Re: Why does CIG appear to only recognize B Cell CLL?

[Guest guest]

CLL and SLL refer to malignant B-cell lymphocytes exclusively.

When you refer to T-CLL do you mean T-prolymphocytic leukemia (T-PLL)? The term

T-CLL was used back in the 1980, but has been dropped.

See :

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1577366/

http://www.jimmunol.org/cgi/content/abstract/126/6/2205

PLL used to be lumped in with CLL/SLL but was separated out in about 2002, since

the treatments are different.

The T cell diseases comprised large granular lymphocyte (LGL) leukaemia, T-PLL,

and T-NHL.

~chris

http://cllcanada.ca

>

> This is my first post here, so please forgive me if this topic has already

been addressed here somewhere.

>

> I was diagnosed with Large Granular T Cell CLL back in 1990. There seems to

be some uncertainty with this diagnosis because my current Hemotologist tells me

I actually have Large Granular NK Killer Cell CLL, even though I have had no new

tests performed since 1990. My markers from Flow Cytometry done back then are

CD5 and CD56. I am looking for a source of information on T Cell CLL because I

seem to be on the verge of entering Stage 4 after 20 years in Stage 0. I don't

understand why CIG has chosen to ignore this form of CLL. Can someone please

enlighten me?

>

> The CIG welcome page says right up front, " CLL is essentially a cancer of the

B-lymphocytes. Scientists used to say there were both T-cell CLL and B-cell

CLL. However, since 2001, scientists now agree that the usual CLL is a cancer

of the B-cells. "

>

> Also, the CIG pamphlet, " Understanding CLL/SLL " , while a very good source of

information, also seems to take the position that T Cell CLL is not part of the

CLL universe. Why is there such apparent discrimination against T Cell CLL?

>

> Thanks,

> Gerald

>

[Guest guest]

Thank you for your interest, but all I have to go on is my original diagnosis letter from my Hematologist at the time. I'll quote an excerpt for you."... I thought he definitely had Chronic Lymphocytic Leukemia and appeared to have some large granular lymphocytes which are often associated with people who have Rheumatoid Arthritis. I recommended that initially we do flow cytometry of his peripheral blood, and this in fact confirmed a marked increase in Cytotoxic T-cells. I then had him get gene rearrangement studies performed of his peripheral blood, which confirmed a rearrangement in the T-cell receptor. There is no doubt that he has a T-cell CLL, and this is likely associate with his Rheumatoid Arthritis." .. I am also confused because my current Hemotologist tells me I have NK Killer Cell CLL. That based on the same lab information from 1990.This is why I believe I have T-Cell CLL. The treatments for B Cell CLL to not really apply to my form of CLL. I am still wondering why there appears to be a discrimination by not including this subset of the CLL universe in the CLL discussions.Thanks,Gerald On Mar 18, 2010, at 5:01 PM, cllcanada wrote:

CLL and SLL refer to malignant B-cell lymphocytes exclusively.

When you refer to T-CLL do you mean T-prolymphocytic leukemia (T-PLL)? The term T-CLL was used back in the 1980, but has been dropped.

See :

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1577366/

http://www.jimmunol.org/cgi/content/abstract/126/6/2205

PLL used to be lumped in with CLL/SLL but was separated out in about 2002, since the treatments are different.

The T cell diseases comprised large granular lymphocyte (LGL) leukaemia, T-PLL, and T-NHL.

~chris

http://cllcanada.ca

>

> This is my first post here, so please forgive me if this topic has already been addressed here somewhere.

>

> I was diagnosed with Large Granular T Cell CLL back in 1990. There seems to be some uncertainty with this diagnosis because my current Hemotologist tells me I actually have Large Granular NK Killer Cell CLL, even though I have had no new tests performed since 1990. My markers from Flow Cytometry done back then are CD5 and CD56. I am looking for a source of information on T Cell CLL because I seem to be on the verge of entering Stage 4 after 20 years in Stage 0. I don't understand why CIG has chosen to ignore this form of CLL. Can someone please enlighten me?

>

> The CIG welcome page says right up front, "CLL is essentially a cancer of the B-lymphocytes. Scientists used to say there were both T-cell CLL and B-cell CLL. However, since 2001, scientists now agree that the usual CLL is a cancer of the B-cells."

>

> Also, the CIG pamphlet, "Understanding CLL/SLL", while a very good source of information, also seems to take the position that T Cell CLL is not part of the CLL universe. Why is there such apparent discrimination against T Cell CLL?

>

> Thanks,

> Gerald

>

[Guest guest]

What a tumour is and what it is called is designated by the World Health

Organization series on histological and genetic typing of tumours. All medicine

follows these classifications. CLL and SLL now ONLY refer to B cell malignancies

These people classify what the tumours are and which ones are lumped together.

The

medical report you have dates from 1990. Since then many tumours and cancers

have been reclassified several times.

