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Bad news

POSTED BY: DREAMTROVE
UPDATED: Wednesday, May 23, 2012 06:16
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Sunday, May 20, 2012 7:59 AM

DREAMTROVE


Hi guys. I'm not really back, nothing personal, just politics, I've given it up, way too much other stuff on my plate. I just thought I should toss this out in case anyone had any brilliant ideas;

My sister's cancer came back and this time looks to be inoperable. There have been some ideas floated like a kit that bombards the brain with EMFs to keep the tumor from growing, or an herbal in cameroon that seems to involve flying to cameroon and slashing through the jungle to get, and then there might be some more trials, injecting the brain with a virus, or dendrites, or a combo of the chemo drug she's been on plus another chemo drug of a not dissimilar nature.



You can keep doing that forever, the dog is NEVER going to move.

ETA: what happened to color? I use to have colors.

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Sunday, May 20, 2012 8:00 AM

DREAMTROVE


Dbl

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Sunday, May 20, 2012 8:03 AM

DREAMTROVE


Trpl

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Sunday, May 20, 2012 8:12 AM

BYTEMITE


:(

Well, you've researched this a lot more than I have, and you have a good idea of the specific proteins and genetics involved in the tumours. I wish I could help.

Her body is going to be under stress so when trying all these treatments it's going to be an exercise to keep from pushing it over a breaking point.

I think that a tailored virus or enzymes for the bad proteins administered locally would probably be the best bet, but sometimes those options have unexpected consequences in-vivo.

I'm curious about using the two similar chemotherapy drugs, if they both have similar method of actions, then I don't see how using both would be much different than doubling the dose of one, and isn't that dangerous?

As for the cameroon one, is there any way to hire someone there to get it and send it to you? What is the herb?

In any case, I'm sorry for you and your sister, it's going to be tough.

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Sunday, May 20, 2012 9:19 AM

ANTHONYT

Freedom is Important because People are Important


Hello,

You and your sister have my best wishes and my prayers. No matter what you decide, remember not to blame yourselves for the decisions made now. In the dark, all we can do is grope blindly and hope for the best.

--Anthony


Note to Self:
Raptor - women who want to control their reproductive processes are sluts.
Wulf - Niki is a stupid fucking bitch who should hurry up and die.
Never forget what these men are.
“The stupid neither forgive nor forget; the naive forgive and forget; the wise forgive but do not forget.” -Thomas Szasz

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Sunday, May 20, 2012 9:42 AM

SIGNYM

I believe in solving problems, not sharing them.


Have you heard of a gamma knife in the Bay area? Inoperable brain anything (tumors, ateriovenous malformations etc) are exactly what the gamma knife does best. Also try looking into Norris Cancer Center in LA, or City of Hope. They're looking into all kinds of ways to target anti-cancer drugs, like adding ferric compounds to antigen-directed compounds, then using an MRI to burn out the specific cells. You might look into these options.

I wish the best for both of you. We have beaten the odds with experimental therapy. May your sister do the same.

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Sunday, May 20, 2012 9:57 AM

1KIKI

Goodbye, kind world (George Monbiot) - In common with all those generations which have contemplated catastrophe, we appear to be incapable of understanding what confronts us.


That is so distressing to hear. What SignyM said. I wish you the best.

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Sunday, May 20, 2012 10:06 AM

MAL4PREZ


I'm really sorry to hear about this, DT. I don't have any suggestions since I know very little about medical things, but I'll send all the positive thoughts I can into the void, hoping they reach your sister. Please do hang out here for Browncoat support. No politics, just a tight crew.

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Sunday, May 20, 2012 11:02 AM

DREAMTROVE


Sig

thanks, gamme knife, I'll look into it.


Byte,

The herb is called Assounka in the region of cameroon, which i believe is north of meelong, which is not a very large town in the Mbongo Mbo area, which I think is the name of a river, at any rate, that is where the plant is to be found. I gather it is fairly unmistakeable. I could go if there were a reasonable way to get there and I could tell one Macaranga plant from another. The scientific name is macaranga schweinfurthii, and the compound is called schweinfurthin a.

also, i concur gene therapy via retrovirus etc. sounds best, but i can't get the docs to agree.

using similar drugs together sometimes boosts effectiveness because they're similar, not identical, they may use different metabolites, etc, so that may get you through a natural bottleneck to a higher dosage. It's not much of a chance, but it's a chance.

