271 replies to this topic

[thefirstimmortal]

Minni, from your PM, it appears three people are tying
Bill's hands now - Kurt, Carol and Bill himself.

Why did he go back to that hospital ?

Gee Tham, which times are we talking about, you mean the returns for the heart probelms, or last time when I was having problems breathing and came in gasping for air, begging to snuggle up to one of those nice green Oxygen machines?
Why didn't he
just go over to Maine Wellness Integrative Center
when he had the free choice and was still in fairly
good shape over a month ago, when I gave him the link ?
Tham, I'm fairly confident that the Maine Wellness Integrative Center was brought up by me, long before you posted about it.

The chemical you mentioned which that center's vitamin C
infusion has shouldn't be a problem, Bill probably made
too much of a fuss about it. I'm sure the chelation doctors
there are experienced with it and knows how to work around
it, having given it to many other patients before. It's probably
just a mild venous constrictor, I'm sure they have other
drugs to counteract any side effects if there is a need to.

The RECNAC protocol must have been given to virtually
thousands of cancer patients by now since it was first
developed by Hugh Riordan over a decade ago. There
shouldn't be any problem, other than a Herxheimer reaction
which can be easily managed by the doctors.

Bill seems quite adamant and nonchalant in his personality - for
example, he didn't seem to listen to me and David when we told
him about the powerful abilities of sodium valproate against SCLC.
Quite simply, all he had to do was request that oncologist, or any
other doctor for that matter (including Jeff Young) to write him a
prescription for that drug.

Tham, you don't seem to get it. I have yet to get these doctors to just give me prescription for something I wanted. I made some headway with JEFF, BUT HE WAS LATE TO the table.

Over here in Malaysia, all I have to do is just drive over to my
usual pharmacy, buy Epilim (sodium valproate) over the counter
(although technically it has to be dispensed by the pharmacist),
go home and pop a tablet into my mouth. That was what I was
thinking of trying out for my tinnitus years ago, if not for its
liver toxicity. Costs M$1.80 for a 500 mg sustained-release tab
currently - about 50 cents over there. Must have been less
than half this at that time.

My apologies Tham, some of these Cpitalized sections should havebeen edited by me. It is painful to type, so I'm just getting more resistent to correcting mistakes. Please don't missintepret those sections as speacking loud or yelling

[thefirstimmortal]

Lung cancer vaccine giving patients new hope

Video: Early results of new lung cancer vaccine promising
Larger screenE-mail this clip

SEATTLE - Lung cancer kills more people than any other cancer.

But now doctors are testing a new vaccine in Seattle and around the country that's shown promising early results.

Cookie McNamara is struggling with lung cancer.

"Lung cancer is a death sentence," she said.

Eighty-five-percent of people diagnosed with lung cancer die. Patients in the late stages of the disease have less than a 50 percent chance of living through the next year.

Related Content
More info on the study
Dr. Keith Eaton with the Seattle Cancer Care Alliance says until now the outlook has been bleak.

"For advanced lung cancer we have no treatments that cure patients," he said.

Cookie's odds could be changing thanks to a phase-three trial for a vaccine.

"I hope it would be a huge turning point because we are overdue for a breakthrough in lung cancer management," said Lyudmila Bazhenova, oncologist at the University of California.

Cancer cells emit a protein that makes them invisible to the immune system. The vaccine works by revealing those cells so the immune system can see them and attack.

"The drug appears to work," Eaton said. "It extended how long patients lived significantly more than other treatments that we use in lung cancer."

The drug is also not toxic like chemotherapy.

Early results show more than 60 percent of people who had the vaccine lived at least another year. More than 40 percent lived two years.

"If it doesn't help me, it's sure going to help other people," McNamara said.

After several months of injections she feels good and is determined to blaze the trail that leads to a cure.

http://www.king5.com...S.4e0164ae.html

This looks good, so how do I get some?

[thefirstimmortal]

well, why not fill the doctors mailbox with letters explaining that we want him to get Vitamin C IV treatment immediately?

If 100 persons sends him an e-mail I am sure something will happen!

I think poking the bear won't prove positive. And a doctor should listen to a patient firsrt. I like that you're thinking of a solution Victor, I just have to let you know, this isn't a fix for the problem.