It truly is not discrimination, but rather you are a victim of reclassification.

You should go to a haematologist and get a new FLOW cytometry done as well as a

FISH test. These test will nail down, in current terms, exactly what you have.

Relying on report from 1990 is simply foolish.

~chris

Here is the excerpt about T CLL being reclassified as T-PLL.

" In 1989, the French-American-British (FAB) ative Group distinguished five

subgroups of T cell leukemia, namely, T cell CLL, T cell PLL, human T

lymphotropic virus type I-positive (HTLV-I+), adult T cell leukemia/lymphoma,

and Sézary syndrome. When a new entity called large granular lymphocytic

leukemia was defined (see Chap. 94), the existence of T cell CLL as a distinct

entity became a topic of debate.

Because of this finding, the World Health Organization commissioned a panel of

experts to draft a new classification of the hematologic neoplasms. At a meeting

in November 1997, the panel proposed a categorization of peripheral T cell

neoplasms that largely was based on the Revised European-American Lymphoma

(REAL) classification (see Chap. 90).

However, because of its aggressive clinical behavior, T cell CLL was

reclassified under the heading of T cell PLL, without regard to subtle

differences in morphology. Even together they account for less than 5 percent of

all chronic lymphoid leukemias. "

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

> > >

> > > This is my first post here, so please forgive me if this topic has already

been addressed here somewhere.

> > >

> > > I was diagnosed with Large Granular T Cell CLL back in 1990. There seems

to be some uncertainty with this diagnosis because my current Hemotologist tells

me I actually have Large Granular NK Killer Cell CLL, even though I have had no

new tests performed since 1990. My markers from Flow Cytometry done back then

are CD5 and CD56. I am looking for a source of information on T Cell CLL because

I seem to be on the verge of entering Stage 4 after 20 years in Stage 0. I don't

understand why CIG has chosen to ignore this form of CLL. Can someone please

enlighten me?

> > >

> > > The CIG welcome page says right up front, " CLL is essentially a cancer of

the B-lymphocytes. Scientists used to say there were both T-cell CLL and B-cell

CLL. However, since 2001, scientists now agree that the usual CLL is a cancer of

the B-cells. "

> > >

> > > Also, the CIG pamphlet, " Understanding CLL/SLL " , while a very good source

of information, also seems to take the position that T Cell CLL is not part of

the CLL universe. Why is there such apparent discrimination against T Cell CLL?

> > >

> > > Thanks,

> > > Gerald

> > >

> >

> >

>

[Guest guest]

I had no idea there was a reclassification as you described below. Thanks for shedding some light on this.Since I have been in good health and in Watch and Wait for 20 years, I got rather complacent about researching my disease. Now that my Platelets are dropping below 100, I have a lot more urgency. I have subscribed to the ACOR CLL list for well over a dozen years and never really heard any such discussion about reclassifications. I am just trying to get smart enough to be able to ask all the right questions when I see my Hematologist next week. Can you provide me with any more references concerning the new classifications?Thanks,Gerald On Mar 18, 2010, at 6:43 PM, cllcanada wrote:

What a tumour is and what it is called is designated by the World Health Organization series on histological and genetic typing of tumours. All medicine follows these classifications. CLL and SLL now ONLY refer to B cell malignancies

These people classify what the tumours are and which ones are lumped together. The

medical report you have dates from 1990. Since then many tumours and cancers have been reclassified several times.

It truly is not discrimination, but rather you are a victim of reclassification. You should go to a haematologist and get a new FLOW cytometry done as well as a FISH test. These test will nail down, in current terms, exactly what you have.

Relying on report from 1990 is simply foolish.

~chris

Here is the excerpt about T CLL being reclassified as T-PLL.

"In 1989, the French-American-British (FAB) ative Group distinguished five subgroups of T cell leukemia, namely, T cell CLL, T cell PLL, human T lymphotropic virus type I-positive (HTLV-I+), adult T cell leukemia/lymphoma, and Sézary syndrome. When a new entity called large granular lymphocytic leukemia was defined (see Chap. 94), the existence of T cell CLL as a distinct entity became a topic of debate.

Because of this finding, the World Health Organization commissioned a panel of experts to draft a new classification of the hematologic neoplasms. At a meeting in November 1997, the panel proposed a categorization of peripheral T cell neoplasms that largely was based on the Revised European-American Lymphoma (REAL) classification (see Chap. 90).

However, because of its aggressive clinical behavior, T cell CLL was reclassified under the heading of T cell PLL, without regard to subtle differences in morphology. Even together they account for less than 5 percent of all chronic lymphoid leukemias."

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

> > >

> > > This is my first post here, so please forgive me if this topic has already been addressed here somewhere.

