Hi everyone. Bit confused. I've had CLL for 15 years,never needed treatment. See hematologist every 4 months. The last few times he's mentioned maybe treatment but was happy for me to carry on with watch and wait. Saw him yesterday and he showed me all blood results and said they were all stable. I've never had swollen lymph nodes or night sweats. But then...he told me he's retiring in a year and he wants me to start btk or whatever it is. Asked why and he said they don't want it to get to a stage where its harder to treat? Yet all my bloods are stable? I've also got heart failure which he knows about and this treatment can mess with your heart. He said there are rarely side effects. My question is...why now. He then said I can see him in 4 months but my bloods will be the same and he'll be closer to retirement? My hubby thinks he's just covering his own backside before he goes. I'm going to see my gp next week and ask to pay private to see a Cll specialist for second opinion as I really dont see why I need to start treatment now. Hes railroaded me into seeing him in a month and starting tablets for life. Just wanted your opinions. Sorry for long post x
Confused: Hi everyone. Bit confused. I've had... - CLL Support
Confused
Can you identify any symptoms pertinent to you among the recognised reasons for starting treatment, from those covered in the guidelines covered in this pinned post? healthunlocked.com/cllsuppo...
Your haematologist should be able to justify his recommendation with reference from those iwCLL (or NCCN in the USA), guidelines. It's certainly appropriate for you to arrange a second opinion to resolve your understandable confusion.
Neil
Thank you for replying. I just don't understand why when all bloods are stable. And the risk of something making my heart worse is frightening
While you haven't shared much about your CLL particulars, other than you have been anaemic, given your age (same as mine when I had my first treatment) and long time in watch and wait, I'm wondering why your specialist is considering a BTKi treatment rather than a fixed term treatment including Venclexta/venetoclax. That type of treatment could well give you a remission of between 5 and 10 years - without the valid cardiovascular concerns you have with BTKis.
Neil
I've no idea. I just don't know why he wants to start anything when I'm stable..it doesn't make sense to me
As MisfitK suggests, are you able to share your last few counts? Just your haemoglobin, platelet and lymphocyte counts should suffice. You might have stable platelets or haemoglobin, for example, but they could be dangerously low. If you are very anaemic, you'll feel way much better after treatment. I see that you were being considered for FCR treatment recently the newer targeted therapies are much more tolerable.
This post and replies, show how to make your post private to this community. healthunlocked.com/cllsuppo...
Neil
I don't know what they were yesterday..he said my haemoglobin was very good,I take an iron tab every day. My platelets I think he said were around 75/80. And white cells in January were 213. On the letter he forwarded to me as well as my gp,he said I'm completely asymptomatic...and it seemed unlikely I would need treatment any time soon. But yesterday he said all stable but wanted to start it. I've no swollen nodes anywhere,no night sweats. Nothing that says I need it
I know you're very nervous about treatment (from your past posts), but low RBC (mentioned 9 months ago) + ALC above 200K (with white cell at 213K, that seems likely) + platelets under 100 consistently (since you mentioned stable-ish) together all signal that you are getting into the zone for treatment in the near-ish time frame.
If you want, I would get a second opinion, but I don't think the 2nd opinion will say your 1st doc is wildly off-base. He might be a little early, but not a lot early (I know I mention the Goldilocks zone here, and you do seem just about right).
As for why now, I believe he'd like you to treat a touch sooner vs a touch later so he can monitor any side effects you may have. Most treatment side effects occur in the 1st 6-12 months, especially on "the ibs", so being your long term doc, I think he's actually wanting to just watch out for you, vs having you hit a "must start" treatment time when he's on his way out and you're transitioning to someone new who knows nothing about you.
But you know you and you know your doc, so if you're not comfortable, again, seek a 2nd opinion.
What is rbc? If it'd red blood cells they are fine. He also told me yesterday that he has patients with much higher white count than myself and not on treatment. I'm so confused and really worried about it affecting my heart more
RBC is red blood cells. You mentioned your RBC was low and you were anemic 9 months ago in a post ("My hematologist rang this morning saying my red cells are low, and I'm anemic even though I take an iron tab every day"). Sometimes, especially if your WBC were as high then as they are now, that itself would have been enough to kick off treatment. And now with your platelets equally low, it's kinda in the window...or as I've coined here "the Goldilocks zone" of "just right" for treatment.
One of the medical reasons to start CLL treatment states - "you have evidence of progressive bone marrow failure, characterized by worsening anemia or low platelet count" - well, you are 2 for 2 on this category...even without considering your very high ALC...
