I apologize up-front to ask the subject question as this topic previously had great responses. Then trying to find those references buried in posts was ... well a challenge I admit I failed at.
So taking the easier route thought I’d ask question in a post. New in the CLL “adventure” and so I’m gonna start to track my Complete Blood Count lab results myself if the 5 or 6 categories that seem to matter most in the now frequent CLL checkups. I schedule them along with my car’s lube-oil-filter changes... what a tandem schedule eh? Gotta insert some kind of humor along the way of this CLL journey.
Anyways, appreciate in advance from the fine CLL membership resources n all the folks with subject knowledge. Thank you!
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Looks like to get the CBC spreadsheet file I needed to sign up on the “CLL Forum”. So I did. Awaiting to hear back on the cut n paste link etc to get on.
The updated file sounds awesome per your post 6 years ago. Looking forward to getting/downloading and using it.
Ahh downloaded the other “simpler” CBC data spreadsheet (dated 2020, version 3) and it looks really easy to use. Might just go with that file. Has graphs built in to!
I see one can monitor 14 CBC data categories, seems overkill? HU posts say the following 6 are the key ones to track, is that right?:
Neutrophils, ALC, platelets, Hb, red blood count, and WBC.
You might also check your patient portal if you have access to your records online.
My Cll doctor is at md anderson and all my lab results can be searched and presented as an historical graph over any time period I search.
My primary doctor is associated with my local hospital and any labs I have done there are also available on my patient portal and can be viewed for any one date or viewed as a graph from my first labs to my last.
Doctors for Cll are usually more interested with trends over time with our labs, than for any one day, and they will generally look more to the graphs.
I know I can pull up the data results from my CBCI (Colorado Blood Cancer Institute) patient portal but there are no graphs ?
I’ll call to try to find the cool “graph geek” that you n I know has those files somewhere and can pry them away. Yes, the docs need those graph tools to easily check on our trends!
I would be surprised if your CLL doctor does not have a timeline graph version of blood tests. It also makes it easier for doctor to track your progress at a glance. Blessings.
I have both graph options and spreadsheet options on my patient portals that allow a good look at historical trends. I wonder if there is some option on your portal to do that, our little hospital is usually behind others in tech options like that. You might ask a nurse or someone who knows how the portal works. Maybe there just is no option, charting it out manually works too.
I’ll check on that to see if there are graph options ... but...
per this websites posts/replies I took the fine advice to be sure I develop a good communication link with my CLL doc’s RN. I’m writing her emails with questions etc (n lots per this sites information!) ... all the time, and ... she’s super in replying with answers and other help. A key team player in this CLL journey I can tell already.
She’d be my email (or call) go-to in finding about the CBC graphs.
While it takes a bit of knowledge about spreadsheet software to do this, I constructed a customized version of a blank master that I think I got from the old CLTopics website (thanks Chaya, et al). While oncologist usually focus on short(er) term trends, I like to know how I'm doing over the long haul. I use these for monitoring both of my cancers as well as my general health. Mine records labs starting in 2003.
Most useful is being able to see the table and graphs of key component on the same page - as in the old adage that a picture is worth a thousand words. It provides and instantaneous way to see trends and to compare them across the various components. Quite a bit of the work was due to my needing to re-learn much about how to setup and modify spreadsheets, but the benefits have been well worth it.
I have similar composites for CMP, immunoglobulins, lipids, and PSA/T. I print the appropriate spreadsheet composites and along with an appointment-specific written "Patient Update" and take them to each doctor appointment. I make sure to have two copies of each, so that we can review them together. (For any critical appointment issues, it might even be a good idea to forward them ahead of time.)The attached image is what a recent CBC printout looks like.
Whatever you end up with, it is a sign that you recognize the importance of staying informed of changes in your disease state - hopefully it's getting better. Good Luck with the spreadsheet.
Be Safe / Stay Well - Captain K9
PS - It is also a good idea to create/keep a backup copy of all spreadsheets before editing them.
Both of the spreadsheets I referenced in my post were derived from Chaya Venkat's original. I actually produced my own from scratch. I'm impressed you have results going back 18 years!
I agree with you that tracking your results and presenting plots to your doctors "is a sign that you recognize the importance of staying informed of changes in your disease state". Your doctors can also quickly see whether what you have raised is worthy of concern, being more likely to take the time for consideration and then either explain why your concern is unwarranted or initiate further actions. Doctors must often get discouraged when their medical advice is not acted on. I'm sure they find it refreshing to work with a patient actively engaged in improving their health.
Thanks for the comment, Neil. We all need to recognize early on that we are our own best advocates. I'm coming up on mid-year reviews with my oncologists for both cancers and will be spending considerable time reading over research papers, blog posts, and other information to prepare my Patient Updates for those appointments.
Here is a link to an article Dr. Koffman asked me to prepare forThe CLL Society Tribune based on a reply to a post here at this forum. It briefly describes the general format I use to introduce myself to a new doctor and update my current ones. This method of documentation started with my my initial CLL oncologist appointment back in 2006. I go to all appointments solo and was advised to write down topics and questions ahead of time, as it is very easy to get distracted and find when you leave the building that one of the main topics you wanted to discuss got lost along the way.
My graphs from 2011 (courtesy Excel) looked like the high Himalayas, followed by by a deep ravine as Ibrutinb kicked in in 2016. And now, up and down foothills. I sometimes think of setting them to a background of music. 😊
My Columns are as follows on two lines left to right. Since it won't show on one line completely I'm putting the continuation of the first and second lines under each other; however, on my spreadsheet it goes all the way on one line to the right ending with the headings RBC and then PLATELETS. So the total first line ends with the heading Platelets.
The second line only adds the names of the types of White Cells, and then the third line onward starts with the Date of each test. Then below the second line titles in the line with the date are the actual numbers from the readings. At the very end I have percent increase numbers which I simply calculate and enter. I just realized that I should separate the lines with a space line after six months and enter the percentage increases on those lines too.
DATE WHITE CELLS ABSOLUTE ABSOLUTE ABSOLUTE
LYMPHOCYTES NEUTROPHILS MONOCYTES
ABSOLUTE RBC PLATELETS
The purpose of the chart is to keep track of the increase in each type of white cell, even though the only very significant ones are total white count, lymphocytes and neutrophils.
I'm also keeping track of the drop in RBC and Platelets.
As most of us who have been on Watch and Wait for a few years or more know, your Specialist is going to make the decision on when to start treatment based on percentage increase by time in Lymphocyte growth, decrease in Red Blood Cells, or decrease in Platelets, and also frequency of infections. Then you can throw in serious Night Sweats, and loss of weight. I'm not tracking my sweats; although, I've noticed they go in cycles and strength. I'm not tracking weight either, but I did just Post today a question for everyone on what just happened with me in a two week period. I think my chart is a good one for our purposes.
My sweats are on and off, and the severity of them vary a lot too. I know I sweat a bit every night, but not heavy, and then there are times where I sweat three times as much as the usual night for a number of nights in a row. My guess is that the growth of the illness goes in erratic spurts, and the sweats increase when the spurts happen.
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A Possible LDL Cholesterol and CLL connection
