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slipslidingaway's Journal
slipslidingaway's Journal
October 21, 2016

As Announced Yesterday By Vice President Joe Biden, LLS to Lead First-Ever Blood Cancer Master Trial


"Going on the offensive against one of the most daunting challenges in cancer, The Leukemia & Lymphoma Society (LLS) today announced the launch of a groundbreaking, collaborative clinical trial for acute myeloid leukemia (AML), a deadly disease which has seen few improvements in treatments in more than 40 years.

Beat AML was announced yesterday by Vice President Biden, along with many new, Moonshot inspired initiatives across industry, non-profit and government.

AML is the most lethal of the blood cancers, which together are the third leading cause of cancer deaths in the U.S.; AML is responsible for more than 10,000 deaths each year. Despite advances in treating other blood cancers, the standard of treatment for AML – a combination of toxic chemotherapies – has remained the same for more than 40 years. Overall prognosis remains poor, with a five-year survival rate below 20 percent for patients over age 60.

With support and guidance from the U.S. Food and Drug Administration (FDA), and LLS as the sponsor, the ambitious Beat AML Master Trial seeks to change the paradigm for how this deadly cancer is treated, using an innovative precision medicine protocol. This approach will employ comprehensive genomic profiling (CGP) to find and match specific AML genetic mutations in newly diagnosed patients over age 60, with an investigational drug or drug combination potentially best suited to attack the specific molecular mutations causing the cancer.

According to Louis J. DeGennaro, Ph.D., LLS President and CEO, “The Leukemia & Lymphoma Society is uniquely qualified to lead this unprecedented clinical trial collaboration, rare for a non-profit and a first for LLS. Beat AML, as we have named this Master Trial, showcases LLS’s stature in the cancer ecosystem,” he explained. “It demonstrates our ability to convene the medical and research communities to think and act boldly in the quest for new and better treatments for blood cancer patients, and our aim to accelerate the rate at which precisely targeted breakthrough therapies reach the patients who urgently need them.”

July 5, 2016

If there are faults in the Dem party they Should be called out ...

in case you have not realized it yet, many long established Dems feel the party is leaving them! He is trying to bridge that gap to make the possibility of voting for Clinton more palatable.

The Dem party is losing it, they are casting aside long time members while doing little to bring in new members.

Warren flipped beliefs so quickly it was as if one was turning a pancake. Sanders rightfully knows that he has also attracted many independent voters and if flipped too soon they will just melt away. But he is also trying to bring about real change, this is not a struggle between Dem and Repub, it is a struggle of power and wealth in both parties against the people.

Sanders understands the incremental changes that are needed, you fight for every last bit you can get and to advance an issue, this is an area in which the Dems are sorely lacking. We should not always bend over backwards and go along with their wishes.

Which Dems fought against invading Iraq, which has now turned the ME into a hell hole with millions affected. Why do they hate us, that was a horrible mistake and No, one cannot just say it was a mistake and move on, those actions have and deep and lasting consequences!

I would think what he is doing should be obvious to most, he called Trump a pathological liar months ago, so please do not pretend that his words are just to tear down Dems, pay attention!!!

But he has some real differences with the way Dems have given lip service to their members and many Dems and Independents do as well, just holding up a D or R banner does not cut it anymore.

If you want to continue and alienate potential voters for the Dem party then continue to espouse these beliefs, but I feel this is the wrong direction.

June 30, 2016

Totally opposite! The establishment screws most people unless you are in the upper percentile...

been there, done that and maybe felt as you did in my 30's. Fast forward another 20 or 30 years and life becomes very different.

Most people are just one major illness away from having their lives ripped apart.

Should we even mention those who never had a chance because of family and circumstances into which they were born. They never had a chance, we have met too many people at Hope Lodge in those circumstances along this very long cancer road.

Glad you like your niche, we did as well, but illness and age put us in our proper place.

What are your annual out of pocket expenses, do you know what they are, I'm not speaking of deductibles, they are just a drop in the bucket. Honestly if you asked me when I was 40 I would not have had a clue. Would you be able to sustain your living standards without your normal salary and on top of that be able to pay the annual out pocket expenses year after year plus additional travel costs for treatment?

First year our annual out of pocket deductible was $11,500 in 2010, fortunately it dropped to $8,500 in subsequent years, but we have met the annual out of pocket maximum every year since, coupled with an 80% drop in salary. We are fortunate to have family and friends that have been able to help.

We are very lucky though, as our ever increasing insurance premiums still covers most providers, many insurance plans do not cover state of the art hospitals, so check your plan, many people think they are covered, increasingly their insurance is only covered for their state or a few states away.

We met someone at Hope Lodge in NYC year from Florida in 2015 when my husband had his second allogeneic transplant, but their insurance had to wait to and skip a few states forward, so they had to wait, three states at a time, until their insurance was accepted at Columbia and Cornell. She spent almost two years in NYC and is doing well, we saw her two weeks ago for a check up and she is doing very well

But there is a reason that two-thirds of people who file for bankruptcy for medical reasons HAD a good job and HAD good insurance.

In essence you never know what life might have in store for you, did we envision one bone marrow transplant, let alone two and all the associated costs and risks that many could not even endure.

We are very lucky as we had some retirement saving to fall back upon and some family that were able to help, but there are many who do not have that safety net.

There are many people we have met on this long journey at Hope Lodge who have not survived, maybe because luck was not on their side, they did not have the best treatment or support.

Sorry this is probably not the response you envisioned, but times change so quickly, as the old saying goes, try and place yourself in another person's shoes.

