54 yr old stage 2, going on 4 th year diagnosed. My WBC 200 with 1.5-2cm nodes ,no spleen swell ,some sweats for day or 2 now and then ,no trouble with weight lose as gaining weight easily . My wbc have increased consistently over last year . My OC is wanting to talk treatment very soon to take advantage of younger age and good health, ability to maybe handle treatment better , bringing possibly longer term remission capabilities.
I've been reading the typical guidelines for starting treatment and am confused a bit as my symptoms are not all aligned here with these guidelines. I'm not expert nor oncologist and get overwhelmed reading bloodwork .but wondering if should be going along with recommendations coming .Concerned don't want wait too long either and miss an opportunity window ...still.new to this site , maybe others have already asked this or can share their thoughts.
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As covered in our pinned post on the indications for starting treatment
healthunlocked.com/cllsuppo... from what you've shared, you are right that your oncologist's reasoning doesn't seem to be aligned with them. You mention your WBC has increased consistently over the last year, but it would need to have been under 50,000 a year ago, for you to meet the lymphocyte doubling time under 6 months indicator. (More correctly, it's the lymphocyte doubling time, not the WBC doubling time, but the error would only be a few percent with your counts.)
You haven't shared where you live, but even that shouldn't be a consideration, because even with the older chemoimmunotherapy treatments, the potentially curing treatment of FCR is recommended up to the age of 65. That fits with your oncologist's mention of "bringing possibly longer term remission capabilities", but FCR can only potentially provide a cure in about 55% of those with IGHV mutated CLL. Even then, it still comes with an increased risk of developing the l secondary blood cancers AML or MDS.
If you are seeing a general oncologist, I expect they don't have many CLL patients and are using their experience of treating other cancers as a guide. Oncologists specialise in solid tumours and blood cancers are relatively rare. CLL is designated an orphan disease in the USA and Europe to encourage new drug research. Accordingly, the pace of new CLL drug research has been amazing over the past 10 years. Unless you have access to a new, very promising clinical trial, waiting a bit longer is likely to give you access to a better treatment - one that is as least as effective as current approved treatments and likely with a lower side effect and adverse event profile. You'll also benefit from the long term study data on the newer treatment options, which will enable your specialist to better match the increasing number of treatment options to your particular CLL markers, along with better consideration for other aspects of your health, etc.
Because the newer CLL treatment drugs (targeted therapies, not traditional chemo) are so much better, some clinical trials have been run to see if perhaps some can benefit from earlier treatment, such as those with more aggressive prognostic markers. The challenge is that treatment puts you at increased risk of serious infections and BTKi drugs increase the likelihood of developing high blood pressure, plus there's also a risk of developing atrial fibrillation. So early treatment comes with the risk of requiring long term management of cardiovascular conditions. You also reduce your chance of staying ahead of your CLL developing resistance to your treatments. You should expect to live out a normal life expectancy with CLL nowadays and you typically get your longest remission from your first treatment. As your CLL becomes refractory to each successive treatment, treatment options shrink as does typically the time between treatments.
Your oncologist should be supportive of you asking for a second opinion. If you live in the USA, you can register for a free video consultation with a recognised CLL specialist through the CLL Society cllsociety.org/programs-and...
Please keep our community updated; I'm sure plenty of members will be interested in your CLL journey and may it be a long one.
Neil, I just wanted to thank you so much for your thorough, knowledgeable, and compassionate answers to so many of the questions posted here. You are a godsend to all of us, but especially to us newbies.
Is it too early to even TALK treatment (as your doc wants)? Probably not. You have consistently growing ALC, which has now gotten to a decently high number. You have at least noticeable LAD. You have B symptoms, especially with mentioning the night sweats. You haven't listed hemoglobin or platelet numbers, and I'd assume with WBC getting so high, these may have been slowly dropping along the way. So, is your doc wanting to talk treatment bad? NO. You don't want to be talking treatment options from an ER bed, but rather while you still have time to decide on what's the best path.
