Hello sebjac,
I?m sorry to hear of your friend?s illness, and what he must be going through.
Let me start by saying I don?t have any connection whatsoever to
Mannatech or any suppliers of glyconutrients or any other supplement,
vitamin or pharmaceutical company.
=======================
?Myeloma is a type of cancer that develops from cells in the bone
marrow called plasma cells. Bone marrow is the spongy tissue found
inside the inner part of our large bones. It is from the bone marrow
that our different blood cells are produced.
Myeloma can develop wherever there are plasma cells. So it can be
anywhere in the bone marrow, including the pelvis, spine and ribcage.
As it can be in several places, it is often called multiple myeloma.
Plasma cells are part of the immune system. They make proteins called
antibodies. These are large protein molecules also called
immunoglobulins. The antibodies are made when the body responds to
infections. Different antibodies are made to respond to different
infections. Antibodies attack and help to kill bacteria and viruses.
There are 5 main types of antibody or immunoglobulin ? A, G, E, M and
D. In each patient, the myeloma cells produce an abnormal form of one
of these types of antibody. You may hear your doctor call the
antibody protein, paraprotein or a monoclonal spike.?
http://www.cancerhelp.org.uk/help/default.asp?page=4751
It sounds like your friend?s doctor is treating your friend per
standar procedure, as is recommended by hematologists. Here is a bit
of information on Thalidomide and Velcade and MM.
Thalidomide and Multiple Myeloma
================================
It seems Thaldomide is looking good for Multiple myeloma patients,
especially those who don?t have Chromosome 13 defects.
?The drug thalidomide continues to show promise as a treatment for the
resilient blood cancer called multiple myeloma, researchers said
Tuesday at the 2000 American Society of Clinical Oncology annual
meeting. Their results confirm a smaller study published last fall and
lead the way to a large, definitive trial of the drug.
In the study conducted at the Arkansas Cancer Research Center, Little
Rock, researchers gave thalidomide to 169 patients whose cancer had
not responded to chemotherapy or bone marrow transplants. After 18
months, 55 percent of patients were still alive, a result that lead
researcher Bart Barlogie, M.D., called "stunning." Patients in a
low-risk category, who did not have a specific defect in chromosome
13, showed an even higher 18-month survival rate of 77 percent.?
?Side effects included constipation, weakness, sleepiness, and
numbness, but 90 percent of patients tolerated the 400 milligram per
day dosage.
The study did not directly compare thalidomide to standard treatments,
the gold standard for any new cancer therapy. Standard treatments
yield a five-year survival rate of 29 percent, a figure that Barlogie
is hopeful thalidomide can exceed.
"Of all the cancers examined to date with thalidomide, multiple
myeloma shows the greatest reported action," said Barlogie. "The
question now is: Is it better to use the drug alone or in combination
therapy?" Barlogie's research team is studying that question in a
clinical trial that has already enrolled 125 patients.?
http://www.nci.nih.gov/clinicaltrials/results/thalidomide-comeback0500
?A treatment called Thal-Dex that combines the once-banned drug
thalidomide with the steroid dexamethasone works better than
conventional chemotherapy in the treatment of multiple myeloma ,
according to a new Italian study.
Multiple myeloma in an incurable and painful cancer of the bone
marrow. Many patients live less than five years after being diagnosed
with the disease. Autologous (self-donor) stem cell transplants can
help extend patient survival. Chemotherapy is done a few months before
stem cell transplant to reduce the number of cancer cells and improve
the odds of stem cell transplant success.
The new study included 100 multiple myeloma patients who received
Thal-Dex before stem cell transplant and 100 patients who received
traditional "VAD" chemotherapy before transplant. VAD is a combination
of three drugs -- vincristine, adriamycin and dexamethasone.
