Is it ever too soon to start treatment?

[Dexterdoggg]

I am approaching the time when I am going to start treatment. My numbers continue to get worse and an thinking it might be better to start treatment sooner rather than later. My HGB (12.8) and platelets (152) aren't to the point where treatment is recommended but I am thinking about starting treatment before things get too bad. I figure if I start treatment some time next month, I would be a couple of months before my numbers would reach the point of recommending treatment. Has anyone started treatment early to hopefully make the treatments go a little easier? I am planning on doing Obinutuzumab and Venetoclax. Thank you.

[AussieNeil Partner Administrator]

It comes down to the pace at which your numbers are approaching the various treatment trigger levels, assuming you don't meet other criteria for commencing treatment. If I started treatment when my haemoglobin was at your level, I would have missed out on a further 5 years of watch and wait, along with the chance at a leading contender for the next gold standard limited term combined targeted therapy protocol. My platelets were averaging 100 back then. If it's only a couple of months difference that you are anticipating, then I would suggest that the most significant factor in your treatment timing decision is how long it will be before you can get ready access to effective monoclonal antibody or antiviral drugs in the event you succumb to a COVID-19 infection. Remember, you are highly unlikely to be able to boost your antibody immunity with vaccinations until around a year after your last obinutuzumab infusion. Venetoclax can also reduce your T cell count slightly,

I take it that you've familiarised yourself with the triggers for starting treatment? healthunlocked.com/cllsuppo...

As you can gather from that post, the various CLL management guidelines are regularly updated. Those treatment triggers have years and years of experience by many thousands of patients behind them.

Neil

Update: Corrected 'infection' to 'infusion'

[Dexterdoggg in reply to AussieNeil]

I know that I don't have an extra 5 years in me unless something drastically changes. My numbers are not going down fast, but with my ALC and WBC doubling ever 6 months for a long time, it is starting to bother me. I know that isn't a reason for treatment but it is still in my mind.

I am trying to hold out for a clinical trial which is supposed to open before the end of March. I don't know if I will even qualify for it with my other cancer but my hematologist is going to find out. If I do qualify, I would have to think about whether or not I want to drive 85 miles one way if they won't let me treat here. The two treatment arms would be A+V or O+V. If I am in the O+V arm, I would be making at least 9 of those trips when I could do them here if not in the trial.

I am also watching the Covid situation closely where I am. I live within 10 miles of 4 hospitals so if there is any monoclonal antibodies in the area, I should be able to get them. I am trying to wait until this phase of Covid is near completion to start treatment.

[seelel]

Age can be a determining factor with this decision. It's preferable to treat while the body is still reasonably robust. You haven't specified your age anywhere I can see.

After rapid growth, the lymphocyte count can often plateau. You may wish to consider remaining in observation mode for a while longer as long as your haemoglobin and platelets remain stable.

And I think Neil's comment about Covid is extremely relevant. It may be preferable to avoid treatment until the current pandemic is in decline.

[Dexterdoggg in reply to seelel]

I am about to turn 51 years old and my lymphocyte count has never plateaued since starting blood tests 2 years ago. If I remember correctly, they are currently at 306,000 and they double every 6 months which I know is not a reason for treatment but it is something I think about a lot. I am definitely watching the Covid situation where I am and will bring that into my decision making.

[seelel in reply to Dexterdoggg]

OK - so apart from being 51 years young and probably robust, your bone marrow hasn't gone into age-related decline yet. The marrow is made up broadly of red marrow and yellow marrow (adipose tissue or fat). The adipose tissue increases with age and the red marrow decreases commensurately. Hence there is less haematopoietic activity possible. So a 300,000 ALC in an elderly person has different ramifications from that of a younger person with the same count. In short, your number of 300,000 is just a number as long as you have sufficient red marrow to produce haemoglobin, platelets, etc.

[SofiaDeo]

If your rate of hemoglobin, etc decline isn't alarming/drastic, and you aren't having symptoms affecting your life significantly (unable to sleep soundly due to numerous nightly sweats, severe fatigue, harder to focus/concentrate, increasing colds/infections, bruising/bleeding), and you are considering antiCD20 treatment, it may be wise to wait a few more months, watching the Covid situation. Are you getting other organ systems tested (kidneys, liver, heart)? Everything there OK, or are you seeing changes in BUN or ALT/AST? Protein in urine? Ever have a cardiac stress test, or even a homocysteine level run? How's all your various cholesterol numbers and ratios? Any bone pain/movement issues?

Your potential infection exposure from job, family, lifestyle, should also be a factor in your decision IMO. If you can/are able to add air cleaners/sanitizers to home & work, and don't have a lot of potential exposure in your lifestyle, this is probably less important. But Covid isn't over yet, and if your life circumstances are "higher risk", that's a factor that isn't in current treatment guidelines, to my knowledge.

