I originally wrote this as an answer to another question, but find that perhaps I should just ask it as a separate topic. Everyone here knows that a CLL diagnosis is shocking, especially since it is so different than a typical cancer. We get to live with it until the last possible moment where we can then expect treatment. A lot is known and published about treatment as it is the eventual key to “curing” this disease.
But what do we do while we are waiting for treatment? With all the data they have collected on most of us, something must be known. My oncologist must have an idea of how long I will likely wait (in general) before treatment. We all wait, whether it be 2 months or 20 years. Its the time after treatment where there are the most variables - not before.
I am totally confused about time to first treatment (TTFT) in general. There must be many factors that determine this - but I’ve yet to see anything “current” that is written up about it. We are given a diagnosis and many (if not most) of us are told to wait. We have blood tests, lymphocyte doubling time, flow cytometry, antigen expression, genetic analysis, age - all known. I was told that I may never need treatment - but I might. No real time frame seems forthcoming - not even a guess. I’m asking for one of the more basic aspects of the disease, not that someone look into a crystal ball and tell me my future.
All the articles I read are about treatment. I have yet in the 2 months since my diagnosis heard of how long is a “ball park” guess that I must have to wait. Is this just not studied or put into any digestible form? If I am going to “watch and worry” then I really would like to know how long that could be. Even with new advances in treatment, that time must be somewhat unchanged. Does anyone have clarity on this? Or are all the studies about treatment and nothing about time to treatment?
Most graphs say that (since I am IgVH mutated), there is a 50% chance that I may not need treatment for 25 years. But there is about a 15% chance that I will need treatment in 5 years. Clearly there must be some way of to guess at this more precisely based on the many prognostic factors and can be used as a rule of thumb to expect when treatment will be likely?
This has got to be a question that many of us have or have had at some point after diagnosis. Any ideas? Thanks.
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Jonquiljo
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I just posted about the CLL-IPI which will start to be used in clinical trials and drift down to the clinic over the next few years...
Basically it will allow streaming of patients, based on a group of factors... it will replace the current staging and prognostic systems and will be used worldwide.
Cllcanada - If I'm interpreting this correctly, the advances of the last 7+ years are not factored in, but the model is designed so that they can be in the future?
Exactly.... its an open system.. so new treatments, new genes etc. can be included and verified...
Part of the limitation at the moment are that new novel agents are not included... but this only applies to the post treatment aspect, the pretreatment aspect would remain the same...
H as CLLcanada mentioned, probably the best data we have on time to treatment comes from the studies that support the prognostic index. You can get a sense of your own risk profile by taking a questionnaire test. Note that the time to treatment data is unlikely to change much, but the time to death data is almost certainly already out of date due to new treatments, for more information see this post: healthunlocked.com/cllsuppo...
Many of the factors used in the prognostic indicators take treatment into account. So much of what I see here is really much ofbthe same - staging and estimates to overall survival. I guess this is probably because a “typical cancer prognosis” assumes treatment soon after diagnosis. Chronic diseases aren’t that simple. Research wants to find ways to prolong survival, not tell us how long we may get to wait until treatment.
Its natural, but doesn’t help those of us grappling with the shock of diagnosis. Our instincts tell us to act immediately. This is how many people think. Its not easy to say “I dont know what is going to happen.” Also, as someone who is a former scientist, I look at all these graphs and know how they can me manipulated by those creating them to make whatever point they want to make. We used to do this all the time.
I guess I will always think like a scientist, and the first thing that comes to mind is how long to treatment? Treatment is the big variable and I’d assume that people would want to know how long that first interval is. I guess I must think backwards, as it seems overall survival time is totally unpredicable. Ask anyone diagnosed in 2001. They would never have expected to be around today. Probably they are the lucky ones that survived until better treatments came around. In 2o18, who knows what will be available in 2028? That makes TTFT the only thing one can grab onto for a sense of reality. But to speculate on overall survival time now - right after diagnosis - is really just guessing.
If you look at the link I shared on my last comment the original article talks exactly about that: time to first treatment and those prognostic factors give an average indicator. The trouble is some “low risk” patients do progress more quickly than expected whilst some “high risk” DON’T. So. We have to try and live with this uncertainty. Hence why so many of us (me included) see a counsellor.
I think I see now, but perhaps some prognostic indicators are missing. One certainly would be clonal b cell doubling time. While I know that can vary at times, it does provide some real data on the disease. The problem with markers (genetic, etc) - is if the actual function has not been identified, you have no idea of what it really indicates.