That said, you can probably push off treatment for a few weeks/months, but you're probably no longer in the "wait years" category. So, now it's about finding a good time and type of treatment to start before you move from an elective start to an emergency one...and I think that's where your doc is coming from. He wants you comfortable with how this will go, knowing you are uncomfortable with the whole idea of treatment...so he's easing you in to the idea vs forcing it.
But again, I'm not a doc, and I'm not you. If you're not comfortable with your doc or his medical advice, seek a 2nd opinion.
Thank you for advice. Yes I had 2 iron infusions last September and they are ok now
MisfitK,
Per the NCCN and iwCLL guidelines for managing CLL, which I quoted in this post healthunlocked.com/cllsuppo... yesterday,
'Absolute lymphocyte count alone is not an indication for treatment in the absence of leukostasis, which is rarely seen in patients with CLL."
The iwCLL guidelines includes the use of lymphocyte doubling time as an indication for starting treatment, which is not mentioned in the NCCN guidelines'.
That's consistent with welshlady52 quoting her consultant as saying "He also told me yesterday that he has patients with much higher white count than myself and not on treatment.
Welshlady52, I agree with MisfitK that your constant might be concerned that "you have evidence of progressive bone marrow failure, characterized by worsening anemia or low platelet count". You've mentioned having a stable platelet count of 75/80, which is below the iwCLL older cut-off of 100 for starting treatment. That was changed in 2018 to allow for a lower, stable platelet count, with no guidance as to how low that could fall while remaining 'stable'. My platelets dropped to the low 50s before I started treatment and my haemoglobin was around 105 but drifting down. I needed two packed red blood cell transfusions to get me through treatment but surprisingly to me, no platelet transfusions. There's an optimal window for starting treatment and you really don't want to slip out of that window, which I consider happened in my case, due to my clinical trial going on hold as well as a month's delay while waiting for confirmation I met the trial requirements, which I barely did. By all means get a second opinion, but from what you've recently shared, I suspect your consultant is indeed becoming concerned about your bone marrow infiltration. If you were to have a bone marrow biopsy, you'd probably find that you have over 90% bone marrow infiltration. When CLL infiltration gets that high, your blood counts can drop precipitously when you start treatment, complicating matters.
Neil
Can you post your actual blood results for your last few appointments? While you may be "stable", you may have factors in your blood that have indicated treatment, but your doc has held off b/c you still feel "well"...mine has for that reason.
PS - And if you post blood numbers, please edit your post (at the bottom of the edit page) and lock to this community so the whole internet doesn't seem them, but just us.
Thank you
Listen to your gut, get a second opinion.
Thank you. I certainly will
My husband is the same, stable and has not been given this 'option' and at 84 I'm pleased because apart from Rampril he takes no drugs at all and although he gets tired, an entitlement I think at 84 lol he leads a good life, playing table tennis, gardening and so on. Personally I wouldn't accept the offer of treatment but I would have regular blood tests. He has them every year followed by a consultation over the phone with a specialist nurse..........why take poison into you system if you don't have to! Good luck x
Thank you so so much. I'm so worried about it. He said he doesn't want it to get to a stage where its harder to treat but I get bloods done and see him every 4 months so he would know if they were getting worse. He's been happy to let me carry on for the last year so I don't understand what's changed. I said to him on Friday that we will leave it and see how they are in September and he said they'll be exactly the same as they are now. So he's not expecting them to get worse so why treatment? Thank you
Belts and braces maybe, but your body and your choices, if your bloods are unchanged and you have no other contraindications then sometimes your best leaving well alone. If it was me, or speaking on behalf of hubby who has CLL, answer mould be, thank you for your concerns but id rather continue with regular testing and W/W.
Thank you so much. I'd happily have bloods done every month and take it from there
then do what makes you happy, providing you are not getting worse and things are the same and you come to no harm, lets face it, there might come a time when you do need to have treatment but then you might never need it! You've made your decision, good luck x
Thank you so much x
You don't have to pay for a specialist. Just ask your CNS.
What's CNS?
Sorry to disagree Skyshark but if welshlady wants a second opinion she needs to ask her consultant, and or her GP for a referral. A CNS is a clinical nurse specialist and not all patients have access to one, or know who they are especially treatment naive.
Do see your GP and please get a printout of all your bloods but certainly your platelets look low and a reason to treat. Also ask your GP for a referral to Cardiology, if you don’t have a consultant. If you mention the area you live someone will be able to make a suggestion for a second opinion.
