Re: Re: Clinical Trials Lack Patients

[Guest guest]

AThose of us that came in late (2002) Have a lot of respect

and gratitude for the work that you and others have done.

Halff

From: A <suzzienovember@...>

Subject: [ ] Re: Clinical Trials Lack Patients

Date: Sunday, February 20, 2011, 4:55 PM

 

That is so true Lottie. When Gleevec was in clinical trial, my doctor did

not tell me anything about it. I found it in the local newspaper. When I

mentioned it to him, he said OH Well These Things Usually do not work, and you

should consider the BMT. That was in 1998. They already determined that I had

no match, and would be at risk going with a unrelated donor. I made phone calls

until I found a trial in New York. New York was not far from me, and I just

kept calling them over and over again. Finally they got to know who I was and

gave me my appointment. Once I got my foot in the door, things started to fall

into place. I got into the trial in 2000, and when my Oncologist saw the

results I was achieving he was shocked. He then started to refer his patients

to the trial, and had me talk to a lot of them about what they could expect. I

always say you have to be your own advocate for your health care. ITs your

body, not the doctors. If

you know something is available that can help you, check it out and get details

for yourself.

>

> A small proportion of adult cancer patients participate in clinical trials in

part due to a low level of physician referrals, according to an online study

published in The Journal of the National Cancer Institute.

>

> Although more than 8000 clinical trials are accepting participants, according

to the National Cancer Institute (NCI), only an estimated 2% of newly diagnosed

cancer patients participate in them. Prior studies suggest that most eligible

patients do not enroll in trials because their physicians do not refer them.

>

> http://www.medicalnewstoday.com/articles/216371.php

> ********************************

> February 18, 2011. As the first baby boomers turn 65, Loyola University

Hospital has begun offering stem cell transplants to leukemia and lymphoma

patients who previously were too old to qualify. Hospitals traditionally have

not offered stem cell transplants to patients older than 60 due to potentially

severe complications. But Loyola now offers this treatment to patients in their

60s and early 70s.

>

> For patients older than 60 who have aggressive forms of leukemia and undergo

conventional therapy, the five-year survival rate is less than 5 percent. But

six of the first seven plus-60 patients who have undergone umbilical cord blood

stem cell transplants at Loyola have survived. " They're doing much better than

we anticipated, " Stiff said.

>

> http://www.medicalnewstoday.com/articles/216804.php

>

> ******************************

> AMERICAN CANCER SOCIETY

> 1-800-227-2345

> They do offer information as well as assistance, but is less than LLS, but it

all helps.

>

> **********************************

> US Oncology's patient assistance support team helps to relieve much of the

financial stress so that patients seen in our offices can concentrate on getting

healthy. I'm excited to see how many patients can be helped through these

valuable programs. "

>

> http://tinyurl.com/66jbuhv

>

> ****************************

>

> WHAT YOU DIDN'T KNOW ABOUT YOUR BONE MARROW:

>

> The bone marrow is found in the inside of bones. The marrow in the large bones

of adults produces blood cells. Approximately 4% of our total bodyweight

consists of bone marrow. There are two types of bone marrow:

>

> 1. Red marrow, made up mainly of myeloid tissue.

>

> 2. Yellow marrow, made up mostly of fat cells. Red marrow can be found in the

flat bones, such as the breast bone, skull, vertebrae, shoulder blades, hip bone

and ribs. Red marrow can also be found at the ends of long bones, such as the

humerus and femur.

>

> White blood cells (lymphocytes), red blood cells and platelets are produced in

the red marrow. Red blood cells carry oxygen, white blood cells fight diseases.

Platelets are essential for blood clotting. Yellow marrow can be found in the

inside of the middle section of long bones.

>

> If a person loses a lot of blood the body can convert yellow marrow to red

marrow in order to raise blood cell production.

>

> White blood cells, red blood cells and platelets exist in plasma - Blood

plasma is the liquid component of blood, in which the blood cells are suspended.

>

> http://www.medicalnewstoday.com/articles/142595.php

>

> ****************************

> WHAT CAUSED YOUR LEUKEMIA?

>

> Experts say that different leukemias have different causes. The following are

either known causes, or strongly suspected causes:

> a.. Artificial ionizing radiation

> a.. Viruses - HTLV-1 (human T-lymphotropic virus) and HIV (human

immunodeficiency virus)

> b..

> c.. Benzene and some petrochemicals

> d..

> e.. Alkylating chemotherapy agents used in previous cancers

> f..

> g.. Maternal fetal transmission (rare)

> h..

> i.. Hair dyes

> j..

> k.. Genetic predisposition - some studies researching family history and

looking at twins have indicated that some people have a higher risk of

developing leukemia because of a single gene or multiple genes.

> l..

> m.. Down syndrome - people with Down syndrome have a significantly higher

risk of developing leukemia, compared to people who do not have Down syndrome.

Experts say that because of this, people with certain chromosomal abnormalities

may have a higher risk.

> n..

> o.. Electromagnetic energy - studies indicate there is not enough evidence

to show that ELF magnetic (not electric) fields that exist currently might cause

leukemia. The IARC (International Agency for Research on Cancer) says that

studies which indicate there is a risk tend to be biased and unreliable.

