CLL Support Association
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Experts talk about a future cure

I listen to cll Dr’s online including my Cll Dr talk about a cure just around the corner. My question is where’s the study that’s giving them this information. They just smile and say we believe it’s just around the corner. I love to hear that but it’s like a secret they don’t want to let out of the bag. Thanks John

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I have a son who is foolish with money. So I told him that his dad is retiring Jan 1 and we have watch our money. So, he plays that computer game with all kinds of ppl. One happened to be ABOVE the sales ppl for this drug company. And they have the cure!! And he wants his dad to be in a free trial. He hasn’t spoken to us since we said we had been offered that med in a free trial and turned it down. His dad is 71 and sees doc every 6 months and has no symptoms except a few wonky lab tests. He was offered the free trial by Moffitt. Dr. Chavez. I can probably look the name up tomorrow but I had a bunion taken off by a Rabbi today. And he is also a Podiatrist who uses laser. In Orlando. Moffitt is in Tampa and we live in between.

Best.

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Oh Hello Scott

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Hello Catskillview, I am not Scot but Spacee (Linda). Scot uses the finger wrapped in a bandage, last I saw.

Best to you!

Linda

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I have to answer tonight. I have a disorder (circadian rhymn disorder which means I won’t wake up til noon. It was offer about a year ago this month.So any trials Moffitt is offering now is not it. You had to be older and treatment naive. My husband also has the bad markers 17p- and another one. I believe the name of the drug was Obiinutuzab but could be wrong. I don’t see another one that seems familiar. Since hubby improved without treatment, I lost track of things. So very sorry.

Linda

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Several (!) combinations (Ibrutinib + Venetoclax, Ibrutinib+ Venetoclax + Obinutuzimab, Venetoclax + Obinutuzimab, Venetoclax + Ritximab, Ibrutininb + FCR - the list is incomplete and does not include acalabrutinib or other agents still in the pipeline) get a lot of people - in first line treatments, sometimes everyone - to MRD negative. They do so - and this is important - very quickly, which, together with the high MRD- rates, is an indicator that these are extremely potent, efficacious treatments, more efficient than anything seen so far. These treatment protocols, however, haven't been around for long. To prove you have cured someone they need to stay cancer-free for the rest of their lives (or, in oncological terms, for ten years or more). The trials for Ibrutinib + Venetoclax, to name but one example, have run for less than two years (correct me if I'm wrong - definitely for less than five) - not long enough to be able to prove that this combination is curative. So, in other words: a cure/the cure is probably already out there, but it's still in camouflage, not yet recognizable for what it is (excuse my English, non-native speaker).

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Thank you for the information. It makes sense to me when it’s put that way. John

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I do believe that it was the Alabrutnib that BettinaB mentioned that was still in the pipeline. The Above Salesman person who talked to my son

thinks for sure it is the cure. Me, not so sure. BUT there are a lot of things in the pipeline as Chris said. So, Maybe soon there will be a cure OR at least something that is take quarterly or annually. That still puts seeing the doc, But I am hopeful. I am just no so sure about the “above

Salesman” pushing for my husband to be on a free clinical trial is the one for him. He was not eligible for FCR (chemo) due to FISH results. He is in the poorest outcome. But he may very well be indolent. Live his life

out without treatment.

I surely hope the very best for the younger, the ones who need to work,

And a family to support. And I hope it is coming very soon.

Linda

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Some of the treatments being mentioned in this thread seem to do as well for people with 17p and IVGH unmutated as they do for those without those challenges. This is probably why a clinical trial was mentioned as opposed to FCR which would probably not be used given your husband’s age and type. I, myself, am in a clinical trial of Acalabrutinib, Obinutuzumqb, and Venetoclax. After two cycles of Acalabrutinib and a single cycle of Obinutuzumqb, my blood test results have returned to normal. I have not yet started the Venetoclax.