The “low risk” problem you point out is definitely troubling. To me, it either indicates that there is a major prognostic variable that has been missed at this juncture, the formula is faulty, or it really is a highly variable disease. I’m partial to a missing parameter or variable. While I am stale from my days in the lab, but its troubling to me how the curve for “low risk” dips the way it does. But I have never been one to feel comfortable with the way medical “science” is presented. The (approx) 15% drop over the first 6 years is the kind of result that I would have thrown out. Perhaps 15% over 15-20 years. But that is a lot of variation within what is supposedly a clinically homogeneous population. But its definitly my opinion and not anything that would reflect on the validity of the research. Spiders give me the creeps and someone else just vaccums them up. Different people look at things differently.
The reason that I am focused on TTFT is that I was diagnosed 2 months or so ago, but my old blood labs from 2014-5, etc showed that I likely had CCL back then. The physician who got the blood reports never sent me a copy and he missed the out of range blood counts. So recently, for a completely unrelated issue, I get blood work that was even worse. The Dr goes back and says, “oh s____”, and I wanted to strangle the guy. I am 65 and could have had CLL for four years. My abs lymphocyte count was above 5000 in early 2015 and had been close to that for a long time! The bottom line is that 4 years matter. I wasn’t watching or waiting for anything, but should have been. No one wants to speculate, so I am called recently diagnosed. I feel fine and am grateful. But that 4 year “gap” is annoying in a very annoying disease.
Hi, I see. The point of the prognostic index is it is things that we can measure at the point of diagnosis that will predict how likely we are to progress. Honestly, I’m not surprised you are struggling so soon after diagnosis.
For sure if you are able to get enough previous absolute lymphocyte counts to create a sense of how fast they are growing that’s a really good indicator (perhaps the best) of what will happen in the future. I remember panicking when I heard about my cll and was assured that it would have been with me for years. Id had a blood test just months before that came back normal and so thought “but this can’t have been growing slowly!” Imagine how reassured I was to realize that the blood test hadn’t actually included a full blood count at all! And that four years before my diagnosis I had a lymphocyte count that was already just half a point off being abnormal.
Now here’s what you can do to get a sense of what’s happening with you
1. Look back in time with your blood tests to figure out whether your lymphocytes have been trending up for a while.
2. Even tho it’s not as clinically relevant as when you get through 30, calculate your doubling time from all time or at least from when your earliest sign that there was an upwards trend in lymphocytes (even tho they were still in normal limits). This will give you a good idea of how fast your lymphocytes are growing at the moment.
3. Then unfortunately you have to just wait a bit. You see clinically what tends to happen is people have a slow doubling time if their ALC is under 30 but then around that time it tends to speed up in some people. So its really not till you hit 30 that you can have an accurate sense. Also if you aren’t having bloods done very often then variability between the measurements can also be partly due to chance.
So unfortunately you can’t be sure that if you currently have a slow doubling time you will always have one so it doesn’t take away the dreadful uncertainly that drives most of us to see a counsellor!
So sorry to say this but nothing we can do will be able to tell you for sure which way this will go for you. For sure if you can show that you have had abnormal lymphocytes count for say two years and it’s still under 30 that’s pretty positive for now. And if you can show that after you get through 30 you don’t get to 60 for a year or more then again that’s pretty good news.
I’m working on a doubling time calculator with folks who know excel well. If you feel like sending me your data in a spreadsheet format (date in one column, value of ALC in another) I can use your data as a second sample to my own.
Unfortunately in the USA, nothing is constant. My labs are from different “labs” (companies), with different protocols and different ranges. All I can say is that ALC was 4500 to 5500 all through 2014 and 2015. I got sidetracked and didn’t even have a CBC until I had an injury in 2018. Over 4 different CBC’s in 2018, my ALC is usually around 10,000 (one was 12,000). And they are at 4 different labs too. So roughly- over 4 years my ALC doubled. But my basic WBC count has only doubled as well. Then again, it sounds as if you experienced the same phenomenon.
I would expect them to be higher than that. It does explain likely why I am asympomatic. But if the RATE of ALC growth increases over the progression of illness (is not constant), then this probably means nothing.
It supposedly doesn’t take much to be certified as any kind of counselor here in California, so I am not surprised I have yet to find one that ever was helpful. If you go higher than that, the MD’s want to medicate you and the Ph. D.’s are always obsessed about your childhood. My life has been far from typical - and most people don’t understand people who don’t fit “typical.”
