I'm diagnosed as of April 2018, and like so many others in the Watch and Wait phase. I hate this approach, but I understand why it is taken. In essence the current treatments available are as dangerous as the disease, so the doctors wait until the enemy is deep in your territory. Sort of waiting until the opposing team is in the Red Zone in Football, before you bring out the Defense.
My understanding is that there are new methods under development, and some might be in Clinical Trials. These involve getting the gene sequence on your particular mutated white blood cells, and then genetically engineering your own T Cells to go out and hunt them down and destroy them. This sounds pretty exciting to me.
I live in South Florida in Lake Worth and am under care every six months at Lynn Cancer Center in Boca Raton. I've only recently read about these other potentially game saving treatments being studied, and want to get myself to a Center that would give me a chance to be considered for this type of approach. This means I likely have to travel, but I am able to and willing to do that if need be. I recently learned about Dr. Anthony Mato at Memorial Sloan Kettering, how he came from U of Penn and is leading the new frontier at his new facility. This leads me to want to see if I can become a patient of his, but I don't want to close my eyes to other options that might be closer; such as, Sylvester in Miami. Before I make an effort to see one or the other or perhaps a different center, I thought I'd ask for opinions here.
I know that Sylvester was just this year given NIH Accredidation; which means, they will now have access to Federal Funds for opening research on the gype of gene modification therapies that will be our future. Part of me says stay at home and try someone oat Sylvester, but part says to seek out a place that is years ahead of them in these studies already. What do you think?
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wizzard166
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wizzard, have you read the following discussion in re: to CLL and CAR T-Cell Therapy?
The therapy is still in an infant stage for CLL--as noted by the Drs' discussion in the linked article. But, things are moving fast in this field right now--so, who knows where it may be when you are treatment ready.
Your thought to get a second opinion (now or as time goes on and closer to treatment possibility) is a good practice to undertake. We each really do not know how things will unfold as we Watch and Wait and (dragging our feet, get older) so it is good to have an experienced CLL hemo/onc on our team.
Some have been able to stay with the Dr. who diagnosed them, but also have a more practiced CLL Dr. they might see once a year--or just for 2nd opinion and consultations, with the 2 Drs. cooperating. Others have changed to the 2nd opinion Dr. entirely. It can work either way, if you have the means and are able to travel.
cllady01 Thank you for the link to the discussion on CAR T therapies. I havent researched this yet, and I just started reading the transcript from the link that you sent to me, but this transcript and the others it will lead me to will help me immensely.
My Brother Matt is an Opthalmologist, and I was discussing my situation with him over the recent holiday. He felt that being seen at a highly ranked Center, and one in which research on the new therapies was being done, would give me much better odds than not being there. He mentioned to me that since the Human Genome Project led to the release of the entire sequence in that Genome, that advances in medicine have begun and are increasing at an amazing pace. He mentioned a book by Dr. David Sinclair called Lifespan, that I'd likely find fascinating, and enrouraged me to look into the new gene altering studies as related to my CLL.
What I've begun to read in the beginning part of the transcript you led me to is a bit discouraging, but at the same time encouraging. While true this type of therapy is in its infancy, in particular with CLL, as Matt said things are progressing rapidly and our illness can go slowly. The most discouraging thing I read, and i've just started reading, is that our T Cells are dysfunctional; thus, altering them might not lead to much success. Then again they are talking about using other hosts T Cells, and that likely has alot of merit. Anyway thanks for the help in directing me to great info.
I have a couple of thoughts, wizzard. I don’t think I would describe watch and wait exactly as you have. We watch and wait because there is no proof that treating early helps us live longer. In most other cancers, early diagnosis and early treatment is key to survival. Not with Cll.
That paradigm was based mostly on chemo treatments and might change with the newer agents. It is possible that there could be a survival advantage to treating early with ibrutinib and or venetoclax. There are clinical trials considering this. For now, watch and wait remains the standard.