Do you have to treat tomorrow? No. BUT, I think you're on the path that intermediate-to-short term starts for treatment should now start being your mindset. So, having time to research, find options, figure out insurance coverage, and get your doc opinions/expertise/plans is the perfect thing to start doing right now.
I'm never a fan of starting treatment too early. But neither am I a fan of someone starting too late. This is a disease that benefits from "just right", and knowing when you are starting to get to that range is key to making everything to continue to go as well as possible. I think you're entering the outskirts of "just right" right now.
Symptomatic LAD or splenomegaly - LAD = Lymphadenopathy (swelling of lymph nodes). So, symptomatic LAD is swollen lymph nodes that are also starting to have effects on your health (aka symptomatic). Yours seem not yet symptomatic, but noticeable is the 1st step there.
And ALC is Absolute Lymphocyte Count.
It's from the 5 item list on Neil's post of your disease being "active" and likely nearing treatment...
The replies above are excellent advice, but it sounds like time to seek a 2nd opinion from a CLL expert hematologist (OCs are better at solid cancers, Hem/Oncs for blood cancers).
If you are in the USA, you can get a free 2nd opinion by telemedicine here:
I was in similar position to you a couple of years back. You can check my profile for more details.
In my view and based on what you've posted here, you are not a candidate for treatment yet, but it likely isn't too far off.
You don't show spleen swelling and your lymph swelling is not too bad yet. You have some occasional night sweats but not consistent. You have ALC counts presumably near 200 (you posted WBC) but with 4 year W&W your doubling rate is likely something like a year. None of that says treatment to me.
But... you are starting to see buildup of cancer products (in the lymph swelling you are seeing) and your counts are starting to stack up. This may indicate that progression of symptoms will speed up from here.
However, as AussieNeil reminded me at this point, we've had people here with counts well above 500 and I think the board record was over 1k. So that number, by itself, is merely an indicator, not a cause to start treatment.
I'd do the following in your shoes:
1) Keep an eye on symptoms. If you start feeling significant discomfort from nodes or spleen, or if your night sweats become consistent, report that.
2) Line up a CLL specialist. Even as a second opinion, they can be invaluable. And they will know the current state of clinical trials in your area more than the generalist.
3) Bone up a bit on treatment options. In many places outside the US FCR chemotherapy will be on your potential treatment list (effective in many cases, but some risk of causing worse secondary cancers). In my US experience they are moving away from FCR in most cases. There are different immunotherapy regimens on offer in different areas, some with fixed duration (rougher course, but defined end date) and some with indefinite duration (generally milder side effects, but risk of cancer evolving around it). Knowing a bit about options will help you ask the questions that will help you make a good decision.
At similar age to you, fixed duration was a priority for me. I considered FCR, but went with a phase 1 trial instead. You can read more about that thought process here: healthunlocked.com/cllsuppo...
Good luck and hopefully you won't need all this for a couple more years yet.
Thank you all who have and will be replying very much appreciate the feedback . Thinking I should share some further info as get more user friendly with how site works . I am from British Columbia ,Canada close to Vancouver . Still sorting and learning the bloodwork thing ,some great info out there to help learn it . But thought would share some added info from previous feedback . My Dr .is a Medical Oncologist who appears to work in immunology, clinical oncology, molecular oncology disciplines . Not sure if that makes him a CLL expert but they are far and few over here and being out of US , I cant apply for the Expert option off the CLL website , but will keep searching. Dr. did note concern with numbers changing hence the talk about treatment sooner than later.
Your platelet count is very healthy. Your lymphocyte doubling time is around a year, confirming your CLL is fairly active, but it isn't the primary driver, which is your haemoglobin trending down toward 100, the trigger for starting treatment. So I agree with MisfitK and scryer99 that now is a good time to explore treatment options, because you are about to enter the optimum treatment window, probably in the next few months, depending on how your haemoglobin trends.
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