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Old 04-01-2007, 09:17 AM   #1
CLTann
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The point is well taken. I certainly agree wholeheartedly. I also believe that to make a difference, we need funding from a major donor or a group of major donors, such as Gates foundation, to lead the crusade. The small, though enthusiastic, grassroot support does not change the tide. We cannot totally blame on the drug companies whose major responsibility is indeed to provide profits for their stockholders. We need to arouse those who are key trend setters to see our objectives. If we would start a letter writing campaign, I would be more than happy to participate.
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Stage 1 dx Sept 05
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Old 04-01-2007, 09:35 AM   #2
Grace
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Thanks Ann,

I agree we can't blame the drug companies. We have to look to ourselves. I never gave much thought to the whole issue of cancer funding (with the exception of universal health care,which I've supported for years), but selfishly I'm now very interested. My own instinct is to focus on one or two possibilitites, the research at the U. of Alberta on DCA is my first interest, and I've already written to them asking how I can help in their fundraising campaign for the projected clinical trials. I'll let you know if anything comes of that. I've written to the Gates Foundation previously about other issues like AIDS funding in Africa but never got a response, so I may let that one go.
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Old 04-01-2007, 10:46 AM   #3
vickie h
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Ralph Moss

Grace, Drug companies have been trying to discredit Ralph Moss for years. Cancer has become a mega industry for pharmaceutical companies. I think we need to stay pro-active and listen to all sides of the cancer debates. Ralph Moss used to work for Sloan-Kettering and has seen alot of fraud, reporting such facts to those who have ab open mind and a will to change the way our health care choices are run. I. for one, think he has done amazing work and will continue to follow him. There is room for alternative or complimentary medicine right along with allopathic medicine. Some of the top Oncologists are now seeing the need for "alternatives" to the treatment of cancer. Thank you for you message and I would love to be a part of the change. Love, Vickie
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Old 04-01-2007, 11:13 AM   #4
Grace
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Hi Vicky,

As I mention above I never heard of Ralph Moss before reading the article I posted, and honestly have no idea what other positions he may have taken. However, what he says in this article is, I think, difficult to dispute. Drug companies are not philanthropical organizations--their purpose is to make money for their stockholders. Whatever good they do is secondary and, of course, they do lots of good. Thus, I think it's very important that other, primarily non-profit, organizations be involved in developing and testing drugs that offer no profit to drug companies. Obviously, if a drug can't be patented a drug company is not interested. In cancer research and drug development, we need both: the drug companies and the universities and the governmental agencies. I can't do anything for the drug companies but I can for non-profit groups. So that's my goal for the year.
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Old 04-01-2007, 01:59 PM   #5
vickie h
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Grace,

You are exactly right! Ralph Moss has several books and arcticles that he's written over the years. He is quite knowledgable about cancer and has done much good in the way of educating people about alternatives, along with conventional therapies. Pharmaceutical companies have long tried to keep a muzzle on any kind of treatment that they cannot profit from. I am grateful for advances that have been made, but I always keep an open mind and ear to ALL kinds of treatment. Thanks for your input. Ralph Moss has his own web site and you can google lots of info about him. Love, Vickie
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Old 04-01-2007, 03:24 PM   #6
vickie h
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Quackery? Or Truth?

It is always the small, grassroots groups that change the tide, never the Big Guys, etc. All change has been started by people like you and me, people who refuse to wear blinders, who forge ahead in times of change. They are the change! Look back on slavery, women's rights, the Vietnam war, and now cancer. Stand strong and continue to seek the truth. As for the Quackery web sites.....Some of our greatest minds, our greatest scientists and leaders were considered "Quacks" in their time........ Love, Vickie
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Old 04-01-2007, 06:45 PM   #7
heblaj01
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Regarding the private funding of research on unpatentable drugs mentioned in above posts maybe this Forum could follow the example of some other similar organizations who helped fund part of some projects & thus gain some recognition & better access to the progress of the scientific work. One instance I am aware of is the CLL TOPICS web site which at one time funded the purchase of Honokiol in China for the lab work of a US group of researchers seeking a new treatment for Chronic Lymphocytic Leukemia (CLL).
Could this be more effective than individual donations? Any comments?
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Old 04-01-2007, 10:35 PM   #8
Melinda
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Howard Hughes ahead of his time

FOod for thought
I was just reading about the Howard Hughes Medical Institute. A privately funded non for profit medical research facility and I quote"
"A revolution is taking place in biology, one that promises to transform our understanding of the living world and produce major advances in medical care. Among its leaders is the Howard Hughes Medical Institute (HHMI).

<!--[[p]] ** INSERT VIDEO HERE ** [[/p]]-->The Institute is a nonprofit medical research organization that employs hundreds of leading biomedical scientists working at the forefront of their fields. In addition, through its grants program and other activities, HHMI is helping to enhance science education at all levels and maintain the vigor of biomedical science worldwide. "

The HHMI web site is quite interesting. As privately held it has the ability to negate the "red tape" often associated with government funding for medical research
The cost of the research being done thru HHMI or should I say lack of cost certainly should eliminate much of the expense that the drug companies say are involved...... unless I am misunderstanding this whole premise???

60 minutes did a feature on this and the link is below
http://www.cbsnews.com/stories/2003/...in584945.shtml
Interesting reading and a smart/rich man for whatever purpose .... what he did and why is now benefiting medical science.
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Old 04-02-2007, 06:13 AM   #9
Grace
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Alas for the rats, most research on them does translate to humans, since that appears to be the research model these days: hypothesis, test tube, rat phase, then if the research shows promise, clinical trials on humans. If there's no money to continue to clinical trial, the research stops and any possible benefit to humans is not realized. Herceptin and many of the drugs we’re taking had their rat/mouse phase. And after six months on herceptin whenever I see a mouse go by, I think there with the grace of God go I.
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Old 04-02-2007, 06:33 AM   #10
Grace
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Melinda,

Thanks for information on the Hughes foundation. I had no idea it existed.
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Old 04-02-2007, 09:42 AM   #11
vickie h
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Thanks Grace for your insight about research. Cancer is affecting humans and animals in epidemic proportions. I have heard that cancer is on the decline (yet there are numerous reports that state just the opposite), I think the survival rates may be a little longer because of drugs like Herceptin, Tykerb, etc for Her2 positive patients, but I cannot speak for other forms of this disease. am glad that this site is funding "alternative" research here in California. And as for that mouse, amen, I feel the same way. Love and Peace, Vickie
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Old 04-02-2007, 12:22 PM   #12
hutchibk
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Grace, I agree that a lot of animal research also does translate to humans... but a lot of it doesn't. Like you said "...hypothesis, test tube, rat phase, then if the research shows promise..." And that is always a big IF.

There has been much that doesn't move forward after the rat/animal phase, and there has been much that has moved forward but has failed in humans.
And of course, there are the successes! All I am saying is that I remain cautious about anything I hear about in the rat phase, since it is too early in the process to know anything about how it will do in humans. I do thank the rats who helped test the stuff that is keeping me alive today, though!
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NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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