Car T is still experimental with Cll. For some, it can be a very difficult treatment. There are so many drugs today that treat Cll effectively with so much less risk than Car T that I would be surprised if you would even qualify for a trial. A combination of ibrutinib and venetoclax might even turn out to be curative for some.
I am excited about the long term prospects of Car T. It would not be my choice for a front line treatment though. It’s too risky and there are too many easier to take and more proven alternatives. It’s also a very, very expensive procedure.
If there is a trial for treatment naive patients I would like to read about it. They are making progress making car T safer and cheaper. It might well be a treatment I need down the road.
Thank you for the input, and admittedly I know little about Car T. I think the reason that watch and wait doesnt decrease the success rate over earlier treatment, is that the only treatment available until recently was straight Chemo. Starting Chemo too early likely hurt the patient, because Chemo kills both good and bad cells. Lets face it, that is why they waited until it was absolutely necessary. Earlier treatment with more aggressive cancers obviously has greater percentage success, because without that early treatment the more agressive cancers would unfortunately end things very quickly. Having the treatment, despite its deleterious effects, at least gives those patients a chance; thus, higher percentage rates of success.
Any way you slice it, cancer cells arent good things to be growing in anyone. Letting them grow without any attack back at them, is like the football team not bringing in the defense until the opponents offense is already at the 20. The problem is not that early diagnosis and treatment is a bad thing with CLL, its just that the existing treatments until perhaps recently havent been very attractive. I'm too new and lack the knowledge that the more experienced patients already have, and i will change that, but I'm sure my overall logic that earlier treatment (with successful treatments) is better than waiting. It does sound like Car T is not where it needs to be for us CLL patients yet, but hopefully for all of us present traditional treatments are better than what came before this. Also hopefully advances with engineering our own immune system will lead to the absolute cures we deserve.
Wizzard, it is hard for all of us to wrap our brains around the watch and wait concept. Intuitively we believe early treatment is better.
With Cll, treatment can select for a more serious strain of Cll. The analogy I have used in the past is that of spraying your yard for weeds with an herbicide. The herbicide kills all the easy to kill weeds, but makes room for the really bad weeds to flourish that do not respond to herbicides. When our Cll returns after we treat, as it most often does, it’s usually a harder to treat Cll. TreatIng early could accelerate the growth of our bad Cll cells.
It is possible the newer agents will not select for more virulent Cll like chemo does, we don’t know that.
We have very smart Cll specialists all over the world looking at this now. The watch and wait paradigm might well change. But when you say “you know” watch and wait is wrong, with due respect, you really do not know. You and I can’t know more than renowned Cll specialists. Just because it’s counter intuitive doesn’t make it not true.
We most all advocate on here for people to get second opinions and to get a top Cll specialist on their team. I think you should do that. But I wouldn’t substitute my opinion for that of my specialist doctor and insist on treating early if my doctor recommends against it. That’s just me. We are all ultimately in charge of our own care. If you are that sure you should treat now it’s your decision, that is, if you can find a doctor who will prescribe treatment before your doctor thinks it is best for you.
I appreciate and understand your answer to my comment. I don't disagree with your overall philosophy, and still say that early treatment would be better than watch and wait; however, my statement needs to be modified. Early treatment is better than watch and wait; assuming, there is a very effective early treatment available. Right now there isnt any effective early treatment available, and that is why top doctors are using watch and wait. If there was a very effective early treatment we could afford ourselves of, I can't imagine any good doctor would still say watch and wait is a good idea. It is simply the best choice we have today, but it just frustrates me.
Watch and wait can be hard, that's why some call it watch and worry. The idea of letting our cancer grow while doing nothing about it seems so wrong having grown up believing our survival when we get cancer depends on how early its caught.
There is a silver lining for us, I guess. When people get diagnosed with late stage other cancers, often its too late. With cll, our survival chances are usually not hurt being diagnosed with later stage cll because we would not have treated had we found it earlier anyway.
We do a lot of effective treatments for cll, by the way. I am on one of them, ibrutinib. What I do not know is if I would be better off today had I started ibrutinib at diagnosis.
