1. wow! what an amazing forum. you are an inspiration and very courageous!! my husband and i feel so connected to you and your experiences. when i was diagnosed almost 5 years ago w/ stage 2 oligo astrocytoma (brain cancer) i was given 4-6 years to live. i've had recurrence since and even though i'm tumor-free for now, i know it is a waiting game. i, like you want honesty but need a balance with hope too as elizabeth mentioned. i couldn't stand the brain tumor ward at the first hospital i went to in ny, so i left and found brigham and women's in boston where i was treated like family. dr. peter black saved my life.

there is a topic that wasn't raised in the program which, i would love to see addressed on your blog. i am going to europe for vaccination therapy that is only available here in the states if you are a grade 4. when there is little hope for so many of us why does it appear that so many people do not look outside the box and seek treatments abroad? i'm finding hope with a disease that offers so little. there are a multitude of treatments that are endorsed by the ama but are not available here in the states. yes they are costly but who cares??? it's better than hospice. afterall, i have 2 daughters to raise and a lifetime of living to do.

Posted at 1:12AM on May 7th 2007 by jen kasuga

2. Hi

I'm watching the program right now and want others to know about and investigare this potential treatment. I'm on my 3rd round with cancer and am ordering it. Chemo is the real death sentence IMHO. Dig deep into the site, click on all the links. Go back to it several times, it makes sense.

http://www.anticancer.net/vaccine.html

Posted at 3:36AM on May 7th 2007 by lori

3. Hi Jen,
Congratulations on your progess and your spirit. It truly takes courage to look outside the box. About your comment that it's costly but who cares... as someone (like many) who went through cancer without insurance, I can say that the sad and brutal truth is simply that if you don't have the money to pay for these treatments, and/or travel to get them, you go without them. In this country, anyway. So many options depend on economics, and if you are priced out you can be stuck in the worst way. Please let us know more about this vaccination, and God bless on your courageous journey. People need to know that there is additional hope--outside the box!
Best regards,
Richard Day Gore

Posted at 5:43AM on May 7th 2007 by richard day gore

4. "CHEMO is the real death sentence."

Boy, that gives tremendous solace to those undergoing treatment.

As far as that vaccine:

Apart from the unsupported claims of those selling it, there is no evidence that it is successful in treating cancer.

Resan comes from Belorussia and is marketed in the United States. The treatment itself is given in Mexico. This is common in untested and unlicensed alternative therapies. The United States government will not allow them to be given to patients in the US, so companies use hospitals across the Mexican border, where regulation is much less strict.

Resan is described as a vaccine, although it is difficult to tell what it is from the information put out by those selling it. They don’t say exactly what it is. Or how much it costs. They do say it is ‘made out of natural substances of an animal tissue’ and that it ‘does not contain any cells or tissues of tumours’. It is also described as an ‘imitator of tumoral antigenes’. Unfortunately none of these statements tell us anything very much.

http://www.cancerhelp.org.uk/help/default.asp?page=4140

Posted at 10:12AM on May 7th 2007 by hchcec

5. Sorry didn't mean to be so discouraging. After watching the program last nite, Leroy was ultimately helped with Ablation Therapy which blew his tumors apart.

http://www.rsna.org/Media/briefings/2004/html/ablation.cfm Found Dr. Harms www.breastcenternwa.com

Google ablation therapy it's suggested for many cancer types

The internet is amazing for doing research. I've been at war with my Docs since this happened to me again

"The United States government will not allow them to be given to patients in the US, so companies use hospitals across the Mexican border, where regulation is much less strict."

Right because the Pharmas can't make any $.

A Doc at UCI (University of Irvine) researching vaccines, I emailed him. Told me to take chemo and they'd give me something to boost my immune system. I asked for that alone, he said they couldn't do it. I accused him of fascist medicine. Another Med center is doing vaccine treatment but they have to combine it with chemo.
The nurse that spoke with me, agreed with me it wasn't fair to have to combine it.

I've been drinking Essiac for about 6 mos. Ur hasn't cured me but I'm staying the same until I finally decided what to do.

https://essiac.readyhosting.com/index.htm

There's too much politics with the Pharmas and $.
I've been communicating with Resan by email. They gave a $1350.00 figure for the vaccine and came down to $1090.00

They've been been very thorough reviewing my Pet scan, requested blood work reports and recommended gamma Interferon in conjunction with the vaccine.

