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PostPosted: Tue May 22, 2012 4:07 am 
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I inform you all that unfortunately I am diagnosed positively with Multiple Myeloma cancer after the positive blood samples of Albumin, like other patients who took Gilenya (Fingolimod). This is a cancer of the immunological system which was destroyed because of Gilenya. I already informed Novartis telling them that I do not want any help from them. Novartis started already to run around one’s nose not even signing their own letter: http://ccsvi-ms.pl/novartis2.jpg
Rici


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PostPosted: Tue May 22, 2012 4:59 am 
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So sorry to hear this Rici. You have been through so much.
I hope they are able to give you a good treatment, maybe stem cells to keep the cancer (and hopefully MS) at bay.


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PostPosted: Tue May 22, 2012 7:11 am 
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Very sorry to hear this news. Multiple myeloma is now more treatable than it was when my mother-in-law had it in the 1990s. I think I saw it mentioned in a TED talk in the context of anti-angiogenesis substances. These slow down even metastases, I think, and shrink or remove tumours, at least they have in animals. The good news is many foods are anti-angiogenic. I think if I had to live on broccoli I could do it, but there are many other choices too.

Again I am sorry to hear your news, and I would be thinking about suing Novartis as I am sure they knew about this. I was told by a person treating me for MS that side-effects of immuno-suppressants can include cancer (unspecified) and specifically, leukemia, which my brother has already, and has suffered host-graft disease after a marrow transplant.

In fact, I think cancer and MS are two opposing sides of the same coin, and treating MS may necessarily make you more vulnerable to cancer.

Terrible news, but keep fighting. Everybody wants you to win.

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'MS' is over - if you want it
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PostPosted: Tue May 22, 2012 1:25 pm 
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Hi Rici,
I'm so sorry to hear about your cancer diagnosis. I hope that you will fight it with every means available to you.

By the way, it would be great if you could copy and paste your letter and run it through Google's translator so that those of us who don't speak Polish can read it. http://translate.google.com/ Thanks.


NHE


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PostPosted: Wed May 23, 2012 2:43 am 
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NHE wrote:
Hi Rici,
I'm so sorry to hear about your cancer diagnosis. I hope that you will fight it with every means available to you.

By the way, it would be great if you could copy and paste your letter and run it through Google's translator so that those of us who don't speak Polish can read it. http://translate.google.com/ Thanks.


NHE

Hi
In the letter Novartis does not only dance around my nose, they also employ the tactic of time delays. For sure Novartis wants to prolong the procedure until the moment that I will die. I will have a surprise for them. In a few days I will inform you in my forum.
Regards
Rici


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PostPosted: Wed May 23, 2012 3:37 am 
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The best I could do with Google's translator...

Novartis wrote:
Dear Sir,

Please note that your e-mail sent on April 2012 to Novartis headquarters in Switzerland, was sent to the office of Novartis Poland in order to deliver the supporting of Information.

In the instance of a pharmaceutical company to obtain the notification for the adverse events that do not come from a healthcare worker entity is responsible for obtaining confirmation of a diagnosis by a person HEALTH PROFESSIONAL.

In relation to an adverse event that was reported by the Lord to the office of Novartis in Switzerland please provide contact details of your doctor, who could convey the company Novartis medical confirmation of reported adverse event. Please provide contact information niniejszch by fax to +48 22 37 54 736 or mail to the address of the Novartis Poland, Department of Medicine, ul. Marynarska 15, 02-647 Warsaw.

Many thanks in advance for your help.

Novartis Poland


So have your doctor file a report with Novartis. That seems straight forward. In the US, the FDA will accept an adverse event report. Does the Polish government provide a similar option available to you?


