3102 replies to this topic

[eternaltraveler]

I tried to call him yesterday, didn't get through.  

This battle is far from over.  Lets hope they get a good suspension.

[fatboy]

benbest, on 9-May 2009, 02:45 PM, said:

William O'Rights has been pronounced dead.
I will be providing details on his cryopreservation within a couple of weeks.

-- Ben Best, President, Cryonics Institute

Please do. Rest In Stasis (R.I.S.) Brotherman O'Rights.

The Hollow Men

[theone]

As sad as this news is it will hopefully reignite the passion some of us have lost over the years to end this scourge (Myself included).   We owe it to Bill to ensure that we keep on fighting and that we never give up. His courage in the face of near certain death was inspirational.

Edited by theone, 09 May 2009 - 10:10 PM.

[sUper GeNius]

The news of Bill's death was a sobering jolt for me. I'll miss his acerbic wit.

I expect the institute to hold his alias, as I assume he will want it back.

[k10]

Very sad news to hear :(

He fought till the very end, which I respect so much, I just wish he could've won the battle.

[Shannon Vyff]

I'm glad Ben is handling his suspension, there aren't many on this Earth as qualified.   William lived way beyond his doctors' expectations and we all owe him, much was learned in his quest to fight his cancer and he shared it with us.

[Mind]

FuLL meMbeR, on 9-May 2009, 05:24 PM, said:

The news of Bill's death was a sobering jolt for me. I'll miss his acerbic wit.

I expect the institute to hold his alias, as I assume he will want it back.

He is a lifetime member. He retains his alias unless he requests otherwise (after re-animation).

[DJS]

Respect.

[tham]

This has been extremely distressing and difficult
to accept.

There were so many things that could have saved him.

Bill never even managed to get a single dose of IV C.

He was given a totally outdated standard chemo regimen
- cisplatin and etoposide has been in use for the past
three decades. He could at least have been given more
cutting-edge drugs, particularly imatinib and cetuximab or
any two of the many VEGF/EGFR tyrosine kinase inhibitors
and monoclonal antibodies in use over there.

The worst thing was, he was denied a chance at his best
hope - amrubicin. Your FDA cost him his life. Its stupid
drug procurement legislation denies dying patients access
to promising drugs which may well save their lives, or at
least extend survival significantly - unless it has been
approved after passing thru three expensive, time-wasting
phases of studies. Stupid and cruel, isn't it ?

This is so difficult to take. Amrubicin is not even experimental.
A complete waste of time, effort and money, while patients
are dying, to test out a drug which had been developed twenty
years ago in Japan and extensively used for the same condition
with significant survival benefits, and minimal toxicity at that.
A case of nothing better to do, realistically.

His oncologist too was to blame, when that trial of
amrubicin for SCLC was being held right under his very
nose - at the very hospital Bill was initially being treated
last year - Maine Center for Cancer and Blood Disorders
in Scarborough, and he failed to enrol him when Bill very
well qualified at that point in time, after just one chemo
session of that obsolete protocol he gave him, cisplatin
and etoposide.

I'm certain Bill would still be alive now, and lived at least
a couple more years, if he had had amrubicin.

Your drug procurement system over there needs a complete
overhaul. In plain English, your officials only have to use
their common sense to allow people to try a drug when
are already dying anyway with nothing left to lose.

http://abigail-allia...org/WLF_FDA.pdf


I still can't believe Bill's gone.

[forever freedom]

So i assume Bill is already suspended? Did everything go well?

[prophets]

I wasn't aware of this re: amrubicin.  That is distressing to read.  Hopefully Bill will return and complete a healthy life, as deserved.

[senseix]

Very sad to hear of his passing, i do hope that everything goes well for him with the cryopreservation.

[bacopa]

What kind of health insurance did Bill have if any?

[benbest]

forever freedom, on 10-May 2009, 12:46 PM, said:

So i assume Bill is already suspended? Did everything go well?

We just finished perfusing Bill, and placing him in the cooling
box. On Friday he will be down to liquid nitrogen temperature
and we will place him in a cryostat. On Friday or soon thereafter
I will release a complete case report, as I do for nearly all
CI patients.

http://cryonics.org/refs.html#cases

Bill will be the Cryonics Institute's 93rd patient.

             -- Ben Best

[forever freedom]

benbest, on 10-May 2009, 05:01 PM, said:

forever freedom, on 10-May 2009, 12:46 PM, said:

So i assume Bill is already suspended? Did everything go well?

We just finished perfusing Bill, and placing him in the cooling
box. On Friday he will be down to liquid nitrogen temperature
and we will place him in a cryostat. On Friday or soon thereafter
I will release a complete case report, as I do for nearly all
CI patients.

http://cryonics.org/refs.html#cases

Bill will be the Cryonics Institute's 93rd patient.

             -- Ben Best

Thanks, i'm glad to hear that. Very interesting info on patients too.

[bacopa]

benbest, on 10-May 2009, 05:01 PM, said:

forever freedom, on 10-May 2009, 12:46 PM, said:

So i assume Bill is already suspended? Did everything go well?