You ever know what life has in store for you, hopefully it is the best!

June 23, 2016

While this is a heartbreaking post I cannot dismiss those in other countries who have died ...

been wounded or displaced, millions of them because as some politicians state 'it was a mistake.'

It is interesting that you state you will never forgive them, do you think they should forgive us?

We just made a mistake?

Should we say their names, we cannot even do so, there are too many too mention.

June 14, 2016

Can you imagine a 20 year old, poor Jewish man chaining himself to a black person ...

in the 1960's to protest segregation? To be arrested and not willing to give in, I could not have done that, could you?

Those were very different times, it took a certain kind of character to stand up then and through his long career of speaking for the oppressed when it was not popular.

Would you have chained yourself to another person of color in protest, suppose they were of another faith or nationally, would you do that today in support of Muslims? You can easily go to Mosque today and speak out, will you? I admit I am chicken, but will you enter into an unknown world of the oppressed and stand with them as some did in the 1960's for others?

You need to think about that VERY long and hard before a condemning a person and all that he has fought for, one needs to have some very deep and core beliefs of right and wrong to do so .... and then to continue the struggle for decades,.

All people should have rights, instead of fighting a war based upon some notion of skin color, religion or gender.

I am sorry for all the people who have struggled to gain equality, we need to do better, all of us!

But I believe that continuing to point out our differences is not conducive to the equality we seek, on the contrary it hinders our progress.

Hope you agree

June 14, 2016

Please stop dividing people by race, gender or whatever a narrow mind can possibly contrive ...

to bring about discord while linking to articles that do nothing more than seek to further an agenda of divisiveness.

Sometimes you just have to call them as you seen them!

Obama never promoted his historic win with "History Made" as the first Black nominee or even POTUS and he never fell back on that as excuse, and yes I had my differences with him in regarding to HC, turning a blind eye to war crimes and those on Wall St.

But he NEVER used his race as a reason to support his agenda. Personally and as a woman over 60 Clinton should follow in his footsteps and not play the gender card.

No I do not want a magnet for 10 bucks with her picture and the words "History Made!"

She would do well to follow Obama's footsteps as he did not feel the need to flaunt his race, nor should she flaunt her gender.

Policies and positions are what history will ultimately decide their fate, many, many years after we are gone.

June 11, 2016

Those over 60, or thereabouts (the young!) have been watching these 'games' unfold for decades

we are always told to vote for a person because the other person is worse, what about the Supreme Court etc. etc.

Well that has not turned out so well for the American people, us boomers complied, in retrospect we may have messed up royally, believing the candidate of the other party would be worse.

When does your continued compliance lead to unintended and unwanted consequences, where and when do you draw the line? Do you ever say enough is enough before you die, or do you just always go along?

What have we gained for most people in the US, some equality here or there, but the middle class as we knew it decades ago has been shrinking. There are those who would point to specific injustices along the way, but ultimately money does buy power.

Money buys access to good schools, meals on the table and that can go a long way. Some say we need to separate racial inequality from economic inequality, I disagree.

We can try and dismiss the economic side, but if you ever have faced a serious illness you will realize that money cannot cure the illness, but it goes a long way in making it easier to cope with the daily/monthly chores.

Money helps to smooth out the injustices felt by people for a myriad of reasons, we can try to fight the injustices of what money can buy, but IMHO we cannot escape the fact that it makes things easier and allows access to certain things ... health, education are two very important reasons to push for economic equality.

At what point in our lives do we acknowledge the fact that 'just going along' is no longer working and we need another path.

June 11, 2016

"Never settle, my dear sisters. Never settle." Well stated ...

I do not remember Obama playing up his race once he was designated the nominee, if anything he downplayed his race.

But I could get a Hilary magnet with a picture of Hillary and the words "History Made" for a minimum contribution of ten bucks.

I have been very critical of Obama, particularly for his exclusion of advocates for a universal HC system beginning with his first WH summit on HC. Unfortunately if one was critical they were also considered a racist, now we'll just be considered sexist.

Well stated, thx!

June 9, 2016

My party right or wrong? He concentrated on the issues that should matter to people ...

party labels should not define a person, neither should race, religion or gender.

Yes he might have failed in saying independents needed to be registered Democrats, but more and more people are not identifying with either party.

Do we want their vote and voices or not, the Dems want to push independents away, but come November they would like their vote.

Time and time again here on DU independents have been told to go away, is that something the Dem party should strive for? I would say no, but in a week they will be told to go away, or walk on eggshells.

I think that has been and will continue to be a downfall of our party, just push people away, that will surely attract young, independent voters.

Most people do not want to live in an echo chamber.

June 9, 2016

Big difference between 2008 and now, there are many younger voters who have signed up

to vote based on issues and they are not all party loyalists, some will be convinced and some will not.

Sanders cannot wave a magic wand and have them comply, they are much more independent, yet he wants to keep them engaged in the political process. We are moving towards a younger generation who will soon become a dominant force, and they come in all races, religions and genders, but the establishment Dems are too blind and have chosen to ignore their concerns.

Strange that it took a man in his 70's to breathe hope into this younger generation and the future of our party.

Even with all their money, power, and maybe a little too much hubris, they fail to recognize a future unfolding before their eyes.

But a large part of Sanders support comes from people who have watched and listened to what he said and Did 20, 30, 40 years ago, his message has been consistent, that is not something that can be bottled up into a nice little package for voters.

His core beliefs have remained constant and not dependent on the prevailing political winds of the moment.

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