Medical Data, Information & Research

[Sir Creep 7,070]

I want a place we can post information/data about diseases or medical conditions, their various treatments, and potential recoveries (%age) or life expectancies therefrom.  You see something that says 20% of all patients undergoing a medical procedure recover fully, I (well we) need to know and act accordingly when putting together out DP lists.  I am aware of and understand the competitive nature that brews in these parts--I mean I want to win a DP as much as anyone--but if we collectively can spot trends in medicine, seems a reasonable thing to share.  It's not like we are sharing NAMES of people with said afflictions.
For instance, my research shows a person undergoing the Whipple procedure for pancreatic cancer adds about 18 months to their lives.  That's it.  You see someone getting a Whipple procedure, pencil them in for your DPs 12-18 months down the road, depending on age I reckon.  Isn't that something we all should know?  Of course.  Am I going to tell you who had a Whipple procedure done and when?  Of course not.
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Anyway, what instigated this was I needed a place to post about this new refractory large B-cell lymphoma gene therapy treatment called Yescarta.

Yescarta, also referred to as a CAR-T therapy, works like this: T cells, or immune system cells, are filtered from a patient’s blood and reprogrammed to target and kill cancer cells. Returned to the patient, the revved-up cells can continue multiplying to fight the disease for months or even years.

Initial trials were promising.  "After a (median) 15.4 month follow-up, shows that more than half of patients [who responded] are still progression-free. Indeed, 42% of patients continue to respond to Yescarta, and 40% are disease-free.  In this analysis, 12% of patients experienced grade 3 or higher cytokine release syndrome (CRS), and 31% experienced neurologic toxicities."

Yescarta was only approved by the FDA in October 2017, and despite some early promoted as a breakthrough by maker Gilead Sciences, Inc., only 6 patients have actually gotten the costly therapy, while others linger on waiting lists [waiting lists for the $373,000 treatment have grown to at least 200 people, shrinking as patients die].

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And my Yescarta research was instigated by the death of Kristine McCulley (58).  She died February 9, 2018 after a yearlong battle with lymphoma.  She had been one of the first 6 people in the country to try Yescarta (allowed/perscribed only after chemotherapy and radiation have been unsuccessful).  McCulley received her reprogrammed T cells just before Christmas 2017.

So what have we?  Unsure of what cancers the trial patients had, but a bit less than half taking the drug achieved some beneficial results, with some extraordinary results as well.  However, when put into practice of our small sample size of 6, we already have 1 person (16%) who didn't last 50 days.  Pretty safe to say the drug had zero or nearly so effect.   Anyway, a drug to keep an eye on to see if the other 5 patients do well, or don't do well, so that if you read of someone taking Yescarta in the future you'll have some reasonable expectations as to what that means.

SC

[msc 18,421]

Worth keeping an eye on that miracle cure that Jimmy Carter had. Didn't someone who took it die recently?

 

Also, an average for the Gordie Howe treatment will appear over time, too.

 

In terms of pancreatic cancer, I note 8 people who got to announce "in remission" from it in my notes:

- Ruth Ginsberg, Chris Rea, Wilko Johnson all still alive and at the "we are bloody lucky" end of the scale.

- Vera Caslavska - 13 months from diagnosis, with surgery/remission in between

- John Hurt - 19 months.

- Jack Poole - 26 months

- Brian Lenihan - 19 months (added at last minute here from vague memory)

- Simon Hoggart - 44 months (though he kept his treatment very private so we don't have the full stats bar diagnosis and death)

 

 

[Grim Up North 3,723]

Simon Ricketts?

 

[Death Impends 7,953]

31 minutes ago, msc said:

Worth keeping an eye on that miracle cure that Jimmy Carter had. Didn't someone who took it die recently?

 

Yeah, Aussie business guy Ron Walker.

[msc 18,421]

22 minutes ago, Grim Up North said:

Simon Ricketts?

 

 

Stomach cancer which spread, no?

 

Also, still alive, so if anyone has his date of death for stats purposes, please let me know in time for my Windy pool and Deathlist Cup next round teams, thanks.

[Grim Up North 3,723]

19 minutes ago, msc said:

 

Stomach cancer which spread, no?

 

Also, still alive, so if anyone has his date of death for stats purposes, please let me know in time for my Windy pool and Deathlist Cup next round teams, thanks.

Ah poor lazy research by me - that explains why he's still fighting fit.

