I was recently diagnosed with CLL and was told I have had it for 2 years. This, 6 months after I was told I had the precursor.....anyway, my oncologist has written orders for blood tests every 4 weeks though I only see him every 6 monhts. Is this normal? to have such frequent blood tests? I am in the wait and watch period of all this and hope I stay here a long time though I have two clones/strains in my blood. I was told this only happens to 20% of those diagnosed with CLL. I had a radical nephrectomy almost 10 years ago and a radical hysterectomy 9 years ago, both to cancer, different kinds. Now this Cll...how lucky can one person be to have 3 cancers in a lifetime? I hope I survive this one as well as the others....
Thank you for listening....i just wasnt ready for the monthly blood tests. It is bad enough I will be visiting oncology the rest of my life....
but today is a good day, full of energy and feeling very healthy
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DianeSH
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Do you know what your recent blood counts were? The doctor might want to monitor you monthly with the blood tests to check on whether the counts are increasing. If getting the bloodwork done is not too difficult to do because of travel or financial concerns, I would not worry. I actually prefer getting my blood work done monthly as it gives me peace of mind to know what is going on. I do not see my hematologist monthly however.
You've had some excellent replies from Britam, lankisterguy ,81ue and others. The most important message is that you are in the early stages of CLL and you are being well monitored. You may eventually see your blood test frequency extend to every 3, 6 or even 12 months if your progression is slow enough, with perhaps annual oncology visits. I began my CLL journey with monthly blood tests after being diagnosed in stage 4 and managed to stretch my blood tests to every 3 months with 11 years in watch and wait.
The most important blood test count trends to monitor when you have CLL are your haemoglobin, (to see if you are becoming anaemic), your platelet count (to check your risk of bleeding), your neutrophil count (to monitor your infection risk) and lastly, your lymphocyte doubling time, once it passes the threshold of 30. Provided your doubling time is under 6 months and you don't have other concerning symptoms, your specialist should keep monitoring you. It's great that you have a hematologist-oncologist? that knows your past history well, but do bear in mind that CLL is not that common and he may not have the time to maintain his expertise in the fast changing CLL management and treatment environment. Someone in his position of authority should have no qualms with you seeing a CLL specialist who specifically concentrates on CLL and related blood cancers, if he can't dedicate the time to keeping across the latest CLL developments. Since you live in the USA, you can arrange one free video consultation with a CLL specialist through the CLL Society: cllsociety.wpengine.com/pro...
Another benefit available to you in the USA, which is not available most elsewhere, is that you can have a wide range of prognostic marker testing that will give you some indication of whether you'll fall into the approximately one third of us who never need treatment, though monitoring changes in your blood counts is the best way to judge how the stability of your particular clonal CLL strains.
Yes, my spleen was protruding a few centimetres below my rib cage and I had significant bone marrow involvement, causing severe neutropenia, plus low other counts.
The CLL stages are unlike tumor cancer stages. CLL stages 3 &4 have spleen involvement, stages 1 & 2 do not have significant spleen involvement. I for example never made it past stage 1 and required treatment because my CLL was very aggressive.
When I was diagnosed in Jan 2015 the Hematologist told me that I too probably had CLL for 2 plus years leading up to diagnosis. Also he ordered a blood test every 3 months. That's still happening, even though I only see him every 6 months.
At diagnosis my white cell blood count was 17k, since then and eventually on oral Chemo white blood cell count down to normal range.
The side affects I'm sure differ from one person to another. The side affects I suffered through were night sweats, (sometimes drenching night sweats) fatigue, bruising, and unintended weight loss. These side affects were more than likely a combination of the progression of the disease and the drug. However, within a few months after beginning the drug, the night sweats disappeared. The bruising hasn't stopped and given the time I've been taking the drug I don't expect it will stop. Something I just got used to.
Switching from MBL with blood tests every 6-12 months, to being told you now have CLL and need blood tests every month, can be a shock.
A high level comment is that most people with MBL rarely progress to full CLL, but about 1% become CLL each year. You apparently are in the 1% this year. CLL is very unpredictable and often reacts erratically. Testing every 4 weeks may be a way to get data to estimate how quickly your CLL is getting worse, and if no anomalies are detected, then your doctor may back down to every 2 or 3 months for tests.
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Most of us have had the experience of being told we had CLL or MBL for several years. That is OK, since MBL and CLL often raise White Blood Counts slowly, and there are many other possible causes that can raise WBC above normal, and most of them resolve or disappear on their own, without treatment. So the doctors are following the "Do No Harm" mantra and not causing stress or risk when more tests don't provide information that the doctor can use for treatment.
