23 replies to this topic

[Kittywatkins]

Did anyone watch the documentary on PBS? It started yesterday and ends tomorrow. Very very interesting, sad and encouraged all at the same time..

[chrissy778]

 It was very informative and I feel like I have more knowledge and understanding. I can now explain CML with chromosomes, proteins and DNA instead of calling them half ass cells. I also learned about Oncogenes and mutation which was very interesting. I had watched it last night also but was very excited and more hopeful after tonight's episode. Tomorrows episode looks like it will be more about targeted therapy.

[Billie Murawski]

Yes, I've been watching it too. It's amazing how far they have come. I get so angry when those doctors tell how they have to beg for funds for research. But the gov't hands out huge grants to study the sex lives of insects. I know insects are important, but their sex lives!! To much information.

It was so exciting to hear just how close they are coming to cures for certain cancers. I keep waiting for the John Kanzius human trials to begin. The fda keeps holding things up, it's sad that he died because he was fighting the powers that be and he didn't care what they said. Pancreatic Cancer is supposed to be the first human trials tested.

My opinion is they know a lot more than they are telling us and every once in a while they throw us a bone so they can get more money, and prevent a lot of people from losing their jobs. I hope I'm wrong.

[tadly]

I read the book when I was going through my SCT treatment for AML. I've been anticipating this for months after meeting a relative of a leukemia patient who's in the documentary.  The contemporary story in the first episode of the young boy who suffered with GVHD, struck me and had me sobbing.  Yes the mention of CML as part of the oncogene and targeted drug story follows with the dramatic breakthrough of Gleevec.  It raised the hope for targeted therapies for other cancers.  It's been over 40 years of the "War on Cancer", I'm old enough to remember this, yet we certainly aren't there.  

 

The episodes are available for online streaming at pbs.org for another month.

[chrissy778]

Did not feel that uplifted after tonight's episode. Kind of took the wind out of my sails with all the talk of resistance. I think I will go read Treys post "Reading for the newly diagnosed CML patient"  to try and feel encouraged again. Good night

[hannibellemo]

Chrissy778,

 

I felt the same way and had the same reaction, I wanted to re-read Trey's information.

 

I've heard CML referred to as a "dumb" cancer. (I'm whispering that for fear of waking the sleeping monster inside me.  ) 

 

That CML doesn't normally mutate like other cancers and that is why targeted therapy has been so successful. It doesn't mean it can't mutate, we know that, just that it appears less likely to.

 

The statement that was made about all mutations not being dangerous I found interesting, too. When you look at the list of mutations resistant to more than one of the TKIs, the list is very short. One of the drugs appears to work for the vast majority of us. T315i appears to be our outlier and even that will respond to Iclusig in many cases.

[rcase13]

They didn't really mention how to avoid mutations. Is there any way to lessen the chances of a mutation and/or resistance? I guess just take our pill everyday and try and be healthy?

[Kittywatkins]

I had to record last nights episode and just watched it. It made me sad, very sad. Sad because of the stories of the patients. And I can't believe I forgot her name already, but the pregnant oncologist...I wish my Onc was as compassionate as her. But like we all say... Thank god for the pill and wish for the best.

[hannibellemo]

I still came away feeling very hopeful after last night's episode. So much more is known and so much more needs to be known but I really feel that most, if not all, cancers will eventually become chronic diseases. What the price tag will be is the question. People shouldn't have to die just because they are poor! I felt like they gave that issue short shrift last night.

[Pin]

I haven't seen this show- what's the issue with resistance? Is this something we haven't heard before?

[Kittywatkins]

I still came away feeling very hopeful after last night's episode. So much more is known and so much more needs to be known but I really feel that most, if not all, cancers will eventually become chronic diseases. What the price tag will be is the question. People shouldn't have to die just because they are poor! I felt like they gave that issue short shrift last night.

I totally agree! And all that money the big pharmas are making! Wow! I loved the cartoons they showed. We have a drug that can save us, but your gonna die because you can't pay for it! Ha!

[tadly]

Kittywatkins,

 

I think you were referring to Dr. Suzanne Cole, who advised the older patient, as he was wiping away his tears.  And she had tears welling up too when she later explained her role as a doctor.  I agree about big pharma and I used to be in that industry.

[Billie Murawski]

I felt so many emotions when I watched it, it's amazing how they finally used an arthritis drug to save that little girls life because she was so sick it couldn't do any more harm.  Who knows maybe a combination of drugs used for totally different reasons may be the answer for a cure. I take Cymbalta as an anti-depressant, but it is also an anti-inflammatory. If I miss a day the next day I am really sore all over.

[chriskuo]

The pharmas are making big money but they are also spending big money on R&D.  

There are a lot of right-wing Americans who want the government less involved in health care, not more.

The situation is different in most developed countries, because their governments have more control over

the health care system.  If the U.S. reduces the R&D spending on drugs, where will most of the new breakthroughs 

come from?  Hopefully, over time, the right-wingers will become more accepting of a hybrid system and not put people with pre-existing conditions at the mercy of their finances and charity.

 

Ciba/Geigy - Novartis was not an American drug company and they were not that interested in pushing Gleevec at first.

The efforts of Dr Druker and the rewards of the US health care system are what pushed through the adoption of Gleevec.