> http://www.medicalnewstoday.com/articles/142595.php

>

> **********************************

> FYI,

> Lottie Duthu

>

>

>

>

>

>

>

>

[Guest guest]

That was so nice of you to say that.  I was just glad that I did it for my own

health, and then was able to tell people about it from my first hand

experience.  The only bad thing with the trial was that they did my BMB right

in the physicians office with just Lidocaine, and he would knock my back out

everytime he did it.  I have a bad back, so I would pack my rib belt in my

purse knowing I would have to put it on when he got done with me. The insurance

did not want to pay for me to get it done at the hospital where I could have

gotten something more for pain management, but after the biopsy my husband and I

would walk 3 blocks to NY Presbyterian Hospital to pick up my trial drug which

was STI-571 before the Gleevec got its name. We did that for the whole winter of

2000 in snow and freezing temps.  Sometimes we would be able to catch a Taxi to

go to the hospital, but we were not good at flagging one down, so we walked a

lot.  So it did have its

drawbacks in some ways. It was worth it though.

From: A <suzzienovember@...>

Subject: [ ] Re: Clinical Trials Lack Patients

Date: Sunday, February 20, 2011, 4:55 PM

 

That is so true Lottie. When Gleevec was in clinical trial, my doctor did not

tell me anything about it. I found it in the local newspaper. When I mentioned

it to him, he said OH Well These Things Usually do not work, and you should

consider the BMT. That was in 1998. They already determined that I had no match,

and would be at risk going with a unrelated donor. I made phone calls until I

found a trial in New York. New York was not far from me, and I just kept calling

them over and over again. Finally they got to know who I was and gave me my

appointment. Once I got my foot in the door, things started to fall into place.

I got into the trial in 2000, and when my Oncologist saw the results I was

achieving he was shocked. He then started to refer his patients to the trial,

and had me talk to a lot of them about what they could expect. I always say you

have to be your own advocate for your health care. ITs your body, not the

doctors. If

you know something is available that can help you, check it out and get details

for yourself.

>

> A small proportion of adult cancer patients participate in clinical trials in

part due to a low level of physician referrals, according to an online study

published in The Journal of the National Cancer Institute.

>

> Although more than 8000 clinical trials are accepting participants, according

to the National Cancer Institute (NCI), only an estimated 2% of newly diagnosed

cancer patients participate in them. Prior studies suggest that most eligible

patients do not enroll in trials because their physicians do not refer them.

>

> http://www.medicalnewstoday.com/articles/216371.php

> ********************************

> February 18, 2011. As the first baby boomers turn 65, Loyola University

Hospital has begun offering stem cell transplants to leukemia and lymphoma

patients who previously were too old to qualify. Hospitals traditionally have

not offered stem cell transplants to patients older than 60 due to potentially

severe complications. But Loyola now offers this treatment to patients in their

60s and early 70s.

>

> For patients older than 60 who have aggressive forms of leukemia and undergo

conventional therapy, the five-year survival rate is less than 5 percent. But

six of the first seven plus-60 patients who have undergone umbilical cord blood

stem cell transplants at Loyola have survived. " They're doing much better than

we anticipated, " Stiff said.

>

> http://www.medicalnewstoday.com/articles/216804.php

>

> ******************************

> AMERICAN CANCER SOCIETY

> 1-800-227-2345

> They do offer information as well as assistance, but is less than LLS, but it

all helps.

>

> **********************************

> US Oncology's patient assistance support team helps to relieve much of the

financial stress so that patients seen in our offices can concentrate on getting

healthy. I'm excited to see how many patients can be helped through these

valuable programs. "

>

> http://tinyurl.com/66jbuhv

>

> ****************************

>

> WHAT YOU DIDN'T KNOW ABOUT YOUR BONE MARROW:

>

> The bone marrow is found in the inside of bones. The marrow in the large bones

of adults produces blood cells. Approximately 4% of our total bodyweight

consists of bone marrow. There are two types of bone marrow:

>

> 1. Red marrow, made up mainly of myeloid tissue.

>

> 2. Yellow marrow, made up mostly of fat cells. Red marrow can be found in the

flat bones, such as the breast bone, skull, vertebrae, shoulder blades, hip bone

and ribs. Red marrow can also be found at the ends of long bones, such as the

humerus and femur.

>

> White blood cells (lymphocytes), red blood cells and platelets are produced in

the red marrow. Red blood cells carry oxygen, white blood cells fight diseases.

Platelets are essential for blood clotting. Yellow marrow can be found in the

inside of the middle section of long bones.

>

> If a person loses a lot of blood the body can convert yellow marrow to red

marrow in order to raise blood cell production.

>

> White blood cells, red blood cells and platelets exist in plasma - Blood

plasma is the liquid component of blood, in which the blood cells are suspended.

>

> http://www.medicalnewstoday.com/articles/142595.php

>

> ****************************

> WHAT CAUSED YOUR LEUKEMIA?

>

> Experts say that different leukemias have different causes. The following are

either known causes, or strongly suspected causes:

> a.. Artificial ionizing radiation

> a.. Viruses - HTLV-1 (human T-lymphotropic virus) and HIV (human

immunodeficiency virus)

> b..

> c.. Benzene and some petrochemicals

> d..

> e.. Alkylating chemotherapy agents used in previous cancers

> f..

> g.. Maternal fetal transmission (rare)

> h..

> i.. Hair dyes

> j..

> k.. Genetic predisposition - some studies researching family history and

looking at twins have indicated that some people have a higher risk of

developing leukemia because of a single gene or multiple genes.

> l..

> m.. Down syndrome - people with Down syndrome have a significantly higher risk

of developing leukemia, compared to people who do not have Down syndrome.

Experts say that because of this, people with certain chromosomal abnormalities

may have a higher risk.

> n..

> o.. Electromagnetic energy - studies indicate there is not enough evidence to

show that ELF magnetic (not electric) fields that exist currently might cause

leukemia. The IARC (International Agency for Research on Cancer) says that

studies which indicate there is a risk tend to be biased and unreliable.

> http://www.medicalnewstoday.com/articles/142595.php

>

> **********************************

> FYI,

> Lottie Duthu

>

>

>

>

>

>

>

>