Edited by thefirstimmortal, 17 December 2008 - 04:12 PM.

[tham]

What are you talking about? Indiana to Maine is a couple
hours by air...no big deal..and there is money enough to
cover it - if not from any of the funds that have been
collecting money...(which, oddly enough, seem to be more
for death than life) - than from members who have offered
to help with money in just such a situation.

Yes, I too had thought it was ironic that so much effort had
gone into collecting funds (and so much more collected) for
an exercise in death (with all due respect - highly controversial,
way too futuristic and venturing into the unknown, in my opinion),
rather than one to preserve existing life - which forms the very
fundamental principle and core of this Institute, and that of others
like the Life Extension Foundation - in the first place.

This, after all, is about LIFE extension - the principles
of extending the quantity and/or quality of life. Cryonics, for
what it's worth, must come secondary, and ONLY after
all attempts to extend/preserve EXISTING life have failed.


Shannon, Mind, Anthony, Minni, Bill - why not try making a
request with the Venturists for permission to use the cryonics
fund for expenses relating to Bill's vitamin C therapy ? No harm
trying, I think.

[missminni]

Bill is on his deathbed. If a paramedic tries to save his life do you think there
will be a problem with that? And if there is a concern that such issue might arise, Bill can sign a waiver of liability.
I hope this is not going to become the new argument that wastes yet more precious time ....instead of just getting PetakiaRose out there.

I don't know. Administering treatment most probably unproven by FDA standards in a hospital without any doctor's consent just sounds like it could lead to huge liability issues (great if a waiver of liability solves them), but if PetaKiaRose is aware of all the problems and wants to get on with the plan it's fine. Personally I would too.
You sound a little embittered as if I, or any other people trying to help, were trying to waste time to begin with, on the contrary I don't think our discussion will do any harm or waste anyone's time, but it could prevent a rude awakening.

Where did you ever get the idea it would be administered in the hospital? I don't think that would be possible.
As for sounding "embittered"...I am afraid that's your impression of my impatience with how slow everybody is moving on this issue.

[thefirstimmortal]

Minni,

Bill said the phones numbers are outdated, but those of the
other two ACAM doctors, Kristin Hughes and Michael McCann,
were still good.

Why don't you call them and see what they say ?

Surely finding a doctor who practises the RECNAC protocol
can't be too hard. Many of the those who practise chelation
should know it.

How about contacting Hugh Riordan's center ? Most importantly,
as I said, find out whoever is managing the supplements fund
and ask if the money is there in the first place to bring a doctor
over from Wichita, if they are willing to come.
There are not that kind of funds available. And we of all people on the planet shouldn't we have the inside tract on how to get this done easily and inexpensively as possiple. What about thise who have promoted this idea in the past in their books. Ray Kurweil, Terry Grossman. How about filling their mailbox with the question of how to get this done. What about the leaders of this very site? Is this whole vitamin notion something only the members believe in???

http://www.brightspo...drs/index.shtml

[Mind]

There is over $400 in the paypal fund. I am not sure how much Anthony has. That should be enough for some IVs of vitamin C, can't be that expensive. I won't request that the Venturists spend the money on treatments because the people who donated that money expect it to be used on a preservation. It would be a long and difficult process re-direct that money. The people who donated for the preservation generally believe IT IS Bill's best chance, even if it is a long shot. It is the difference between being dead forever and having at least a small hope of future life.

[Shannon Vyff]

We have had some people post on Cryonet that if their funds are not used for William's preservation, they then want them to go to Marce's fund. We are working on a way to have William be preserved at CI and are already short on funds, so we couldn't really deplete them. As life at super cold temps is slowed down, cryonicists see preservation at those super cold temps life extension too. It is the best chance when current medicine can not keep a person alive, it gives them a chance for future medicine to work on their problems.

Can't Anthony get funds to PeteKiaRose, so he can travel there to help? I was thinking of mentioning the Hugh Riordan center a while ago within this thread, my grandmother got chelation there and IV vitamin therapy, but they are quite far away and pretty expensive--most people travel to their facility. If we have a volunteer who is qualified -PeteKiaRose--and they can travel to William with funds collected for supplement arsenal (Anthony's fund), with the time being as pressing as it is--that sounds like the best course. PeteKiaRose would have to get the ok from William (or Anthony could get the ok, if talking with William) then PeteKiaRose could travel there.