But thanks. It sounds like wait and worry is what is there for me. I will probably try to get into a first rate program (Stanford is not that far a trek), and just deal with it. Living in the USA has become very distressing for many (most) of us, so adding CLL to the mix will just add to the chaos.
I would not be concerned that you may have had CLL for 4 years before DX, consider them worry free years. CLL is not subject to the rules of tumor cancer. Early detection and treatment are not the keys to success. The early treatment does a lot of damage to your system which can be as bad as the CLL.
In my view the doctor who missed an earlier diagnosis, the one you wanted to strangle, did you a favor. I had the exact same thing happen to me - my family doc missed the high WBC and ALC counts, so I’ve had 3 less years of W&W (no blood work in between; I just don’t go to doctors). I actually went in for a hug to thank him after the hematologist diagnosed me! (he recoiled, haha. Can’t really blame him. Probably thought I was going to beat him up then sue him).
We are all different, obviously. As different as CLL is. Hope you find a satisfactory answer, Jonquiljo.
#1 is finding CLL doc you like and trust. And re-labeling my current state of W&W to M&M - “Monitor and Move on” - has really helped me. (Someone else on this forum came up with that. Might have been a clever Brit, can’t recall).
I’m sure there’s some good medical rationale for diagnosing CLL at >5,000 lymphocytes, but has anyone ever been treated at that point who was otherwise asymptomatic? What’s the point? If it’s to trigger getting blood tests more often, why not wait until symptoms arise? Many internists here in the U.S. recommend blood panels every 6 months anyway, if elderly. Just call it “we’ll check your blood every ___ months” and then hit the patient with a leukemia dx when treatment is needed. We don’t need a warm up.....
How’s that for an ignorant newbie’s hot take on things? 😎
Whether trying to figure out time to first treatment or overall survival, I think the biggest issue is that CLL/SLL is really, in many ways, an umbrella name for many different variations on a theme (music background), some recently uncovered, and many that researchers are still trying to sort out, which makes giving any kind of exact information impossible. Hopefully their next discovery will involve the word cure and all of this will be irrelevant!
That’s pretty astonishing to hear. Do you have any references to this? I have seen people allude to multiple diseases before and I’m just curious. Its not like I can do anything about this, but it helps to know how complex things are. Thanks!
Yes, CLL is a different animal. It is absolutely mind boggling to be told you have cancer and then told to go home and wait for it to get worse. However, even with the best, and newest information available, you will still not know for sure when it will happen to you. You could have the exact same prognostic indicators, same diagnosis date, etc, as another person, but more than likely you are not going to start treatment at the same time. Someone on this forum told me early on, I don’t remember who, that all of the numbers are percentages and averages. Some of us will be in the center, and others in other places. Averages, by definition, mean that there are other numbers above and below the average. So even with more information, you still can not determine when/if you might have to start treatment. I don’t know of any other cancer where this is the case. Perhaps in the future, with improved drugs, and documented outcomes, the time to treatment will be well understood and predictable, but I know we are not there yet.
Usually after the shock of diagnosis wears off, and some time has passed, it gets a little easier to tolerate the inconsistencies and unknowns of our disease. It took me about 6 months to get to the point where CLL was not my first thought in the morning and my last thought at night.
In broader terms, none of us know from one day to the next whether we will continue into ripe old age, never to be treated, have to be treated shortly, or get run over tomorrow by the proverbial “Mac Truck”.
Now that I have been in treatment and treatment ending is within sight, there is a new thought that has started to grow in my mind. “Will this be a remission, or wil I be cured? If it is a remission, then how long til I have to be treated again? And the wondering starts all over again.
Just know you are not alone in your thoughts and wonderings. We are all here for you.
Its odd that I still don’t see myself in shock. My wife does and has described the way I act. I guess she knows me pretty well by now. The whole “wait for something to happen” scenario is quite counterintuitive. In fact it seems quite crazy at times. Being asymptomatic does not help - as I feel as good as I did 30 years ago.
I never did quite grow up and see myself as someone other than the person I see in the mirror every day. It seems like it was yesterday I was 25, naive and a bit stupid. Now at 65, nothing has changed. But also - everything has changed.
Then when it comes to my background as a scientist (which I dropped within 10 years of grad school), I like things that have some order to them. There is no logic to any of this - certainly not in 2018.
Even worse is that I have really found more bad than good in the medical system/profession over the years. My wife has major orthopedic problems and severe chronic pain. I have seen this evolve as she has been mistreated by almost every medical practicioner that she has ever seen. Almost everything they have tried to do for her has been the worst possible thing. It would be far better if they had left her untreated.