Colette
Thank you. I've never had a CNS ever. I was under a cardiologist when I was diagnosed with heart failure..they put me on a lot of heart meds and I havent seen them for a year. I don't want anything to make it worse
Sorry but have you not had a review of your medication since then. Suggest your haematologist needs to discuss you with your cardiologist and you need to ask for this to happen.
No I haven't. As soon as I was stable on meds they discharged me. I asked heamatologist what happens if I get atrial fibrillation on treatment and he said they'd stop it. He said you don't always know its happening! Really worried tbh
It almost seems like malpractice to start treatment when clearly unwarranted. When I started treatment, they also told me that there’s a “sweet spot” in which they like to start treatment if blood numbers and symptoms are showing disease progression, which yours are not. Good for you for seeking another opinion.
Treatment meds, for me, were no joke. I ended up having an emergency surgery/heart procedure because the treatment gave me cardiac tamponade (an extremely life threatening condition in which so much fluid builds up around the heart that it can’t beat.)
When treatment is warranted and necessary, so be it. But if it’s not, then I would think it’s best to leave well enough alone.
Best wishes.
Thank you so so much. I'm terrified tbh and so worried about it making my heart worse. I'm definitely getting 2nd opinion
On the other hand, my first thought was exactly as Misfit speculated, that you are at treatment stage and maybe even have been for awhile and your retiring doc, knowing you well, wants you to start while he has time to monitor, etc. Nonetheless, second opinion time.
Thank you
How was your Wbc and platelets?
Think wbc 213 which he said was ok ..also platelets which were around 75/80. He said they are ok. Yet then mentioned treatment. I'm absolutely terrified and think this is the end for me
I am going to jump in here. You are the one that has to make the decision. You have been given a lot of advice concerning this issue, on both sides. But the one thing I know from experience is that I am glad my CLL specialist started my treatment a little on the early side. There is indeed a “sweet spot” for starting treatment. My doc told me that he like to start treatment while the patient was still climbing the mountain rather than wait until they got to the top and started falling down the other side. While not everyone gets severe side effects, if one does get them it is better to get them when one is still “feeling fine”. If I had been sicker when I started treatment, the side effects would have been so much harder for me to handle. I am sure I would have survived, but it would have been much more difficult.
Also, while side effects vary for different treatments, but many treatments will cause some of your “good” numbers (like your platelets, neutrophils, WBC, etc) to drop to a worrisome level. If you start out with your numbers a little bit higher, they have more room to drop before they cause problems. Platelets are not to be messed around with, as many kinds of accidents can occur that would cause blood loss which can be critical. And low neutrophils can lead to you catching every little bug that comes around. Unfortunately, we can’t wrap ourselves in bubble wrap!
So, I would ask my current specialist for his specific reasons for wanting to start treatment at this time and ask about treatments other than BTKs. Also, ask him what he means when he says specific numbers are “ok”. That is a very non specific term, especially considering he is advocating the start of treatment, If you are not satisfied with his answers, ( and it doesn’t sound like you will be) get the second opinion.
BeckyL USA
Thank you so much
please don’t pay for a second opinion, just ask your GP who will refer you for second opinion. You are right to get second opinion while the new btki’s are less toxic you need to be careful with heart conditions.
Good luck going forward, Dave.
Thank you so much dave..im just so worried and confused tbh
I would cancel that next appointment with him and find a specialist. From what you’ve said, none of that makes sense. X
Thank you so much. I'm hoping to get gp appt Tuesday and ask them how I can get appt with cll specialist
Sorry I don’t want to be a nag but you need to take control. You will need to do some research and suggest who you want to see, a GP will not necessarily know who is a CLL specialist. I moved to a CLL specialist but discussed with my existing consultant before suggesting to my GP who I wanted to see, it was all straight forward and easy.
Colette
Can your condition be considered stable if you have heart failure? I feel like this would automatically make you a high risk patient. Were you diagnosed with heart failure before or after CLL? I think a second opinion is the best first step to give you peace of mind, but your platelets are low and CLL treatment will make them drop, possibly much lower.
My husband had treatment when his counts were all nearer to zero and he almost had to be written off because they simply couldn't proceed with some treatments because he was too unwell to legally consent to them. So I can understand your doctor advising you to start treatment now before you develop any new issues or your counts worsen.
But with the state of the NHS, I also wouldn't blindly trust their advice anymore, unfortunately. You're entitled to request a second opinion on the NHS, so I would start there and see what someone with a fresh set of eyes makes of your results. I will say that Venetoclax and Obinituzumab had minimal side effects, but given your heart condition, I wouldn't just volunteer for unnecessary treatment.
