was diagnosed with CLL just about a year ago but think it actually started in 2021.
that is when my labs started showing increases in my white blood cells.
i am 54 years old and in good physical health otherwise.
fortunately not showing any symptoms other than increasing white blood cells, which have been stable the last 3 blood tests.
right now the doc says this will most likely be something i die with not because of,
fingers crossed.
been browsing the site for a couple weeks and glad there is a site like this for information and support. will help where/if i can but right now mostly reading and learning
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pete-paz
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I was on W&W 12 years before I needed treatment. My hematologist said enjoy my life & see me every 4 months. Try to not think about it. It's hard the first few months but as long as u feel good...try to focus on fun ! 🙏💕
thanks, to be honest i really don't think about it much at all. i keep doing everything i have always done and the doc said that's what to do. fortunately don't need any treatment now, i workout 3-4x per week, play golf and basketball. try to eat healthy (always a tough battle) but overall doing ok
That is great!I eat whatever I want...my doc said moderation & no keto diet. I don't think my doc would think my diet is moderation. I love my red meat, carbs & fast food. So enjoy some favorites once in awhile!
my doc told me to keep the processed food and sugar low. he said that's what could be a problem. didn't say anything about meat/steak which is good because i eat a lot of animals...haha
Welcome to our caring com unity and happy you found us!
You stay positive and work on getting all your vaccines updated and you will do fine. I am going on 36 years and currently on my third line treatment and receive IVIG every 4 week and I couldn’t feel better…life is great!
All the very best to you on this journey and always remember you are not alone. We support each other!
pete-paz, you chose the best forum group in the World! 🌏🌎🌍 We are able to keep updated with the CLL news daily. Keep extra special care of your overall health, that's very important. I'm 75, diagnosed 4 years ago, 13q14 delete, in W&W. I've had covid twice, occasional small shingle outbreak and intestinal distress. All addressed by my family doctor and gastronalogist. I plan to live a lot more years and have fun! 😊Sandra
Did you get any of your FISH markers done yet? CLL/SLL is all about the genes that are not working, thus, you get bad "photo copies" of your B cells - they don't die they don't protect, then they block your bone marrow from making your blood cells.
So, knowing isn't the same as predicting but it can inform your course of treatment and help you protect your self now. There are a lot of things that can keep you in W&W instead of finally approaching a treatment. Everyone's CLL can be very different.
The more you have in your bio about your CLL the more people can answer future questions clearly. 🙂
thanks. i have had nothing but finger prick blood. only symptom i am showing is high WBC. i was going to the oncologist every 3 months but for the past year although it was high my WBC were stable so now he said we can go 6 months and then a year. i normally have my labs done 2x a year regardless so i can keep an eye on it and if it goes up i can make an appointment or if any other symptoms pop up i can make an appointment
Wait, you are saying you are in the US, you got a CLL diagnosis, and your tests are finger prick blood? You are not having small partially filled vials of blood drawn out of a vein by a phlebotomist?
that's it. they also did a CT scan to check for any other cancer and that was negative so right now they are just doing the finger prick 1 small vial run their tests and then the doc comes in and we discuss the results and how i am feeling. that is the extent of my visit
Spark_Plug is right about the inadequacy of your blood testing. Fingerprick blood testing is notoriously unreliable. My CLL specialists have monitored my CLL progression to, through and beyond treatment with a metabolic panel and a CBC/CBE/FBC panel - the acronym varies, but it's a standard test which reports on your red blood cell count and haemoglobin, platelets and counts of all your different white blood cell types (the 'differential'), plus various derived parameters that provide your specialist with a measure of your red blood cell and platelet health). The metabolic panel reports on blood metabolites to check that your body is working well, providing an insight into your liver and kidney health in particular.
The CLL Society site has lists of recommended CLL specialists cllsociety.org/newly-diagno... , and also provides a spreadsheet template for tracking trends in your blood counts. Your priority should be to find a recognised CLL specialist. A couple of studies have shown that on average, doing so adds a couple of years to your life expectancy. For a disconcertingly high proportion of those with CLL, not seeing a CLL specialist has resulted in inappropriate treatments, being treated too early, etc. General oncologists specialise in solid tumours not the rarer blood cancers. You need to at least see an haematologist-oncologist, ideally one that sees plenty of CLL patients and keeps across the fast changing recommendations for better patient management and can get you enrolled in clinical trials for even better treatments than those currently approved.
How did you get a CLL diagnosis? I am unsure if there is enough blood in a fingerprick to get an adequate sample for flow cytometry. Plus, in the US, it's also usual to run a FISH. My understanding is that the difference between CLL and some other cancers are the results from FISH and flow cytometry.
You don't get a CLL diagnosis based solely on elevated lymphocyte count. And you need venipuncture samples to run the standard monitoring tests that are considered the "standard of care" in the US. Complete Blood Count with differential and Complete Metabolic Panel at a minimum (which require venipuncture), preferably interpreted by a hematologist-oncologist using a laboratory experienced in viewing/assessing blood cancer specimens.
IDK where in the US you are, but getting the baseline testing may call for some traveling. When I was diagnosed, at that time there weren't dermatologists let alone cancer specialists in my rural town. Dialysis patients were seen by traveling clinics, the regional hospital had chemotherapy drugs sent into town with the specialty nurses for those patients. We all had to travel an hour & 1/2 drive to see the doctor at their office in another city. My town has dermatologists now a decade later, but still doesn't have hem-oncs.