As reported in the July 1 issue of the journal Blood, patients who
received Thal-Dex were more likely to have successful transplant
results -- 76 percent of the Thal-Dex patients showed at least a
partial remission compared with 52 percent of VAD patients. The
Thal-Dex patients also showed more reduction in the size of their
tumors.?
http://www.medicinenet.com/script/main/art.asp?articlekey=47800
?Given its broad spectrum of activities, Thal(Talidomide) may be
acting against MM(multiple myeloma) in several ways.8 First, Thal may
have a direct effect on the MM cell and/or BM stromal cell to inhibit
their growth and survival. For example, free radical-mediated
oxidative DNA damage may play a role in the teratogenicity of Thal9
and may also have anti-tumor effects. Second, adhesion of MM cells to
BM stromal cells both triggers secretion of cytokines that augment MM
cell growth and survival10-12 and confers drug resistance13; Thal
modulates adhesive interactions14 and, thereby, may alter tumor cell
growth, survival, and drug resistance. Third, cytokines secreted into
the BM microenvironment by MM and/or BM stromal cells, such as
interleukin (IL)-6, IL-1 , IL-10, and tumor necrosis factor (TNF)- ,
may augment MM cell growth and survival,12 and Thal may alter their
secretion and bioactivity.?
http://www.bloodjournal.org/cgi/content/full/96/9/2943
Clotting problems such as DVT can be a problem in patients receiving
chemotherapy and thalidomide.
?The occurrence of deep-vein thrombosis (DVT) in patients with newly
diagnosed multiple myeloma, who were randomly assigned to receive
identical induction chemotherapy with or without thalidomide, are
reported in this study. The 2 study arms were comparable with respect
to key myeloma prognostic factors and known risk factors for DVT.?
http://www.bloodjournal.org/cgi/content/abstract/98/5/1614
?We conclude that thalidomide is an active agent in the treatment of
patients with advanced myeloma. A prospective trial to confirm these
findings is ongoing at the Mayo Clinic in Rochester, Minn, and
includes correlative studies to assess the effect of thalidomide on
bone marrow angiogenesis, as well as the expression of VEGF, bFGF, and
their receptors. We are also studying patients with newly diagnosed,
untreated asymptomatic myeloma with single-agent thalidomide.
Moreover, studies of chronic lymphocytic leukemia, myelodysplastic
syndrome, and myelofibrosis are being developed.?
http://doe.unimo.it/Jo/GIUSEPPE/LG%20Mieloma/TalidomideBibliografia/Rajkumar%202000%20MCP%20(615)-talidomide%20relapsed.pdf
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11740812&dopt=Citation
================
Remicade/Velcade
================
I?m wondering if you mean Velcade(bortezomib) instead of Remicade
(infliximab). Remicade is used for ankylosing spondylitis, Crohn's
disease and rheumatoid arthritis. Velcade, on the other hand is used
for cancer patients, including multiple myeloma.
http://www.remicade.com/global/index.jsp
?VELCADEŽ is the first oncology drug marketed and promoted by
Millennium. The rapid clinical development of VELCADE ? with FDA
approval granted little more than four and a half years after
initiation of the first clinical trial ? reflects our intense
commitment to novel treatments for cancer patients. To discover and
develop such treatments, we focus on understanding key molecular
pathways that play crucial roles in underlying disease processes, and
on identifying therapeutically significant differences that may exist
between people. We apply this approach broadly throughout our R&D
program, to develop novel treatments not just for cancer but also for
a number of other important diseases.?
http://www.mlnm.com/products/velcade/index.asp
More information on Velcade
http://www.mlnm.com/clinicians/oncology/velcade/index.asp
?VELCADEŽ (bortezomib) for Injection was approved by the U.S. FDA in
2003 and the European Commission in 2004 for the treatment of patients
with multiple myeloma who have received at least two prior therapies
and have demonstrated disease progression on the last therapy.
Multiple myeloma is the second most common blood cancer, representing
approximately one percent of all cancers and two percent of all cancer
deaths. VELCADEŽ works by blocking the proteasome, an enzyme complex
found in cells, and interfering with the chemical messengers that
control cell growth and regulate cell survival. Inhibition of the
proteasome represents a completely new approach to the treatment of
multiple myeloma.
Clinical results from the Phase III APEX study presented at the
American Society of Hematology annual meeting in December have shown
that, compared to patients receiving standard chemotherapy, patients
treated with VELCADEŽ experience a significant survival benefit,
underscoring that VELCADEŽ may help slow progression of disease.
