Ann Romney used Chemo therapy for her MS??

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Re: Ann Romney used Chemo therapy for her MS??

Postby reallyreally » Sat Jul 07, 2012 4:15 pm

I have actually been excepted into the Dr Burt trial! Wish me luck
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Re: Ann Romney used Chemo therapy for her MS??

Postby CVfactor » Sat Jul 07, 2012 4:53 pm

reallyreally wrote: I have actually been excepted into the Dr Burt trial! Wish me luck


Reallyreally, this is really really great news about being accepted into the trial. I wish you the best of luck. If you don't mind me asking what is your EDSS score right now?
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Re: Ann Romney used Chemo therapy for her MS??

Postby lyndacarol » Sat Jul 07, 2012 5:07 pm

HarryZ wrote:
reallyreally wrote:The point was that she used chemo. I was only offered FDA approved treatment. (which were available in '98 when she was diagnosed). Maybe I am mistaken, but I believe I have to be in a clinical trial (which I am going to be) for a DR. to try a non approved therapy? Or, at least failed every FDA approved therapy and getting worse. Again, maybe I am wrong.
And with a little look around. The drug could have been Rituximab a "B cell" therapy. There are some articles with Dr Weiner and research with the drug. This is the drug that made it with huge success into phase 2 clinical trials. I think though, sadly, it will become generic in the next couple years. So, there will not be a phase 3.


Any time a patient uses a drug that has not been approved for his/her specific disease, then its use is called "off label". As long as a doctor prescribes the use of the drug, then it is OK and does not need FDA approval.

FDA approval is required if you want to advertise a drug for a specific disease. Clinical trials are required to prove to the FDA that the particular drug meets certain criteria in the disease's treatment.

Over the years we have seen many drugs that have shown tremendous promise in the treatment of MS. Even during some clinical trials, the results look promising but once the medication starts getting used in the general population, the results often become far less effective. The CRAB drugs are but one example.

Harry


Harry is absolutely spot on! A drug that has FDA approval for ANY use can be prescribed by any doctor for ANY patient (whether the patient has the condition for which the drug was first approved, or not). The trick is finding a physician who will prescribe the drug "off-label."
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Re: Ann Romney used Chemo therapy for her MS??

Postby reallyreally » Mon Jul 09, 2012 3:24 pm

"CVfactorReallyreally, this is really really great news about being accepted into the trial. I wish you the best of luck. If you don't mind me asking what is your EDSS score right now?


EDSS 3.0
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Re: Ann Romney used Chemo therapy for her MS??

Postby CVfactor » Mon Jul 09, 2012 3:49 pm

That's a great time to start. Halting further progression is the key but many people have an EDSS reduction by a couple points within a few years. You are very lucky to be in this trial. Best of luck.
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Re: Ann Romney used Chemo therapy for her MS??

Postby CVfactor » Tue Jul 10, 2012 7:09 am

Here is an article written by the doctor that treated Ann Romney (Howard Weiner from Harvard):

http://www.ncbi.nlm.nih.gov/pubmed/19334069
The challenge of multiple sclerosis: how do we cure a chronic heterogeneous disease?
Weiner HL.
SourcePartners Multiple Sclerosis Center, Center for Neurologic Diseases, Brigham and Women's Hospital, Harvard Medical School, Boston, MA 02115, USA. hweiner@rics.bwh.harvard.edu

Abstract
Multiple sclerosis is (MS) a T-cell autoimmune disease characterized by a relapsing-remitting followed by a progressive phase. Relapses are driven by the adaptive immune system and involve waves of T helper cell 1 (Th1), Th17, and CD8 cells that infiltrate the nervous system and provoke a attack. These cells are modulated by regulatory T and B cells. Infiltration of T cells into the nervous system initiates a complex immunological cascade consisting of epitope spreading, which triggers new attacks, and activation of the innate immune system (microglia, dendritic cells, astrocytes, B cells), which leads to chronic inflammation. The secondary progressive phase is due to neurodegeneration triggered by inflammation and is driven by the innate immune system. Why a shift to the progressive stage occurs and how to prevent it is a central question in MS. Effective treatment of MS must affect multiple disease pathways: suppression of proinflammatory T cells, induction of regulatory T cells, altering traffic of cells into the nervous system, protecting axons and myelin, and controlling innate immune responses. Without biomarkers, the clinical and pathological heterogeneity of MS makes treatment difficult. Treatment is further hampered by untoward adverse effects caused by immune suppression. Nonetheless, major progress has been made in the understanding and treatment of MS. There are three definitions of cure as it applies to MS: (1) halt progression of disease, (2) reverse neurological deficits, and (3) prevent MS. Although the pathways to each of these cures are linked, each requires a unique strategy.


Curing Multiple Sclerosis
Immunotherapy to Halt Disease Activity and Progression
One could argue that a cure is a treatment that eradicates MS. This may be true for an infection or tumor but not for MS in which there is an inherent defect of
the immune system and chronic inflammation of the brain. If, however, one treated MS at the clinical onset and prevented disease progression for the remainder of
the patient’s life, it would be considered a cure. There may be patients who are being “cured” with current therapy, though they may have less severe forms of the
disease. Interferons and glatiramer acetate are only partially effective in MS, with stronger effects observed with natalizumab and alemtuzumab.This raises a
central question: Will aggressive and early immunotherapy prevent the secondary progressive form of the disease? With the strong antiinflammatory effects of a
drug such as alemtuzumab, this question could be addressed in the future, though widespread testing may be prohibited by adverse effects. Other approaches of
aggressive immunotherapy at disease onset to test this hypothesis include bone marrow transplantation, nonablative chemotherapy utilizing cyclophosphamide, or
induction with a drug such as cyclophosphamide or mitoxantrone followed by maintenance immune modulation. We found that a short course of cyclophosphamide
was very effective in shutting down disease activity in early aggressive MS, but less effective in older patients who had entered the later progressivestages
. This
phenomenon was also observed in trials of beta interferon in progressive MS and with other anti-inflammatory drugs such as alemtuzumab and rituximab.
Patients most likely to respond to drugs with anti-inflammatory actions are those with active disease progression and adaptive immune activity as evidence
by continued relapse activity.