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Yes, I do agree with your opinions. My hubby’s last year wasa year to go to finish up his partnership with some very large clients. He would not drop the ball with them. And he has had no one to replace him who could handle these large audits. That played a lot into the decision. He and his sister (stage 4 lung cancer and long term survivor because of MD Anderson), they approach cancer with strong denial. He has no symptoms just bad numbers. So, he would not even consider treatment with no symptoms. I did not say he and his sister think as other’s do. The denial is odd, I admit.

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Oh, denial can marshal strength, but then it’s time to get on with things. Feel free to share with him that I had a single side effect on Acalabrutinib. A headache.

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Oh that IS great news! I think he was also concerned with not being able to play golf twice a week but a headache would not stop that!

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Well, then! You can also let him know that I, too, am a golfer, except that instead of playing with a ball and clubs, I play a sport known as disc golf. We use what are essentially specialized frisbees. You throw them. Also, there are no carts. You have to walk everywhere and the courses are usually hilly, integrated into the woods. On Acalbrutinib, I played three times a week. That's more than five miles of walking each time, along with all the throwing. I also played in two tournaments. The only thing I felt after starting Acalbrutinib was *stronger*.

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That is great!!! I do think getting outdoors and exercising strengthens the immune system. He doesn’t walk the 18 any longer because his buddies have developed knee and back problems. He does prefer to do his own yard work in Florida so at least that is something to strengthen him. Is the disc golf done in the UK?

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Yes, there is disc golf in the U.K. Gardening is good, as is anything where we move. Movement moves lymphatic fluid.

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Cure would seem to depend on your genetic makeup as the people who had the most favorable genetic make up are approaching 15 years with FCR Treatment were someone with a less favorable genetic profile won’t do well at all

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Won’t do as well on FCR. We just don’t know yet with the combo trials.

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Define cure in CLL? Let's start with that first.

~chris

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Cure to me would be you no longer have sll/cll cancer and it wouldn’t come back.

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Everyone with CLL , would be a goal, but not certain it's there yet for some... 10-15 years is already sometimes possible for FCR mutated in good health.

It s very complex question...actually. I think it will be a topic of discussion at ASH in December

~chris

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Thanks Chris , the 10-15 years your referring to is that time after treatment or time from diagnosis along with treatment ? Thank you John

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After FCR for about ~30% of 13q deleted and mutated, with no other markers...

They may have longer data from CLL8 trial in 2007 at ASH.. have wait and see...

Here is a discussion on the topic

ashclinicalnews.org/topic-c...

~chris

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Hi Chris, for a person with 13qdeleted with markers of 17p and 11q will not do so well?

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It depends which FISH marker you have is dominant... you need a CLL specialist to interpret that result...

~chris

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I think for young, mutated 13q without other bad markers the cure rate is much higher than 30%. My definition of cure is 10 yr plus remission.

cll-nhl.com/search/label/fc...

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Technically if you ever relapse it’s not a cure. And knowing someone will never relapse is never possible. All you can say at the moment is some people

Are getting LONG remissions which are what I call a “functional cure”. Ie for example more so if you are older. If you are 75 and it looks like you will have a 15 year remission I think you’d be pretty happy with that. If you are under 50 less so. Tho of course we are now in the days of multiple treatments. For most of us it’s better to think of this as a chronic illness which can be successfully treated and contained, but which we should be aware may well come back. Meanwhile let’s enjoy the remissions we do have.

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I don’t agree that because a relapse is “possible” that people now enjoying 20 year remissions are not cured. If cure means there is zero chance of a relapse, then no one is ever cured of any disease.

I think the consensus opinion is that those who get 20 year remissions, and there are people just now reaching that number, are unlikely to ever relapse and are in fact cured.

But I think we all deal with the long term potential of our cancer differently, and there is nothing wrong with that. I don’t agree that at least for me personally, resigning myself to having a chronic disease is what I am going to do. People are being cured as far as I am concerned. I am very hopeful one of the new combos cures me and I don’t think that is an unreasonable hope. Many top Cll experts think we are on the road to a cure. Some don’t, we will see.

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That says it for me too!!! That's a cure!

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At age 60 I'd happily consider a 20 year remission a "cure." :)

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I would call that a functional cure. Or in . Others words it’s almost as good as a cure for that person. But if they have detectable disease, if they have resudual fatigue, is it really a full cure.