We just finished perfusing Bill, and placing him in the cooling
box. On Friday he will be down to liquid nitrogen temperature
and we will place him in a cryostat. On Friday or soon thereafter
I will release a complete case report, as I do for nearly all
CI patients.

http://cryonics.org/refs.html#cases

Bill will be the Cryonics Institute's 93rd patient.

             -- Ben Best

Bill is indeed lucky in this way!  He is among an elite few.  I really am so glad he got the suspension and I, like all of you, am extremely hopeful that he will be reanimated one day soon I hope.

[lucid]

Its terribly sad to see Bill go. He certainly was a larger than life character; his attitude was certainly an inspiration to anyone fighting a terminal disease. Hopefully, cryonics works out for Bill; It would be my pleasure to buy him a beer or three pending his re-animation. Rest in peace Bill.

Edited by lucid, 11 May 2009 - 03:08 AM.

[StrangeAeons]

I am saddened to hear this news, but I am decidedly encouraged by the duration of his fight next to his doctor's predictions.  I'm very sad to hear that he never got vitamin C, especially as I was considering going up there to administer it (I got caught up in red tape).

In the words of H.P. Lovecraft:
"That is not dead which may eternal lie,
than in strange aeons, even death may die".

Here's to strange aeons.

[tham]

Bill couldn't hide his disappointment to me on the phone
when you backed off.

While I understand the slim possibility of legal repercussions
on your profession, you could have gone up there to give it
to him discreetly and privately, as I recall one of the members
suggesting. Just once a week. Nobody would have known,
let alone noticed you were even there, in that isolated place
where he stays.

Even a single short injection of 15 grams over 15 minutes,
for a start, would have been beneficial.

http://www.imminst.o...o...=0&p=295417

You were virtually his last hope at vitamin C.

[tham]

It's way too late, too little now anyway.

All the talk in the world won't bring him back.

[NoDoubt]

benbest, on 11-May 2009, 12:01 AM, said:

forever freedom, on 10-May 2009, 12:46 PM, said:

So i assume Bill is already suspended? Did everything go well?

We just finished perfusing Bill, and placing him in the cooling
box. On Friday he will be down to liquid nitrogen temperature
and we will place him in a cryostat. On Friday or soon thereafter
I will release a complete case report, as I do for nearly all
CI patients.

http://cryonics.org/refs.html#cases

Bill will be the Cryonics Institute's 93rd patient.

-- Ben Best

Thank you Ben for the tremendous job you do with CI. There is so many hurdles to jump for a cryonicist. I am glad that everything was ready for Bill. Hope is still there!

Edited by NoDoubt, 11 May 2009 - 10:04 AM.

[tham]

prophets, on 11-May 2009, 03:34 AM, said:

I wasn't aware of this re: amrubicin.  That is
distressing to read.

I had started a separate thread on amrubicin to alert Bill
at that time, but they have merged it here.

http://www.imminst.o...t...&pid=281955

http://www.imminst.o...t...&pid=280876

http://www.imminst.o...t...&pid=280171


I guess I joined the Bill's threads too late, discovering
amrubicin and this trial shortly thereafter. By this time,
his oncologist had already given him at least two chemo
regimens - first with cisplatin plus etoposide, then with
irinotecan as a single agent.

The entry criteria for this trial excludes pretreatment with
more than a single chemo regimen.

It also excludes pretreament with topotecan. Bill thought
he had received topotecan,  but he mentioned CPT11,
which is the other name for irinotecan.

It also excludes prior anthracycline treatment, which would
mean daunorubicin, doxorubicin, the two prototype antibiotics
of this class, or the second generation one, epirubicin. Bill
never had any of these. Doxorubicin is considered the
standard drug of this class, being used extensively in many
cancers, including the old CAV "standard" regimen for both
SCLC and NSCLC  - cyclophosphamide, Adriamycin (doxorubicin)
and vincristine.

My high school classmate in the local chest hospital here used
to give MOCA as first line for all lung cancers during the 80s
to 90s - methotrexate, Oncovin (vincristine), cyclphosphamide
and Adriamycin (doxorubicin).


This lady's mother was in the trial. See her comments on
how promising amrubicin is.

http://www.imminst.o...t...&pid=312161

[tham]

Japanese-developed cancer drugs, as well as regimens of
the older drugs, are usually superior compared to their
Western counterparts.

Another example is S-1, or TS-1, developed a decade ago
by Taiho Pharmaceuticals, in gastric, colorectal and pancreatic
cancer. It's a modified version of tegafur, the 5-FU prodrug.

If Farrah Fawcett had been on this, she would very likely
still be doing well. It's still waiting approval in the US  .....
for gastric and pancreatic cancer only, with two trials over
there currently recruiting.

http://www.geocities...t/adjuvant3.htm

http://cat.inist.fr/...cpsidt=18302243

http://www.newdrug.c...4/647329990.pdf

[tham]

The patients' relationships with their doctors, and
their choice of drugs and treatments, are vastly different
in this region, particularly in the private hospitals, in
sharp contrast with the situation over there.