So, you can see many researchers within the mainstream medical community working on MS believe that the immune system is at fault and that it is neccessary to stop the inflamitory process before neurodegeneration occurs, such as using chemotherapy or HSCT protocols. These essentially re-set the immune system because of defects that have been acquired due to genetics and environment.

But one thing that is becomming clear, the immune system is faulty. In particular the Regulatory T-cell (or Treg) whose job is it to monitor the immune system and shut-down autoimmunity when it happens. Every persons immune system will attack its own tissue, but a person with healthy regulatory T-cells will stop this process when this occurs.

This is not only the case with MS, but is also true for other autoimmune diseases. For those interested in regulatory T-cells, their history and how they are trying to be manipulated in diabetes, here is an excellent video that explains this by Dr. Jeffery Blustone of the University of California:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2565852/

And here is a company that is also using regulatory T-cells to develop therapies for Diabetes as well as MS:

http://www.txcell.com/index.php?option=com_content&task=view&id=60&Itemid=115

So, this is where I believe science is going with MS.
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Re: Ann Romney used Chemo therapy for her MS??

Postby HarryZ » Tue Jul 10, 2012 8:25 am

Yes, mainstream MS research has been pretty much focused on this theory about the immune system. The cost has been huge and we know who has funded it. It has been going on for some 25 years.

But in the past 5 years or so, other MS researchers have published different theories in which they say neurodegeneration is causing the inflammation and the immune system is reacting to this. A different theory and unproven. But the faulty auto-immune theory is unproven as well.

The MS immune system altering drugs that have been developed have had a very widespread efficacy on patients. The results are all over the map. That is a known fact. Most patients on these drugs have had their MS progress. The trend recently has been to go to more powerful drugs looked at in some trials.

While these drugs help some patients, some researchers feel that the answer that causes inflammation is something else which of course is unknown and until this unknown cause is discovered, MS will continue to progress.

We can only hope that the true cause of MS is discovered in the near future.
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Re: Ann Romney used Chemo therapy for her MS??

Postby georgegoss » Tue Jul 10, 2012 2:38 pm

Except that immune dysfunction has already been scientifically proved as the root of MS pathology, regardless of the funding source to develop the data:

Researchers publish results settling multiple sclerosis debate

"This work is significant because for the first time we are able to definitively establish a cause-and-effect relationship linking the marked T cells to the development of relapses and show unambiguously that it was the same T cells that mediated relapsing cycles. . . . Targeting such disease-causing T-cells in MS is definitely a valid therapeutic approach that should be pursued," Tse added.

http://media.wayne.edu/2011/02/22/wayne ... s-settling

This result would have been impossible to establish (through conclusive radio-labelling) if the immune system were not intimately involved with the underlying pathology and damage mechanism of MS.

Further, if the immune system were not at the pathological root of MS, then clearly several hundreds-of-thousands of patients around the world would not have their disease progression slowed by immunomodulator therapies which the population studies have already conclusively demonstrated as real. (And it is also known that immunomodulaor drugs don't work for everyone because of the immune system's spreading epitope, the reason that HSCT has a superior curative effect for most MS patients compared to any/all other theraputic approaches.)

Although the specific role of T-regs is not yet completely elucidated (I'm sure it will be someday), this is far FAR more plausible of an explanation as compared with any speculation about non-immune mediated pathology of MS.
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Re: Ann Romney used Chemo therapy for her MS??

Postby HarryZ » Tue Jul 10, 2012 3:22 pm

georgegoss wrote:Except that immune dysfunction has already been scientifically proved as the root of MS pathology, regardless of the funding source to develop the data


While the immune system does attack inflammation in one's brain, is it right to say it is dysfunctional? I would think that it is doing what is programmed to do....fight infections, viruses, inflammation etc. And this is where differences of opinion with MS come to light. Some researchers say the immune system is all mixed up while others say there is another unknown cause of the inflammation and the immune system is simply doing its job.

Further, if the immune system were not at the pathological root of MS, then clearly several hundreds-of-thousands of patients around the world would not have their disease progression slowed by immunomodulator therapies which the population studies have already conclusively demonstrated as real. (And it is also known that immunomodulaor drugs don't work for everyone because of the immune system's spreading epitope, the reason that HSCT has a superior curative effect for most MS patients compared to any/all other theraputic approaches.)


Only about 33% of the MS patients benefit in varying degrees from immunomodulator therapies. That would mean about 70% of the population doesn't react the way they should to these drugs and the disease progresses. I don't think those numbers conclusively demonstrate and prove the immune system pathological root of MS.

Although the specific role of T-regs is not yet completely elucidated (I'm sure it will be someday), this is far FAR more plausible of an explanation as compared with any speculation about non-immune mediated pathology of MS.


I suppose it depends on what side of the MS research fence one is sitting.
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