Re: CLL- Rare and Neglected

[Guest guest]

I have often had a hard time understanding how CLL

could be both the most commen type of Leukemia and

rare at the same time. Can someone explain this?

R.

Dx 11/05,

Adks NY and AZ

[Guest guest]

It is the most common leukemia, but the numbers are very small compared to for

example breast, colon, lung and prostrate cancers.

The NIH considers any disease, cancers included, having under 200,000 patients

in the U.S. to be a rare disease. ( At least in the U.S.) This means the markets

for new is so small that drug companies look elsewhere to invest their R & D. The

NIH initiative is designed to counter some of this...

CLL is primarily a cancer of Anglo Saxon, European and Jewish heritage. It is

infrequently seen in people of African, Indian and Asian decent.

It is a question of numbers...

~chris

> I have often had a hard time understanding how CLL

>

[Guest guest]

Thanks Chris. Does this mean it is more common than acute leukemia?

On Fri, Jan 21, 2011 at 9:13 AM, cllcanada wrote:

> It is the most common leukemia, but the numbers are very small compared to

> for example breast, colon, lung and prostate cancers.

[Guest guest]

Sure we beat acute leukemias. There are more cases of CLL and since CLL moves

fairly slowly there are more of us around living with it for a longer period of

time.

According to the NCI, estimated new cases and deaths from leukemia in the United

States in 2010:

New cases: 43,050

Deaths: 21,840

It breaks down like this for the four common types of leukemia:

Chronic lymphocytic leukemia (CLL): CLL affects lymphoid cells and usually grows

slowly. It accounts for more than 15,000 new cases of leukemia each year. Most

often, people diagnosed with the disease are over age 55. It almost never

affects children.

Chronic myeloid leukemia (CML): CML affects myeloid cells and usually grows

slowly at first. It accounts for nearly 5,000 new cases of leukemia each year.

It mainly affects adults.

Acute lymphocytic (lymphoblastic) leukemia (ALL): ALL affects lymphoid cells and

grows quickly. It accounts for more than 5,000 new cases of leukemia each year.

ALL is the most common type of leukemia in young children. It also affects

adults.

Acute myeloid leukemia (AML): AML affects myeloid cells and grows quickly. It

accounts for more than 13,000 new cases of leukemia each year. It occurs in both

adults and children.

Source: http://www.cancer.gov/cancertopics/wyntk/leukemia

HTH

~chris

[Guest guest]

Hi,

While the marketing potential for CLL drugs is relatively small, that it's a

close cousin of the more common b-cell lymphomas makes it an attractive

population to develop drugs initially (but also for the characteristics of CLL

cited below) ...

.... The company having a drug approved for CLL can then seek to expand the label

(the indication) having established how to use the drug safely at the active

dose - or even to profit from off-label use based on small studies showing its

potential in other lymphomas.

GSK, for example, is aggressively testing Ofatumumab in follicular lymphoma.

(Noting that ofatumumab could be less safe in the untreated population due to

increased infusion related reactions compared to Rituxan and the same use in

heavily pretreated CLL)

Novel Insights into the Biology of CLL

http://bit.ly/eJHpEM

" Several characteristics of CLL facilitate basic and translational research:(i)

the high population prevalence; (ii) the malignant cells are easily obtained

through venous phlebotomy; (iii) most patients have an asymptomatic phase that

allows for longitudinal evaluation; and (iv) CLL is has a relatively long

disease-specific survival. Therefore, CLL has become a model system for the

investigation of B-cell lymphoproliferative disorders.

[Guest guest]

Thanks for this breakdown re. the Leukemias. It is very

helpful. What I can't get my mind around is that with CLL

being the most common leukemia, there is so little going

into the publicity of it (to make it more aware to the gen

public), research and dev. of tx's. I know things are better

now, and things are picking up but... Not complaining, just

stating the facts.

R

[Guest guest]

Rituxan is a case in point. It was first used in NHL and was quite good as a

mono-therapy. It was then tried in CLL and because of our general lack of CD20,

was rather disappointing.

Then it was found to act as an amplifier of other treatments, like FC,

bendamustine, revlimid and so on. Now it is beginning to be used as a treatment

for rheumatoid arthritis.

Similarly, Genzyme the makers of Campath-1H, used to treat CLL patients with

17p deletions, is now focused primarily on Multiple Sclerosis, a far larger and

more lucrative market, where eight infusions of the drug has the effect of

staving off MS symptoms — progressive, irreversible paralysis — for up to four

years.

The benefit to the CLL community will be that Campath will probably be offered

to CLL patients free or at substantial cost reductions based on a means test.

~chris

>

> Hi,

>

> While the marketing potential for CLL drugs is relatively small, that it's a

close cousin of the more common b-cell lymphomas makes it an attractive

population to develop drugs initially (but also for the characteristics of CLL

cited below) ...

>

> ... The company having a drug approved for CLL can then seek to expand the

label (the indication) having established how to use the drug safely at the

active dose - or even to profit from off-label use based on small studies

showing its potential in other lymphomas.

>

> GSK, for example, is aggressively testing Ofatumumab in follicular lymphoma.

(Noting that ofatumumab could be less safe in the untreated population due to

increased infusion related reactions compared to Rituxan and the same use in

heavily pretreated CLL)

>

> Novel Insights into the Biology of CLL

>

> http://bit.ly/eJHpEM

>

> " Several characteristics of CLL facilitate basic and translational

research:(i) the high population prevalence; (ii) the malignant cells are easily

obtained through venous phlebotomy; (iii) most patients have an asymptomatic

phase that allows for longitudinal evaluation; and (iv) CLL is has a relatively

long disease-specific survival. Therefore, CLL has become a model system for the

investigation of B-cell lymphoproliferative disorders.

>