A number of us see CLL specialists intermittently, with a local hem-onc doing the blood draws, and consult with the CLL doc if there are problems. My local hem-onc (the one 1 & 1/2 hours away) was OK doing a protocol a specialist recommended, but insisted on my seeing that doc intermittently.
The American Cancer Society does not mention finger prick blood testing being used in the diagnosis of CLL. From what I see in the US, the basic tests are venipuncture blood samples and at a minimum docs order CBC w/differential, CMP, and flow cytometry. Depending on those, other cytogenetic tests are ordered. Bone marrow biopsy is not necessary unless you are having confusing results & more data is needed IME.
The American Cancer Society doesn't mention the Complete Metabolic Panel, because it is a standard of care to order that venipuncture blood test whenever a serious disease is suspected/verified. In assessing "how ill" someone may be, checking various blood electrolytes & liver and kidney function is done for most all diseases.
Something is not right there, that's not your fault. But you've got to get a real blood draw and have it it tested CMP, CBC, and FISH. You're not relying on just a clinic or something I hope. You need a referral for a hematologist, preferably one who is experienced on blood oncology, at the least.
Someone is steering you down a blind alley. You might want to ask just how many CLL patients they've treated so far. I'm not trying to rain on your parade but you may not be getting the whole, or correct picture.
thanks to all for the input. i will seek out another oncologist/CLL specialist. when i first got this checked out they did do a full blood draw (i don't remember all the tests but i do have the print out and will check) but i cam going to an in network oncologist/cancer center located at the hospital campus of my health network not just some random clinic. i was referred there by my GP. i am also on testosterone replacement therapy so i get my full blood panel done 2 a year for that as well that my oncologist and my GP both get the results so i thought i had all my bases covered but based on all these replies i may have some more work to do here or more work i need my doctors to do
Ahhh, so you *did* have venipuncture testing, and have it intermittently. So likely you got a flow cytometry at a minimum, if not a FISH to boot, and are likely getting the metabolic panel and full CBC/differential done as part of the testosterone monitoring.
I think a number of us interpreted your "all I get are finger prink blood tests" literally, I did. A finger prick test is certainly fine for a quick look at an estimate of various blood cell types. Since your testosterone monitoring likely indicates you are healthy other than the high lymphocytes, I now understand why you are having intermittent finger prick tests. A number of stable early diagnosis CLL patients get only once or twice a year full blood tests. If these are done for your testosterone monitoring and sent on to the hem-onc, that's great.
actually because i have the 2x per year labs for my testosterone therapy is why i ended up going to the oncologist. my WBC started elevating in 2021 and then finally last year it got to the point where my GP said you need to get that checked out. my family health history is not great so i have always tried to stay healthy and monitor everything as best i can (or should i say as best as my insurance will allow...F#@$ing insurance companies are horrible crooks) luckily i am active, exercise regularly and try to watch my diet (everything in moderation) so i have avoided health issues my mom, dad and brother have delt with
Hi there Pete-Paz. You've got an amazing attitude. I was a similar age when first diagnosed six years ago. Still only increasing wbc and a little swelling in the neck. Sometimes I think 'come on leukemia - do something and stop keeping me in suspense!' But most of the time, I'm hardly aware of the blighter at all! You've got a positive attitude and great support. Good on you. And when the questions come, there's a mine of knowledge and experience here. Take care!
You are self advocating by educating yourself about this disease and possible treatments before you ever (may) need them - good for you!
We call that “front loading your knowledge” and in my opinion - that’s the best way to manage any anxiety this diagnosis creates. Sharing with others who have traveled this path gives a sense of informed community, as well.
CLLsociety.org is another great education and support network web site with info tabs for newly diagnosed folks, etc. and has medically vetted, current information on all things CLL/SLL.
We are all here for each other - to vent or share - everyone’s journey is unique but we have all been where you are now - so you came to the right place. Sorry you have to be here but WELCOME!
Hello Pete-Paz, Welcome to our community! I was also diagnosed at age 54, which was really surprising, and I floundered a bit as I tried to get up to speed on a type of cancer I had not even heard of. Fortunately, I stumbled on our group here and began to learn more and more pertinent information which really helped me cope.
Ten years have passed. My blood numbers have remained static for three years and I continue to live carefully, avoiding sick people and being vigilant in crowds.
Come to us any time, with any questions, comments and concerns you may have. You can count on us to help you. Carolyn
Hi Pete, I was diagnosed in August of 2017, hearing the word cancer I thought it was a death sentence. Having family members pass away from other form of cancers it was very frightening.
Here i am seven plus years and still on watch & wait and feeling fairly pretty good. I try to exercise 4 times a week and started playing pickle ball. Just keep enjoying your life and don’t stress it. 🙂
Yes my doctor said same when I was diagnosed. As it didnt sound serious I never told children, just there was something wrong with blood and I had to have it checked regularly. Fast forward 11 years and it was then I was told I needed to start treatment. It was only then that I told people what it was. If you have been diagnosed at an early stage carry on enjoying your life and be positive. Some days I am full of energy and on the odd day dont feel like doing much. Think I am lucky as I am getting on with life as normal as possible. Hope you can do same.
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