From A New Member

[Guest guest]

Hi Alice:

I'm happy the cause of the problem has at least been found. I hope and pray

that some center can figure out how to reinchochleate the array or at least

get it out of the way of the balancing thingee. The newly implanted one is

working without a hitch I trust.

Thanks for saying your current doctor is excellent. I was worried he'd done

the deed and was wondering where my array might really be.

Hal

[Guest guest]

Hi Dianna,

Thanks for the introduction and welcome to the group. I could feel your

excitement on your upcoming evaluation and possible implant. This is a very

exciting time for you and I am very glad that you came forward so we can share

it with you.

It's always so interesting to read of the process in contries outside of the US.

Many people here would be very upset to wait as long as you expect to wait but

any wait for hearing is worth it.

I'm looking forward to more of your posts.

Alice

From: redhotmama45113

Hello everybody!

I joined this great group last week and have been drinking in the

messages like a thirsty person receiving water after a long dry

spell.

[Guest guest]

This message is directed to the SSRI medications:

I recently joined your group and I am very happy that I did.

I have a child who has been in the system for over seventeen years.

He has suffered tremendously and still suffers to this day. The last

placement that I felt forced to consent for him to be in was a complete

disaster. This 'facility' pried my son with drugs that I objected to and it

seems that this combination and this 'placement' was more damaging

than all the places and years before.

The biggest offender was the drug that has been in the news as of late.

That drug being Zyprexa. This was combined with a drug trade name

Lexapine. I specifically wrote to the 'doctor' and told him that I would

not consent to this drug. However, I discovered later that this drug was

given to my son despite my disapproval.

As a result of being at this facility and now being released my son is

in torment.

About two years ago I filed a lawsuit against the system to protect

my son from what I felt was imminent danger at the time.

Ms. Philo assisted me and has copies of the suit on her website.

This suit Chronicles my son and our family's painful ordeal in the

system. My son has managed to survive this long, however he is

suffering now.

I am taking the liberty to attach (under seperate cover) the document and

also the answer from the Federal court. There was a request for dismissal

because I could not represent my son as a non lawyer. I was disappointed

by this but I did want to tell my son's story which I believe in part represents

so many children's and young people's similar experiences. This was

written and filed at a time when I felt my son in imminent danger as

I stated. I have felt that way many times. This is one of the reasons

I took on this task. I do not regret it and it did seem to halt (for a time)

the so-called 'powers that be'.

In the Federal court answer, one of the legal issues that the judge pointed out

was the violation of giving my son the drug Closaril that I stated I vehemently

objected to. My son had to be hospitalized because of this dangerous drug.

I was devastated.

When this all began I had so little information regarding this system and the

drugs that are given to people, including children, like 'candy'. I have learned

much since then however so much damage was done to my son by that time.

As I said the attachment tells some of our story.

Thank you for your attention.

Enne

Mother of Dirul

New Member

[Guest guest]

Boy, Literally hundreds of us on this list have taken fludara (bine) and are living full, normal lives. I'm 70 and have had 13 rounds of fludarabine over the last 12 years. I still can't pick up 200 lbs -- but I never could -- and otherwise I go about my life just fine. is absolutely right though, you're young enough so you should want a combination of fludara and something else which will increase your chances greatly of a nice long remission where the disease stays away, so all you'll have to worry about are the 436 other things wrong! I'm just making fun of myself too—all the doctors I see lately! Oy!!Ellen D.On Mar 22, 2010, at 11:42 AM, JB50192@... wrote:

Hello Boy, and welcome

Sounds like you've had more than your share of troubles

As you probably know, many cancers have become slightly less common over the years. One exception is lymphoma, of which CLL is one type. Nobody quite knows why, but environmental conditions are certainly one main risk factor being considered. If you were anywhere near Agent Orange, chances are not unreasonable that this is the reason for some of your troubles. Perhaps not so much the heart issues, but certainly anything having to do with cancer, and possibly diabetes.

We do not know much about your current CLL situation, but you have been recommended Fludara, which is still one of the most used first line treatments. Be sure you do NOT get Fludara alone. Get it either with Cyclophosphamide (called FC), or with Rituxan (called FR), or with both (called FCR). Fludara alone has not been shown to be very useful, perhaps even harmful.

If you could let us know a bit more about your other symptoms (blood counts, for example), you might get some more inputs from the list.