I would not be shocked to learn there is an advantage to starting ibrutinib or veentoclax at diagnosis. That is among the things they are trying to figure out with the new drugs. As of now, as I understand it, there is not enough data to justify changes he guidelines as to when we start treatment.
Thank you Jeff. I'm sorry if I'm a bit obsessive. When I've attacked on this site the concept of Watch and Wait, it isnt because of my failure to understand that there isnt any other more sensible way to go. Of course I understand that. I just don't like it.
When I was a youngster I wrote a paper in school on Watson and Crick, and that began a lifelong interest in Biology. I believed early on that Genetics would one day cure everything, and many decades later I see the beginning of the proof of my early beliefs. Now I'm in a situation, as everyone else on this site is too, where I just wish that cure was here right now. I learned years ago too, with difficult things like this is, to take things one day at a time. Keep up the hope, never give up, and keep believing. I'm all in with that.
One day at a time is a great approach with cll. And a cure for it might be here right now.
A pet peeve of mine is how so may articles on cll start of with describing it as an incurable cancer. A lot of very good cll doctors repeat that mantra when they begin their presentations.
It's just not true. Some people are cured of cll by stem cell transplants. Some are cured by fcr, and its not an insignificant number. I believe most experts, if challenged, would agree someone with a ten year remission with their cll is likely not to have their cll return. We have people with 20 yr fcr remissions. The curve for when people relapse after fcr pretty much flattens out at ten years.
My doctor told me he expects the remission rate with the new drug combos to be greater than with fcr, an opinion I give some extra weigh to since he was one of the founders of fcr treatment.
So I choose to believe a cure is here. We just need more data to prove it and we need it to work for a larger percentage of people. If people with fcr are getting twenty year remissions, its not unreasonable for me to think a good percentage those in two year remissions with ibrutinib venetoclax will never relapse.
No I'm on Watch and Wait. I got interested in looking into Car T when I read about the research they are doing. Everyone knows or should know that the breakthrough with tghe Genetic Code happened, it opened the liklihood that cures for every type of cancer and other diseases are around the corner. Around the corner unfortunately is in a time frame however that might not see your and my lifetime; however, it will be there. I'm hoping that somehow big breakthroughs happen in time for me and the rest of us on this site.
You have had some excellent replies to date, in particular from CajunJeff and Cllady01.
Because of the heterogeneous way CLL impacts our T cells, it might be that CAR NK will work best for CLL.
ALL treatment drugs hit all B - cell's, healthy and CLL. Newer drugs do better target CLL over B - cells. All treatments also lower our immunity (neutrophiks) and generally our platelet and red blood cells, so watch and wait may still be the right choice for most of us. We need evidence from clinical trials.
Once again thank you very much Neil. I have begun to learn from you and others on this site, and once I get going I can probalby be a good contributor to help others here too. cllady turned me on to the Patient Power web site, and i became a member yesterday. I read the entire transcript of the presentation on their site about where we are today with CAR T. It was a bit depressing when I read that the problem with CLL patients is that our T Cells are innactive. I had no clue about this anomaly. I don't quite understand why the T Cells would totally go non functional.
In January 2016 I was hospitalized with double pneumonia, and the admitting doctor called in a specialist because my T Cells were at a level as low as Aids Patients in the last stage of that horrible disease. He asked if it was alright to test me for Aids, and I knew i couldnt have it and of course said fine. I tested negative, but the fact that my T Cells were so low led them to suggest I see an Immunologist right away. After Discharge I instead contacted the local Cancer Center (Lynn in Boca Raton), and a Hemotologist/Oncologist there began following me. Within a couple of months my T Cells came back to normal level, but my white count kept climbing. Lately I seem to be sick every week. By sick I mean sniffles that dont develop into a full cold, until last week. I also am having alot of gastro irritation. I'm in watch and wait, so it doesnt make sense that my immune system would be so weak; unless, there is something else that I have related to Immune System disorders. Any input on this situation?