VELCADEŽ has been approved in more than 35 countries around the world,
including the U.S. A single license was granted to market VELCADEŽ in
the 15 member states of the E.U., plus Norway and Iceland, and it is
available in the 10 accession countries. VELCADEŽ has also received
approval in countries in Latin America and Asia Pacific.?
http://www.jnj.com/2004AnnualReport/features/pharmaceuticals/
Millennium Pharmaceuticals, Inc. Release: New England Journal Of
Medicine Publishes Studies Of VELCADE(R) (bortezomib) For Injection In
Multiple Myeloma And MLN02 In Ulcerative Colitis (BioSpace)
? CAMBRIDGE, Mass., June 16 /PRNewswire-FirstCall/ -- Millennium
Pharmaceuticals, Inc. today announced the publication of results from
two clinical trials in this week's New England Journal of Medicine.
The first publication reports results from the phase III APEX study
which showed VELCADE was superior in survival, time to disease
progression, and response rates compared to standard of care,
high-dose dexamethasone, in patients with relapsed multiple myeloma
(MM). Results from a second study, published in the same issue, detail
findings from a randomized phase II trial of the investigational drug
MLN02 in patients with ulcerative colitis that demonstrated
statistically significant improvements in remission rates in patients
compared to placebo, the trial's primary endpoint.?
http://www.biospace.com/news_story.cfm?StoryID=20368820&full=1
=========
Mannatech
=========
Your mother may not appreciate the information I found on Mannatech.
As soon as I began to research this company, I began to have serious
doubts. There is no shortage of bad press on Mannatech. While I don?t
see any ingredients in their supplements that would harm you, I
seriously doubt if they do you any good either. I also understand that
people with serious diseases want to have hope, and are willing to try
anything. In this case though, Mannatech seems to prey on the hope of
seriously ill and those desperate for a cure.
Doing a search for the meaning of glyconutrients turns up nothing when
using Google Scholar, except for 21 returns that are associated with
holistic sites. It is not found on any scientifically reliable
websites. It is an invented word. I am not a molcular biologist, but I
must say most of the "research" presented on glyconutrients looks
mighty suspicious to me.
?Mannatech enjoys a peculiar advantage in Australia. In Canada and the
USA, its products can only be presented as dietary supplements to
promote health. In Australia, however, the supplements have been
approved as "over the counter drugs" by the government's Therapeutic
Goods Administration (TGA). This enables distributors to make numerous
claims about their medicinal effects - including the reduction of
blood lactate levels [4], which may strike an especial chord with
Australian CFS/FM doctors and sufferers who have been following the
work of Scroop and Burnett in Adelaide.?
?These revelations were clearly deeply damaging. The so-called
"National Institutes of Health study of 196 natural products", which
had been the jewel in Mannatech?s crown, was now shown to be neither
independent, nor Government funded - if indeed it had ever been done
at all. Mannatech?s prestigious spokesman was not only no longer
Clinical Professor of Medicine of UCI, but had apparently left under a
cloud. The company went into damage control.
A press release was issued in which Mannatech President, Samuel
Caster, said: "We have disassociated ourselves completely and
unequivocally from Dr. See." He claimed that Mannatech had "made every
effort to verify Dr. See's claims," but the researcher "misled the
company", and they were considering legal action [6]. (A lawsuit
alleging "fraudulent representations" was later filed.) Meanwhile a
notice was posted on the Mannatech website warning distributors not to
mention See?s research in their sales pitch:
Statement Concerning Studies of Dr. Darryl See Recent questions have
raised serious concerns about peripheral issues surrounding certain
research studies performed by Dr. Darryl See. Until these questions
are resolved, we are asking all Mannatech Associates to refrain from
using the studies of Dr. See in conduct of their business.?
http://www.masmith.inspired.net.au/docs/mannatec.htm
?It is generally acknowledged that breaking off a leaf from a living
aloe vera plant and applying the juice to a burn is an excellent first
aid measure. Aloe vera juice is also used in burn wards to soothe,
protect and moisten wounds. The problem with marketing the juice is
that it doesn't keep well. Processing inactivates the ingredient that
produces the desired effects. So, many aloe vera products contain
processed juice that has lost the plant's helpful properties.