To me there is a critical difference about a cancer diagnosis. You learn that some of your own cells are out to get you. That much is the same in all cancers. You learn a bit more about their game plan slow or fast. What damage they likely to do on the way or have already done (you almost certainly ain’t never getting a completely normal immune system back as far as I’m aware) there is a huge desire to cut out or otherwise kill every last cell in our body’ that is cancerous. We probably can’t do that in almost any patient. But in those who we can’t even detect it at all in blood bone marrow and nodes it probably doesn’t make much difference as the tiny numbers of hidden cells may grow so slowly they just can’t come back to causing a problem. So you can see someone can be in a complete remission but not technically a cure. The link explains it better.

But it can be worse than that we can have clear evidence of disease and have a partial response but if that gives a good quality of life (eg on ibrutinib) and the Ibrutinib succeeded to contain it for years and years in this case but never actually got to a cure. Didn’t it contain it rather well but not cure it?

Sorry to sound picky. I think this article makes a lot of sense of this point: cancer.org/treatment/surviv... much better written than my witterings.

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I think I am not so concerned about a cure. At 32 I just want to be sure there are enough drugs aligned to keep battling it back for a decade until even better treatments come into the picture.

Maybe it is since I am early in the downward spiral but with the onslaught of terrible things in the news or what I watch happen on nature shows I feel incredibly lucky/fortunate. I think it was after watching a poor wildebeest stuck in the mud being eaten alive by hyenas and the news report of that lady getting half sucked out of plane window I started to feel less concerned. Dark but it put things in perspective for me.

I get bummed watching nodes grow and not seeing numbers I like monthly on blood counts. But in the scheme of things being spared violence in this particular disease is a plus.

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I would agree with that. At 47 I’d like 30-40 years 😉

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I do believe it was the med BettinaB mentioned Alabrutnib. I, personally,

Just did not believe what the “Ablove Salesman” level said. They needed ppl for their clinical trial. I also believe that hubby may be indolent and live out

his lifetime without treatment, Possibly.

I do have a lot of hope for times of remission for patients, at least. Does that make what you want of being rid of CLL. No. But it does give a lot of

Lifetime for the younger, those who need to work, and those with children

The best to you all who struggle with CLL.

Linda

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I misspelled the word BettinaB mentioned. Acalabrutinib is the one I think

was offered as a free trial.

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Acalabrutinib is an updated version of Ibrutinib. People are getting great results on it with far fewer side effects than Ibrutinib. You words read as if you are suspicious of “the salesman.” Suspicion might leave your husband passing up an extremely effective and tolerable drug. I hope your husband will discuss this with his CLL specialist.

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You are correct, I am suspicious of someone son met playing Fortnite or some such thing. Moffit may still be recruiting. He has an appointment next month. But also his contract with his clients is until Jan 1. We shall see what his labs are like. Those may be persuasive. His doc (whom we both like) spent 4 minutes with us at the last visit because his labs had improved and we show no sign of fear around him. It was a very busy day at Moffit, also. But I will tell him about the only symptoms. Headache. Sounds great.

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How long have they been saying cure? In the past decade years months, how long have they been saying that? I was reading one of Aussies post was about basically they don't want to give us cures because it's a money making business to keep us on meds.

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I hope with all this new treatments out now prove to provide progression free health problems for decades. And I really hope even more that these new drugs they hint about come very very soon. Another issue is the cost of the medications and what insurance companies are willing to pay for. At a 150,000 a year for one drug is just crazy. What about the people that don’t have insurance, how are they going to pay for this treatment. I’m very happy these drugs are there to provide people with a future, I just hope all that need them can obtain them.

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True. The insurance companies decide whether you'll live or die. The money grubbers between you, your doctors, your pharmacist and the outcome of your disease.

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If the insurance won’t pay for the medication isn’t the grants that people can get to obtain the medication ? I only ask as I’ve heard people talking about this in the past.

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Yes, but if those grants were not there, the insurance company would still turn you down and we'd be without it, because the insurance company determined that you're not allowed to have that drug. Just another thing about these companies I don't like. They determine if you live or die.