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Sunday, May 20, 2012 11:34 AM

BYTEMITE


Quote:

Our interest in Macaranga originated in the observation that an organic extract of
Macaranga schweinfurthii Muell.Arg. (Euphorbiaceae) leaves possessed potent
(mean 50 % growth inhibition of 2.2 µg/mL) and differential (>2000-fold) activity
in the NCI 60 human tumour-cell assay (Figure 1). The most sensitive cell lines
included several brain tumour cell lines, especially the glioblastoma lines SF-295
and SF-539, and a number of lines in other organ panels.



http://library.wur.nl/frontis/medicinal_aromatic_plants/22_beutler.pdf

Wow. This is pretty major. Yeah, definitely get your hands on some of this. The only concern may be that the plant is considered endangered, so you may have to figure out how to gather and/or ship seeds or something to yourself and try to grow it here. And that's not the only plant that produces the compound, some which might be more accessible to you. The common link in that article appears to be that the chemical is produced in response to insect infestation.

And then you have to hide it from the pharmaceutical companies who will either try to steal or destroy the crop.

Quote:


using similar drugs together sometimes boosts effectiveness because they're similar, not identical, they may use different metabolites, etc, so that may get you through a natural bottleneck to a higher dosage. It's not much of a chance, but it's a chance.



Hmm. Okay, yeah, can't exactly be turning down ideas at this point.

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Sunday, May 20, 2012 12:51 PM

WISHIMAY


DT,
I sympathize with your family. I wish your sister much luck, as I have no confidence in the medical establishment. I don't belive anyone ever is truly "cured" of cancer, but some bodies can be kicked into fighting it off for a while. I asked my old gran if she'd ever known anyone to fight off a cancer completely and she said no. And she's known a LOT of people, being a hairdresser for 50+ years.

Not trying to rain on anyone's parade, but I'm a realist.

Again, Good luck........

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Sunday, May 20, 2012 12:52 PM

PIRATENEWS

John Lee, conspiracy therapist at Hollywood award-winner History Channel-mocked SNL-spoofed PirateNew.org wooHOO!!!!!!


Baking soda with molasses in a cup of warm water to alkalize the body (cancer victims are so acidic the body liquifies). No pain. Google for dosage.

Might try drinking Hoxley's blackroot/bloodroot/polk-salad, or applying as a salve on a nearby part of the body if the cancer has a tentacle/root nearby. Possibly lots of pain but cancer may liquify and disappear.

Dr Gersen's macrobiotic vegitarian diet has cured many "terminal" cancers.

Selenium.

Dr Joel Wallach's vitamin/minerals.

No sugars, it feeds the cancer (fungi).

Good luck.

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Sunday, May 20, 2012 2:03 PM

M52NICKERSON

DALEK!


Sorry to hear about your sister DT.

I do not fear God, I fear the ignorance of man.

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Sunday, May 20, 2012 2:18 PM

DREAMTROVE


Byte,

alas, they're all like that when they're first introduced. Somewhere in between the petri dish and the person, they stop working. That said, this one attacks the one gene we specifically know she has, because she has neurofibromatosis. It didn't cause the cancer, but it's part of it, there have to be at least four mutations for the cancer to become unstoppable.


Wish,

strangely, in this case you can, and you have to. If you do not get 100% of the cancer, the patient automatically dies, and within a pretty short timeframe. Everyone once in a while there's a long term chronic case, but mostly it's like pokemon, gotta catch 'em all. I think that's why the casualty rate for GBM is so high.


Pirate,

It's brain cancer. She's been on the ultra natural diet plan, which extends your life in this case, but not by much. Her prognosis was for 14 months and she's currently at 18 months. They seem to be giving her 3-5 months from her. The main problem for body chem altering plans for brain cancer is that the brain regulates its state very carefully, re: acidity, glucose content, etc. so that it can continue to operate because if it doesn't, you die. As a result it will just start robbing other tissues if you go too low.

But thanks for the ideas, all keep them coming.

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Sunday, May 20, 2012 3:04 PM

BYTEMITE


My family has neurofibromatosis as well, just manifests differently. Acoustic and spinal and meningeal nueromas. Your sister's seems to sound more serious though.

I noticed that the article mentioned glioblastomas, that really caught my attention.

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Sunday, May 20, 2012 3:28 PM

DREAMTROVE


It's more specific than that, the thing targets the NF1 mutation in GBM cells and does not interfere with it elsewhere. It sounds ideal, getting it may be a problem, and getting it to the brain may be a bigger one.