According to Mannatech's literature, aloe vera expert Ivan Danhof,
PhD, MD, warned aloe promoters about making claims, and on the
instability of beta-1,4-mannan molecules. Mannatech says that the
"future of aloe vera belongs to those who have the ability to
stabilize and standardize (emphasis added) this labile
polysaccharide," and that Manapol is the "only commercially processed
aloe vera product capable of achieving and make the claim for
standardizing betamannans."?
http://www.ncahf.org/articles/j-n/mannatech.html
?The pill Ambrotose, which costs about $NZ300 a month and is sold
through a pyramid-type scheme, has been rubbished by the New Zealand
Aids Foundation and other health groups.
It is alleged that sellers of Ambrotose in New Zealand are using US
claims the product can alleviate symptoms of HIV, cystic fibrosis,
cancer, arthritis, down's syndrome and a host of other illnesses and
diseases.
The Health Ministry said tonight it had warned the New Zealand
distributors of Ambrotose they could be in breach of the Medicines Act
if the claims were used in this country.?
http://www.religionnewsblog.com/archives/00002640.html
Ingredients of one of Mannatech?s supplements:
Arabinogalactan (Larix deciduae) (gum) is from the European larch
tree, a species of pine tree. Gum ghatti is from the deciduous tree
Anogeissus Latifolia, found in India. It is used as an emulsifier and
stabilizer. Gum tragacanth is a sap made from locoweed and used in
making chewing gum. Mannapol is Mannatech?s proprietary name for aloe
vera extract. Silicone dioxide and magnesium stearate are drying
agents and preservatives. The only ingredient that may have any
valuable properties is the aloe! Aloe which reportedly loses it?s
potency when desiccated to make the capsules.
http://www.cnr.vt.edu/dendro/dendrology/syllabus/factsheet.cfm?ID=124
http://www.krystal-colloids.com/ghatti.html
http://waynesword.palomar.edu/ecoph34.htm
?Mannatech distributors, however, always give themselves away by
talking about glycochemicals, which are magic sugars that only
Mannatech can provide. Apparently, these sugars are vital for life and
we are all short of them, although real scientists seem to think that
the body is quite capable of making any of these chemicals that it
needs and that the glyconutrients get broken down in the stomach
anyway and are not directly used by the body. Alt-med promoters are
fond of adding a veneer of respectability to their claims by making
statements that they hope nobody will check, and an example came from
a Mannacreep who did just that when he posted the following bilge to
an alternative medicine forum:
In 1994, Dr Gunter Blobel MD PhD, received the Nobel Peace Prize for
his discovery in glycoproteins have with the body's ability to fix
itself.
Leaving aside for the moment the odd language construction of the
statement, it raised certain questions. The first is the obvious one
of why the Peace Prize would have been awarded for something like
this. As the 1994 Peace Prize was awarded to those great champions of
a peaceful end to the Middle East unrest, Yasser Arafat, Shimon Peres
and Yitzhak Rabin, it was obvious that there was at least one
"mistake" in the statement.
Perhaps Dr Blobel received the 1994 prize for Physiology and Medicine,
but, no, that was won by Alfred G. Gilman and Martin Rodbell "for
their discovery of G-proteins and the role of these proteins in signal
transduction in cells". Could these "G-proteins" be glycoproteins
which can help the body fix itself? Well, no, the "G" stands for
guanosine triphosphate, which helps messages from hormones pass
through cell membranes. So what did Dr Blobel do? He won the 1999
Medicine Prize "for the discovery that proteins have intrinsic signals
that govern their transport and localization in the cell", which again
has nothing to do with either glycoanythings or the body fixing
itself. Bad Mannaperson! Try harder next time.?
http://www.ratbags.com/rsoles/comment/mannatech.htm
?So are you saying anything that has to do with nutritional supplements is a scam?
No. I am saying that multi-level marketing is a scam. The fact that
Mannatech products are useless and have no nutritional value is icing
on the cake.?
http://www.ratbags.com/rsoles/comment/mannatech.htm
?Recently I've noticed a resurgence of Mannatech going around saying
they have the new therapy in the form of vitamins or some nutritional
supplement.
I'm here to tell you, don't fall for it!!! I've seen some PALS waste
hundreds and hundreds of dollars on Mannatech, for nothing.
This is a pyramid scheme that will make all sorts of claims. If they
come to you, simply ask them "Which medical standard published
Mannatech's findings?" Answer? None!
These dirtbags prey on people at their most vulnerable moments.
