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Anyone Taking Pecta-Sol or Low-Dose Nexaltrone?

RoseyR
Posts: 464
Joined: Feb 2011

Just wondering what people are doing AFTER chemo and radiation to shore up their immune systems.

Is anyone taking Pecta-Sol C (citrus pectin) to try to minimize chances of metastasis? I was impressed by the literature although I believe most studies of its effectiveness have been performed on prostate and breast cancer patients--good results that may, or may not, have implications for uterine/ovarian cancers.

Secondly, is anyone taking low-dose nexaltrone? (Hope I'm spelling this one correctly.) My integrative doctor asked me to do some research on it after which we'd talk about it.

Preliminary forays via Google suggest it can be very effective for MS and other autoimmune diseases as well as many cancers, slowing or preventing recurrence: with minimal side effects.

Would like to know what you all think when you do your own Google searchers--or whether you know anyone who has tried it.

My doctor tends to be very conservative, by the way--prescribing only supplements backed up by lots of clinical study. So I am at least intrigued.

Am especially intrigued because despite fabulous health my entire life--high energy, few colds or flus, even--I did have two "episodes" that suggested possible MS to a few doctors although both episodes were transient (over in a month or two) and were never definitively diagnosed.

Thanks,
Rosey

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Rosey

I've been dealing with a persistent, metastatic ovarian cancer for over a year. I've been on low-dose naltrexone (LDN) for about 3 months. I don't know if it is doing much for the cancer situation. However, I am pretty sure that the LDN is keeping me from being a basket case over being deemed "incurable" by the oncologist. LDN has a reputation for helping autoimmune conditions so it sounds good for you.

At first, I think I had trouble sleeping when I took the pill at bedtime. My doctor said that it was still effective if I took it ANYTIME so I take it after dinner now. I can tell a difference if I forget to take it.

I started taking modified citrus pectin (MCP), too, just a couple of months ago so it's too early to know if there is any benefit or not. I got a copy of the Moss Report & there was a lot of compelling info about it listed in the report. I figure MCP falls in the category of "do no harm."

Best wishes.

JoAnnDK
Posts: 276
Joined: Jun 2011

Could find nothing about this spelled this way

I have heard of naltrexone for alcoholics: http://www.lowdosenaltrexone.org/ldn_and_ai.htm

http://www.lowdosenaltrexone.org/ldn_and_ai.htm

RoseyR
Posts: 464
Joined: Feb 2011

JoAnn,

Yes, from the little I know about LDN (low-dose naltrexone), it's shown some success in treating autoimmune disorders, HIV Aids, addictive disorders, AND cancers.

Am going to do more research on it because, as I noted, my integrative doctor is quite conservative, unwilling to prescribe any supplement not backed by "data," as he puts it, via good solid clinical studies.

Because my tumor is highly recurrent (though caught in stage iB), he thinks it might be a good move to take LDN especially as it has nearly no side effects.

Best,
Rosey

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm curious. LDN is a medication - what lead you to this as an immune booster? There are many things that are not medication that can boost the immune system - i.e. exercise, balanced diet.

I noticed that it said LDN "may" help boost immune system. There is surely no guarantee - and how does one know if their immune systems have been "boosted"?

I'm very cautious (and yes, skeptical) with medicines and supplements. Naltrexone affects BRAIN cells and is processed through the LIVER. For me, I would be worried more about the long term harmful affects than the possible perceived positive effects. I'll stick to my low tech methods of exercise, laughter, a good book, music, healthy diet, meditation, green tea, and maybe an additional vitamin C.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Mary Ann

My understanding of the way LDN works is by briefly suppressing the endorphin receptors. There is a rebound increase in endorphins that follows. It is the endorphin response that is supposed to be responsible for the boost in the immune system. I find that LDN helps my mood--lately, I've been dealing with various stressful issues not related to my health. I feel safer taking LDN rather than an SSRI (Zoloft, Prozac, Lexapro, Paxil) or benzodiazapine drug (Valium, Ativan, Klonipin).

