I just had a 2nd opinion with an expert at Hopkins. It is his opinion that I should start treatment, albeit earlier than current criteria may suggest.
17p deleted, unmutated, untreated
No adenopathy, No hepatosplenomegaly, No cytopenias
Awaiting NGS panel to evaluate for TP53 mutations in remaining alleles and quantitative immoglobulins and pneumococcal serologies, ( if serologies are sub therapeutic, recommend Prevnar 13 to check response or whether I am a nonresponder)
My first opinion doc wished to delay treatment for 3 reasons
1). I do not meet any current criteria measures
2) Delay May allow for Covid vaccine
3) Delay allows for approval of new agents and combination of agents.
2nd Opinion Hopkins doc believes I should start treatment for following reasons
1) negative markers... with signs of progression. WBC 9/15/19 24,000
WBC 7/16/ 20 38,000 Yesterday 50, 000
2) Believe Covid vaccine is non issue, I may not make antibodies
3) Believes I am in the 85% of 17p deletions that will require treatment
Suggestions at this time to begin with Venetoclax , leave option of acalabrutinib open ( I have to admit I was not keen to begin Ibruitinib for the rest of my life. Time limited therapy more appealing to me if possible)
Have a telemedicine appt October 19th to discuss lab findings. I asked would any findings alter his opinion on beginning treatment., only if I have a normal TP53 in the other allele.
So much to think about... deep sigh... 3rd opinion to break the tie?
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Mom-mom-e
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It is a lot to think about. I will weigh in, with the caveat I am not a doctor and this is just what I might do.
I agree with the decision to treat now. The paradigm to watch and wait until the last minute is not as clear with the new drugs. And you already have 17p, so its not as if treatment will select for harder to treat cll. You appear headed for treatment anyway, I would rather err on the side of starting a bit early when feeling well compared to starting a bit late when feeling less well.
I like the idea of a third opinion, not just to see if its time to start but to see what treatment to choose. BTK inhibitors like ibrutinib can work so well with 17p cll, particularly with first time treaters. Length of progression free survival would be a more important factor to me personally than time limited therapy.
I am not against using venetoclax first, but I would want more info on why. If you have the resources to get a third opinion, I dont see the downside there. I had differing treatment opinions from my first two doctors and sought a third opinion. He disagreed with both of my first two docs. I ended up going with the third doctors opinion, he was the most persuasive of the three for me.
Thanks so much for your understanding reply. I am leaning toward treatment. The doc is on the CLL expert list. That is my gut. I am awaiting the TP53 in the other allele, He said if that is normal, maybe hold off on treatment. My doubling time may be an indication of increasing aggressiveness, though they do not treat numbers...
Venetoclax suggestion was more of my reluctance to begin a “ forever” treatment , though he does believe I will NOT have limited therapy even with Venetoclax. So I could always add ibrutinib and discontinue Venetoclax but not vise versa.
My Mom died with CLL, which makes sense now , because her markers were probably similar. Her disease got aggressive pretty rapidly and in the 90’s there was only chemo. She lived about 3 years after active disease began. She died 1 week after her first Fludarabine treatment. I know that was a different age in CLL history, but I think I have a deep fear of letting the disease get very aggressive.
That's a helpful video in that even among experts its not a clear choice. It appears to depend a lot on the individual so if Mom-e prefers time limited therapy, that would be a factor to be considered. Its a toss up, but its nice to have options.
the expert panel seems scared to make a firm choice. I have 2 doctors-a local hematologist and a cll specialist. I am on imbruvica/venclexta/and gazyva, I am not on a trial. It was a combination of both of them plus some badgering from me that has me here on this combo. I am aggressive b-pll and p17 deleted and tp53 mutations. 2 years ago it was go on imbruvica and prep for a transplant.
Now i am supposedly ,01percent and mrd-maybe. they can't agree on that, the pathologist that actually does the test thinks most likely mrd negative. the 2 doctors don't think so.
you get 10 doctors in a room and 10 different opinions.
The video is very helpful. There is some open discussion among experts. My CLL expert also said Venetoclax would probably not be time limited in my case. It was more about adding ibrutinib and perhaps stopping Venetoclax , but not adding Venetoclax and not being able to stop ibrutinib..
You should jump all over Dr Brian Kaufman’s CLL Society’s second opinion option. It can be done quickly and virtually. This is a tough disease with a rapidly shifting treatment paradigm. The more input from experts the better.
I assume you have acquainted yourself with this post: healthunlocked.com/cllsuppo... referenced earlier by Len/ lankisterguy and that the Johns Hopkins specialist was listed in the CLL Society doctor's list?
As you noted, it was the second specialist's "opinion that I should start treatment, albeit earlier than current criteria may suggest", but you now do have some ideas on likely treatment options.