> > >

> > > I was diagnosed with Large Granular T Cell CLL back in 1990. There seems to be some uncertainty with this diagnosis because my current Hemotologist tells me I actually have Large Granular NK Killer Cell CLL, even though I have had no new tests performed since 1990. My markers from Flow Cytometry done back then are CD5 and CD56. I am looking for a source of information on T Cell CLL because I seem to be on the verge of entering Stage 4 after 20 years in Stage 0. I don't understand why CIG has chosen to ignore this form of CLL. Can someone please enlighten me?

> > >

> > > The CIG welcome page says right up front, "CLL is essentially a cancer of the B-lymphocytes. Scientists used to say there were both T-cell CLL and B-cell CLL. However, since 2001, scientists now agree that the usual CLL is a cancer of the B-cells."

> > >

> > > Also, the CIG pamphlet, "Understanding CLL/SLL", while a very good source of information, also seems to take the position that T Cell CLL is not part of the CLL universe. Why is there such apparent discrimination against T Cell CLL?

> > >

> > > Thanks,

> > > Gerald

> > >

> >

> >

>

[Guest guest]

Gerald

T-CLL is the old nomenclature. What you have is T-cell LGL leukemia. LGL stands for large granular lymphocytic. It is associated with rheumatoid arthritis and patients often have a large spleen. It is much rarer than CLL, though minor forms of it are much commoner than people realize. Fortunately most people require no treatment for it. The most likely complication is a low neutrophil count which can lay you open to bacterial infections.

Terry Hamblin MD

[Guest guest]

Gerald - CIG's position is certainly not against any other form of CLL, other than B-cell. It is simply that the overwhelming percentage are just that. So if you posted here, you might get no intelligent replies from patients, except from the docs we have on the group.

So, by all mean post, and Dr. Furman our medical adviser will respond, also perhaps Dr. Hamblin who has recently joined our group.

In a message dated 3/18/2010 5:42:58 P.M. Eastern Daylight Time, gwsmithgw@... writes:

This is my first post here, so please forgive me if this topic has already been addressed here somewhere.I was diagnosed with Large Granular T Cell CLL back in 1990. There seems to be some uncertainty with this diagnosis because my current Hemotologist tells me I actually have Large Granular NK Killer Cell CLL, even though I have had no new tests performed since 1990. My markers from Flow Cytometry done back then are CD5 and CD56. I am looking for a source of information on T Cell CLL because I seem to be on the verge of entering Stage 4 after 20 years in Stage 0. I don't understand why CIG has chosen to ignore this form of CLL. Can someone please enlighten me?The CIG welcome page says right up front, "CLL is essentially a cancer of the B-lymphocytes. Scientists used to say there were both T-cell CLL and B-cell CLL. However, since 2001, scientists now agree that the usual CLL is a cancer of the B-cells."Also, the CIG pamphlet, "Understanding CLL/SLL", while a very good source of information, also seems to take the position that T Cell CLL is not part of the CLL universe. Why is there such apparent discrimination against T Cell CLL?Thanks,Gerald

[Guest guest]

Dr. Hamblin and Gerald

As I have been diagnosed with CLL and finished a 6 round FCR last April.

Diagnosed with CLL in June 2007.

I also have Still's Disease, which started out when I was 7 and is an

obscure form of juvenile rheumatoid arthritis (which the less fortunate

get with a much bigger fury when they are adults rather than first

getting it as children) this association between the LGL leukemia and

rheumatoid arthritis is something new to me. Wow. Of course, Dr. Rai, my

CLL guru, tells me that I am good fodder for a medical journal write up.

Can anybody out there point me to something that I can read on this?

Thanks

Chuck Knull

[Guest guest]

Try this link and start searching:

http://www.who.int/classifications/icd/en/

You can also do a search under:

Revised European-American Lymphoma (REAL)

~chris

> > > > >

> > > > > This is my first post here, so please forgive me if this topic has

already been addressed here somewhere.

> > > > >

> > > > > I was diagnosed with Large Granular T Cell CLL back in 1990. There

seems to be some uncertainty with this diagnosis because my current Hemotologist

tells me I actually have Large Granular NK Killer Cell CLL, even though I have

had no new tests performed since 1990. My markers from Flow Cytometry done back

then are CD5 and CD56. I am looking for a source of information on T Cell CLL

because I seem to be on the verge of entering Stage 4 after 20 years in Stage 0.

I don't understand why CIG has chosen to ignore this form of CLL. Can someone

please enlighten me?

> > > > >

> > > > > The CIG welcome page says right up front, " CLL is essentially a cancer

of the B-lymphocytes. Scientists used to say there were both T-cell CLL and

B-cell CLL. However, since 2001, scientists now agree that the usual CLL is a

cancer of the B-cells. "

> > > > >

> > > > > Also, the CIG pamphlet, " Understanding CLL/SLL " , while a very good

source of information, also seems to take the position that T Cell CLL is not

part of the CLL universe. Why is there such apparent discrimination against T

Cell CLL?

> > > > >

> > > > > Thanks,

> > > > > Gerald

> > > > >

> > > >

> > > >

> > >

> >

> >

>