Sorry if I’ve missed this elsewhere wizzard but have you had your immunoglobulins tested because you may require IVIG to boost your antibodies, specifically your IgG. Deficiency in our acquired immune system can lead to frequent infection which is why some of us require IVIG to counter a condition called hypogammaglobulinaemia. My immunoglobulins became depleted long before I needed to start treatment.
I really think you need a bit longer in the game to get a better perspective about the treatment landscape. CAR-T isn’t for the feint hearted and the neurological and physical issues can be brutal. It’s largely used for refractory and relapsed patients and I’d be seeing it as the last resort not the first. Too many other highly successful treatments in between (I’m on I&V).
Newdawn: Good point on immunoglobulins. Especially with the Wizard’s history of illness. I think there was another member (Peter) who Adrian in the U.K. advised to have his immunoglobulins tested and to request IVIG if they were low. Peter asked his doctor do this and the test found they were In fact low. Peter then asked for and received IVIG infusions and he now reports he is like a new person.
Wizard, another important thing to remember is this is a highly heterogeneous disease. For example, I was treated in 2018 with 6-rounds of BR ( it was the wrong treatment but that is a whole other conversation) after my bone marrow was found to be 92% infiltrated by cancer and my hemoglobin was tanking. Surprisingly, I haven’t had a cold or any illness for that matter in at least five years. Thankfully, except for during treatment, I also haven’t experienced any fatigue. Go figure.
Member, Aussie Neil, has been fighting a weakening immune system for 10-12 years but he hasn’t required any treatment until just the past month or so. It hits us all so differently it sometimes defies logic. The takeaway for you is to understand that the complexity of the disease is almost beyond comprehension so try not to make too many assumptions. The informed patient uses this forum to understand issues and prepare questions for appointments which saves a tremendous amount of time. I do not know where I would be without this site. It has been a Godsend. I hope you get as much out of it as I have.
Thank you Hope and everyone else who is helping me with great input. I started thinking a few days ago, after fighting sniffles for three weeks that ended up with some form of upper respiratory infection (which thank God I appear to be beating) and some form of gastro problem, that I better get to see an immunologist. So I Googled Immunologists Boca Raton, and all that comes up are Allergy doctors. I thought I could find physicians who mainly see patients with immune system disorders, but I guess I was wrong. There must be doctors of that type, but now I'm not sure how to find one. I wanted to make direct contact, without having to go through my Primary or even my Hematologist, but I might have no choice.
Thank you very much for your input on my immune system. I seem to have had immune system indicators for a long time; way before my white count started to climb. Most of these indicators were my own observations of myself and the frequency of getting sick. I haven't been sickly lifelong, just seems that I would catch things more easily than others. I've had a lifelong weakness with respiratory with Bronchitis every year multiple times as a young kid, and I've had Pneumonia five times in my older years. Then when the inpatient stay in 2016 showed one T Cell only, and they freaked out thinking i had to have AIDS, it scared the you know what out of me.
I asked my Brother Matt (i sent him a copy of my Flow Cytometry and FISH from April 2018 and more current blood work) if it was possible I didnt have CLL, and instead have some horrible immune system disease that can confuse a hematologist into thinking it was CLL. He said no, that I clearly have CLL, and also said I need to see a top specialist soon. I don't know enough about other disorders and "diseases" of the immune system, but isnt it possible I have two seperate and wicked disorders?
It is possible wizzard but highly improbable in your case. The flow and fish have identified your particular ‘flavour’ of blood cancer and it’s CLL.
I think you’re possibly over thinking on occasion causing a cascade of anxiety and unjustified fear. We all do it at times but be careful not to let it absorb you.
Thank you again Newdawn. I have a lifelong history of non stop thinking, and it can have its deleterious effects; however, it also produces some high end creative thinking and results. Overall with this situation it is likely hurting me. Its just that I love life, want to stay here, and if I could do so I'd take the battle to this insidious thing attacking me and not stop until it goes down permanently. That is why this Watch and Wait thing is so negative to me; I want to go after it. I am realizing that I have no choice, and I'll have to back off a bit, but its also what is driving me to pick out and obtain status with a top notch Center and clinician. At least I can accomplish that part of the overall attack plan.