So now I find myself needing that very same medical system that I lost respect for years ago. Even the poor judgment that led to my delayed diagnosis gets me started off feeling angry and poorly treated. I don’t trust my oncologist, and am not even sure why. My “diagnosis talk” with her sugar coated CLL so much. Even at the time, I was thinking that I was being told a fairy tale. Since she is supposedly well respected locally, I will write this off to the fact that she didn’t want to spook me. I didn’t get the “good cancer” routine, but it was still too good to be true.
I guess I need to come to terms with that. She probably assumed that since I felt so well that I would walk away and not come back until symptoms emerged.
I guess that the real shock in this is that my diagnosis is the first time I have realized that I am 65, not 25. Thanks.
I should have added in my reply post that I suspect everyone when DX with CLL, looks for a reason why them and what could they have done differently to not have CLL. I also suspect all of us spend frantic hours searching for the medical/herbal cure or abatement of our CLL. keep looking, the rest of us are looking too, it gives us hope.
Jonquiljo, My TTFT was within 2 months of my diagnosis. I was diagnosed in 1997 at 11K WBC (mutated IGHV; normal cytogenetics) and started treatment within two months at a WBC of 33K. Treatment was based on the fact that my CD19+/CD5+ lymphocytes were spewing out a kappa light chain cryoglobulin that caused debilitating loss of hearing, balance, severe joint pain and Reynaud’s symptoms. I was actually relieved to get the diagnosis since my otologists & primary care doctors had no idea over the preceding months what was causing my symptoms.
We are all different. I’m not sure that looking at stats on TTFT will help your anxiety. It is only statistics. You are an individual and need to focus on keeping a strong mind and body, staying informed and keeping a positive outlook.
I think it's really hard to say. I was diagnosed and asked the doctor what was the absolute minimum time she thought time to treatment would be and she said 2 years, but probably more like 5. Total WBC was 10 but I am 17p. 4 months later, I needed treatment and declined very rapidly waiting 2 months for my OSU trial. I'm sure there are many people who will tell you the opposite was the case, and I hope this is the case for you. In the early months post diagnosis, it's hard to process this all, but I have learned to just get up every day and live life very well. I ran a 10 miler in May, so yes, I'm going quite well even though statistically I should be just about dead by now.
Have your 25(OH)D levels checked by your GP and work to bring them into line.
A Mayo study 10 years ago found that CLL patients with low VitD3 levels at diagnosis had shorter TTFT.
Does augmentation help to lengthen TTFT? We don't know yet, but a clinical trial is looking at this....
So there are many variables to TTFT and everyone is different.
The range is a few months to 25 years... you fall somewhere on that continuum. Age and genetics are variables as well... nothing you can do about those.
The best predictor of time to treatment is your mutation results. All CLL patients are concerned about time to treatment, but it is not a "cure". Many people with CLL do not die from CLL, but rather something else like pneumonia. Pneumonia causes 50% of deaths of patients with CLL. The only thing you can count on is we are all very different in our time to treatment. I for example calculate 1.5 years from DX to treatment because my WBC has not leveled off and is raising at 20,000 WBC per month. The only thing I know for sure is I must live one day at time and enjoy helping others. Enjoy life and stay fit for treatment coming down the road.
Thats the strage part. I likely could have been diagnosed 3 years earlier (if not more) in 2015. Yet I have had not a single symptom. The last time I had as much as a cold was in 2009. Since my wife has a lot of pain getting out, we tend not to for very long, but I act as caregiver - doing all the things it takes to live. So I get out a lot, and California is not sparsely populated. I generally sleep 5 (maybe 6) hours a night. Now, 4 years later, nothing has changed - other than being stressed out about CLL.
Even more odd is the fact that my oncologist stressed that it could be a very long time to treatment - possibly never. I was definitely shocked when I spoke to her, or I would have delved into it further. She must have been giving me a totally best case scenario - trying to keep me from being spooked. She didn’t even have my mutational analysis at all at that time. That turned out to show no mutations other than IgVH. I can’t determine much from the flow cytometry report because the only antigen that I can see as prognostic is CD-38, and mine was positive but at 1.2%. Oncologists hand out bad diagnoses all day. When I look into CLL after that I see “real” patients talking — -like here. The story is NOT anything like what my oncologist told me. Unless there are a good deal of people watching and waiting with CLL who don’t bother to post at places like this because they are asymptomatic, what I was told was very wrong. I have an acquired mistrust of Dr’s, but my oncologist is supposedly competent and treats CLL quite a bit.
