Last week I requested with the secretary of my haematologist my blood results in print and she just told me that she has posted them out to me so should be here in a day or so. This is my first time I will see them in front of me. My bad. It won't all make much sense to me, all those numbers I presume but I hope some wonderful people in this forum might be happy to help me out.🙏😇☺️
Blood results (last 2 years) : Last week I... - CLL Support
Blood results (last 2 years)
84 Replies
•
They don’t always make sense to me always either, but I see you are in the UK so they should have H for high and L for low. Anything else should be ok. But there will be people here who can explain any you are worried about when you get a print out.
Colette
• in reply tomrsjsmith
See you know already more than I do. ☺️ It's the levels, high or low, I have no idea as what is dangerous and so forth.
mrsjsmith• in reply to
But I have been looking since 2007 !Some people have them all on their computer in a file but I am old fashioned and like pieces of paper !
Good luck.
Colette
JigFettlerVolunteer
Post them up for us when they arrive.
Just obscure any identification first.
Ideally mob phone photo - attach.
Jig
NewdawnAdministrator
There’s usually an asterisk next to any out of range on mine and the normal range is printed next to them.If you have any difficulties, just post for advice. Make sure you report absolute numbers not percentages and the important levels to watch are your ALC (absolute lymphocyte count), platelets, Hb (haemoglobin and red blood count) and neutrophils. Trends rather than snapshots are the key thing although at first it’s hard not to become spooked with any rise in numbers.
Please lock your post to this community if you post any personal lab results. Do you know how to do that? Just means changing the tick in the box before you make a post (not a reply) so the content remains private to this community and not the entire internet 😉 The little padlock next to your post shows it’s been done.
Best wishes,
Newdawn
• in reply toNewdawn
Thank you very much Newdawn. Despite having CLL for quite a number of years, I am very naive when it comes to my condition.
• in reply toNewdawn
Ah locking a post - understood. ☺️👍
ND - That’s a great spreadsheet list to make of the 5 CBC categories to monitor. Are WBC a 6th category important also to monitor in a spreadsheet Newdawn? Reason I ask is I’m thinking of creating one in MS Excel.
Probably among this awesome group that’s been done “so why recreate the wheel?”. If someone has... can they pass it along?, save me time and if their are other CBC lab test categories recommended to monitor? Thanks.
I think AussieNeil is aware of a spreadsheet to plot progress. I’ve copied him into this.
Newdawn
Hi Pin,This post covers a few existing spreadheet templates. There's little purpose in monitoring your WBC, because it's the individual WBC count types that you really want to monitor, (primarily the lmphocyte and neutrophils counts, not the total sum. healthunlocked.com/cllsuppo...
Neil
Wow that was a fast reply, Thanks AN!
So being an early Eagle in this CLL thing, my CLL specialist stated to me in my second visit when my WBC actually went down from 15 to 11 (and I blurted out I’m getting cured!) he said .... no you’ll have CLL until a cure does come around and that WBC is basically a minor indicator not the main ones like you stated. He said you may need treatment when WBC counts go from 2 digits to 3 digits range or counts triple ir more say from one visit to another. But again he schooled me on the items they look at closely platelets, Hb, ALC were some if the top markers.
Lots to learn ... I better re-read C-Jeff’s Dummies articles.
Look forward to studying others charts n graphs (are there auto-graphs?).. I love graphs, a visual animal I am.
Ahhh ... great ! Look forward to Awesome AussieNeil reply.
You probably read my later much longer chart n graphs idea concept reply (I gotta work on conciseness!) ... that I sent to 🔥 💀 . I was guessing that chart n graph idea “wheel was already made” by someone with likely way better spreadsheet skills than mine.
Thanks for the headsup ND!
When I get my lab results my eyes are typically drawn to my wbc, my hemoglobin and my platelets. The results usually give a normal range to compare. With cll, our wbc is often high while our platelets and hemoglobin are low.
That rarely tells the whole story though because with cll we look more at trends. here is an example.
If our platelets fall below 100, our doctors might consider discussing treatment options with us. Let us say that over the past year platelets went from 250 to 100. That would be a sudden drop and evidence that your cll is very active.
But suppose your platelets are 100, but have been hovering around 100 for several years. That would be stable and less concerning. So two people could both show platelets of 100 on their labs, but one have stable disease and one more aggressive.
Cll is a cancer where our lymphocytes, a type of white blood cell, divides more rapidly than they should and don't die a normal death. Your wbc (white blood cell count) counts all your white blood cell types, including lymphocytes. A high wbc with cll usually means way too many lymphocytyes. But once again, one number in time does not tell the whole story. Your wbc could be very high but if its stable from the last test it might not be as concerning.