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If you’re in the U.S., your vote in the midterms can help make it possible for *all* U.S. citizens to have access to such treatments. Or, we can go back to the days of “pre-existing conditions” when I, for one, would be left to rot.

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A company that could make billions of dollars on drugs that keep CLL at bay will be quickly put out of business by a company that comes up with a drug that is a cure.

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If you are referring to one of my posts, I think you have misread who said what. I have regularly countered such statements where someone has claimed that profit is preventing progress to a cure, in particular claims that "Big Parma" are holding back. Basically such arguments can be demolished by the following facts:

1) If "Big Pharma" is in control, why is "Watch and Wait" standard

management protocol?

2) Why the continuing development of second, third, etc. generation drugs that are more selective (less side effects) and generally greater effectiveness?

3) Why all the clinical trials of combination drug therapies which aim to get away from the financially unsustainable indefinitely maintenance therapies and hopefully provide long remissions, even cures?

We don't have our CLL managed by drug companies, but by doctors who are required to declare any potentially conflicting interests in their research papers. Sure pharmaceutical companies have shareholders that want to maximise their investment returns and for profit companies will do what they are legally permitted to keep investors investing, but we do have checks in place that we need to use and review to ensure we have a process that rewards all stakeholders. It's not perfect, but per the above, it is working to our advantage, a process I have personally seen dramatically improve the treatment landscape in the 10 years I have been following new developments.

Neil

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Three excellent points on "If big Pharma is on control." Knocked that one out of the park.

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Neil i did read this In one of your post, you didn't say it. But several people did claim that about pharmaceuticals. I liked your response to me on this post i rather believe what u posted on here. Thanks Neil be well.

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You said “Big Parma” in your first paragraph. Mmmmm cheese. Hehe

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Lol I didn’t notice

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It's very unlikely that Acalabrutinib is a 'cure', however you define it. It's a BTK inhibitor, just like Ibrutinib but more targeted, so it does a lovely job of clearing CLL from lymph nodes but not killing them. Hence both drugs are considered lifetime drugs.

I think it's the combination therapies, just like in HIV, that will do best in getting patients to MRD-, possibly considered a cure for some. Remember to be a complete cure you have to kill essentially every CLL cell in the body which is a tall order. OTOH if you reduce the population to a few hundred cells it may take 10 to 15 years for it to grow back to where it's a problem.

There is a high hope that some form of CAR-T might lead to a cure by training your immune system to kill all CLL cells - forever - just like once you get measles you don't get it again.

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I also have CLL, but have been in remission for two years, but watching my WBC creep up with every check up. It is frightening, but my faith in God’s mighty work is stronger than the promises made by doctors. I trust my doctor, but do not believe there is a cure to any disease right around the corner. If that was really the case we will never benefit from it because it will put too many people out of a job, make the rich no longer rich, it’s just not going to happen! Don’t get me wrong by sounding negative, my positive attitude and faith is what got me through the treatments, but I just don’t believe it will be in my lifetime. The progress of treatment for CLL has improved in the past 15 years, when my mother had the same leukemia I have, but I don’t see a cure for any type of cancer. People laugh at me when I tell them my thoughts on why we have so much cancer: going to the moon, microwaves, plastics, cell phones, and many other things that we have allowed to take over our lives. Good luck! Keep a positive attitude and trust in God to walk with you every day.

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What if the prediction regarding HPV caused cancers comes true?

healthunlocked.com/cllsuppo...

Will that change your opinion?