If I didn’t have the conflict of information described, I can deal with it as well as anyone. I know well enough to stay away from Google and look at just any medical information site. But this one, and another that us US based pretty much has real patients describing the same picture. They are worth reading and participating in.
Luckily if I progressed to treatment in 6 months I could afford to be treated with Imbruvica. Then there is the issue of tolerating it and quality of life. If I didn’t have to be a caregiver for my wife it would be different. Then again, I just don’t understand the reality of it all. If I get into Stanford’s program, perhaps I can get a reality check from a CLL specialist. Unless there are tens of thousands of people out there watching and waiting for decades, I have been given the wrong information.
I would guesstimate there are around 100,000 CLL patients in the U.S. on watch and wait, the internet is a microcosm, but not very representative of the entire community ... and further... 50% of patients are diagnosed over 70 years old. Certainly there a number of CLL patients here in their 70s and a few in their 80s, but the vast majority are in the 50-70 range.
Further the population is growing 21,000 will be diagnosed with CLL in 2018 and 4500 will die... so the watch and wait population of newly diagnosed far exceeds the end stage cohort..
Thanks Chris, I would expect that the older people in any group would not go to the Internet for very many things. So everything you say seems to be right on track. Thanks for the link as well. It supports what you say a lot.
I would expect that the people with CLL who tend to frequent discussion groups would tend to be skewed to those in treatment. In fact, a reasonable question to pose in a survey would be whether someone is in treatment (or has been) - vs not.
There are recent major advances in CLL treatment - certainly since 2010. The treatments in trial in 2010 are now mainstream. On the other hand, there is a lot more access to medical care than has flow cytometry and FISH in 2018 - than there was even 5 years ago. Flow cytometry is expensive, but it seems to be mainstream now. FISH is not only expensive, but hard to do (hard to do correctly anyway).
Since, naturally, people are more concerned with treatment than time to treatment - there is a lot more research done on treatment. I also read somewhere (though my brain cannot seem to remember precisely where) that only about 1/3 of CLL patients are fully diagnosed with genetic testing, etc. BEFORE treatment. I wish I remember where I saw that, but it seems a bit frightening that many medical systems are treating people with less than optimal information. That doesn't seem to be the case with people posting here.
The only thing that explains what I hear from the (informed) medical community - (many are not informed) - that CLL is quite often W+W for 15 or more years. At 65, my oncologist told me that there was a good chance I would never need treatment - and if I needed treatment, it would likely be of a next generation anyway. Either she was BS'ing me - or relating her true clinical experience. Certainly in the San Francisco Bay area - there is no shortage of medical care when it comes to any serious illness. If she was uninformed, she would not be recommended or even be practicing at all. So I get a different impression as what to expect depending on who I talk to.
The reason this means so much to me is 1.) I must act as caregiver for my wife. and .... 2.) my "delayed" diagnosis does not give me a decent idea of what really to expect. All I expect is to know what I need to worry about - not whether I need to worry. It all comes down to whether I need to listen to my oncologist or not, and how to prepare for the future. Thanks.
Flow cytometry... everyone gets one and has for as long as I can remember, they are cheap and separate CLL from other lymphomas.
FISH is more expensive, and used to be done at diagnosis, but the FISH results can change, so they tend to be done now before treatment.
TP53 and direct IGHV mutations are quite expensive, harder to do. There is currently a worldwide initiative to certify a few labs in each country to do these tests correctly.
I recommend you go see someone like Dr. Steven Coutre, and he will get you organized. You appear to be cherry picking information for various places, some of it may be relevant some of it probably not...
Thanks, I've been zeroed on to Coutre and a couple of others at Stanford. The hard part will be to find a PCP in the Bay Area. There are few (if none) taking new patients here.
I disagree that Flow Cytometry is cheap - not in the USA. The predominant population is either uninsured or under-insured and have an income that can barely afford a co-pay for a CBC. Either you are affluent, wealthy, spend every last dime you have on health care (including sell your house), or simply ignore health care. That's what we've done to destroy health care here. FISH and sequencing for P53 and IgVH are out of the question for quite a few people. I highly suspect that most people get a preliminary diagnosis and just let it go.
In Canada you have real leadership and government, so these things are probably tough but manageable. We hide the fact that those who have insurance cannot afford to use it and those who don't have insurance cannot afford anything. It's only getting worse.