Whew! That felt good!?
http://www.als.ca/_forum/alstopic.php?t=375&highlight=
Bogus schools & their grads
ˇ Clayton School of Natural Health
ˇ Hulda Clark
ˇ Hulda Clark exposed
ˇ*******Stephen Nugent - Mannatech ***************
ˇ Eileen Renders
ˇ Canyon College
ˇ Kurt Donbach
ˇ Kurt Donsbach exposed
ˇ Columbia Pacific University
ˇ Monte Kline
ˇ Barry Broughton
ˇ Bernadean
Bernadean exposed
ˇ University of Natural Medicine
ˇ Tuition and funding
ˇ It's NOT a University
http://www.healthwatcher.net/Quackerywatch/Quackery-U/tp000504letter.html
Marketing Scheme
http://www.programcritique.com/subcategories/NetworkMarketingMLM/Mannatech.html?Name=%20Mannatech#cust_review
Mannatech Sued
==============
Mannatech, several of its officers, and a chiropractor who was a major
distributor are being sued by the mother of a child who died of
Tay-Sachs disease whose photograph has been used to promote Mannatech
products. According to the complaint:
ˇ Mannatech distributors circulated a nude picture of the child and
claimed that he had benefited from their products.
ˇ The child actually died in 1997, shortly after using the products.
ˇ The marketing campaign persisted until 2004 despite requests by
child's mother to stop it.
The suit alleges intentional and negligent infliction of emotional
distress, intentional and negligent misrepresentation, invasion of
privacy, and unfair competition. In February 2005, Sam Castor and Dr.
Kathryn Dykman were voluntarily dismissed as defendants, but the suit
continues against the others. [Note: To respect the plaintiff's
privacy, her name and her son's name have been replaced by their
initials (CS, YJS) in the document below.]
http://www.mlmwatch.org/04C/Mannatech/complaint.html
?Vera Wilson brought me some Mannatech products, ambrotose to boost
the immune system. All of our cells have little feelers on them, and
if the immune system is down the feelers are flat. They don?t
communicate with each other and a disease cell can pass by. If they
are up and healthy, the recognize the cell as foreign and kill it.
She also brought me phytaloe which is vitamins from the vine ripened
fruit and vegetables. So I had lots of outside help. Dr. Graham was
not impressed. He said that he had never seen anything help yet.?
http://www.bellayre.com/ONTestml.html
When I looked up glyconutrients and multiple myeloma, I came across this site:
http://research-data.com/Latest-Findings/MGN-3-Natural-Pharmacy.htm
I looked up Dr. Mamdooh Ghoneum, who ?received? the International
Scientist of the Year award.
When you look up ?International Scientist of the Year? on Google, this
is all you get!
http://www.lifespirit.org/shriseaward.html
This led me to research Charles Drew University of Science and
Medicine, which is NOT a medical school for physicians-to-be. It does
offer careers in allied health, podiatry and chiropractic.?These
institutions award most of their degrees in such fields as
chiropractic, nursing, pharmacy, or podiatry.?
http://www.50states.com/college/detail/ca/111966.htm
Now, Dr. Mamdooh Ghoneum could be a very nice man, and I do not intend
to denigrate his reputation. Nor do I intend to besmirch the name of
Charles Drew University. I am trying to show how unscrupulous
businesses like to quote medical schools and scientists. On closer
examination, you find that none of this legitimization holds water.
The research above is intended to show that none of the glyconutrient
research is funded or documented by legitimate medical institutions. I
would not risk my life on supplements that are not truly
scientifically researched. Please note I am not against all
supplements. I believe certain herbs and supplements have their place.
But poorly researched supplements, that are not backed by scientific
research, along with a multi-level marketing scheme adds up to a scam.
(A non-scientific clue to detecting a scam site is the presence of
large ?Click Here? buttons, poor design, advertisements for website
hosting, flashing thingies and sites that sell vitamins, supplements
and snake oil. It is certainly true that legitimate sites may be
poorly designed at times, but they do not sell or promote supplements,
and are affiliated with academic and scientific instutions).
As far as Mannatech products actually helping someone, I could find no
scientific proof. But, let?s not forget the power of positive
thinking. I believe that a patient taking Mannatech products thinks
they work, and thus perhaps they feel better. It?s called the placebo
effect. If you want to try the placebo effect, you can save money by
substituting empty or sugar filled capsules and TELLING the patient it
is a wonder drug.