[pegetha]

Sorry to jump in to the CML forum (I don't have CML), but I'm currently reading "Emperor of all Maladies," so this thread caught my eye.  (I know this post is long, so feel free to skip it if you wish.    )

 

Even though I don't have CML, I suspect I directly owe my life to the efforts of Dr. Druker.  It was around the year 2000 that Gleevec began to change the face of CML.  It was also the same year, 2000, that I received my original diagnosis of polycythemia vera.  I had never heard of PV, and began to research it.  I didn't have access to the internet then, and so bought a medical textbook on hematology.  Although I didn't understand a lot of it, I read and reread the book.  One section dealt with the stages of PV, and referred to its progression, also known as "End Stage."  The name tells you what the prognosis was.  I was treated for years with phlebotomy only, then as the PV began to progress, I was given hydroxyurea.  My symptoms were controlled by HU, and all was well for about seven years.  Finally, I had progressed to that dreaded "End Stage," also known as "myelofibrosis."  

 

In the book, Mukherjee wrote, "Gleevec opened a new door for cancer therapeutics. ... Targeted molecular therapy for cancer was possible; one only needed to hunt for it by studying the deep biology of cancer cells."  Yes, that door was opened, and research was begun on finding the mutation responsible for the MPN's.  It wasn't until 2007 that the JanusKinase2V617F mutation was discovered, which is responsible for a very high percentage of the MPN's.  Research immediately began on finding a targeted therapy for the JAK2 mutation.  (Meantime, my doctor tried to get me into a clinical trial at MDA using Gleevec to treat PV.  That trial was apparently dropped early on, though.)  Ruxolitinib (now known as Jakafi) was very quickly developed, went into clinical trials (I was disqualified for a clinical trial as I had developed secondary malignancies), and was approved by the FDA in November, 2011.  I began taking Jakafi about a month after approval.  

 

Now, my "End Stage" has become a treatable chronic form of bone marrow cancer.  My doctor at MD Anderson, Dr. Verstovsek, tells me that I will probably develop resistance to Jakafi at some point, just as many CML patients developed resistance to Gleevec.  However, there are a number of other JAK2-targeted therapies "in the pipeline," and so my prognosis has totally changed.  MF is now just a stage, not the end one.

 

And much of it thanks to Dr. Druker's persistence with the development of Gleevec.  I was unaware of a lot of the history until I read the book. I'm sure that the MPN mutation(s) would have eventually been discovered in any case, and targeted therapy developed.  But would that have happened soon enough for me (and many others), without Dr. Druker?

 

Sorry about writing my own book.  

 

Pegetha

[Gail's]

Peg ethos, I relate well in being grateful to Dr Druker. My mother had B cell lymphoma and lived many more years than would have been possible because of rituxin a targeted drug. This kind of therapy is the wave of the future. I'm optimistic that it's opened the door for the control of many, many cancers. It's a good thing when whole teams of people are dedicated to finding one tiny link in the treatment of rare diagnoses.

[Trey]

The documentary showed how although progress has been made, it has not resulted in significant increases in survivability for most cancers.  CML is a shining exception.  Overall the series showed how much sacrifice has been made by the patients.  That's why I so admire K562.

http://community.lls...-story/?hl=k562

 

I have referred to CML as a "one trick pony", and I suppose I have also called it a "dumb cancer".  While not precise, it is accurate enough.  The series showed how many cellular pathways can be used by cancers of all types.  In the Chronic Phase, CML primarily uses BCR-ABL.  Stop that pathway and you stop CML 95% of the time.  Other cancers are not so simple. 

 

Regarding resistance, if we make it through 2 years then we are beyond the primary resistance window.  After that resistance is very rare, but is happens occasionally.  Generally, with CML the seeds of resistance are there from the beginning, and after they have had their chance to play out (2 years) they are no longer much of a concern. 

 

We should feel fortunate for the science that has given us the ability to worry more about our side effects than our existence.  If I had been diagnosed just 10 years earlier I probably would not be here.  For you recent diagnosees, maybe 20 years earlier, which is not much. 

 

Other cancers will be a matter of cell pathway mapping.  Stopping this and that signal.  Hoping to stay ahead of it.  While at the same time teaching the body's own immune system to recognize cancer cells as the enemy, and so destroy them.  And without destroying good cells.  Hard to do.  Maybe it will work, but it will be different for each cancer, and maybe even for each individual patient.

 

Most of the success stories were with cancers where chemo can kill them off before they kill off the host.  Just leaving them maimed to some acceptable degree.  Not very impressive for all the research.

 

I must admit that I was not impressed with most of those who fought this war on cancer so far.  They were far too arrogant in the face of a genius enemy.  They used primitive weapons against shape-shifter evil genius foes, often harming patients more than the enemy.  Not very impressive.  And the biggest advances have been from a very few innovators, usually without much funding.

 

The series was also a view into the moral dilemma of helping patients live longer so they could suffer more.  That was hard to watch, especially for the children involved.

 

Cancer is an evil genius.  I did not see that acknowledged.  While I found the series interesting, it was more depressing than hopeful.

[chrissy778]

Trey, when I envision you I think of The Great Wizard in the Wizard of Oz. I wish there was a hug button, thank you. I am saving this post to read when ever I need a lift, this helped boost my spirit. My husband kept saying he wished I never watched it because I had been quite and in deep thoughts since.

[Pin]

Trey - thanks for providing the link to the K562 story, that's simply amazing. I don't think I've read that before (or if I have, Gleevec brain has made it so I forgot), so thank you. And thank you to K562!

[hannibellemo]

Cancer is an evil genius.  I did not see that acknowledged.  While I found the series interesting, it was more depressing than hopeful.

 

I  thought that "cancer, as an evil genius" was what the entire 3rd episode was about, although it was not mentioned so directly. I also thought Dr. Mukherjee alluded to that in his too infrequent appearances. (Did you catch that, Billie, hot doctor reference!)