With respect to the given criteria for starting earlier, as Dr bkoffman said in the past week, "A doubled ALC is the weakest reason to treat. in the absence of any other signs of symptoms."
The Johns Hopkins specialist seems to be more influenced by your degree of immune compromise along with your negative markers, which the current guidelines for commencing treament don't (yet?) incorporate.
Also, with regard to a coronavirus vaccine, the degree of antibody response might be of less importance than a T-cell response, but we still don't know. Certainly it appears that antibody titres from natural immunity responses to a COVID-19 infection only seem to last a few months and we don't yet know what happens in response to the front leading vaccination candidates. Vaccinations for us are I would consider unlikely until around mid 2021. You may well respond better to a vaccination when on treatment, depending on how many T-cells you have and how well they function without the CLL triggering T-cell exhaustion.
Finally, your first specialist is right to say the "Delay allows for approval of new agents and combination of agents". More importantly, there will be a better understanding of whether a combination, short term protocol or monotherapy will be the best fit for you. Monotherapy Venetoclax is less likely to get you to uMRD than a combination therapy, but it may be that monotherapy management may provide you with better management long term. You are in the difficult situation of not yet knowing the best approach for your particular variation of CLL with the new agents.
Thanks so much for your reply. Actually the doc at Hopkins is on the CLL list of experts. He really wasn’t too worried about my immune status, only that my first doc wanted to hold off on treatment anticipating a vaccine within a year.
Though doubling was about a year, it seems to be on track to be less than that now. WBC has gone from 38,000 to 50,000, so it does appear to becoming more active.
Hopkins doc also mentioned that combo drugs may get you to MRD, but not clear in data , if combo therapy also improves survival. So many things to consider.
When I was in Nursing school ( a hundred years ago) the mantra for drug administration was, Right Patient Right Drug, Right Dose, Right Route, Right Time. It seems like I am asking myself the same now..
I feel since your opinions differ so widely, I would go for a third opinion. I would use it as a tie breaker. Then go from there. if for nothing else than your piece of mind.
Third opinion may not resolve anything. I am not doctor, but don't wait too long, could be long road back and don't do too soon, shortens times to relapse. Only you know your body. Blessing going forward.
I apologize for the mouth full of marbles dialog, Yet -
I sense that at this point there is a bit more to the equation than what those of us in forum view can accurately qualify a decision influencing opinion with.
A paramount influence within a doctor's willingness to treat is what they perceive as the base line measure for your individual prognosis in relation to how your disease progression actually compares to the clinical models that provide outcome data.
This ever-changing data is available, and it comes from the published medical results used to approve drugs.
Another paramount influence a doctor considers in unison with the progression and treatment data is your evolving patient cohort, subject to your treatment goals, Then compared to their previous experiences.
Call this ideology the strategy to increase the probability for the most desirable "outcome".
Ask each doctor to show you this comparison on a data chart, and then expound on their perspective conclusion, "mine did".
Ultimately the doctor of your choice is the one to clearly and concisely convince you with evidences of merit that meet your measures. Take time to understand the measures respective to your goals, limitations, and expectations.
Although there is much to consider when choosing a doctor, one physician measure that has become important in my decision making is knowing if my doctor is up to speed with the most recent research data, and able to present it comparatively. This is a reflection on all of the other character elements.
It is a bonus if the doctor is able to communicate with respect the comparison benefit above the other opinion(s).
Keep after them, and one will convince you with the best evidence.
- And to include all the good ideas gathered herein,
I have CLL and am taking Ibrutinib. The side effects have been very mild. If I don’t drink enough the uric acid (dead cancer cells) will build up in my joints and cause swelling and pain. So I drink a lot. I didn’t want to take Ibrutinib for the same reason you mentioned, because it is life-long. It’s a bummer to be on meds for the rest of my life. However it does seem to be doing a good job of bringing the CLL under control with much by way of side effects. So there’s that.
I’m in a very similar situation. Have one well respected hemo that sees many CLL patients but is not a specialist advising to hold off, and the CLL specialist saying that it’s time. I could hold off a bit longer, but either way it’s getting close and is only a matter of time.
The specialist feels that it’s better off starting now than risking damage (spleen enlarging, platelets and RBC slowly decreasing, WBC and B2M increasing)
I am debating between limited duration V&G and Ibrutinib. Still waiting to hear re TP53 and have an appointment with my specialist in 3 weeks.
With Covid going on, I think my gut leans towards Ibrutinib with the knowledge that it requires less time in hospitals, less risk for serious side effects (high risk for TLS) and that I don’t believe that at this point Ibrutinib is a life sentence- once the research on combinations settles, i believe that duration will be limited.
Best of luck to you and pls keep us posted on what you decide!
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I ended up going with the third doctors opinion, he was the most persuasive of the three for me. 
Treated for CLL , one year ago
Questions for consultant?
Newbie with questions
How do you treat joint pain?