NHE


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PostPosted: Wed May 23, 2012 2:38 pm 
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fyi re high copper to zinc ratio in multiple myeloma
http://resources.metapress.com/pdf-prev ... ze=largest

i'll see if i can find anything else.. here's a file detailing how fingolimod affects patients:

http://www.fda.gov/downloads/advisoryco ... 214670.pdf

lots of susceptibility to infection. not sure of this pharma's nutrient depletion potential but if infection-fighting nutrients will help, we know what those are. any chance of having some nutrient testing done rici?

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com


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PostPosted: Fri May 25, 2012 7:00 am 
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Hi
Since May 10th I eat bitter apricot seeds (inside the pit) from China, without gene modifications and full of vitamin B17. The pain in the vertebral column and in the lower back are definitely reduced and also the usual back pains during position changes. I can sleep for the whole night lying on the side! Probably I weakened unknowingly the bone marrow with MMS (Jim Humble). I eat 30 apricot seed daily.
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Rici


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PostPosted: Sat May 26, 2012 2:38 am 
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Rici wrote:
I eat 30 apricot seed daily.


You might want to take a careful look at those apricot seeds...

http://listverse.com/2009/01/06/top-10- ... ve-to-eat/
Quote:
The most flavorsome almonds are bitter almonds (as opposed to “sweet” almonds). They have the strongest scent and are the most popular in many countries. But there is one problem: they are full of cyanide. Before consumption, bitter almonds must be processed to remove the poison. Despite this requirement, some countries make the sale of bitter almonds illegal (New Zealand regretfully is one of them). As an alternative, you can use the pip from an apricot stone which has a similar flavor and poison content. Heating destroys the poison. In fact, you may not know that it is now illegal in the USA to sell raw almonds – all almonds sold are now heat-treated to remove traces of poison and bacteria.


See also...

Cyanide poisoning caused by ingestion of apricot seeds.
Ann Trop Paediatr. 2010;30(1):39-43.

    AIM:
    To report diagnostic, clinical and therapeutic aspects of cyanide intoxication resulting from ingestion of cyanogenic glucoside-containing apricot seeds.

    METHODS:
    Thirteen patients admitted to the Pediatric Intensive Care Unit (PICU) of Erciyes University between 2005 and 2009 with cyanide intoxication associated with ingestion of apricot seeds were reviewed retrospectively.

    RESULTS:
    Of the 13 patients, four were male. The mean time of onset of symptoms was 60 minutes (range 20 minutes to 3 hours). On admission, all patients underwent gastric lavage and received activated charcoal. In addition to signs of mild poisoning related to cyanide intoxication, there was severe intoxication requiring mechanical ventilation (in four cases), hypotension (in two), coma (in two) and convulsions (in one). Metabolic acidosis (lactic acidosis) was detected in nine patients and these were treated with sodium bicarbonate. Hyperglycaemia occurred in nine patients and blood glucose levels normalised spontaneously in six but three required insulin therapy for 3-6 hours. Six patients received antidote treatment: high-dose hydroxocobalamin in four and two were treated with a cyanide antidote kit in addition to high-dose hydroxocobalamin. One patient required anticonvulsive therapy. All patients recovered and were discharged from the PICU within a mean (SD, range) 3.1 (1.7, 2-6) days.

    CONCLUSION:
    Cyanide poisoning associated with ingestion of apricot seeds is an important poison in children, many of whom require intensive care.


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PostPosted: Mon May 28, 2012 12:24 am 
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Hi
From G. Edward Griffin, in: "World Without Cancer"
Quote:
(American Media, Thousand Oaks, California, 1974)

the unlocking enzyme is not found to any dangerous degree anywhere in the body except at the cancer cell, where it always is present in great quantity…. the result is that vitamin B-17 is unlocked at the cancer cell, releases its poisons to the cancer cell and only to the cancer cell. There is another important enzyme called rhodanese, which we shall identify as the "protecting" enzyme. The reason is that it has the ability to neutralize cyanide by converting it instantly into by-products that actually are beneficial and essential to health. This enzyme is found in great quantities in every part of the body except the cancer cell which, consequently, is not protected.