My personal opinion is that LDN confers a benefit that could also be derived from regular vigorous exercise. So those who are able to exercise regularly are probably already maximizing the benefits of increased endorphins. I don't think LDN is an adequate replacement for exercise--there are a lot more health benefits from exercise! I don't exercise enough to get that "runner's high." If I did, I'd quit the LDN.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Vigorous exercise stresses immune system rather than boosting it - moderate is the way to go.

Taking medication to affect mood is getting into dangerous territory. I would encourage you to rethink this.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I wouldn't call the source of this article 'impeccable' since it is published by a law firm specializing in medical law suits, but I did feel this warning was worth sharing:

Liver Damage Caused by Supplements
Dietary supplements sometimes injure the liver and disrupt its normal function. The resulting liver damage is called drug-induced (or supplement-induced) liver disease. The symptoms are similar to the symptoms of liver diseases caused by viruses and other factors.

For example, hepatitis caused by using a dietary supplement is similar to viral hepatitis such as Hepatitis A and Hepatitis C. Both types of hepatitis can cause loss of appetite, fatigue and nausea.

What are the Symptoms of Liver Disease?
Patients with mild liver disease may have few or no symptoms or signs. Up to 50 percent of individuals with underlying liver disease have no symptoms at all.

Patients with more serious disease develop symptoms, but some symptoms are not specific to a liver problem. For example, the following symptoms can result from drug-induced liver damage, but are common to other ailments as well:

Fatigue.
Weakness.
Nausea.
Loss of appetite.
Certain symptoms are not often due to causes other than liver damage. These include:

Yellowing of the skin (jaundice).
Itching.
Easy bruising.

Severe, advanced liver disease with cirrhosis (scarring) can produce symptoms related to cirrhosis. These symptoms include:

Fluid accumulation in the legs (edema).
Abdomen (ascites).
Mental confusion or coma.
Kidney failure.
Vulnerability to bacterial infections.
Gastrointestinal bleeding.

How Do Dietary Supplements Cause Liver Disease?
Dietary supplements can cause liver disease in different ways.

Some are toxic to the liver and cause direct injury to the organ.
Others are transformed by the liver into toxic chemicals that can injure liver directly or indirectly.

What are the Types of Liver Toxicity?
There are three types of liver toxicity:
1.) Idiosyncratic toxicity produces the most common form of drug-induced liver disease. It occurs in people who have inherited specific genes that control the chemical transformation of a substance found in a supplement. With some supplements the prevalence of this type of toxicity is much higher than with others.
2.) Dose-dependent toxicity causes liver disease in most people who take too much of a dietary supplement over a period of time.
3.) Allergy to a supplement also may cause liver disease, though it is uncommon.

The “Dirty Dozen” Supplements
Aconite (Monkshood or Wolfsbane)
Bitter Orange
Chaparral (Stinkweed)
Colloidal Silver
Coltsfoot
Comfrey
Country Mallow
Germanium
Greater Celandine
Kava
Lobelia
Yohimbe

http://www.supplement-side-effects.com/Liver-Damage-Caused-by-Supplements/31835/

RoseyR
Posts: 464
Joined: Feb 2011

Daisy,

All my former posts should have made it clear that I am highly partial to "natural" approaches to treating cancer. In the past twenty years of my life, I hadn't taken a single medication beyond an ibuprofen now and then. No antibiotics, even.

Claudia and I are forever touting the benefits of the right foods and green tea; I am doing yoga as well. The very fact that I am seeing an "integrative doctor," partial to a nutritional approach to the disease as well as "mindful meditation," should suggest such.

That it was HE who suggested we talk about LDN piqued my curiosity, that's all. I would think we'd all be curious about any potential substance--call it "natural" or not--that has shown some clinical efficacy in preventing recurrence, particularly of rare cancers. I haven't had time to do any real research into the substance yet, but I'm sure he'll give me the clinical articles when I see him.

Rosey

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

I agree with your trying all you think might be of benefit to you and am often left shaking my head when words like dangerous and toxic are used as a caveat to not try any nature based substance, when the other option is so toxic one misuse can kill you. And chemo and radiation can destroy livers pretty quickly. Let us question the viability of all the treatments, not just the traditional ones that earn the most profits. I rather think the most toxic of all are chemo and radiation, not supplements and natural substances. Just because they have figured out how to not have chemo/rad, for the most part, kill you outright, doesn't negate in any fashion their deadliness. The fact that if you manage to survive the treatment, you can go into remission and in some instances not have your cancer return, is the main reason people are willing to take such a huge risk with their health.