[thefirstimmortal]

I didn't realize that the weather was complicating travel. I hope some headway is made, there is enough money for a Dr. to be paid--

What are you basing that statement on Shannon? That "there is enough money for a Dr. to be paid"

but we've been seeing that our ImmInst volunteers,

Out of curiosity, what do yoou mean by "our ImmInst volunteers?" and who do you think namely belongs under that title?

friends of Bill's are running into a lot of problems. It sound like Carol is not able to get on-line and read all the information here?

Carols role has nothing to do with following much of what is going on here at imminst.

I wonder if she'd be willing to arrange for Anthony, or Missminni to talk on the cell with William, so they can explain what has been found out about Doctors in the area, how the funds are available and if he authorizes treatment? It seems all have their hands tied, unless William can authorize that they are able to help him.

My location and whereabouts are known. My phonenumber has been updated, 662-7673. Due to the storm and power loss, we decided that the cell phone was better off at Carols since power generators and phone systems here were likely to get restored immediately. Carol was without phone and electricity 2 nights ago. Various reports when it will be resored and we have 2 storms rolling in.

[Shannon Vyff]

I was referring to any ImmInst volunteer such as Missminni or Anthony that has been trying to set something up with you, you'd have to let them work on your behalf. After further reading into what Missminni has found since posting that about having enough money for a Dr. (I was referring to having a Dr. do the IV vitamin therapy) it looks like the Drs in your area don't do that, and someone else would need to who is certified to do IV's like PeteKiaRose. I'm relieved that you are posting here again, I think it is important that you authorize some others to help you in case Anthony can get it set up with PeteKiaRose to do the IV vitamin therapy. I'd feel better if someone could travel to be with you and help you, it sounds like a lot of bureaucracy to be dealing with in the hospital you are in.

[thefirstimmortal]

This one at Scarborough is where the Amrubicin trial
is underway now (and where Bill should have gone to
in the first place).

FYI, Tham, this is 100 Campus drive in Scarborough, where I DID ALL of my chemo this past summer. This is the place I rode my Ninja to once every week for out patient chemo.
Yeah, so he botched my chances at that trial, I missed that Tham. I would like to hear about that in greater detail.

[StrangeAeons]

Sorry guys,
I just contacted my Paramedic instructor about the legalities of doing this and they are overwhelmingly troublesome. Firstly, I am currently only certified as an EMT-Basic. I would first have to certify as an Intermediate EMT to be allowed to administer IVs outside of a specific student setting. Then I would have to file for reciprocity for certification in Maine; and this all assumes that there's a physician there signing an order for me to work under. Evidently this whole process is very drawn out, and would take a month at the very least. Trying to do this without going through the proper legal channels could easily result in me not (and probably never) getting my paramedic certification. I wish Bill the best, and I'm sorry if I got you guys excited over a bad idea, but I cannot help like this.
EDIT: btw, money isn't a huge issue for me, fortunately. I'd be glad to donate a little to the cause, if you guys could direct me to that.

Edited by PetaKiaRose, 17 December 2008 - 07:30 PM.

[tham]

Bill, as suggested earlier, install Yahoo Messenger, or
any other chat engine with voice/video capability like
MSN, Skype.

Minni and the others too, then all of you can chat/talk
in real time. Coordinating your IV C treatment would
be easier.

MSN's cam is very slow though, and hard to connect too.

Skype's phone calls needs to be subscribed, at 2 cents a
minute, I think, but it's the clearest for voices.

[thefirstimmortal]

I don't know who to ask but I hope someone can reason with this monster. Who thinks in this day and age that a vitamin regimen is radical?

Actually, their are many here at this very site who still think it's radical.

[tham]

Oh boy, it's back to square one at finding someone
to do your IV C therapy then.

[thefirstimmortal]

As long as Bill is at MMC, he will be under Kurt Ebrahim,
whom as you said won't let him have access to IV C.
HIs only option is if he checks out of the hospital and
goes home.

The other option would be to go over to MCCM, but Bill
is already out of contention for the amrubicin trial. This
additional chemo cycle which Kurt is putting him on today
looks like the third one ?

That would be correct, this is the Third Protocol.