... and by the way ... apricot seeds cannot be patented and protected. It’s Mother Nature and not a profit company.
Regards
Rici


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PostPosted: Mon May 28, 2012 4:53 am 
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Rici,
There is no such thing as "vitamin b17." It is a name given to the compound amygdalin which realeases cyanide. It is not a vitamin.

From the American Cancer Society
http://www.cancer.org/Treatment/Treatme ... t/laetrile

From Quackwatch
http://www.quackwatch.com/01QuackeryRel ... trile.html


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PostPosted: Mon May 28, 2012 7:45 am 
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Hi
http://allegro.pl/jadra-pestki-moreli-g ... 45659.html
Regards
Rici


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PostPosted: Mon May 28, 2012 8:31 am 
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anything re my question above rici?

drug-pipeline-f13/topic19981.html#p192260

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com


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PostPosted: Mon May 28, 2012 12:14 pm 
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From the National Cancer Institute...
http://www.cancer.gov/cancertopics/pdq/ ... ient/page2

NCI wrote:
In 1982, a phase II study with 175 patients looked at which types of cancer might benefit from treatment with amygdalin. Most of the patients in this study had breast, colon, or lung cancer. Amygdalin was given by injection for 21 days, followed by oral maintenance therapy using doses and procedures similar to those in the phase I study. Vitamins and pancreatic enzymes were also given as part of a metabolic therapy program that also included dietary changes. One stomach cancer patient showed a decrease in tumor size, which was maintained for 10 weeks while the patient was on amygdalin therapy. In about half of the patients, cancer had grown at the end of the treatment. Cancer had grown in all patients 7 months after completing treatment. Some patients reported an improvement in their ability to work or do other activities, and other patients said their symptoms improved. These improvements, however, did not last after treatment ended.

NCI wrote:
Have any side effects or risks been reported from laetrile?

The side effects of laetrile treatment are like the symptoms of cyanide poisoning. These symptoms include:

    * Nausea and vomiting.
    * Headache.
    * Dizziness.
    * Blue color of the skin due to a lack of oxygen in the blood.
    * Liver damage.
    * Abnormally low blood pressure.
    * Droopy upper eyelid.
    * Trouble walking due to damaged nerves.
    * Fever.
    * Mental confusion.
    * Coma.
    * Death.


NHE


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PostPosted: Mon May 28, 2012 5:32 pm 
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Recommended treatments for multiple myeloma from the Mayo Clinic...

Standard treatments for myeloma
Though there's no cure for multiple myeloma, with good treatment results you can usually return to near-normal activity. You may wish to consider approved clinical trials as an option.

Standard treatment options include:

  • Bortezomib (Velcade). Bortezomib was the first approved drug in a new class of medications called proteasome inhibitors. It is administered intravenously. It causes cancer cells to die by blocking the action of proteasomes. It is approved for people with newly diagnosed and previously treated myeloma.

  • Thalidomide (Thalomid). Thalidomide, a drug originally used as a sedative and to treat morning sickness during pregnancy in the 1950s, was removed from the market after it was found to cause severe birth defects. However, the drug received approval from the Food and Drug Administration (FDA) again in 1998, first as a treatment for skin lesions caused by leprosy. Today thalidomide is FDA approved for the treatment of newly diagnosed multiple myeloma. This drug is given orally.

  • Lenalidomide (Revlimid). Lenalidomide is chemically similar to thalidomide, but because it appears to be more potent and cause fewer side effects, it is currently used more often than thalidomide. Lenalidomide is given orally. It is approved for people with previously treated myeloma, but is also often used in people with newly diagnosed disease.