 

I kind of thought still alive was still relevant to your post because of this bit???

1 hour ago, msc said:

In terms of pancreatic cancer, I note 8 people who got to announce "in remission" from it in my notes:

- Ruth Ginsberg, Chris Rea, Wilko Johnson all still alive and at the "we are bloody lucky" end of the scale.

 

[msc 18,421]

Oh that was a last minute add on, to avoid anyone going "what about Ruth Ginsburg". Famous last words!

[FixedBusiness 407]

Because someone said Simon Ricketts, Colin Butts came to my mind. Hows he doing, also what was it that he was diagnosed with? I know it's terminal though.

[Spade_Cooley 9,513]

Stage 4 pancreatic cancer, although he also had the notorious "whipple" treatment iirc?

[msc 18,421]

Yep, he crowdsourced the dosh for it.

[charon 4,943]

Statistically, if yer ma bats for the other side, you will likely be a lesbian too.

 

Or work for Oxfam.

 

 

Might not help with short term pool lists, but come Ragnerok......

[theoldlady 2,294]

Norway is going to start giving about 50 children with SMA ( spinal muscular atrophy) the life-extending Spinraza medication that costs about 1 million Norwegian Crowns per dose (91,000 British pounds/ 103,000 euros). They will need these doses perhaps for the rest of their lives. Those over 18 years of age are out of luck - at least for now. ( major side effect is kidney failure....)

[Sir Creep 7,070]

A bit of a fluff piece, but here's an article about someone who used 'immunotherapy' (nivolumab) to cure ovarian cancer.
The article says immunotherapy doesn't work on all cancers, in fact only a few to date -- though expanded testing on all forms of cancer may begin soon.

 

"For the vast majority of cancers, there is an amazingly clean correlation between response to therapy and mean mutational load," Pardoll said.  But there were a few oddball exceptions. An unusual skin cancer called Merkel cell carcinoma responded to immunotherapy, scientists found. It is caused by a virus, and researchers suggested the infection itself draws the attention of the immune system.

Mesothelioma also responded, perhaps because the asbestos that caused it also inflames the immune system. And some kidney cancers responded to immunotherapy treatment; no one knows why.

And then came a handful of women with a rare ovarian cancer....
----------------
Anyway, this is of particular interest to me cuz when I first heard of 'immunotherapy' I poo pooed it as hocus pocus.  So when I saw DDP unique pick Karen Land with '3 months to live' crowdfunding to get $$ to go to Germany for immunotherapy, she seemed a lock to meet her maker.  She is scheduled to receive treatment #1 in 3 weeks.  We shall see.
SC

[theoldlady 2,294]

20 hours ago, Sir Creep said:

A bit of a fluff piece, but here's an article about someone who used 'immunotherapy' (nivolumab) to cure ovarian cancer.
The article says immunotherapy doesn't work on all cancers, in fact only a few to date -- though expanded testing on all forms of cancer may begin soon.

 

"For the vast majority of cancers, there is an amazingly clean correlation between response to therapy and mean mutational load," Pardoll said.  But there were a few oddball exceptions. An unusual skin cancer called Merkel cell carcinoma responded to immunotherapy, scientists found. It is caused by a virus, and researchers suggested the infection itself draws the attention of the immune system.

Mesothelioma also responded, perhaps because the asbestos that caused it also inflames the immune system. And some kidney cancers responded to immunotherapy treatment; no one knows why.

And then came a handful of women with a rare ovarian cancer....
----------------
Anyway, this is of particular interest to me cuz when I first heard of 'immunotherapy' I poo pooed it as hocus pocus.  So when I saw DDP unique pick Karen Land with '3 months to live' crowdfunding to get $$ to go to Germany for immunotherapy, she seemed a lock to meet her maker.  She is scheduled to receive treatment #1 in 3 weeks.  We shall see.
SC

I also read that there is research into using immunotherapy for the disease I mentioned above, SMA. It would be Half the price or Perhaps a little over Half the price of the Spinraza Medication. Not sure if they have already started trying it or not. 

[Sir Creep 7,070]

https://breast-cancer.ca/prog-untreated/

In depth discussion of each and every stage of breast cancer, and survival rates etc.

[Sir Creep 7,070]

Rafael Pharmaceuticals has commenced the Phase III AVENGER 500 trial to examine CPI-613 (devimistat) in combination with modified folfirinox (mFFX) as first-line therapy to treat patients with metastatic adenocarcinoma of pancreas.