Platelets are small blood cells that help our blood clot. Hemoglobin is a protein in our red blood cells that carry oxygen to our organs. With cll, our cancerous lymphocytes can crowd out platelets and hemoglobin (red blood cells), causing them to drop.
There are other lab results that are important to our doctors, but wbc, hemoglobin and platelets are among the results most often discussed. Some people look at lymphocytes and their percentage of white blood cells (wbc), but that can be confusing at first.
You will get more meaningful feedback on here if you are able to post your lab results over the last two years, as you write, as opposed to just the most recent one.
• in reply tocajunjeff
This is a fantastic reply from you and after what I have learned from Newdawn previously, I know more about CLL than what I was fed in past years and it has become so much clearer. Thank you for that. 👍
cajunjeff• in reply to
You are quite welcome. If you want to learn more about cll topics in simpler terms here are some articles I have written. Its best to read them in sequence as one might build on the next:
healthunlocked.com/cllsuppo...
• in reply tocajunjeff
Fantastic 👏👌 bookmarked 👍
cajunjeff• in reply to
Okay good luck. If the articles do not help understand cll better, they might help with any insomnia problems. 🥱😴😎
• in reply tocajunjeff
🇺🇸 sense of humour. I like it. 👍😁
Pin57• in reply to
C-Jeff n Newdawn are awesome help Fireskull as you have read their insightful replies. As a newbie Cller n to this UL website I zero in on their chats for info, support, and in C-Jeff’s case much laughter n his Dummies articles are A+ suggest read em all. You’ll get many other great replies too (way to many great handles to rattle off but they are many within this community).
From this post n reading ND n C-Jeff’s replies, it has inspired me to create a CBC chart in MS Excel to monitor 6 blood count categories. Oh crap .. read a post and I created work for myself?!
I really hope for the best for you with your CLL journey Fireskull. As one poster summed up his battle with CLL so well he simply said .... “carry-on”! A positive stroke of genius with 2 words.
Now... If only I could be so concise in my replies?! 😅 Ahh ... something else to work on in my CLL journey. Lol.
i look at wbc first-cause it's at the top-lol. then alc number-then neutrophils.
• in reply toSmith123456
What do neutrophils tell us?
Smith123456• in reply to
generally having adequate neutrophils means better infection fighters. However in my case if my wbc seems high but myl alc is good it;s because of neutrophils.. i go to 2 different doctors. so april 10 my alc was 1.8 and my wbc was 7.2. 10 days lat
er i saw may specialist and my wbc was 11.7 but my alc was still 1.8. the difference was my bouncing neutrophils. that has happened several times in the past and my doctors don't really know why.
• in reply toSmith123456
This is all a bit complicated.
FireSkull, it’s a good avatar name because you’ll ‘fry your skull’ trying to learn everything at once! This booklet from Leukaemia Care tells you everything you need to know about CLL (and some you’d rather not know). Don’t let anything spook you, it’s a coverall and some of the content will never apply to you. As well as cajunjeff ‘s excellent descriptions, it’s worth reading through. Feel free to ask questions (don’t worry we don’t set homework! 😉).
media.leukaemiacare.org.uk/...
Newdawn
• in reply toNewdawn
Oh thank you very much. You figured my name out. Nice one 👏 😉 that's how I feel about all my ailments. There is so much to take in and in my case many symptoms overlap which of course makes it difficult to pinpoint treatment. I can sometimes understand why some can get anxious or come across as hypochondriacs thinking the worst with all the literature available.
cajunjeff• in reply to
White blood cells help fight infections in different ways. Lymphocytes are the type of white blood cells that make antibodies and fight viruses and other infections like covid.
Neutrophils are another type of white blood cell that fights infections in another way than lymphocytes. Neutrophils usually fight bacteria.
Cll is a cancer of our lymphocytes, but it can affect our neutrophils too by crowding them out. Another concern with neutrophils is that certain treatments we do to treat our Cll do not distinguish among all white blood cells as much as we might like and reduce our neutrophils too.
Some people who get their lab results focus on neutrophils because they have low neutrophils which can make them prone to infections. Our doctors have different strategies to help if we become neutropenic, meaning our neutrophils get so low that we get too many infections.
Cll is a disease of our immune system. One goal of treatment is to put our Cll in remission. Another goal is to spare or restore our immune systems that can be damaged both by Cll and some treatments to stop our Cll.