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Hello AussieNeil! I can't truthfully answer your question because I don't think the doctors/researchers/scientists/etc. are sure about the HPV themselves. I've had the shingles several times, even after the injection. Fifty years ago shortly after I had my first miscarriage I had the god awful rash, beginning with headaches, skin burning and then blisters, always on the left side of my face. It always last for about two weeks, been to many, many doctors, but no one has an answer. It always comes after my body has experienced stress, again always on the left side. In the past five years I've had skin cancer in several areas. What is this? Not even the doctors can answer! It almost puts me in bed because of the scalding feeling of my skin and the stress to my body. I don't know if this HPV is just something else for us to worry about without getting to the root of the real cause of cancer or if it's just another research for all the above professionals to use as an excuse. When my mother started getting sick in the mid 90's her doctors wanted to blame it on some of the most ridiculous excuses that would top the most ridiculous in medical history. In the end she was diagnosed with CLL. Same as with my late husband, The treated him for reflux for months, until he had a heart attack, a tumor burst through his rib cage and they diagnosed him with Multiple Myeloma. Spelling???? So with all of this this you should understand why I have my doubts about a cure for anything, especially cancer.

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Given your personal experiences, I can appreciate your distrust. However, we need to be aware of how our personal experience can bias our perception and look at population statistics to find the truth - and it is positive in general with CLL developments lately looking very positive.

If you look at Figure 2 from this report by the Leukemia and Lymphoma Society, you can see how 5 year survival rates have all significantly increased for Myeloma, Hodgkin and Non Hodgkin Lymphomas and Leukaemias between 1960 and 2013: lls.org/http%3A/llsorg.prod...

Probably the most notable improvement is in Chronic Myeloid Leukaemia (CML). If you look at the SEER statistical facts for CML, there's a drop in the death rate from 1 per 100,000 prior to 1998, to 0.3 per 100,000 in 2015. That's a 70% reduction!!

seer.cancer.gov/statfacts/h...

That decrease was largely due to the approval of Imatinib by the FDA in 2001, which changed the outlook for most of those diagnosed with CML from having a life expectancy of a few years to a normal life expectancy.

Neil

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Preach it, Neil!

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I agree with all that, but my husband and I think it's the food..........preservatives in everything we buy, chemicals, how they raise beef, chickens, fill them with antibiotics, other drugs. A lot of organic foods are not really organic, etc. etc.

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It can certainly be the food! I will only purchase fresh uncooked chicken from a local poultry company that I know the background, but even this company is not liked it was ten years ago, same as with the beef, pork. I actually stay away from organic foods, that's just another way to sell for higher prices. I over wash everything I but to cook. We don't receive the treatment from our doctors that we should because while they are talking with their patient, they are also on their cell phones and too busy with their other responsibilities of lectures, books, etc., where they make real pocket money. God bless them! They put in too many hours and I know they are also stressed!

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You're so right. I live next to a so called organic farm, so I see what goes on first hand and how phony the whole thing is. What my husband and I grow on our land is more "organic" than what they have. We use no poisons or fertilizers of any kind. The organic farmer is allowed to use poisons - as much as they like!, and the fertilizer they use is not dried but fresh from the pig sty. So, no thanks! Maybe all organic farmers aren't this bad but I don't know that so it's not worth the higher price to me! We'll grow what we can.

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I do believe in part it's the food we eat but lots of people live into their 90s eating wherever they want and don't get cancer.

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Yes they do. And again I think when they were growing up and were young adults, etc. the food was still good with very few preservatives but mostly a lot of them raised a lot of their own food and canned it. Same with the meat, raised it, smoked it, raised chickens for eggs, meat. They were much more self sufficient than we are today. I don't know when all the preservatives and the GMOs came into the food production, but it went downhill with that.

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Neil,

I pray for a cure but the conspiracy theories sometimes resonate.

I always say, when the crazy rich stop dying of cancer, you’ll know there’s a cure. Till then, we’re all stuck with it.

Sorry, not an eternal optimist today. Still have this cold hanging around.

Jeff

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Yeah - a bad sign when Paul Allen died...

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Skeptic that I am I wonder.... with the extremely high cost ( to the patient ) and high profit ( drug company ) of current meds ( Imbruvica etc) why would the drug company even be talking about a cure.

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Because the company the does will receive the mad rush of investment that will come out of the coffers of the companies that offer only maintenance treatments. Also, the talent that wants to be associated with “cure” will flock toward whichever company has the best pipeline. Investors are short-term thinkers. They will rush to invest in curative potential.

Occam’s Razor makes conspiracy theories more attractive than scientific and free market fact.

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