Jenny's NF1 wasn't originally more severe, it was probably less so. It's mostly localized to the right leg. She has random other occurences, but it seems that it was actually located to the left temporal lobe, in between the language center and the signal center for the right leg bone growth. That was what got knocked out initially. It didn't become cancerous until it was re-mutated. It takes four or five mutations to make a malignant cancer because your body has so many defense mechanisms against it. So, she initially had the NF1, which is one of them, and got the P53, PTEN, and a host of others. She actually has a mutation of MGMT, which should increase your survival chances, but it hasn't so far had much of an impact.


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Sunday, May 20, 2012 5:00 PM

CANTTAKESKY


I am so sorry, DT.

Just tossing this out for whatever it is worth.

Artemisinin (Chinese herb) has an affinity for iron that cancer cells use for growth.

http://www.ncbi.nlm.nih.gov/pubmed/22174561

If you were so inclined, the person to talk to about how exactly to dose the artemisinin would be Henry Lai at Univ of Washington.

http://depts.washington.edu/bioe/people/core/lai.html


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Sunday, May 20, 2012 8:56 PM

WISHIMAY


Quote:

Originally posted by DREAMTROVE:
gotta catch 'em all.



That's what I meant.. I don't think that in most cancer cases you can. You can do surgery, and alll the chems in the world, but I don't believe you CAN get every single messed-up cell out of the body or killed off(how many trillions of cells we got?). That's why you hear so much of the time "I was in remission for x amout of time, but then it came back." Not even an immune system is capable of recognizing and rendering ALL cancer cells inert, and all it may take is one cell to fire it back up...

More of a theory I have than any kind of particular directed comment on your sisters case.
By all means, do whatever you think can be done. I hope I'm wrong and I'll still keep my fingers crossed, irregardless.

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Monday, May 21, 2012 1:40 AM

DREAMTROVE


Wish,

partly it depends on the size of cells, her cancer is a giant cell cancer, so there would be fewer of them, but that just means millions to billions instead of billions to trillions. They've gotten it down to 10,000 or so but then it comes back. I think in theory you could kill them all, and you'd have to to survive.

In case of remission, I think there are two possibilities for that in GBM: one is there's a virus that is suspected of blocking one of the genes because its microRNA is a match for the blocked mechanisms messengerRNA; the other possibility with some cancers could be the cancer could burn itself out because if it's high reproduction rate and low telomere count, which unfortunately for Jenny, hers is a stem cell cancer, so it has an unlimited lifespan. Also, being in the brain, the white bloodcells can't access it.


CTS,

There are a number of understudied chinese medicines. O2tB pointed me to one last night. Another anti-angiogenic would be good though. Her GBM spawns its own bloodvessels from its stem cell line, as well as requesting them from the system. Its native blood vessels are of course made of cancer cells, so they more resemble caposi's sarcoma than any sort of organized circulatory system. It's a major problem with her mesenchymal subtype. (plus added bonus of anti-malarial effects in case she needs to go to Cameroon)

Anyway, looks like a good one, thanks. One of the snags we have is that virtually all the drugs we can get are on trial, and so we can only have one, or at most two or three of the most popular, at once, because otherwise it fucks up their study data. So, any number of over the counter herbals are good because you can stack up multiple ones against the cancer.

Any thoughts on how one might get leaves from cameroon?

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Monday, May 21, 2012 2:30 AM

CANTTAKESKY


Quote:

Originally posted by DREAMTROVE:
Any thoughts on how one might get leaves from cameroon?

Yes. I was thinking about that last night. I actually have an acquaintance in Yaounde (ETA: sorry, it's Douala) I haven't talk to in 10 years.

If you are serious about doing this and are willing to spend some money (cause we'll have to pay someone to get it there), I'll talk to Hubby and his best friend today and see what I can come up with.

I am not sure how you can get it in the States once we get a hold of the leaves. Customs is pretty strict about prohibiting the entry of vegetation.

But in the meantime, please seriously consider artemisinin. It is widely available in the USA, and the effects both in vitro and in vivo are quite encouraging. The mechanism of action is actually known, so it's not woo. Henry Lai is the go-to guy on artemisinin and cancer. I've emailed him a couple of times before, and he is very approachable.

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Monday, May 21, 2012 3:55 AM

BYTEMITE


Well, and Cameroon isn't the only option, the article I posted indicated that a lot of related plant species may produce that chemical in response to insects and herbivores.