Why not, instead of touting the dangerousness of supplements and more natural approaches, why don’t we look at everything working in the most synergistic manner, with the use of everything that will work best to be effective to achieve the greatest benefit for all, with the least possible risks?

I’m just saying. Any completely honest talk about toxicity and danger absolutely has to include risks associated with chemo and radiation. I have been on this board for more than three and half years, and have listened to all alternative options get called dangerous and have up to now never challenged that position by pointing out the likewise risks involved in chemo and radiation, but today, I could no longer feel comfortable not also mentioning that we need to talk about the problems with chemo and radiation too. Change requires assessing all aspects honestly.

I Will Survive
Posts: 27
Joined: Aug 2011

Claudia, thought you said you were leaving.

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

After listening to all the replay of MLK and how if you feel a thing is right, it is your obligation to stand up for it, I simply felt I couldn't leave. And, I have a renewed purpose.

Oh, joy.

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

some risks associated with Taxol.
This is from 1996 but since Taxol is more that forty years old, felt it relevant still. Also please take note of the author of this report as it not me. Any corrections or criticisms can be directed to the university:

"...Taxol has a variety of harmful side effects particularly producing alterations in liver function. During taxol clearance, the liver may accumulate a 25-fold higher concentration than that found in the plasma, which may induce alterations in liver function. When isolated rat hepatocytes were exposed to taxol, aerobic metabolism was reduced, leading to an insufficient increase of the ATP via anaerobic glycolysis. The respiratory chain is also directly affected by this drug (Manzano et al., l996) Several other toxic side effects have been attributed to taxol, including hypersensitivity reactions, cardiotoxicity, neutropenia, peripheral neuropathy, mucositis, gastrointestinal toxicities, alopecia, arthralgias, and myalgias (Gotaskie and Andreassi, 1994). Myelosuppression, especially neutropenia, appears to be the dose-limiting toxicity in solid tumors at 200-250 mg/m2. Sensory neurotoxicity with typical numbness, tingling and painful paraesthesial in the extremities, diarrhea, and alopecia appear frequently. Mucositis appears to be the non-haemotological dose-limiting side effect at 390 mg/m2 that has been determined in patients with leukemia. Mypersensitivity reactions which have been fatal might be schedule dependent. Anti-allergic prophylaxis must be given, although this precaution may not be considered to fully protective (Guchelaar et al., 1994). Taxol also can suppress the immune systems of patients, deaden sensory nerves or cause nausea and hair loss (Nicoloau et al., 1996)...."

http://klemow.wilkes.edu/Taxus.html

This paper was developed as part of the BIO 368 - Medical Botany course offered at Wilkes University during the summer of 1997. Course instructor was Kenneth M. Klemow, Ph.D. (kklemow@wilkes.edu). The information contained herein is based on published sources, and is made available for academic purposes only. No warrantees, expressed or implied, are made about the medical usefulness or dangers associated with the plant species in question.
Return to Plant Summaries page

This page posted and maintained by Kenneth M. Klemow, Ph.D., Biology Department, Wilkes University, Wilkes-Barre, PA 18766. (570) 408-4758, kklemow@wilkes.edu.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

I have to grin when I think how people are so afraid to use some over-the-counter natural therapies while they are lining up to use extremely toxic natural therapies as long as they are on prescription. Let's not forget that radiation is a NATURAL therapy. Just about all of the chemotherapies have their origins in natural substances, too. Taxol was derived from the bark of the Pacific Yew evergreen shrub--carboplatin is from the rare metal platinum.

Natural toxins (poisonous mushrooms, snake venom, etc.) are much more likely to kill you outright whereas man-made toxic substances such as xenobiotics, polychloral biphenols, bisphenol-A, etc. are more likely to contribute to chronic illness.