Also, iron is helpful, but a prenatal vitamin will provide b vitamins and folic acid, which I found did a better job of helping my husband's counts recover after his stem cell transplant, and as women our cycle causes our counts to be lower by default, so prenatals are a good way to combat that even when we aren't pregnant or trying to conceive.
My main gripe with NHS doctors has been their willingness to suggest treatment without fully explaining their rationale behind it. As a patient, you should feel confident that you are receiving treatment that is right for you and your longterm health.
Thank you. No ive had CLL for 15 years. Was diagnosed with heart failure in December 2022
I would not take any pills!
I do not want to start them now!
With respect that isn’t a helpful comment, and I would imagine the thousands of people here on medication and treatment would agree.
Please define stable in your statement "all blood results" &"were all stable".
JM
Red cells very goodPlatelets around 75/80 white cells 213. There's been no or little change in them in a long long time
You make a good argument given this is the doctors complete response. I would pursue the doctors reasoning respectfully with them in relation to the IWCLL measure for treatment and Rai staging, and then afterwards look beyond that reasoning to other options if you are still in doubt.
good girl...that is exactly what I would do...if he is leaving you need to find someone new anyway...and second opinions at any stage of this disease is good...congrats on remaining stable all these years...
Thank you.. all that's changed is that he is retiring in a year. That's not a reason to start treatment. He said he doesn't want to get to a stage where it will be harder to treat but I get bloods done and see him every 4 months so they would pick up on it anyway
you are smart to trust your gut and get a second opinion from a specialist. Every medicine has side affects. BTK inhibitors like acalabrutinum can increase Afib. If your numbers are stable, I wouldn’t take medication. I don’t know where you live, but I went to see Dr Richard Furman who led the trials for BTK. He is at Weill Cornell in NY. There are people who have CLL and never get medication. I had a friend who died at 102 with CLL and she never got medication for it because I took her to all her doctors. Her mantra was “I have CLL and it isn’t going to kill me” and it didn’t
Thank you. I am in the UK.
Many have weighed in and given you advice so you have ideas on where to go from here. If your hematologist is retiring - won't there be a new one available within your medical group/system? Of course, it's always best to see someone considered a CLL Specialist but won't the next hematologist available to you in your medical group/system be able to start you on treatment when needed - so no need to rush now?
Exactly what I thought?
as they are retiring, I’d ask for a referral to a doctor who could be with you through any treatment you may need. That doctor would also be able to connect with your current one to review your history. On a side note, if it’s Acalabruitnib, there is less history of heart issues than earlier drugs. Best wishes.
Now I saw this post. Thank you so much
I’ve also had CLL for the same length of time and I just have an annual blood test, which shows just a few raised figures but nothing much but never see a consultant. The consultant discharged me until my annual check shows significant change.
Thank you. I just don't understand him at all
I’m not a doctor. I’ve had CLL since 2005 and have undergone about 10 treatments for CLL since then, in addition, I was DX’d with Richters Transformation in 10/2020. I’ve failed 4 more treatments since 10/2020.
If you are stable I WOULD NOT start treatment. The doctor’s retirement has NOTHING to do with YOUR treatment. There are risks to starting treatment. I have no source to site but it sure seems like the new inhibitors are causing more transformations into a more aggressive form of blood cancer. I would strongly suggest you seek a CLL specialist.
I'm not sure OP is stable at all. Right now, OP posted one partial bloodwork result that, in a vacuum, indicated treatment is indicated soon (very high ALC combined with low platelets, without even seeing the rest of her CBC or her CMP), and even not in a vacuum, with a platelet count consistently under 80 now, is due. 9 months ago, OP was treated for the symptom of iron-based anemia without treatment for the underlying CLL cause - again, indicating treatment for CLL should have been near.
OP is now likely in the zone for treatment (and has been for probably 9 months). If OP delays treatment past the point of the "just right zone," the risks for treatment to go poorly (which is the OP's big worry) increase vastly. AKA - Op will inadvertently manifest what she's trying to avoid. I don't want to see that.
With so little info from OP other than words from the doc (without backup results from her last 2-3 tests posted here to actually show "stable" and not "continued slow ALC growth/slow platelet and RBC drop"), encouraging her to ignore her doc's advice and continue on, without AT LEAST getting a 2nd opinion seems like a disservice to OP.
And if she wants to keep delaying treatment, I'd also recommend further tests be run to make sure she's not nearing a cliff for her health.