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Regarding 2nd cancers, we had a discussion yesterday that you might find useful:
I started at 6 week full appointments, but my initial diagnosis was stage 2 with some crazy markers...so, it's not unprecedented, but it would probably help to know what blood values you had in the last appointment and this one (and what your CD38 positivity was)...
They say CLL folks sometimes get secondary cancers. My hubby just had skin nodules burnt off and he has to have a colonoscopy every 2 years because of polyps. Easier said then done, you just have to be vigilant in your checkups. I know it may be hard but please know with the new immunotherapy treatments my hubby is doing so well. I have you in my prayers.
I'm so glad you found this community, the folks here share their knowledge, experiences and most of all hope. I was so frightened when my hubby first got sick, he was dying in the hospital and I couldn't even visit him due to COVID. I was so lost in what the Dr's were saying and this Godsent site- the Administrators and CLL community turned my fear into hope. They put the information in layman's terms. This Thursday we are going to see my husband Dr to find out if he's in remission! -- I'm so glad you are here too
Don't worry - your doctor will get the results from blood draws and is monitoring your condition. Adjustments in blood draws will be made depending on what's going on with your condition. I get copied on blood draws through online "My Chart". See if you can sign up to get your online blood test results.
Depending on the numbers and treatment status I've had blood test a couple times a day while in the hospital, weekly after ramp up of venclexta and getting on rituximab, every other week for a long time, then every month even when off the venclexta, and now I hope it's going to be every other month. My doctor gets the results and reviews it each time even though the appointments with doctor are not as frequent as the blood draws.
I received the results via my chart shortly after I got home from the tests! Then to try to make send it them. My bed went up and the the went down but are still in the normal range. I think I will do that video sit the cll specialist. Thank God for this group. I know my oncologist is trying to keep me calm but I did not get much out o f him about all this and I kind of feel laughed at for asking questions. But it is early in the game yet and if he is not upset I shouldn't be. He is the same oncologist that cared for me with the other two cancers and I thought he was great. He is the head of oncology and hematology and the hospital works with the cancer hospital in Rochester ny....
Hi Diane,I am the wife of a CLL patient (numerous treatments since diagnosis 22yrs ago , and still got the old bugger with me , love him!) and I just wanted to support the previous comment. You are SO LUCKY to have found this group. It is an amazing source of support and information..I am particularly fond of AussieNeil's post for their clarity and wealth of information.
I hope you stay well, you've beaten two other cancers, you are obviously a strong person who can live with this too. Best wishes being sent to you.
Hi, Diane, do you know what your special markers are for which they are closely monitoring your blood? And if I may ask, what was the "precursor" called? Never heard of a precursor to CLL. Thanks, and welcome to the watch and waiting room.
The precursor to CLL is Monoclonal B cell lymphocytosis, of which there are low count and high count categories. The low count category has a very low likelihood of progression to CLL, whereas the high count progresses at a rate of 1 to 2% per year. High count MBL has a "monoclonal CLL/SLL-phenotype B-cell count ≥0.5 x 10^9/L and total B-cell count less than 5 x 10^9/L with no other features diagnostic of CLL/SLL" Note that "All subtypes of MBL are clinically characterized by immune impairment with sub-optimal response to vaccinations and increased risk of infection." according to The 5th edition of the World Health Organization Classification of Haematolymphoid Tumours: Lymphoid Neoplasmsnature.com/articles/s41375-...
Thanks, Neil, I have never heard this before. I am assuming from the name it means lymph gland enlargement with monocytes--?. So low means few monocytes and high means a lot of monocytes? Wonder if my epstein barr reactivation (also called, of course, "mono")in the months before diagnosis was somewhat the equivalent.
Monoclonal means the same clone, that is identical, B cell is self explanatory and lymphocytosis means an elevated count of lymphocytes. With low count, there are approximately the same number of precancerous clones as healthy B cells, high count and healthy cells are becoming increasingly outnumbered.
Epstein Barr is a virus (EBV) which can cause "Mono". EBV can increase the risk for some cancers, but not apparently CLL. cdc.gov/epstein-barr/about-... Mono, is I think from an excess of monocytes, not lymphocytes.
I’m in my second round of treatment for CLL. I’m a little surprised that you have blood tests every month. Normally in watch and wait it 3 to 6 mos. Depending on your blood numbers, that may be determining frequency. I would ask your oncologist to explain.