In my opinion, the biggest problem with over-the-counter herbs & supplements is that you have to be REALLY careful what company you buy your stuff from. There were assays done of the product goldenseal (used as an herbal antibiotic therapy)--some of the products didn't contain the part of the plant that had the active ingredient and one product was yellow-colored sawdust. Don't ask me to find documentation of this fact--I heard this info in a lecture by Kerry Bone founder of MediHerb (an Australian herbal supplement company).

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I grow Lily of the Valley and Datura because both are beautiful, but if you eat either of them you can die or at least experience a psychotic break. Common sense proves that it's a matter of being AWARE and CAREFUL. But it's so hard to personally find the true information you need with so many self-serving supplement companies publishing their own articles on the web promoting their products with questionable 'research'. Yes, chemo and radiation are horribly toxic, but at least a team of medical professionals are there to monitor your reaction to it if you get in trouble, and intervene. I think anyone that is not working closely with a registered dietician or nutritionist or a reputable naturepath (sp?), and is self-prescribing and taking a variety of supplements and herbs, is playing with fire. Just as I wouldn't take someone else's prescription medicine, I won't take supplements or herbs without expert advice. I'm a good researcher, but I won't flatter myself that I know more than those who have been trained in drug interactions and nutritional deficiencies and have extensive experience.

JoAnnDK
Posts: 276
Joined: Jun 2011

I am pretty sure that everyone who reads this board has been made aware of all of the horrors of taxol, many many many times over. Continually repeating this information is not a good use of space.

RoseyR
Posts: 464
Joined: Feb 2011

I think we get into trouble when we classify certain antidotes as "natural" and others as "chemical," as there's a large overlap between the two. Surely not all that's "natural, such as a cobra bite, is benign; nor is all we'd call "chemical" necessarily horrific.

Is it really productive for us to get caught up in linguistic hair-splitting when we we're trying to establish what treatments and dietary approaches--if any--are beneficial for our rare gynecological cancers?

Shouldn't even those who doubt, question, or excoriate chemo be interested in hearing that certain modes of delivering it might be more effective than others? Shouldn't those who are suspicious of ANY pharmaceutical, such as LDN, wonder whether it can, if not "cure" cancer, prolong remission and enhance quality of life? Shouldn't those who adamantly oppose "supplements" be curious about recent findings that establish the efficacy of one versus another in treating gynecological cancers? (Selenium, for example has been found to enhance the potency of taxol and carboplatin in treating some ovarian cancers; isn't selenium a "supplement"? LDN, a dreaded "pharmaceutical," albeit inexpensive, has recently been found, in another major study, to make cisplatin far more effective. And even if Claudia has already warned us of some dangers of taxol, I, for one, WANT to hear about any additional dangers, newly confirmed, before I have that treatment again.

When we close our minds to possible cures or palliatives for our conditions--because they fall into a category we've completely dismissed--are we helping ourselves or just cauterizing our collective search for solutions?

This is a wonderful site, but only if we remain curious, not glibly dismissive.

Warmly,
Rosey

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I appreciate your feedback. I think that we all have high stakes in this thing called cancer and we are passionate about what we think works and helps ourselves. And that we naturally want to share that with others.

I see the world through my experience as we all do. I believe in and practice alternative medicine. I used to take lots of supplements. I know personally and professionally the dangers that drugs can do, so on some issues I am prejudiced. We are all prejudiced about some things.

We all have a right -and sometimes responsiblity - to speak up and make ourselves heard. I think feelings get hurt and misunderstandings happen when people take things personally or think that they need to CONVINCE or CONVERT others to their way of thinking. We all have right to self-determination. I'm 100% sure we are NOT going to agree on everything.

The best use of this forum is when we can have a dialogue. And some people might be dismissive and close minded - and that's OK (different strokes for different folks). Let's not trash this board - or each other - if some people don't like what we say.

Please everyone, let's speak for ourselves. If we don't agree, let's dialogue and try to understand another's point of view. Let's not be mean about it or badger or make snarky remarks to our fellow sisters. We are in this fight together. Sometimes we may just have to agree to disagree.

Wishing all joy, peace, passion, love, and serenity, Mary Ann

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