• in reply tocajunjeff
It seems the 🇺🇸 has a different approach in treating CLL patients. I hear a lot about people mentioning an oversized spleen. How strong is the likelihood of that and is there anything in the numbers to counteract that?
cajunjeff• in reply to
Cll cells (rapidly dividing lymphocytes) can accumulate in our blood, lymph nodes and organs, most commonly the spleen. Your labs will show just those in your blood. If the spleen swells fromCll cells it can be felt by pressing beneath the rib cage.
Some types of cll are more likely to stay in the bloodstream, others more in our nodes and spleen.
I had high wbc counts in my blood and a swollen spleen. I am on an oral medication now that has chased all the cll cells from my spleen and my blood. Cll does not change most anything I do these days. It might stay under control indefinitely or I might need another type of treatment one day, I don’t worry about it that much now, not anything like I used to anyway.
• in reply tocajunjeff
Thank you for that. You can explain it very well. Here in the UK, at least for me, they don't seem to take CLL too seriously but I am happy to stand corrected from other people's experience. I had recently two blood tests taken and when my haematologist phoned me for a review he told me that he has insufficient data from my blood but he is not worried since he only focuses on my wbc, which sounded to me unsatisfactory. Obviously, since phone consultations seem to be the future now, checking for once spleen is up to us patients. From what you tell me, I gather you have medication which keeps CLL symptoms at bay? Here we are mostly on watch and wait and enjoy nightsweats, fatigue...
cajunjeff• in reply to
The criteria when to treat cll is the same in the US as it is the UK. The treatment options are a bit different for some, generally speaking more options in the US. Many people stay in watch and wait their whole lives.
Your labs might be very stable which could explain why your doctor seems disinterested. He might only discuss your wbc with you because your other labs are normal or near normal.
Many doctors, some even good ones, are not going to get into the details of lab results unless necessary or unless a patient as a specific question.
• in reply tocajunjeff
That certainly makes sense and would explain it. Perhaps my CLL is progressing slowly as yet and my frequent fatigue has other reasons. Also, I frequently clumsily cut myself (my RA) and my blood is taking a very long time to clot and for the wound to heal.
It could be caused by your RA but be aware that a swollen spleen can cause reduction in your platelet and/or red blood count (haemoglobin). Your specialist should be watching both those counts. Platelets are responsible for regulating adequate clotting. Anaemia causes fatigue.
‘When the spleen enlarges, it traps and stores an excessive number of red blood cells, causing anemia. Sometimes, the spleen also destroys white blood cells and/or platelets causing a low white blood cell count (leukopenia) and a low platelet count (thrombocytopenia).
A normal spleen is about 11cm. Mine was enlarged to about 22cm before I started treatment but fortunately it wasn’t impairing my platelet and RBC massively. Your doctor should be examining (palpating) the area on the left side under your ribs if a swollen spleen is suspected. It tends to cause a stitch like feeling if it is and it’s harder to eat large meals.
It would be interesting to see your blood results.
Newdawn
• in reply toNewdawn
That's very helpful. I don't know when I will ever see a doctor again face to face. I have seen my rheumatologist once since March 2020, no gp or haematologist. It is all a bit confusing. I have been suffering fatigue for quite some time but the source is unknown. Then last October I started to become anaemic. My haematologist thought it's the RA, my Rheumatologist thought it's my IBS and after six immediate B12 injections nobody knows the cause.
I appreciate the problem FS. Each discipline blames the issues on a condition they’re not responsible for and don’t usually understand fully. However, if you have pernicious anaemia, fatigue is pretty much a guaranteed issue (my mum had it).Hopefully you’ll see your specialists in person soon. I’ve just seen my haematologist for the first time in over a year.
Newdawn
SofiaDeo• in reply to
CLL can cause fatigue. Severe fatigue & an inability to concentrate were the main symptoms I had at diagnosis. I suddenly couldn't make it through a work day, and started making simple mistakes. Even though my RBC parameters, neutrophils, and platelets were still "normal" with lymphocytes being the main cause of my 50,000 WBC. These symptoms, along with knowing my WBC was only slightly elevated during a tooth infection 4 months previously, had me looking for treatment sooner rather than later. (As well as knowing I had a difficult to treat form of the disease, according to my genetics). And knowing that blood percentage of lymphocytes correlates roughly with bone marrow infiltration of lymphocytes, I seek treatment whenever my blood lymphocyte percentage creeps over 90%, regardless of other symptoms. This is the ONLY reason I look at "percentages". My opinion is, I want to start treatment before the CLL overwhelms my bone marrow to the point where it can't make RBC's, platelets, or other cells needed. But I am in the US and have a medical background, so I can choose doctors who listen to me & don't ignore my wishes.