Welcome to the group none really wants to join. Please consider "locking" your posts as explained here, I put in some pictures further down the discussion
With an "unlocked" post, it's not a private conversation, it's open to the entire Internet. Unlike Twitter or some social media sites, you can always go back and edit any of your posts or replies to people. I constantly am editing, I can't type anymore without making a lot of mistakes hahahaha.
Re: your question, I would guess that since you have a history of previous cancer, the doc will initially monitor you monthly to see how your particular variant is reacting. This seems reasonable to me. I was an oncology pharmacist, so have some insight as to how doctors moniotr cancer patients. Some of us get newly diagnosed, and our variant is a slow growing stable one, and about 1/3 of us never need to treat it. Others like me, grows very fast when it's not tamped down by a treatment, and needs treating sooner when it's active. So I am thinking if you seem to have one of the "stable" ones, at some point you will go to every 3 months, every 6 months, or even yearly. Your docs will review the test results, and if any trends look like you have a "more active" variant, you will be asked to come back sooner.
So it's not that they think you have something bad and need blood draws every month, it's more, at this point they want to verify how your particular one is acting. Unlike many other cancers, there's no hard-and-fast treatment recommendations that *should* be done urgently. I have multiple mutations (we don't think of them as different strains, the number of mutations is a description of our particular variant), was originally told I would likely die, and the "older data" had my combination of mutations (we call them "markers") not responding well to the few treatments available. I continually surprise my doctors with responding to the new treatments that have been developed. To maybe give you some perspective, I initially was thought to have an acute leukemia, I got so ill so fast. If your particular CLL was putting you in any danger, you would likely "feel something" was off, and your blood tests would also show it. So I think your docs are just watching you closely, to see *if* yours happens to be aggressive like mine is.
Since they think it's been in your bloodwork for a few years, and you went from MBL to CLL in 6 months, it may not be really aggressive. I went from "she has a tooth infection in summer" to lymphocyte count over 50,000 in December. Have you been under a lot of stress (physical as well as emotional) lately, have you had infections or vaccines? Things that stimulate our immune system, or stress us a lot, can make some of our CLL strains get a bit more active. If you are taking any "immune boosting" supplements, these may also affect our bloodwork.
Since you are in the US, you can get a free one time second opinion from the CLL Society non profit organization : cllsociety.org/ Since it's a one-time free offer, some of us like to wait before we need treatment to get a second opinion. There are local Zoom support groups you can join on there, to speak with others near you, to see which doctors they like, etc. The Leukemia and Lymphoma Society has resources and support lls.org/ as well as the American Cancer Society cancer.org/. All offer free education and other things.
I would also recommend if you start Google-ing CLL related things, look at the source as well as the date of anything. Seek reputable medical sites like the non-profits, educational/university, government ones. These are often not near the top of searches, none of these places pay money to be at the top. Generally Dr. Google likes to put sensational sounding stuff early into the search, and then older data (which has been looked at more since it's older) before the more recent things.
One a month? Chicken feed! Try 25 in one 4 week cycle! 48 in first 2 cycles.
At least you shouldn't get to the "high risk" stage for TLS, which is why the numbers above are so large,
I had what I now think were symptoms over 8 years ago. Frequent short feverish illnesses. Doctor gave me a blood test for HIV and hep but the sole outcome was a talk and printed sheets about heart health. That was the first and only blood test I have had in 63 years prior to Nov 2022.
I had what were clearly symptoms 3 years ago. Persistent cough over Xmas 2019, feverish illness weekend after new year, cough continued for a month and was waking me up at 4am. Saw doctor, got a steroid nasal spray. Yes it fixed the cough.
Lymph nodes in neck "popped" last year. Saw a doctor on a Thursday, she started writing URGENT on referral letters and made sure I saw it. Had a blood test Friday. Called to doctors on Monday Wcc 94, haematology were doing more tests. Appointments with 2 clinics on doormat when I got back from doctor. Maxillofacial surgery on Wednesday and audiology (very deaf so I'm a patient of theirs) on Friday. Went to maxillofacial, appeared to be all set to do a biopsy until I told them that haematology were doing more tests. Doctor and charge nurse charged out of the room. Came back after about half hour. Nothing like TV ads, no MacMillen nurse etc. just "you have chronic lymphatic leukaemia, nothing to be concerned about". Did a 2nd blood test. Cancelled audiology.