[missminni]

Oh boy, it's back to square one at finding someone
to do your IV C therapy then.

Honestly, I don't know, unless it's under the supervisions of a doctor, if
anyone will do it. I suggested local EMS people at one point, but
they would probably have similar issues.
At this point, I would just work at trying to do sublingual methods of
supplementing. I understand you don't have saliva enough to do that,
but maybe finding something that you can dissolve the supps in...
vit C is water soluble..and resveratrol can be dissolved in a few
different things....I don't know what else to suggest. I have never
encountered so many obstacles before.
If there are options you are not considering...like other doctors...because of
money, please let me know...There are a few members who offered to contribute
to that effort quite a while ago and I will get in touch with them.

[Mixter]

That would be correct, this is the Third Protocol.

Hang in there. I hope you manage to get your IV very soon.
At least some people are looking for opportunities to do that now.

Could you do me one personal favor and insist on checking CBC every
day as long as this chemo will go? Low red blood cells mean you
need EPO or a transfusion, very low white blood cells mean you need G-CSF
and/or GM-CSF and/or possibly reverse isolation against infection.

I'm asking you this because I fear that this may be your biggest mortality
risk from the chemo if not carefully observed. Citation below.

Source: http://journal.medsc...le/572732_print

Toxic events were mainly hematologic in nature. Not surprisingly, there was more toxicity in the high-dose group, but it was also substantial in the standard-dose group, the researchers comment. In the high-dose group, 8 of the 69 patients who were randomized never started chemotherapy; however, of the 61 who did, all (100%) developed grade 4 leukopenia and thrombocytopenia and 54 (88%) developed grade 3/4 anemia. Among the 71 patients in the standard-dose group, 49 patients (70%) developed neutropenia (≥ grade 3), 17 (25%) developed thrombocytopenia, and 17 (25%) developed anemia

Edited by mixter, 17 December 2008 - 09:49 PM.

[Heliotrope]

Sorry guys,
I just contacted my Paramedic instructor about the legalities of doing this and they are overwhelmingly troublesome. Firstly, I am currently only certified as an EMT-Basic. I would first have to certify as an Intermediate EMT to be allowed to administer IVs outside of a specific student setting. Then I would have to file for reciprocity for certification in Maine; and this all assumes that there's a physician there signing an order for me to work under. Evidently this whole process is very drawn out, and would take a month at the very least. Trying to do this without going through the proper legal channels could easily result in me not (and probably never) getting my paramedic certification. I wish Bill the best, and I'm sorry if I got you guys excited over a bad idea, but I cannot help like this.
EDIT: btw, money isn't a huge issue for me, fortunately. I'd be glad to donate a little to the cause, if you guys could direct me to that.

good job trying. I'd donate too. Don't know how close you're to Intermediate EMT, but the paperwork and legality/liability could take a ~month like you say. But there's NOT a single IV-dripper , or a Dr on our side in ME ? how about other Imm"ers in maine? cant imagine VitaC-IV being expensive and complicated

I don't know if Bill's health is strong enough to last a month, surely he can survive and last past new yr right? this is season of giving , let's give to the right cause.

Edited by HYP86, 17 December 2008 - 11:22 PM.

[thefirstimmortal]

Carol has nothing to do with it.
She is just obeying Bill's instructions.

Carol has nothing to do with this ? Bill's instructions ?

You mentioned that Carol is "very protective" of him, wouldn't give you
any info and hasn't returned your calls or called Anthony after you
gave your phone numbers.

How could these be Bill's instructions ?
Carol does not know any of you, she knows that at any time a reporter or government agent could be on the other line. She isn't to give out any information under any circumstances.
I don't know what's going on, really.

As Kismet noted, the situation now is abysmal and out of control.

At this rate, nobody is going to be able to help Bill. Everyone seems to
have their hands tied, as Shannon noted.

And even if you finally manage to contact Bill at the hospital or after he is
discharged, I doubt if Bill would want to go ahead with the IV C. He wasn't
keen earlier when he was at home,in much better shape, and posting here.
He seems concerned about the venous constrictor in the Maine Integrative
Center's vitamin C infusions. He also felt the cost of $175 per treatment
(at the center) was too high, and wasn't keen on using his supplements
or Paypal funds for this purpose.