  • Chemotherapy. Chemotherapy involves using medicines — taken orally as a pill or given through an intravenous (IV) injection — to kill myeloma cells. Chemotherapy is often given in cycles over a period of months, followed by a rest period. Often chemotherapy is discontinued during what is called a plateau phase or remission, during which your M protein level remains stable. You may need chemotherapy again if your M protein level begins to rise. Common chemotherapy drugs used to treat myeloma are melphalan (Alkeran), cyclophosphamide (Cytoxan), vincristine, doxorubicin (Adriamycin) and liposomal doxorubicin (Doxil).

  • Corticosteroids. Corticosteroids, such as prednisone and dexamethasone, have been used for decades to treat multiple myeloma. They are typically given in pill form.

  • Stem cell transplantation. This treatment involves using high-dose chemotherapy — usually high doses of melphalan — along with transfusion of previously collected immature blood cells (stem cells) to replace diseased or damaged marrow. The stem cells can come from you or from a donor, and they may be from either blood or bone marrow.

  • Radiation therapy. This treatment uses high-energy penetrating waves to damage myeloma cells and stop their growth. Radiation therapy may be used to quickly shrink myeloma cells in a specific area — for instance, when a collection of abnormal plasma cells form a tumor (plasmacytoma) that's causing pain or destroying a bone.

Initial therapy for myeloma

The initial chemotherapy used to treat multiple myeloma depends on whether you're considered a candidate for stem cell transplantation and your individual risk profile. Factors such as the risk of your disease progressing, your age and your general health play a part in determining whether stem cell transplantation may be right for you.

  • If you're considered a candidate for stem cell transplantation, your initial therapy will likely exclude melphalan because this drug can have a toxic effect on stem cells, making it impossible to collect enough of them. Your first treatment will typically be lenalidomide or bortezomib combined with low-dose dexamethasone.

    Your stem cells will likely be collected after you've undergone three to four months of treatment with these initial agents. You may undergo the stem cell transplant soon after your cells are collected or the transplant may be delayed until after a relapse, if it occurs. Your age and your personal preference are important factors in determining when to do the transplant.

    After your stem cell transplantation, you'll likely start a new course of treatment with a drug combination that includes bortezomib and melphalan.

  • If you're not considered a candidate for stem cell transplantation, your initial therapy is likely to be a combination of melphalan, prednisone and thalidomide — often called MPT — or melphalan, prednisone and bortezomib (Velcade) — often called MPV. If the side effects are intolerable, melphalan plus prednisone (MP) or lenalidomide plus low-dose dexamethasone are additional options. This type of therapy is typically given for about 12 to 18 months.

Treatments for relapsed or treatment-resistant multiple myeloma

Most people who are treated for multiple myeloma eventually experience a relapse of the disease. And in some cases, none of the currently available, first line therapies slow the cancer cells from multiplying. If you experience a relapse of multiple myeloma, your doctor may recommend repeating another course of the treatment that initially helped you. Another option is trying one or more of the other treatments typically used as first line therapy, either alone or in combination.

Research on a number of new treatment options is ongoing, and these drugs offer important options for those with multiple myeloma. Talk to your doctor about what clinical trials may be available to you.

Treating complications

Because multiple myeloma can cause a number of complications, you may also need treatment for those specific conditions. For example:

  • Back pain. Taking pain medication or wearing a back brace can help relieve the back pain you might experience with multiple myeloma.

  • Kidney complications. People with severe kidney damage may need dialysis.

  • Infections. Antibiotics may be necessary to help treat infections or to help reduce your risk of them.

  • Bone loss. You may take medications called bisphosphonates, such as pamidronate (Aredia) or zoledronic acid (Zometa), which bind to the surface of your bones and help prevent bone loss. Treatment with these drugs is associated with the risk of harm to the jawbone. If you're taking these medications, avoid dental procedures without consulting your doctor first.

  • Anemia. If you have persistent anemia, your doctor may prescribe erythropoietin injections. Erythropoietin is a naturally occurring hormone made in the kidneys that stimulates the production of red blood cells. Research suggests that the use of erythropoietin may increase the risk of blood clots in some people with myeloma.


NHE


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