So, when I say that I doubt that many of these studies accurately reflect the CLL population as a whole, it is because it is more than likely that 65% of people with CLL don't even have $1000 in the bank, let alone co-pays for diagnostic tests. THey generally are not counted. It is that bad. Our political lunacy is nothing compared with the travesty of health care here. And, when it come to treatment, forget about front-line treatment for most people. And they will not post here. They simply give up. Sorry if this is depressing, but it is very accurate.
There is no Canadian medical coverage, its provincials and territories and each province is different in what the cover and how its covered. We generally lag behind the U.S. in new drug approvals and many think it is 'socialized medicine' , which is it in small part, but it is primarily market size.
I understand your anguish when trying to obtain an answer to length of W & W. My situation is very similar to yours, I am 70 yrs old and provide most of the support for my wife and am caregiver for my mother in law. I too wanted to find out how long before treatment. I was first told at DX that it may be years before treatment, if ever. Then the test results started rolling in,
Flow cytometry,
FISH
and
IGHV mutation testing.
I am un-mutated. Best indication of when treatment will be required is periodic blood testing and your general over all health. The general overall health is big factor. Your over all health really skews any prediction of when you need treatment. I am charting my own progress to determine doubling time. In 10 months from DX, I am getting close to treatment. As I don't know for sure when I will start treatment, I am taking care of as many things as I can to support my family for when I am not here. That is all we can do. May god bless you and walk with you.
Thanks for the support. Its hard for some people to see this from a caregiver’s point of view. It disrupts a major responsibility which often has no substitute. My wife has a serious chronic pain problem and just as I get diagnosed, her pain Dr starts her on a rapid taper of a modest amount a pain meds that she has been taking for 18 years, and never abused. It appears that in the US, people are willing to throw bona-fide chronic pain patients under the bus in the name of addicts who get drugs from illegal sources. Very few “real” pain patients ever get out of control.
Being a caregiver is difficult, and I guess I have a bit more on my plate. Thanks again, and the best to you as well.
I really understand what you are going through. I was told at diagnosis Nov 2015 that it would be a long time before needing treatment and in December 2017 my numbers had climbed to a point it was time to start treatment. Started Imbruvica at that time. Everyone is different but it is confusing to say the least.
Did you have symptoms that were serious? I have heard from a number of sources that my numbers will likely not be sole cause for treatment.
It remains that perhaps when you were diagnosed in Nov 2015 that you were told the same things I was told and were misled. This is precisely what I am worried about - do I listen to positive information when it is given to me? If TTFT is that uncertain, why do we get told ball park information when diagnosed?
I was told "probably within a year" and started treatment 9 months later, so in my case at least the guess was pretty good. I think the guessing about time to treatment improves as it gets closer, but it's still guessing. I appreciate a doctor that is clear and honest about what they don't know.
My numbers really increased dramatically. I got hot and cold a lot but not real hot flashes as they describe them. Had bone marrow biopsy and it was at 68% I think. I would have to look back. I really didn't realize how bad I felt intil I started treatment. Now I have some bad days but the good out weigh the bad. Need to watch for secondary cancers as I have developed one. Hopefully have it under control now!
My Hematologist told me exactly when I would receive my first treatment. One second after I need it.....not one second before. I mean she has it pegged right down to the second.
Well, when you are told it will likely be one or two decades before you ever need treatment - it is reason to doubt whether you are being told the truth - even a "ball park" truth. Perhaps oncologists don't want to spook people. Perhaps all the people told 1-2 decades never post on boards because they don't see this as an urgent matter. Or ... perhaps the medical community hands us all a pile of BS.
So, joke all you want, but it is a valid question to get to the bottom of. While I plan to seek out 2nd (or 3rd) opinions, it still should not be a fact that is so elusive. If I have been told a lot of BS -- my instinct is that I should not trust anything that this particular oncologist says or does.
So what is so unreasonable about wanting to know an answer to the question I have proposed - especially given the context? Even better, would you have thought this to be such a silly question 2 months after you were diagnosed? I doubt it.
In the 30-odd answers to my question above, I see a lot of very nice people (almost everyone) trying awfully hard to answer a difficult question for someone new to all of this - a position everyone with CLL has been in at one point or another. They clearly understand where my head is coming from. Or am I missing something here?
You are asking a question that has no answer. You might need treatment in 1 year or you might never need treatment. CLL might kill you sometime in the future or you might have a stroke, heart attack or car crash. You are asking how and when you will die....no one can answer that.
It was not my intent to insult you or be offensive in any way. It was simply to provide an answer, as best I could saying the truth....no one has any idea of the answer.