Are you in good hands? Where will you be treated? Is the doctor taking care of you a hematologist? All important questions, patients need to be educated and have a say in their situation......That's the reason for this group.

From what you describe it does not seem that you need a second opinion, as other doctors were already involved.

If you care to, give us more info and details, and good luck.

In a message dated 3/22/2010 10:05:19 A.M. Eastern Daylight Time, jb5587@... writes:

Hi Everybody..

I'n new to this group..My name is Boy.

Me and my good wife live in Winnipeg,Manitoba,Canada.

I did 25yrs in the Canadian Military and retired 10 yrs ago.

I am 68yrs young..!

When I turn 61 yrs a lot has happen.

I got Colon Cancer and had to have a Colostomy and wear a bag.

I went through six months of Chemo and radiation.

Prior to this I had a Angiogram and found out I had a 99% blockage in my coronary.

I had to get a Stent put in witch I still have today.

Years later because I was getting to many Polyps I had to remove my Large Colon.

I had to go on another bag attach to my small Intestine{IIEOSTOMY}

Again more chemo..I still wear the bag today.

Then I became a Type 2 Diabetic.

At a normal medical check up my GP found some spots all over me and sent me to a Dermatologist.

She said that I have skin canser and put me on Efudex 5%-Fluorouracill Cream-Actinic.

As of today most of it is cleared up.

At another normal Medical check up I had blood test done and my GP found out my white blood cells are down.

He sent me to a Oncologist and she agree.She told me that I have Chronic lymphocytic leukemia (CLL).

Much time later she also found bumps on my Lympth Nodes in my neck and under my arm pits.She order a Cat Scan.

The Cat Scan report came back and found growth in what she found plus a small one in my upper area of my chest.

Now I have to go on "Fludara" . As of now I'm waiting to get the call to come in

Four Doctors have confirm that this could be from a CHEMICAL.

Below is a Information Source..!

-------------------------------------------------------------

THE GROWING SOURCE OF INFORMATION ABOUT CHEMICAL SPRAYINGS ON CFB GAGETOWN AND SURROUNDING COMMUNITIES FROM 1956 TO 1984

Over one billion grams of Agent Orange, Agent Purple and Agent White were sprayed on CFB Gagetown and surrounding communities from 1956 to 1984 consisting of 3.3 million litres and kilograms of Dioxin, Picloram, 2,4-D + 2,4,5-T, and Hexachlorobenzene In May/June of 2005, the CBC National, CTV, Global TV and hundreds of newspapers across Canada reported the ongoing stories of the spraying of Agent Orange and Agent Purple at Canadian Forces Base (CFB) Gagetown, New Brunswick, Canada.Document A-2004-00207 was obtained through the Access to Information Act from The Department of National Defence (DND) Freedom of Information Directorate in Ottawa. This document, authored by DND, - a collection of letters, emails, pictures, charts, diagrams and transcripts of briefings contained the decades-hidden truth about the severity of the sprayings on CFB Gagetown.The Agent Orange document, as it became known, showed the extent of the sprayings of Dioxin, Hexachlorobenzene and Picloram contaminated defoliants for a 28-year period over an area of 181,000 acres on CFB Gagetown. Our Department of National Defence claimed the U.S. military had been invited to test only two and one half barrels (483 litres) of Agent Orange and Agent Purple and other unregistered herbicides for a total of three days in June 1966 and four days in June of 1967. However, DND’s own documents show that shocking amounts were sprayed for 10 years before the Americans sprayed their miniscule 483 litres in the summers of ’66 & ’67 and DND continued to spray millions of litres for a further 20 years after the Americans had packed up and gone home. During the 28 years that DND sprayed, the enormity of the spray exposure and drift became evident as thousands of civilians and military personnel became sick and were/are dying from being poisoned by the carcinogenic toxins in Oromocto, CFB Gagetown and all of the communities surrounding CFB Gagetown