FWIW I recall reading something about a patient with lymphocytes at or near a million. This patient apparently had no other organ or system involvement. And my regular hem-onc at my diagnosis, before I saw a CLL specialist, said he was uncomfortable with not treating numbers over 200K. So while "guidelines" may state you "don't absolutely need treatment", if you want to start soon, IMO there's no absolute contraindication. I personally went the logical, "these drugs affect other cells, and I don't want to wait until they are in danger". But while my lymphocyte doubling time is around 4 months, I was very symptomatic early on. I have had a treatment "hold" my CLL (considered a failure since the numbers didn't decrease), a nice almost 5 year remission, a treatment with too many side effects, a treatment that remission lasted only a year, a treatment that worked for mmm 6 months then failed, now I am being tested for uMRD after a year of treatment. Other than my initial symptoms at diagnosis, my labs aren't the reason I have done successive therapies. I too haven't wanted to wait until my labwork mandated treatment, I wanted some leeway for the "it's more likely than not, that neutrophils, RBC's, and platelets will drop" potential.

[thompsonellen]

As a relatively young person (53) on her second round of treatment I can add you need to keep in mind this is whack a mole. You'll get treatment and it's not 100% but likely you will relapse. This is what happened to me (I am 17p so this my disease progresses faster). I got 5 years from start of treatment when I because resistant to ibrutinib/acalabrutinib and now I'm on to another treatment path. I know it feels terrible when your hemoglobin starts to tank, but IMO you wait until your specialist says go, and in my case, that was well after I started feeling terrible. PS I will post this weekend about my LP-168 clinical trial (I'm headed in the right direction).

[JLJC]

I was on W&W for almost 3 years. ALC and WBC doubling more often than Dr liked but yet I was still feeling good and Other bloodwork looked pretty good. I knew my body would tell me when it was time to start and it just happened within a 2-3 week period recently. I went into the doctors office prepared to start O & V that was the choice I made And my doctor strongly suggested with the Covid/omicron environment currently going on, the fact that I had two vaccines and a booster and still did not mount any antibodies, that I do not do the O&V Treatment due to the fact that My immune system would be even more compromised than it is now. He suggested that I start out now on acalabrutinib now which I am starting today actually. I was very disappointed because I had gotten geared up in my head and my psyche to start treatment and chose the treatment and then felt disappointed by my Drs suggestion But at the same time I don’t want to get infections and I don’t want to get sick and I don’t want to go to the hospital. Being on W&W can be nerve-racking but there’s no indication that starting earlier has any benefits. It is hard to be patient with CLL but The sooner you start medication if your body is not ready for it, you’re short changing yourself for the future. Every day new strides are made in CLL in the treatment area. So I am having to be patient now even more so because I’m starting on a BTK inhibitor and not the O&V. I am in hopes that the trial of Acalabrutinib and Venetoclax Will be approved in the next couple years and at that point maybe I can change. Covid sucks. Other than changing my every day life it has affected my life long term now because I’m not able to do the treatment choice that I wanted in fear of putting myself at further risk. Hang in there if you can a little longer. My WBC was 476k last week. My WBC has been high for a long time but that alone was not an indication to start treatment. Good luck.

[jj411]

DD,I was an early starter but my numbers weren’t too bad. Of course I was feeling crummy and my lymph nodes were approaching 1cm but my last scan mentioned minor spleen enlargement. My oncologist recommended starting on O & V, I’m on my 7th cycle now and have many of the side effects but still punching through. Nausea and the runs are the most annoying so far.

[Sumoldbloke]

I think these decisions we make for treatment are quite personal and individual, not only in the clinical sense but also how they interact with our lives. My decision was because of my increasingly enlarged spleen although my bloods are not bad. I am fortunate to be mutated and without other symptoms and with a slow doubling time. After 15 years on watch and wait and approaching 72 years of age it seemed like time to remove what was like a tennis ball lodged under my left ribs.

Perhaps counterintuitively, I also decided that treatment during the pandemic has the benefit of many healthy people masking, and a lower rate of other non covid respiratory infections circulating.

I made sure to get all my vaccinations ( hib, shingrix , prevnar and of course Covid.)

I also wanted a time limited therapy which would allow me to avoid the risk of enduring side effects.

Finally, as the pandemic is restricting my ability to swim , travel , socialise etc then I might as well have the treatment now.

Million dollar questions: can I avoid infections? What period of remission might I achieve? And what further treatment choices might be available after O & V?

Like I said, all very personal, there is science, there is risk analysis and there is the rest of my life . As with us all, I don’t want to be owned by the disease.