Final point, regardless of how you feel about whitecoats lying to you....I can assure you, it is nothing compared to how I feel ....If you are uncomfortable with your doctor then ...I say, if you think you are not getting good treatment...you are not. It is that simple. I went through 3 different Hematologist after being diagnosed....I love my current doctor...she is great She tells me every time I leave something like "You will live forever" or "You will never need treatment." Clearly she is just being positive...but I like hearing her say it.
Scott
Hi jonquiljo
I understand how frustrating and scary being diagnosed with Cll is.I wasn’t as fortunate as you to get an opportunity of watch and wait to see if there could be a chance to hold off the inevitable. I was diagnosed and sent straight to treatment.
My learning has come over the last 20 months during treatment. One very important thing I will tell you is how very complex Cll is and no matter wether it’s a patient or a specialist there will always be questions unanswered.
One of the first bits of advice I can give you is listen to your body, Cll is caused by something in us all wether that be exposure to chemicals long term stress or dietary and nutrition issues, if you have an opportunity of watch and wait that’s an opportunity to strengthen your weaknesses, adjust your diet cut out all the pollutants avoid and try to eliminate stress and most importantly strengthen the most powerful tool in your body your mind, and when that burning question arises ( why me ) you simple tell yourself try me, I’m not going to give up or fear anything.
You must also understand every person on this site either feels or has felt the fear your under right now and we all deal with it in different ways, Scott for example uses humour which to be fair I think we could all do with a bit more of me included.
Your not going to die.. your mind is your friend or enemy and it can make or break you, don’t try to get answers to every question right now, take a deep breath tell yourself I’m going to be there in the not so distant future when the cures available and until then I’m going to live my life.
Get your note pad out and write down the things you want out of life and start achieving them.
Stuart
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Stuart,
I really liked this "your mind is friend or enemy it can make or break you". I am probably going to steal it from you and take credit for it at some point, ok?
Scott
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Scott
It’s all yours. How are you and Renne?
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Good, thank you for asking....still stewing, waiting for test results....probably tomorrow they will show. Hot Hot here in Maine...90+ F and going to be hotter each day until Friday (??)
Scott
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Tell me about it, we’re suffering a heatwave in the U.K. at the moment so some very uncomfortable days and nights about the same temperatures you’ve got their.
Fingers crossed for you for tomorrow but I’m sure you’ll be fine,and you’ll get your favourite red jelly beans when your home😉
Stuart
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I just got a supply an hour ago :)))) They were great!
Jonquiljo: read over the 44 replies with concern regarding in depth advice. Most is very sound and very informative advice. However, I think people are spending a lot of time calculating how much time they have to live, keeping detailed and accurate records on blood count number....and truthfully some people are obsessing over things we can not control. If you have belief and trust and faith in your Oncologist Team, let them worry. There is much for you to do.....live the rest of you life and concentrate on the things and issues you CAN control. You can't control CLL, it is going to take its course with or without you thinking about it. Be more obsessed with life and what you can control. Yes there will be times that you might feel like you are in "recession" and mornings you feel that you woke up "dead." Concentrate on you, and your life, your future and what tomorrow, remember you can only control certain things in your life, and CLL cancer is not one of them. I have been fighting for nearly 20 years now; has not been easy, but I am here. Learn everything you can about CLL, be able to explain the "Readers Digest" version to friends and family, they are afraid to ask you. Tell them, explain to them, in the short version and go on. They all have their own problems as well. Control what you can.
Thanks. Why is FCR used instead of Ibrutinib - for younger, healthy patients? Or is younger just younger than 65 and over 65 is “older”. I am 65 and in pretty good shape. Fcr seems to have a less favorable side effect profile than Ibrutinib, but achieves longer remissions. Yes, you need to take Ibrutinib forever (sort of), but seriouly compromising your immune system with FCR seems dangerous if you live in a heavily populated area.
Any thoughts? I know the guide lists Ibrutinib as a front line opion for younger patients too - but it seem that it is not favored.
FCR is still the gold standard for younger, fit, mutated 13q patients, 6 months of treatment and the good chance of a very deep 10-15 year remission. Very tempting for many...
FCR does carry some bone marrow toxicity and CD4 T cells are supressed, there is also a slim chance of MDS/AML.
Ibrutinib has a fairly unpleasant adverse event profile for some, and the discontinuation rate is quite high. CRs as a monotherapy, perhaps you could get one in year 2 or so.
Richter's transformations are seen on both, and the rates are similar.
There are comorbidities to consider, etc. Kidney clearance, liver and heart primarily...