Video consultation with haematology, yes it's CLL, you are just at the right time, you need treatment ASAP, at least you haven't had years of stress while watch and waiting. 2 more blood tests, CT scan found a conglomeration of lymph nodes 14x1cm in abdomen. 2 biopsy before Xmas. PET scan, ECG, another blood test Jan, Wcc now 93. Feb one biopsy had been sent for 2nd opinion, another blood test. March told I would be getting V+O and transferred to another hospital as they couldn't do the blood work. Had to get stumps of teeth that had root canals but had lost the fillings repeatedly removed, back to maxillofacial end of March (someone moved heaven and earth!). Started V+O April 6th (day late), 12 x 4 week cycles, classified as "high risk" for TLS.
25! blood tests in first cycle. 11 of these for initial 2 days Obinutuzumab. It would have been 10 but had an IRR within minutes of starting 100mg dose, got me an extra bonus blood test. 10 for initial 2x10mg Ventoclax in week 4 as first dose was at 8pm. I got 3 doses in 37 hours as next 2 doses at 12am and 8am. 4 blood tests prior to consultations.
Next cycle starts tomorrow. Should have 5 blood tests for 50mg Ventoclax but as I'm not in hospital now and won't be there for breakfast I expect it will go like last week. By the time they have me hydrated it will be over 8 hours late for the Ventoclax. So I expect I'll win another 5 blood tests when they keep me a 2nd day to get it back on time for breakfast. Then there are 4 prior to consultations. 3 more for each of 100mg, 200mg and 400mg Venetoclax ramp ups. 23! blood tests in next 4 week cycle.
So over 56 days I will have had 48 blood tests.
Then there's the kicker. For me 50% of blood tests don't find blood at first strike and take a double dip. So the initial 10 for Obinutuzumab actually scored 15. Everyone of these double dips bruised at both sites and the 2nd site bruise was bigger than 1st. Nurse that did next blood test Monday after initial dose said "wow! where do I go?". "Fragile veins" so now I have a PICC line, it was fitted Wednesday before the day 8 IV. Since then I have only had 2 needles, one for a CT scan cannula, PICC can't flow the viscous contrast agent and other for blood test during Venetoclax when the PICC line was in use for saline. Weirdly I now have a rectangular bruise at the blood test site that matches the gauze used to staunch the blood.
I must remember to go blag a Y adapter for the PICC from day care so they can give me Obinutuzumab and saline together tomorrow on ward.
As far as I can tell, most of us have 1 or 2 co-morbidities most of the women in this CLL group have had breast cancer. Also Thyoid disorders. I had breast cancer when I was 50, am now 69, have some kind of autoimmune disorder, my Rheumatologist is treating me for “inflammation” and 85% of my body pain is dramatically better .
Sorry to hear you’ve had breast cancer Luzy but it’s not accurate to say ‘most of the women in this CLL group have had breast cancer’. I’m not sure why you have this perception.
I was diagnosed in 2013 after having a blood test..CBC with differential...they never did those extra tests before...so I do wonder how long I had it before it being accidentally discovered. I am curious as to how they think you had it for 2 yrs. and why it was not diagnosed then.
this is definitely going to be a roller coaster ride if your experience is like mine. God bless and hold on. Good news is that I was given 2-4 year survival, but new treatments have been released and here I still am living life pretty well.
when I was diagnosed, as a doctor, I was able to go back through the EMR and found labs from 10 years prior that showed signs of CLL, but the ordering docs dropped the ball.
But no worries as early treatment did NOT prolong life expectancy.
I had 2 clones as well. After chemo in 2018, and with my relapse there is only one clone. Not sure what this means but my second go of treatment with newer agents this time have been very tolerable. I've been able to ski, snowshoe, workout and work since starting up again 2 months ago. I have had to cut back on the duration and intensity and nap every day, but I've come to love the little nap time haha.
I have become great friends with all the docs and nurses and lab techs over the past 12 years and 2 rounds of treatment, one in 2018 and one now. It has actually been fun to see and chat with them all at each visit or lab draw or phone all. I usually look forward to these.
I hope and pray that you can find joy and fun in this life changing journey. Up until covid, I chose only to think about CLL on the days I had labs to see how things were progressing, or on treatment days. But even with treatment I decided I could puke tucked away in the trees on a hike or skiing just as easily as laying around the house and being outdoors in nature has been life saver for me.
Hope you have many more days feeling energetic! I myself have had another cancer before CLL diagnosed 3 years ago so probably not that unusual….although I understand the trauma of ‘winning’ the opposite lottery! Good you found it & can be on W &?W! Best of luck!
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