excel and then reopen the spread sheet - now it seems OK.

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BTW & FYI- we have saved the Excel sheet to the CLLForum.com because HealthUnlocked does not have a feature to save and download functioning MSOffice documents- only photo / jpeg images. And that is why Neil mentioned the NON HealthUnlocked website of our parent organization the CLL Support UK.

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Len

[GMa27]

I don't understand why you can't swim. During W&W, chemo and remission I continued to go in pools, intracoastal and ocean waters. My hematologist and experts have never told me not to. I even had a port during treatment. I did not sit in my hot tub during chemo.

Suggest you get exact reason why not. If it's due to covid reason, then maybe you can find a safe place to swim. If it isn't, then get second opinion regarding something that means a lot to you. 💕

[Ageon in reply to GMa27]

Thanks for your response. I will ask again as I now have a different CLL consultant and he may have a different view. I was also told not to eat Organic food as this was considered an unnecessary risk. I'll re-check this too!

[GMa27 in reply to Ageon]

I have never been given any advice on foods from a hematologist or specialist except for during chemo- no raw fish.

[Big_Dee in reply to GMa27]

Hello GMa27

I do not swim in public pools for same reason I don't attend public venues without protection from colds, flu and etc. Blessings.

[TheFrog]

Ageon,

I've had SLL since 1994 and have always swum apart from when I have been neutropenic or during treatment.

Jacques

[Ageon]

Thanks Jacques. I will follow up on this advise as I haven't swam in a pool for 18 months now and I definitely miss it. Obviously I know with Covid-19 there are lots of restrictions anyway so it probably is better to avoid the public swimming pools for a while longer.