Diseases Caused By Exposure To Agent Orange, Agent Purple & Agent White

Veterans Affairs Canada Health Risks Associated with Exposure to Agent Orange and Other HerbicidesSeptember 12, 2007As stated on VAC ( Veterans Affairs Canada) websiteThe Institute of Medicine (IOM) is widely considered to be the definitive source for medical information related to Agent Orange. Updates are issued every two years and VAC is using Update 2004 as the reference for both disability benefits and the ex gratia payment and all references in this document are to Update 2004, including the list of conditions outlined below.Based on the scientific evidence available, the IOM has identified various health outcomes that are statistically associated with exposure to Agent Orange but has not concluded that exposure is the actual cause of these health outcomes.The vast majority of these associations have only been observed in studies of heavily exposed populations, such as workers who were involved in chemical manufacturing or who have applied herbicides for many years. The IOM states, "many conclusions regarding associations between exposure, to TCDD or herbicides, and diseases are based on studies of people exposed in occupational and environmental settings rather than on studies of Vietnam Veterans."As of Update 2004, the IOM concluded there is "sufficient evidence of an association" for five health outcomes (referenced as Category 1). The designation "sufficient evidence of an association" means that a positive association has been observed between herbicides and the outcomes in studies in which chance, bias and confounding could be ruled out with reasonable confidence.Category 11. Chronic lymphocytic leukemia (CLL) - most common of the four primary forms of leukemia: the acute and chronic forms of lymphocytic leukemia and acute and chronic forms of myeloid leukemia.2. Soft-tissue sarcomas - a group of different types of malignant tumours (cancer) that arise from body tissues such as muscle, fat, blood and lymph vessels and connective tissues (that is, distinct from hard tissue such as bone or cartilage). These tumours are relatively rare.3. Non-Hodgkin's lymphoma - a group of rare malignant tumours that affect the lymph glands and other lymphatic tissue.4. Hodgkin's disease - a malignant lymphoma (type of cancer) characterized by progressive enlargement of the lymph nodes, liver, and spleen, and by progressive anemia.5. Chloracne, - a skin condition that looks like common forms of acne that often affect teenagers.The IOM has also found "limited or suggestive evidence of an association" for seven outcomes (referenced as Category 2). The designation "limited or suggestive" means that the scientific evidence of an association is limited because chance, bias and confounding could not be ruled out with confidence.Category 26. Respiratory cancer (of lung and bronchus, larynx, and trachea)7. Prostate cancer - one of the most common cancers among men.8. Multiple myeloma - a form of cancer in specific bone marrow cells called the plasma cell. This form of cancer is characterized by plasma cell tumours in bones in various parts of the body.9. Early onset transient peripheral neuropathy - a nervous system condition that causes numbness, tingling, and muscle weakness by involvement of the peripheral nervous system, that is, nerves outside the brain and spinal cord.10. Porphyria cutanea tarda - a disorder characterized by thinning and blistering of the skin in sun-exposed areas.11. Type 2 diabetes (mellitis) - high blood sugar levels that result from defects in the body's ability to produce and/or resistance to the actions of the hormone insulin characterize diabetes. There are two major types of diabetes: Type 1 and Type 2. Type 1 occurs most commonly among juveniles but occasionally among adults. Type 2 occurs primarily in adults and only occasionally in juveniles.12. Spina bifida in offspring of exposed individuals - most frequently occurring permanently disabling birth defect. Neural tube defects (NTD) are birth defects that involve incomplete development of the brain, spinal cord, and/or protective coverings for these organs. Spina bifida, the most common type of NTD, results from the failure of the bony spine to close properly during the first month of pregnancy. In severe cases of spina bifida, the spinal cord protrudes through the back and may be covered only by skin or a thin membrane.

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Hear is the Info and Treatment for "FLUDARA" that I have to go no.

http://www.healthyontario.com/DrugDetails.aspx?brand_id=1359 & brand_name=Fludara

I'm very nervous about this and any information you know would be much appreciated.

Thank You,

Boy

[Guest guest]

Boy,

You have more than paid your dues! Sorry you have to join us, but glad to share what we know.

I was treated with Fludara, Cytoxan and Rituxan last week. Four days of various infusions, then one day feeling pretty bad (but I got plenty of pre-treatment, so no nausea), and today I went back to work and worked more than a full day. I actually feel better than I have in a long time!

Fludara, according to my chemo nurses, causes the least trouble of the drugs I took. It is also very effective. My counts are down a lot (sounds like they hope yours will go up). Anyway, just to put your mind at ease, the Fludara isn’t as bad as I thought it would be.

Blessings on your treatment, and you!

Marcia

on 3/22/10 9:04 AM, Boy at jb5587@... wrote:

Hi Everybody..

I'n new to this group..My name is Boy.