?The placebo effect is the measurable, observable, or felt improvement
in health not attributable to treatment. This effect is believed by
many people to be due to the placebo itself in some mysterious way. A
placebo (Latin for ?I shall please?) is a medication or treatment
believed by the administrator of the treatment to be inert or
innocuous. Placebos may be sugar pills or starch pills. Even ?fake?
surgery and ?fake? psychotherapy are considered placebos.
Researchers and medical doctors sometimes give placebos to patients.
Anecdotal evidence for the placebo effect is garnered in this way.
Those who believe there is scientific evidence for the placebo effect
point to clinical studies, many of which use a control group treated
with a placebo. Why an inert substance, or a fake surgery or therapy,
would be effective is not known.
The psychological theory: it's all in your mind
Some believe the placebo effect is psychological, due to a belief in
the treatment or to a subjective feeling of improvement.?
http://skepdic.com/placebo.html
Questionable sites:
http://www.1cure4cancer.com/products/mgn3.html
http://research-data.com/Latest-Findings/ARABINOXYLANE.htm
http://www.cancer-success.com/mgn_3_b.htm
Reliable sites:
http://www.multiplemyeloma.org/
http://www.cancer.org/docroot/cri/content/cri_2_4_1x_what_is_multiple_myeloma_30.asp
http://www.nlm.nih.gov/medlineplus/multiplemyeloma.html
As you have noticed by now, none of the reliable sites I have provided
suggest using Mannatech/aloe vera/cow colostrums for treating MM.
This site outlines different forms of therapies, including stem cell
infusion, interferon and thalidomide.
http://www.racp.edu.au/anzjm/ju00cp.htm
This site illustrates the pathophysiology of multiple myeloma, and
different therapies, excluding Mannatech products.
http://ist-socrates.berkeley.edu/~jmp/Myeloma.htm
One MM patient?s story:
?He felt that the safest thing to do at this point of time was for me
to go on the Thalidomide and Dexamethasone low dosage therapy and to
stay plumb away from anything with Aspartame in it and we would see
what happens. It really makes you wonder if these counts were
responding so well to the treatments or if it was just that my system
was getting rid of this poison. I have not had any of it in my system
for 4 days now and already the bloating and gas are gone from my
stomach, I did not have to take Excedrin for migraines but once today,
and my back, hips and other joints which were a constant pain were
barely noticeable today. I had more energy today than I have had in a
long time.
I go to my oncologist here at home next Tuesday to get started on my
treatment but I know that even if I do have this disease that my other
problems appear to be on the mend. I used to work for a Chinese
herbalist and they have a Chinese all natural herb tea that will
cleanse the body of all toxins. I intend to go tomorrow and get some
of this and hope it will help flush this poison out of my system.
May 2, 2002: Well, I had an appointment with my local Oncologist on
Tuesday 4/22/02. I discussed with him my findings on Aspartame and he
was very much open to the possibility that it may in some way be
involved with my MM. He wanted to do some more blood work and and to
contact M.D. Anderson Hospital and have them send my last lab findings
that they had taken. He also informed me that I had actually started
coming out of remission in Oct. of 2001, which means I was not in
remission for even a year. M.D. Anderson had ordered some lab work to
be done here at a my local doctors office and this doctor had faxed my
oncologist here, as well as M.D. Anderson, the final report.?
http://mm.acor.org/Active/Barnett_Marla.htm
There you go! I hope this is the information you were seeking!
If any part of my answer is unclear, contains broken links, or
contains information you already had, please request an Answer
Clarification, before rating. By not rating until I have responded to
your clarification request, I may continue assisting you on this
question. Remember, this answer if for informational purposes only,
and is not intended to replace sound medical advice from a licensed
physician.
I wish your friend the best.
Sincerely, Crabcakes
(I am not a physician, but an M.T. (ASCP) and have worked in Special
Hematology for many years)
Search Terms
=============
Velcade + efficacy + multiple myeloma
Remicade + efficacy + multiple myeloma
glyconutrients + multiple myeloma
glyconutrients
Mannatech
Aloe vera + multiple myeloma
Multiple myeloma therapies |