In any case, I don't think there's enough funds for in-house or in-hospital therapy
by a doctor coming from the Maine Integrative Center or elsewhere - there is
barely $2,000 ($1,500 in the supplements fund and $446 in the Imminst
Paypal fund as reported by Mind), without going for the Cryonics fund.
Such visits would cost at least twice the above.

This procedure should be cheap and readily available to any Life Extensionists. It requires little expense in chemicals and equipment, and the only technical part to this that needs to be done with care is the IV line run in. We need a nurse and a needle not a Doctor. We know what has to be done, run x amount of Sodium Ascorbate through an IV.

And you noted that Bill won't use the Cryonics fund for other purposes, as
he feels it would be unethical to the members who had donated.

But I guess requests could be made for more donations to the supplements and
Paypal funds to continue the IV C sessions, once a doctor is found for this purpose
and the ball starts rolling (and he is allowed access to the hospital if it is going to
be performed there, that is).

[thefirstimmortal]

Here's the situation :

1. Minni, Bill confirmed that Jeffrey Young has no
authority over this whole issue - Kurt Ebrahim is the
one who has the last say.

2. Kurt Ebrahim won't even listen to him about being put
on a trial of amrubicin. He's the one who will decide his
chemo protocol. He can't ask for a transfer to Matthew
Dugan (director of the amrubicin study) in the Maine Cancer
Center in Scarborough too. Kurt has a residency there as well,
and Dugan knows Bill is Kurt's patient. Ethical red tape.

3. Kurt won't let him try the vitamin C infusion there. I guess
that is understandable if one takes Kurt's point of view. What if
complications arise, whether from the vitamin C treatment or
interactions with the chemo, or it just nullifies his chemo's
efficacy ? Or even if the vitamin C doesn't cause any problems,
but the chemo does, people (including the patient) may still say
that the vitamin C was the culprit. A question of liability. He doesn't
want any problems and doesn't want to be held responsible for any.

Yeah, liability..  you mean like "oh no.. a terminal SCLC patient died... damn it, how unexpected?!?" That is the exact reason why trials and compessionate use are the only interesting therapeutical approaches for terminal cancer, because those patients die anyway on standard therapy (99%). It's not as if he couldn't do the IV vit c before or after chemo anyway!
There are so many doctors trying experimental treatment and trials going on in Germany for advanced prostate cancer for instance, it's sad that it could be any different in the USA in the case of SCLC.

Good to know, however, that we have worked out the issue with CI and TFI is at least receiving some therapy. Now you need to refine the treatment, get the IV res or vit c and other supplements, but chemo will buy some time hopefully.

Bill, you buy me a beer when this is over, in exchange for my donation, don't you?

I'll be right over after I get Ozzy's lawn.

[thefirstimmortal]

Worst of all cases... shouldn't be impossible to administer a sterile IV yourself (or by help
from relatives) in a hospital setting if you already have the drip in your arm and sterile NaCl
solution gloves lying around and the substance you want at hand...? adding minimum amounts
to a standard NaCl solution drip bag to get 5%, then slowly doubling the amount to be careful...
Maybe I'm crazier than you though this is what I would attempt in a life and death situation.

I've been talking about doing this at home with my own equipment for sometime now.

Another thing, asking LEF (1-800-226-2370) for advice by phone or mail. I can also write
them a line and forward it. I have LEF Membership and will get a response from the advisory
service within 24 hours... (just let me know IF and what exactly I should ask, beyond that
you're immobilized and need to find a practitioner for alternative IV badly, in case...).

Your not going to get a useful response.

Below are two more addresses in Maine. I keep fingers crossed and wishing that you find a
House kind of doc that storms into the clinic, brushes your Dr.Ebrahim away and just does the damn IV.!