Please ask your doctors for a full iron panel workup, including haptoglobin levels. Your anemia may be due to the CLL. Your spleen may be enlarged. You probably should push to be seen In Person by someone. Do you have a CLL specialist yet?
I have my 6 monthly blood test and my GP don’t bother calling me with the results!! I once called up , spoke with receptionist and they said oh dr says everything is ok , I replied so my CLL has gone , I’m cured to which he replied I will get a Dr to call you !! Still waiting!!
• in reply toElaine7061
Nice one. I'm not the only one then who gets the full commitment of their gp. 🙄
That's not good enough, Elaine. Ask them for a copy of your blood results and then you can keep a check on what's happening. It is your blood, after all!Some GPs (and some consultants)still live in the past, where they think they should monitor how much to tell you. I think with this disease we need to push a bit.
Alternatively your GP may not understand a lot about CLL as it’s not that common, and will not understand that it can feel a bit like Damocles' sword.
Chris
I really have to push to get my results, either the printer not working or it just gets forgotten. Have done better during lockdown because she tells me whilst we are on the phone. I too don't understand but it is useful to see if numbers are going up or down.
• in reply tokitchengardener2
Writing it down over the phone would be quite a task I would imagine and mistakes can be made. I have arthritis in my hands so that won't be much good to me anyway. I hope my results arrive in the post today or tomorrow. It'll be all Spanish to me but at least I can compare the numbers what I have and what it ought to be.
mrsjsmith• in reply to
Some surgeries offer the Patient Access app and that may give all your blood results. I am fairly incompetent with technology but I use mine for repeat prescriptions.
Yes I use mine for repeat prescriptions, didn’t realise I could ask for my blood results to be added thanks will check that out x
• in reply toElaine7061
My blood results from the past two years just arrived in the post at my request. All I need to do now is a chart. 😳
Pin57• in reply to
🔥 💀 On my CLL journey to-do list... I’m planning to create a CBC blood count lab results MS Excel chart n graphs with 6 categories:
WBC, ALC, neutrophils, platelets, Hb, and red blood counts. Can add more if needed.
From that chart, create 6 automatically generated graphs to show trends of what heck is going on with CBC data?
Maybe add in “normal” ranges horizontal “data point lines” within the graphs so when crap-hits-the-fan and data points falls below “normal” line range, then maybe it’s a good time to have a chat with CLL specialist, if that person hasn’t already chatted with you.
Seeing that this CLL thing is a journey, I think I’ll have plenty of time to screw around with this spreadsheet idea tweaking it, entering data, yada yada.
My wife thinks I’m crazy (she’s always right you know) creating spreadsheets analysis on everything from car maintenance items/costs to simply rating anything big we are thinking of buying, like a tv, frig, etc.... then when we go to buy something, she simply ignores my spreadsheet ratings data n picks out the item that suits her fancy! And her choices ... are always great! 🧐. Go figure (“wife is right”... always).
Anyways, I guess I like creating spreadsheets. Should have been a baseball statistician!
When I’m done with this spreadsheet n charts, I’ll share it on this website in case anyone has an interest in that.
I’m the same. Used to be a Project Manager, and could not manage without spreadsheets, but what I manage with them these days has changed radically. Now, the biggest and most complex helps me to stay on top of my crafting spend...
cllsociety.org/ Has a chart ready made. You can find the link at the bottom of the home page.
• in reply toPin57
Cool! Spreadsheet is the way to go but can you explain this all to me so I understand it. 😜😁 P. S. Always listen to your wife. 👍
Pin57• in reply to
Search within this website “dummies” n you’ll find a treasure chest of past excellent posts by cajunjeff that explain CLL jargon in simple to read wording plus he throws in great humor too! .
Plus others have posted very good summaries of the same jargon. In the search box type in what you want to understand more about ... like “ALC” for example or “platelets”, etc and you’ll get many posts on those searchable CLL jargon topics. Good stuff to know.
HU (this website HealthUnlocked) is a powerful well-developed chat website, far better than LLS’s (at least in my humble opinion) though that website does have very helpful CLL resources/docs n articles to read.
Good luck Fireskull!
Hang with us in this website, it’s full of great people, support, n info. Lot to learn, n don’t be overwhelmed by it all, take it in slowly Cus your gonna have lots of time to do so.