I know and accept that CAR T is not an option for me now. I did read the total list of adverse side effects, many of them brutal and fatal, so I understand it will have to be a choice somewhere in the future; hopefully, advances and improvements come quickly.
The thing with my immune system is a whole different matter, and we already know it is altered in a negative way, so I should begin to do something about that.
Your thought process is rational albeit inaccurate in my opinion. The way I view things is stalling treatment is the preferred course of action since the treatment landscape is evolving so quickly with some Specialists starting to think a cure may be in reach. The longer you are able to wait the higher the probability the treatment you receive will put you into deep remission.
HopeME I know you are right, and I've never questioned the Watch and Wait approach as the best alternative currently; unfortunately, it depresses me. I know there isnt a safer approach; however, I wish there was one. In our near future we will have a battlefield on which we can go after the bad cells that we have immediately and safely, and when that day comes there will be no such thing as Watch and Wait. There is no difference in the thought process between you and I. All I am saying is that if the cure you reference was here now, we would not be Watching and Waiting; instead, we would attack. Your thought process simply is saying that I should be happy and realize that future methods will be better and safer, so don't rush into today what is inferior and not as safe as what will be here tomorrow. I do agree with you.
Agree. There is always that point of time that we just have to move on and make a decision based on input available to us and refrain from harping (for lack of a better word).
Of course you are right poppy. It is part of my lifetime personality makeup, so it isnt going to change any time soon. My mind never stops working, so i have always had difficulty sleeping through a full night. The darn mind just won't quit. It has led me to be pretty successful in the type of work where mind power is important, but I stress out alot and easily. Everyone has there positives and negatives, and I guess over thinking things is one of mine.
Keep in mind CAR-T is risky, and would very likely not be your first treatment path. If you are willing to travel, I would say get in to a local doctor first, and then try to get an appointment with Dr. Byrd in Columbus. I know Dr. Mato is up and coming, and I saw him first at Penn but went to OSU for what was a cutting edge clinical trial in 2020 instead of taking Dr. Mato's advice which was to do only ibrutinib (I am 17p among other things - very high risk). So while he was in charge of clinical trials, he took a very conservative approach that was in alignment with the data at the time, but 4 years later, I think the data suggests I did the right thing for me.
Thank you ellen. I'm just learning about all of this, so my knowledge on where CAR-T was at with respect to effectiveness isnt there. Cllady turned me onto to a great Panel Discussion on Patient Power web site, and i did read the entire text, so now I'm catching up. It is true that CAR-T is in its infancy and has side effect problems, and currently CLL works least best with it, but I have hopes that things will improve at a good pace. The problem with its use in CLL is that our T Cells become non functional; thus, genetically engineering them to target the mutated white cells is somewhat of a lost cause. The Panel Discussion however did discuss new ideas to use a different host's T Cells, and genetically change them for our specific mutated white cell genome, and then re introduce those new Ninja T Cells back into our blood stream. Pretty neat thinking, and it shows how we are likely around the corner from this method becoming the most effective one.
Dr Mato is awesome and MSK is one of the best centers. Some of the medications (and combinations) are as good, if not better, than chimeric T cells . We are living in exciting times and I am living proof you can get the help you need. It all depends on your molecular profile, your other lab results and radiologic studies.
Thank you very much Lovecures. I read on Sylvester's site that they just this year got NCI Accredidation, and that will bring in Federal funds to start research programs and trials. I live in Lake Worth, which is about sixty miles from Miami, so part of me is wondering if I should make my Center be Sylvester; as opposed, to plane trips and hotels to make MSK my choice. On the other hand if MSK is likely to be many years ahead of Sylvester, due to having that accredidation for decades, maybe I ignore the cost and other travel difficulties and choose a place like that. I'm pretty knowldegeable about hospitals and health care, but I don't know how to make this call
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