A list of related species: http://en.wikipedia.org/wiki/Macaranga

I note that you can probably BUY or order http://en.wikipedia.org/wiki/Macaranga_grandifolia as it's a popular ornamental garden plant here in America. If you wanted to start trying to distill the compound right away.

Here's another related species from Australia - http://en.wikipedia.org/wiki/Macaranga_tanarius

Both are grown in Hawaii for reforestation projects, and further research indicates that there is a long and interesting history of herbal remedies and alcohol based drinks involving the plants (ethanol is used to extract the compounds from the plants).

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Monday, May 21, 2012 6:22 AM

DREAMTROVE


Related species but do they carry the schweinfurthin a? if so, why did everyone trek back to cameroon?
I think there are other schweinfurthins. I'm not sure, more data is needed, brain empty again.

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Monday, May 21, 2012 8:08 AM

CANTTAKESKY


Quote:

Originally posted by DREAMTROVE:
Related species but do they carry the schweinfurthin a? if so, why did everyone trek back to cameroon?
I think there are other schweinfurthins. I'm not sure, more data is needed, brain empty again.



They say other species CAN make schweinfurthin (see excerpt below), but according to Beutler et al, only one other makes cytotoxic schweinfurthin-like compounds and they didn't identify the species in this article. But even in the same species, they have trouble extracting schweinfurthin if it isn't from the Korup National Forest.

Quote:

However, none of the extracts originating from the other Macaranga species demonstrated a cytotoxicity profile consistent with the schweinfurthins. While schweinfurthin-like compounds have not
to this date been found in NCI Macaranga collections, other reports show that the ability to biosynthesize schweinfurthins is not unique to the single species M. schweinfurthii. Indeed, the compound vedelianin was isolated from M. vedeliana from the Loyalty Islands, New Caledonia prior to our work, although no bioactivity was attributed to it at the time (Thoison et al. 1992). Mappain, an analog of schweinfurthin C in which neither side chain is cyclized, was isolated from a Philippine species, M. mappa, growing in Hawaii (Van der Kaaden et al. 2001). Most recently, the Kingston group has reported isolation of cytotoxic schweinfurthin analogues from a Madagascan species of Macaranga (Yoder et al. 2004).

One potential reason for the inconsistent occurrence of schweinfurthins might be that production could be a response to herbivory, or to another type of threat to the plant’s well-being. Indeed, the voucher specimen for the initial collection of M. schweinfurthii is a large leaf full of holes (Figure 3; see colour pages elsewhere in this book), presumably due to insect damage. Another independent photo of this species on the worldwide web at ...(see below) shows similarly perforated leaves.



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Monday, May 21, 2012 8:09 AM

CANTTAKESKY



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Monday, May 21, 2012 8:15 AM

NIKI2

Gettin' old, but still a hippie at heart...


Just popping in to offer my sympathies to both you and her. All of you know more about this stuff than I do, I just wanted to wish both of you the very best.


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Monday, May 21, 2012 10:20 AM

BYTEMITE


It's hard to know whether or not they produce the compounds (or related compounds with enough cytotoxicity) without knowing whether the people working with the other species on were using leaves with holes in them.

But, it IS possibly worth a shot. I say set up plans for Cameroon AND get a grandiflora WITHIN the US - it seems tropical nurseries here and there sometimes have them for sale.

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Monday, May 21, 2012 11:45 AM

DREAMTROVE


All the samples I've seen were bug eaten, but I didn't make the connection, I just figured the bugs like them some schweinfurthins. After all a bug is so small and his brain is so much smaller he's really not up for a brain tumor.

So it really is just like the movie. Well, turn your camera on, cameron, we're going to cameroon.


Thanks niki

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Tuesday, May 22, 2012 4:49 AM

CAVETROLL


Didn't see this before now. Nothing to add, except, I'm very sorry to hear this. Wishing you and your sister the very best that life can offer. Prayers sent for her and your entire family, DT.

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Tuesday, May 22, 2012 7:50 AM

DREAMTROVE


Thanks

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Wednesday, May 23, 2012 6:16 AM

RIONAEIRE

Beir bua agus beannacht


A DT a chara,
I'm really sorry about what's going on with your sister. I was hoping that since we hadn't heard in a long time things were improving and you were busy being happy with her and spending time. :( Sending prayers for you guys, best wishes with Cameroon and your other efforts.

I assume you're my pal until you let me know otherwise.

"A completely coherant River means writers don't deliver" KatTaya.

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