WATERVILLE:
Arthur B. Weisser, DO
184 Silver St.
Waterville, ME 04901
(207) 873-7721

YARMOUTH:
Steven Amato, DC
30 Forest Falls Rd.
Yarmouth, ME 04105
(207) 563-1000

Mixter, I've posted on multiple occassions that Arthur B. Weisser is retired. Your sources are outdated

[StrangeAeons]

FWIW, the primary issue in my case is that of certification. There are hundreds if not thousands of EMS personnel in Maine who are licensed (Maine licenses EMS personnel, whereas Indiana certifies) to perform IV access. The minimum level of training to access IVs there is an EMT-Intermediate, although they are technically only only qualified to administer fluid therapy. A paramedic (EMT-P) is inherently qualified to administer drugs, though only through the protocols and medical direction of a physician. You could put up a wanted ad for a paramedic to make some money on the side (most medics have to work at least two jobs) taking care of IV access; they're also the ideal personnel to have if you need to perform resuscitation. If you can get a physician to document authorizing the paramedic to administer the medications, and furbish the paramedic with sufficient paperwork for them to feel legally safe, then you can hire a local paramedic to moonlight for you.

[zorba990]

Has anyone suggested Lypo-Spheric Vitamin C? (Oral Liposome Vitamin C)
http://www.livonlabs.com/
or maybe
http://www.lipoflow....g...x&cPath=1_4
or homemade? (I've not gotten around to getting my sonicator yet)

[lunarsolarpower]

A paramedic (EMT-P) is inherently qualified to administer drugs, though only through the protocols and medical direction of a physician. You could put up a wanted ad for a paramedic to make some money on the side (most medics have to work at least two jobs) taking care of IV access

This sounds like a scenario that could be solved by someone with control over one of these funds (or someone acting with their consent) first finding a cooperative physician - perhaps from Live Person's Health or diet & nutrition pages. After the physician is lined up a post to craigslist gigs could find the boots on the ground to make something happen. Thoughts?

William: have you had a chance to play the Re-Mission game? It's available free and I've read about studies that showed playing these type of games actually outperforms placebos in defeating cancer.

Edited by lunarsolarpower, 18 December 2008 - 05:28 AM.

[thefirstimmortal]

Not sure if this is the best spot to post this:

Cancer's Sweet Tooth
http://www.newhope.c...r_00/cancer.cfm

For years I've recommended (including many times in this forum) that anyone with cancer avoid sugars, grains and starchy carbs. In fact, if I had cancer, I would not eat ANY carbs period (other than the carbs in my cancer fighting supplements). But then, I'm pretty hardcore and always willing to go the full mile.

Effects of a ketogenic diet on tumor metabolism and nutritional status in pediatric oncology patients: two case reports.

Also, cancer and metabolic control.

BTW, I strongly suspect that when under hospital care, the diet offered is full of grain and starch carbs. Hospitals, after all, are run nutritionally clueless fools.

en on the menu, but there is some. I notice the menu has changed slightly since I've been here last. no Costa Rica Salad, I used to love that one. But they do have Haddock, which if I could eat that I would. Love fish.

[cronnie]

I am sure i ask for many others:

How can i contribute? Where exactly can i donate?

Thanks,

cronnie

[tham]

Sean McCloy of Maine Wellness replied me, saying that
he is not taking new patients at the moment.

He mentioned Ray Psonak in Gray, whom I noted you
had tried calling earlier in August. He said he had heard
negative comments from patients about his office's
cleanliness though.

[missminni]

FWIW, the primary issue in my case is that of certification. There are hundreds if not thousands of EMS personnel in Maine who are licensed (Maine licenses EMS personnel, whereas Indiana certifies) to perform IV access. The minimum level of training to access IVs there is an EMT-Intermediate, although they are technically only only qualified to administer fluid therapy. A paramedic (EMT-P) is inherently qualified to administer drugs, though only through the protocols and medical direction of a physician. You could put up a wanted ad for a paramedic to make some money on the side (most medics have to work at least two jobs) taking care of IV access; they're also the ideal personnel to have if you need to perform resuscitation. If you can get a physician to document authorizing the paramedic to administer the medications, and furbish the paramedic with sufficient paperwork for them to feel legally safe, then you can hire a local paramedic to moonlight for you.

This was a scenario I suggested to Bill last week and sent him a list of EMS personnel in the town of Acton, where he lives. I don't know if
he had a chance to contact any of them yet.

[thefirstimmortal]

Seems your situation is dire. I hope you survive. How many accounts are there? how much money donated? $600 at imminst, thousands of dollars at other accounts and orgs? Why not consolidate funds? Money's given to help you , so should be used for whatever's good.

The funds can't be consolidated. Seperate organizations have collected money for differrent goals.