FCR you treat it and beat it... go on with your life hopefully, Imbruvica (ibrutinib) is a daily reminder... take that pill... then there are financial considerations and so on. Tough choices, a CLL specialist will guide you on the best path for you...
Lots of other choices and clinical trial options, although first line trials for untreated can be harder to find.
I guess all this depends on the newer lower dose possibilities for Imbruvica. It sounds like immunosuppression vs some degree of intolerance (if dose ever gets settled). I don’t have a 13q deletion either. Financially Imbruvica is not a problem for me - at least not yet. Given the radical changes in cost for most anti-cancer drugs in the US, nothing is ever certain. This, IMO, will not change for a long while, if ever - and gets more political here every day.
You've had so many comments already, but here's a perspective from a country with largely socialized healthcare - Germany.
- My husband was diagnosed last September at 49, with numbers similar to yours. They have gone further down since and he thankfully has no symptoms.
- No FISH test was done upon diagnosis. The doctor told him, in these words, that no one is able to say with any certainty what is going to happen to happen to him **individually** - it might be two years until treatment, it might be thirty. I want to stress that this is a good doctor and that Germany is very much up-to-date with current CLL research, so this is not a rural-backwaters-of CLL kind of situation, but a different - radically honest - approach to uncertainty.
- Why no FISH test? The obvious answer would be to save costs, but doctors are also trying to spare patients unnecessary stress. I know of people with a deletion 17 p who have been on W & W for seven years... Also, clonal evolution - CLL changes over time, hence the basis on which time to treatment would be calculated is continually shifting. FISH tests are done immediately before treatment here.
- We have a young daughter, a mortgage, aging parents, all the accoutrements of early (ish...) middle age, so (especially as the carepartner in all of this) I can fully relate to your concerns as a carer. But treatment, should it become necessary, is there to make you feel better and be around longer! Also, though it's easier said than done and I secretly fret about my husband all the time, your numbers should not be your main concern as long as you feel good. You are a person and not an Excel sheet.
Thanks for your response. You said that your husband’s numbers had gone down since diagnosis? That’s wonderful. I guess I didn’t know that could happen without treatment. I was told that a FISH test was necessary to be prepared for any 17p deletion present that would make the doctors have to pay a bit more attention to me. They even sequenced a large part of the p53 gene to be sure.
I’ve been to Germany with my wife for orthopedic surgery and know that your country is pretty good at medical care - probably better than mine. What I dont agree with is eliminating any FISH test to “spare patients unnecessary stress.” Perhaps it is cultural beween our counties, but I (like many others), am not doing well with the whole prospect of uncertainty. I want to face a demon knowing what it is all about. Unfortunately there is very little known about CLL, despite what people says. The fact that there is no reliable means of overall prognosis tells me that there are likely many factors that determine the course of the disease which we are totally unaware of. Clonal variation as the disease progresses is very likely a result of many of the factors we still know nothing about.
Even the use of FISH itself is not very precise. Fish has limitations in what it can detect - mainly large chromosomal abherrations. But the study of many diseases has shown us that small mutations can be just as problematic. We arent going to see that on Fish. Even my p53 gene sequencing was very crude. I guess my original training as a molecular biologist - and I am very stale in that fild at this point in my life - tells me that there are a million disease factors that we could likely be missing, and likely are.
I think i’ll feel better about things when I get a better feel for CLL as time progresses. I am often told that there is no answer for the question of CLL disease progression. I disagree - there is an answer - we just don’t know anything about it yet. It seems that research on many diseases is lacking these days. It probably doesn’y help that there are only 15,000-20,000 new cases every year in the USA. I assume that other countries have equally few new cases yearly. I know we (the USA) have pushed a good deal of research from public funding to the private sector.
I don’t envy your position as this struck your husband at a very young age. I am sorry to hear that. I wish all of you the best as this is really a lot to face at a younger age and a lot of other issues to undoubtedly deal with. Good luck. J.
Love it! I’m in the U.S., so of course I had all the fancy tests, including mutational stuff and TP53 and microglobulin something-or-other, for which I am grateful. But that took 2 weeks which was simply a period of W&W on steroids.
Sounds like Germany (and elsewhere) has recognized that one’s genetic markers don’t foretell anything worth mentioning - basically what BeckyL stated earlier.
Perhaps U.S. doctors should explain this and give patients a choice on further testing?
To me it’s kind of like, do you want the test to determine if you have the gene for ALS (probably bad example) or for possibly giving birth to a diseased baby? Some do, some don’t.
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