Dig deep into the Resan site and read, what they say makes alot of sense. They applied to FDA, read how the FDA makes everyone jump through hoops and it costs millions to get approval, how many palms need to be greased?

If you haven't seen the movie The Constant Gardner, get the DVD or catch it on one of the movie channels. It says it all.

I'm a Pharmacists daughter pre companies going public and needing to pay their shareholders. It's a different ball game. Cure is no longer in the lexicon, it's treat. Just watch your TV, billions spent on ads Viagra/Cialais you to death and now restless leg syndrome, they make up things. Billions spent on ads.

Bush reduced Cancer research by 40Million in addition the govt. keeps new inovatiors hands tied.

We must keep fighting and learn. This isn't a death sentence.

Keep an open mind folks

Love, lori

Posted at 3:49PM on May 7th 2007 by lori

6. I read this a long time ago too.

http://www.cancerhelp.org.uk/help/default.asp?page=4140

What they say is inaccurate per the site, I have no vested interested in Resan. I've been communicating with them for about 2 mos. They're responsive, seem knowledgeable and addressed all my concerns.

Resan - Think out of the Box

http://www.anticancer.net/vaccine.html

Posted at 4:01PM on May 7th 2007 by lori

7.
1. "The nurse that spoke with me, agreed with me it wasn't fair to have to combine it."
2."They applied to FDA, read how the FDA makes everyone jump through hoops."
3. I've been at war with my Docs since this happened to me again."
4. "Keep an open mind."

Lori needs the major disclaimer for her post:

"The contents of this blog are for informational purposes only and should not be construed as medical advice or substitute for professional care."

No doubt.

I'm beginning to think that many of the people who come to these cancer blogs bear some serious grudges.

Posted at 6:56PM on May 7th 2007 by hchcec

8. hchcec, the grudges expressed here have been earned the hard way.
Regards,
Richard Day Gore

Posted at 7:09PM on May 7th 2007 by richard day gore

9. Re: "The contents of this blog are for informational purposes only and should not be construed as medical advice or substitute for professional care."

I don't think Lori has done anything but share
info and her personal experiences and I thank her
for that. As far as grudges are concerned, I have
a long list myself.

jan

Posted at 11:46PM on May 7th 2007 by jan

10. Leroy, Elizabeth Edwards, and the woman on the program who is living with pancreatic cancer said what anyone living with cancer or living with a cancer patient already knows. It's the patient's absolute god-given right to refuse or to take any and all treatments; the patient has the most control of the situation, while the family has none.

The other great point made was that friends and family don't know what to say or do. Normalcy IS what you strive to find and maintain. Normalcy for a cancer family is NOT the same normal for a soccer family, however.

Tip: don't invite a bald headed cancer patient to a summertime day game unless you can provide a cool and shady shelter with soft seating (chemo makes you lose weight and you'll get bleacher butt if you don't have cushions). And lots of water, cause chemo can cause dehydration (and diarrhea and bad smells from "down there" and bad breath, too). And admire that beautiful bald headed person--women especially are too vain about their hair.

If you know a cancer family, please don't stay away from them. Offer to walk the dog, mow the yard, run to the grocery store, pick up kids from school or practice. Be kind; we all should have learned this before kindergarten, some of us have forgotten.

If you work with a cancer fighter, don't be judgmental. Imagine being told you have any form of cancer and then being told you will exhaust all of your sick and vacation days, and you may exhaust all of your FMLA and potentially lose your job. Then imagine how you're going to pay for the insurance (that pays for the care that could save your life) if you don't have employer-sponsored insurance (you can't get any other kind when you have a cancer diagnosis unless you're already on welfare). And how will you pay for the medicine, much less the doctor bills? Mortgage? Car payment? Utilities? Groceries?

PLEASE JUST BE KIND TO THESE FOLKS AND THEIR FAMILY. You don't have to be their best friend. Smiles are free.

Posted at 12:17PM on Sep 14th 2007 by KCNative

11. "I'm beginning to think that many of the people who come to these cancer blogs bear some serious grudges....Posted at 6:56PM on May 7th 2007 by hchcec"

You betcha....just look in the mirror.