Here the patients have free and open discussions with
their doctors as to their conditions and treatment choices,
with the ultimate choice being left to the patients themselves.

Over there, particularly for those being covered by Medicare/
Medicaid, it appears patients have no such freedom, with
their entire treatment protocol, right from the roster of
doctors being assigned to them to their "approved" drug
regimens, out of their hands, as in Bill's case. Otherwise,
they are left to try entering a study, if the drug is in one.

This is not much different from the situation of inmates at
a prison, where everything from A to Z is in the hands of the
prison doctor.

This local guy, Chow, whom I had just got to know from the
Cancer Compass forum, has NSCLC Stage 4. He told me
he was on erlotinib (Tarceva) initially, when he became
refractory after a few months.

He then discussed with his options freely with his
oncologists  - switching to gefitinib (Iressa), cetuximab
(Erbitux), permetrexed (Alimta) or raising his dose of
erlotinib, before finally deciding on permetrexed, which
he is on now and doing well, with minimal side effects.

No need for the hassle of finding out if the drug has
been "approved" by the FDA for that condition, and if
not, trying your luck at entering a study - if there is one.

Erlotinib is approved in the US for NSCLC only as second
or third-line therapy, after failure of a previous regimen.
Same with gefitinib and permetrexed.

Cetuximab is not approved for this condition yet.

[tham]

Bill's oncologist apparently never bothered to pursue
these channels to get him amrubicin.

http://www.fda.gov/c...r/singleIND.htm

http://www.fda.gov/o...sbiologics.html

Edited by tham, 11 May 2009 - 05:28 PM.

[Mixter]

Thank you for the update tham. That really makes me sad and sick. So he basically got nothing at all of therapeutical use to him from the system. Cisplatin is useful as first round but doesn't make any sense in subsequent rounds when the cancer developed resistance! It's just an alibi treatment. I wish we could have done more. However, the blame is 50% on the FDA death bureaucracy system and 50% on his doctors (however, doctors that were made by this system).

If any relatives were involved in this effort, they should sue for wrongful death damages: http://www.consumerl...mages-faq.shtml

And donate it, and other spare money you have to CI and Life Extension Foundation to honor Bill's struggle.

http://www.benbest.c...con/fdalef.html
http://www.google.co...ite:lef.org FDA

Life Extension Foundation, because of its 25+ year track record of fighting the FDA. Imminst and its members must fight the FDA. It's not just about freedom for some supplements or drug prices. It's about legitimizing this medical system doing covert triage and letting patients with cancer and other severe diseases suffer when they are beyond a point where they are no longer 'affordable for the system', or just not strong enough to fight for their rights. Bill knew more than 99% of most cancer patients do, and fought with everything he had until the end, yet it seems he was unable to change anything about his treatment. Realize it, before we can reap most benefits of new regenerative medicine and realize SENS and others, the FDA death machine must be brought to a halt!

Edited by mixter, 11 May 2009 - 07:20 PM.

[JLL]

I'm repeating myself, but no matter: this is precisely why life extension MUST go hand in hand with personal freedom of choice.

Quote

the FDA death machine must be brought to a halt!

Yes.

[eternaltraveler]

Quote

There were so many things that could have saved him.

No.  There was not.  The best treatments available could have bought him some more time perhaps, but it is complete fantasy to think he could have been cured by them.  He had stage 4 small cell lung cancer.  His best hope was before and remains now, cryonics.

thats not to say the FDA is not a bureaucratic mess that causes a lot of problems.  It certainly does.

Edited by eternaltraveler, 11 May 2009 - 10:19 PM.

[StrangeAeons]

eternaltraveler, on 11-May 2009, 06:11 PM, said:

Quote

There were so many things that could have saved him.

No.  There was not.  The best treatments available could have bought him some more time perhaps, but it is complete fantasy to think he could have been cured by them.  He had stage 4 small cell lung cancer.  His best hope was before and remains now, cryonics.

thats not to say the FDA is not a bureaucratic mess that causes a lot of problems.  It certainly does.

Thank you.  I really do feel guilty about not being able to help with the IV Vitamin C, but I don't think it's fair to attack me over it.  I had to be realistic when making that call, and jeopardizing myself (and my future in medicine) to perform essentially a palliative measure was not an option.  I understand you're upset, tham, but please be fair.

[advancedatheist]

eternaltraveler, on 11-May 2009, 11:11 PM, said:

Quote

There were so many things that could have saved him.

No.  There was not.  The best treatments available could have bought him some more time perhaps, but it is complete fantasy to think he could have been cured by them.

Just goes to show how deep into denial we can fall because of terror management. I don't know why we even bother pretending that we can "treat" many if not most forms of cancer in our current medical dark age.

BTW, I hand delivered to the Post Office this morning the envelope containing the check from the Venturists addressed to the Cryonics Institute to pay the balance of O'Rights's cryosuspension charges, certified and with a return receipt. In the next few days the Venturists will send out thank you email or cards to everyone who has donated.