Looking at the bio, Op was diagnosed around age 50. As I tell folks on this board, if you're diagnosed below 65 and want to live your normal age lifespan, you're more probably than not going to need treatment, no matter your genetic factors. If you're diagnosed below 55, you're almost certain to need treatment, no matter your genetic factors. And if you're diagnosed below 45, it's a rock solid 100% certainty - if you avoid it, you should go out and play Powerball. So, younger folks do need to get comfortable with the fact we'll be treated...eventually...and that's a good thing b/c treatments have come so far and can help us greatly expand our lifespan. It's not 20 years ago anymore. It's not FCR anymore. Folks do well on many treatments now.
Dear Welshlady, your dilemma is faced by many of us. I feel as others, that a second opinion would be sensible.
Secondly, I think the experienced members on this forum would benefit if you could post more numbers from your lab tests. If your platelets (thrombocytes) are 75 or 80, then that is already definitely in the range that doctors will start treating. Expecting to never need treatment may not be a realistic expectation. But you say your platelets have been stable. I don’t think that statement is specific enough really to base a good answer on. What have they measured in your last several tests? Maybe the last 2 years of platelet levels? If 2 years ago they were 100, then 18 months ago they were 90, a year ago 85, you see what I mean. That is relatively stable but on a downward trend. The doctor will project that to predict future levels, but you are already in a range that doctors will recommend treatment. It’s not an exact thing though, there are many factors they weigh.
Can you also supply numbers for your hemoglobin and absolute lymphocyte counts (not just your latest numbers but over a period of time to see if there is a trend)? If those are also relatively stable but trending in the wrong directions, it gives the experienced members here much better information on which to base a recommendation. Unfortunately, I don’t think just saying stable is specific enough really.
Many of us CLLers track all of our numbers for lots of parameters on our tests. It also helps us be good advocates for ourselves with the medical personnel. I recommend doing this if you aren’t already.
All the best!
I would never take Ibrutinib if I already had heart failure. It gives a lot of people a fib and gave it to me and also causes higher blood pressure.
I'm so worried about it
I understand the feeling, could call and get a different doctor /opinion if possible and ask for a different drug, if it causes you trouble you can stop taking it. I know you have different rules in the UK about the drugs than we do here.
Thank you do much. I'm going to make a drs appt this morning and ask to be referred to a cll specialist
Hello there - or bore da!
I'm just going to give a quick view here, based on scanning the replies:
1. many have written opinions, but FWIW the 'sage' on the site is AussieNeil, who is an administrator and who has an excellent knowledge of the subject. He suggests that the recent changes - there have been changes, you are not 'stable', even though you 'feel' no different - suggests that you are in the correct zone for treatment to be considered. He seems to have had a personal experience similar to your own, which should make his views count double. MisfitK (don't know that person) agrees, and also appears to have good knowledge. Some of us who contribute have far lower levels of understanding - including me - so I'd be less inclined to pay attention to other views.
2. You are clearly uneasy about treatment - and possibly the treatment that has been mentioned so far is not the best option for you. I would definitely seek a second opinion in order to set your mind at rest about the need for treatment, and also to clarify the best option in discussions with the second opinion person and your NHS consultant.
3. I have no idea how long this 'golden zone' period lasts - no idea if it was mentioned in the discussion as I scanned the later posts - but if it's short I would get a second opinion ASAP. Now, if it's long you may be happy to wait for one inside the NHS - but we in Wales know the pressures on the system, so if it's short you may be better off going private - but do some research as to who is good.
4. Your experience is very different to mine - I went from diagnosis to treatment in 5 months, and was given chemo... by then, infiltration was well over 90%. It's been said that leaving treatment too late can increase the risks involved - I assume the risk is of neutropenia, but I may have misunderstood that point - so ask/check. Anyway, FWIW it happened to me, I got an infection which I couldn't fight just after the first round of chemo, and spent 9 days in intensive care. You don't want to go through that, especially with a dodgy heart (mine is fine).
So - crack on, don't hang about, act decisively - and good luck! With good advice and treatment, you should come out the other side.
Best of luck - pob hwyl.
Thank you. I'm in the process of getting a second opinion. He told me everything was stable and was happy...then because he's retiring he changed his mind!
Not what you're looking for?
You may also like...
confused!!!
Confused again
Help! Newly diagnosed 31yr old very confused.
CLL confused
FCR soon/confused
The bumpy journey of a relapsed CLL with a weird and confusing chest CT scan
New to CLL so confused 
Bmb results confused 
Confused about treatment option