Posted at 12:36PM on May 10th 2007 by Reader

12. The resident Quackwatcher has given us her fundamentalist opinion. I can understand that. A fundamentalist opinion. She has "allrightnicked" us with her arbiter of truth.

Posted at 6:00PM on May 10th 2007 by Gregory D. Pawelski

13. Are there studies that show resan benefit, Mr. Pawelski? If there are, could you post them please so cancer patients can make an informed decision before they give their credit card numbers to those in Tijuana? Perhaps this is too "fundamental" for you, but cancer patients would like to know.

Thank you in advance.

hchcec

Posted at 9:50PM on May 10th 2007 by hchcec

14. http://www.heartland.org/Article.cfm?artId=16433

Posted at 12:08AM on May 11th 2007 by Gregory D. Pawelski

15. Again, when asked, there is no evidence given for an item's benefit.

What's wrong with blogging that an item is necessary for your healing without providing any evidence?

Here's a very good recent example where the Chinese use an herb to benefit stroke outcome.

http://www.medicalnewstoday.com/medicalnews.php?newsid=69258

You'll notice toward the end of the article:

Ted Kaptchuck, O.M.D., associate professor of medicine at Harvard Medical School, said, "in Chinese society, at this time, basic science and LABORATORY EVIDENCE SEEMS TO BE ENOUGH to gain widespread acceptance and adoption for the use herbal and other medications. In the West, we think it is a long shot to go from basic laboratory evidence to demonstrated clinical efficacy in randomized trials. We are not at the point where it is clear that a traditional Chinese herb has a major role in health care."

This is why we should view what we read on the internet with a very critical eye. We should be on the lookout for self-serving factual claims. Scientific methods are merely ways of rejecting or supporting factual claims that emerge from theories. In fact, agreeing to establish, protect, and abide by a body of factual information has a moral quality similar to the norms of religion or a democratic government.

If bloggers tell you that establishing evidence just isn't important and you should buy what they're selling, ask yourself, "what is driving them?"

Posted at 9:29AM on May 11th 2007 by hchcec

16. There is some innate goodness of people who go into oncology. At the time when most oncologists practicing today made the decision to become oncologists, there was no "chemotherapy drug concession." Most of them probably had a personal life experience which created the calling to do battle against the great crab. At the time people make their most important decisions in life, people are at the most idealistic (and least informed) period of their lives.

In their environnment, it is mandatory from a purely human standpoint, to take refuge in the smallest of successes. The shrinkage of a tumor lasting four weeks. The temporary relief of pain. Just like a trauma victim will love forever the surgeon who fixed his/her compound fracture, the cancer patient feels genuine, heartfelt gratitude to the oncologist during periods when the cancer crab retreats.

But the oncologist knows it is just the eye in the hurricane. The eye passes all to quickly, and then the patient is beaten by the back half of the storm, which is more deadly than the front. So the oncologist only rarely gets to share in the celebration of remissions. He/she's already worried about the day to come, when the really bad news needs to be delivered to the patient and the remission is instantly forgotten.

But even bettersweet victories are better than no victories at all. So oncoloigsts will still give more chemotherapy than otherwise warranted, even without the financial incentives. I would imagine some are influenced by the whole state of affairs, possibly without even entirely admitting it. There are so many ways for humans to rationalize their behavior. The solution is to change the system. Take physicians out of the retail pharmaceutical business and let them be doctors again.

Posted at 2:39PM on May 11th 2007 by Gregory D. Pawelski

17. The internet blogger Pawelski delivers the bad news to frightened cancer patients again, albeit rather eloquently this time. Morbid yet literary. It's a new style but the substance remains:

1.The shrinkage of a tumor lasting four weeks.
2.The temporary relief of pain.
3But..it is just the eye in the hurricane.
4.The patient is beaten by the back half of the storm, which is more deadly than the front.
5.The really bad news needs to be delivered to the patient and the remission is instantly forgotten.

Well done, sir. I'm sure the cancer patients who read your post today will sleep well tonight.

You're a breath of fresh air. Who motivates you?