I have this problem, too. I asked them to write on my notes that I want a copy, but nothing happens. I’m a nuisance to them but I do chase them.
Think Inhave to do the same !!
I know it sounds daft , but I’m relieved I’m not the only one with a GP that needs a kick up the bum thank you .. I’m sure my GP thinks I’m swinging the lead !!
Sadly GP’s and surgeries seem to vary greatly. I have at last found a great one but sadly on maternity leave ! Looking forward to her returning in June. The one I spoke to last week seemed to have forgotten about my high BP and that was one of the reasons for the follow up call.You should be able to see results. I used to but then it vanished, but that might have been my incompetence.
Colette
I’m going to check with GP , good luck getting your BP sorted x
• in reply tomrsjsmith
It was my first request with the haematologist and there was no problem posting them.
Like you, I find the intricacies of the condition to be daunting to understand. But there are some brilliant people in our community who are so helpful. What you have been told elsewhere by Jeff, Dawn and others in watching for trends is very helpful. I have entered all my blood results in a simple Xcel spreadsheet which automatically turns them into a graph, so that I can see clearly any trends or sudden changes. I believe that the data seen by your (and my) NHS haematologist also displays trends.
• in reply toskytortoise
Is it a good feeling on here knowing that nobody is alone with their predicament and and everybody is so kind and helpful. I am so primitive that I don't even have a computer which would be helpful of course. I will have to do without a visual graph unfortunately but at least I have the data and trends. 😊
🌌 🐢 you the man!... charts n graphs, stoking me up. Can you share file? Maybe make a copy n cut out your data n PII.
I'll see what I can do. Have you got Excel ?
Yes
Can you advise (or an administrator) on how I attach the file. I've not done it before.
I have not attached anything yet either. I’m sure Newdawn C-Jeff, AussieNeil , Len or others would know how.
Cant attach files bud, only pics. We would have to exchange email addresses. Freddie
cllsociety.org/ you can find the link to a readymade document to enter your lab results at the bottom of the home page.
They should be easy to read ,those out of range will be starred,then you can Google anything you are worried about,or ask your oncologist or Dr.This month I have none out of range I put this down to diet.
The important ones to look out for is Linfocitos.
I have been diognised since 2001 with CLL watch and wait .
I try to be careful what I eat and do some exercise,I am 83 this year.
Good luck to you take care
Re Sensara’s reply I would say to you, FireSkull, DO NOT use Google for anything you are worried about concerning you numbers but come to this HU/Cll group - as you already know, someone here is likely to know the answers. Best wishes for your next move in the CLL journey
I have kept the results of all my blood tests in an Xcel sheet for many years. For each new set of results I enter the date and where the test was done at the top of a column, then each individual result beside the name of the item tested. In this way there is an easy comparison of results so you (and your doctor) can see if that particular item is improving or not. It keeps me up to date and the doctors like it as they don't have to dig through past tests to see a trend.Dan
Nice one Dan. Do you convert your line of data into a graph? Freddie
cllsociety.org/ Check out their home page. At the bottom of the page you can find a link to record all your lab results. It will also convert those results into a graph. I have been doing this since 2016.
• in reply toMay1270
I just tried that but I can't open the template on my phone.
May1270• in reply to
It Hass to be done on a real computer. There is a Lymphoma app that allows you to keep your results on your phone.
Thanks for that May, I will have a look. Freddie
cllsociety.org/ If you scroll down to the bottom of the home page you will find a link where you can easily record your labs and print out the document. I have been doing this for every lab since I was diagnosed in 2016. Having all the numbers together is a great way to see any changes that are occurring quickly or over time.
Wow, a rolls royce to my morris minor. But basically the same. Thanks May. Freddie
No, not quite that sophisticated, but the first column has the range the figures should be within, and if they are not in that range I highlight them in red. It forces me to get familiar with them as well.
Can anyone help with a question around bloods please.. other half (SLL) treated 2013 and been in remission since caught COVID (Feb 2021) really badly, hospitalised and ended up with COVID pneumonia and lung infection getting over COVID now but had a gland swell .. turns out partoid gland obstruction now cleared up but he went to the GP who as soon as saw history did blood test.. lymphocytes were 8 so he referred back to haematology unit and we are now back on this rollercoaster as he’s been today and full bloods done (not back yet) but a slight swelling to node under arm so Dr wants to do full body CT. blood results done in hospital in Feb recorded lymphocytes at 3.1.. could his rise be due to the partoid obstruction and would that also affect lymph node? Thanks
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