The multicentre, open-label, randomised pivotal trial will compare the efficacy and safety of folfirinox (FFX) with the combination of CPI-613 and mFFX.

It is expected to enrol around 500 metastatic (stage IV) pancreatic adenocarcinoma patients aged between 18 and 75 years who were not previously treated for metastatic disease.

Individuals with Eastern Cooperative Oncology Group (ECOG) performance status of 0–1 will also be included in the AVENGER 500 trial.

Primary endpoints of the trial are overall response rate (ORR) and progression-free survival (PFS).

Its secondary endpoints include overall survival (OS) and duration of response (DOR).

[Sir Creep 7,070]

Study showing that immunotherapy has little to no effect on brain cancer (unlike other cancers).  The scope is limited to a mere 56 patients, but what's interesting is they are a number of people who have been posted on these pages, some of whom have died or are living.
Fulvio D’Angelo, Michele Ceccarelli, Tala, Luciano Garofano, Jing Zhang, Véronique Frattini, Francesca P. Caruso, Genevieve Lewis, Kristin D. Alfaro, Luc Bauchet, Giulia Berzero, David Cachia, Mario Cangiano, Laurent Capelle, John de Groot, Francesco DiMeco, François Ducray, Walid Farah, Gaetano Finocchiaro, Stéphane Goutagny, Carlos Kamiya-Matsuoka, Cinzia Lavarino, Hugues Loiseau, Véronique Lorgis, Carlo E. Marras, Ian McCutcheon, Do-Hyun Nam, Susanna Ronchi, Veronica Saletti, Romuald Seizeur, John Slopis, Mariona Suñol, Fanny Vandenbos, Pascale Varlet, Dominique Vidaud, Colin Watts, Viviane Tabar, David E. Reuss, Seung-Ki Kim, David Meyronet, Karima Mokhtari, Hector Salvador, Krishna P. Bhat, Marica Eoli, Marc Sanson, Anna Lasorella, Antonio Iavarone

[ThereWillBeDeaths7 719]

13 hours ago, Sir Creep said:

Study showing that immunotherapy has little to no effect on brain cancer (unlike other cancers).  The scope is limited to a mere 56 patients, but what's interesting is they are a number of people who have been posted on these pages, some of whom have died or are living.
Fulvio D’Angelo, Michele Ceccarelli, Tala, Luciano Garofano, Jing Zhang, Véronique Frattini, Francesca P. Caruso, Genevieve Lewis, Kristin D. Alfaro, Luc Bauchet, Giulia Berzero, David Cachia, Mario Cangiano, Laurent Capelle, John de Groot, Francesco DiMeco, François Ducray, Walid Farah, Gaetano Finocchiaro, Stéphane Goutagny, Carlos Kamiya-Matsuoka, Cinzia Lavarino, Hugues Loiseau, Véronique Lorgis, Carlo E. Marras, Ian McCutcheon, Do-Hyun Nam, Susanna Ronchi, Veronica Saletti, Romuald Seizeur, John Slopis, Mariona Suñol, Fanny Vandenbos, Pascale Varlet, Dominique Vidaud, Colin Watts, Viviane Tabar, David E. Reuss, Seung-Ki Kim, David Meyronet, Karima Mokhtari, Hector Salvador, Krishna P. Bhat, Marica Eoli, Marc Sanson, Anna Lasorella, Antonio Iavarone

Surprisingly 

[Sir Creep 7,070]

*exasperated*  aaarrrgghhh well played.

[Sir Creep 7,070]

End-stage indicators for various illnesses.

https://www.montgomeryhospice.org/health-professionals/end-stage-indicators/end-stage-indicators

[gcreptile 10,963]

I stumbled over this and now I wonder of Leah Bracknell is an ALK+ patient:

https://www.eurekalert.org/pub_releases/2018-12/uoca-pnl123118.php

[Sir Creep 7,070]

Updated U.S. cancer survival rates.
https://www.zmescience.com/science/news-science/cancer-survival-rates-10012019/

[Sir Creep 7,070]

Article about Oskar Lindblom's Ewing's sarcoma battle, but has lots of info on former v modern treatment, recovery rates, blah blah.

[Whitehouse 872]

Woman who got the first ever real life Face/Off transplant dies aged 57.

[The Great Cornholio 902]

Dying man with MND is attempting to become the first superficial human cyborg