Posted at 4:45PM on May 11th 2007 by hchcec

18. U.S. Oncology took a hit in its latest SEC Form 10-K report. First-quarter net loss (oops!). It said a number of factors impacted their results, including reduced pre-tax income due to lower use of certain supportive care drugs used to treat cancer-induced anemia, and the discontinuation of the Medicare Demonstration Project.

The Chairman of the Senate Finance Committee found out a few years ago that the value of the approximately $300 million-a-year Medicare Demonstration Project to report on a patient's level of nausea, vomiting, pain and fatigue was for nothing. CMS paid chemotherapy providers $130 per report, per "infusional-chemotherapy" recipient for this information (they didn't do this for patients prescribed oral-dose therapy). However, HHS' inspector general's office found these providers were being paid an extra $130 to simply forward the data that was already collected.

A continuance of the Medicare Demonstration Project would have exacerbated existing economic and clinical problems instead of resolving them by increasing the temptations for physicians to overuse injectable drugs and promise to aggravate the economic problems Congress attempted to fix with the new Medicare law.

Another part of the report says that cancer patients are suddenly using a lot less anemia drugs, and as a result U.S. Oncology will bank $8-10 million a year less than expected (their hands were caught in the cookie jar).

In a panel discussion that highlighted the 12th annual conference of the National Comprehensive Cancer Network, Lee Newcomer, former chief medical officer and currently an executive with United Health Group, pointed out that in reviewing records of patients who were prescribed the drug erythropoietin, said that 44% of those patients had blood work-ups that would indicate they were not anemic.

According to Dr. John Glaspy, director of UCLA's Outpatient Oncology Clinic, one complicating factor, experts say, is that oncologists make significant revenue buying cancer drugs from manufacturers and charging patients a higher price for receiving the drugs in their offices. That profit motive could influence some doctors' decisions. However, patients with anemia, which can cause sluggishness in its early stages and can be fatal in advanced phases, can get blood transfusions, typically every few weeks, instead of using EPO.

Federal laws bar drug companies from paying doctors to prescribe medicines that are given in pill form and purchased by patients from pharmacies. However, companies can rebate part of the price that doctors pay for drugs (like the anemia medicines) which they dispense in their offices as part of treatment. The anemia drugs are injected or given intravenously in physicians' offices/centers. Doctors receive the rebates after they buy the drugs from the companies. But they also receive reimbursement from Medicare or private insurers for the drugs, often at a markup over the doctors' purchase price. Although the new Medicare bill tried to curtail the chemotherapy drug concession, private insurers still go along with it.

Oh! And one other seemingly unrelated bit of information in the SEC Form 10-K. In 2005, U.S. Oncology was subpoenaed by the U.S. Department of Justice about contracts and relationships with pharmaceutical companies. Coincidence?

This is what motivates me. It's not good cancer medicine. What needs to be done is to remove the profit incentive from the choice of drug treatments. Let's take medical oncologists (chemotherapists) out of the retail pharmacy business and let them be doctors again.

Posted at 1:47PM on May 12th 2007 by Gregory D. Pawelski

19. 1. "U.S. Oncology took a hit"

The reasons you listed are minor. The two big ones:

early extinguishment of $250.0 million floating rate notes of US Oncology Holdings, Inc. and a $7.4 million impairment and restructuring charge relating to two markets.


2.Subpeonas mean nothing. Nothing at all has been proven.

3."Chemotherapists" This is a new one from you. Instead of calling them oncologists, you merely call them chemotherpists, like they wear racehorse blinders. I could say the same thing about the "pseudoscientific bloggists" or "snake oil bloggers", the purveyors of unproven methods of treating cancer patients held hostage to the wicked western medicine moneychangers.

Yeah, that's the ticket.

While damning oncologists, why not just take the time to tell a few cancer survivors that it's only a matter of time until the "back half of the storm" hits them and "remission is instantly forgotten."

For the snake oil blogger, he knows that's the only way to make a cancer patient listen?

Posted at 2:45PM on May 12th 2007 by hchcec

20. Perhaps hchcec should take the paper bag off her head. I know I am turned off by the venom of an anonymous poster. There is no transparency from someone hiding behind a symbol. Perhaps it will enhance attracting contributors who are turned off by name calling at them also.

Posted at 1:17AM on May 14th 2007 by Gregory D. Pawelski