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#1 dede5

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Posted 19 September 2015 - 09:09 PM

I actually saw this on another thread, but have wondered many times the same thing about CML. I've read and heard that this is rare, but what does that mean? It seems to me like a lot of people have it. Does anybody know if it is still considered to be rare, or is that old information? Just wondered...


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#2 mikefromillinois

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Posted 19 September 2015 - 09:31 PM

It is still considered to be "rare".  This is a nice overview:

 

http://www.cml-info..../about-cml.html

 

Before tki's came along people died from CML at a pretty high rate so the overall census of people with the disease didn't rise much.  Now that we have tki's people are living longer lives with the disease so the census of people with the disease keeps getting higher - making it seem like 'a lot of people have it'. 

 

The "rareness" of the disease relates to the measurement of new cases vs the population, and in the case of CML that is still a pretty low ratio compared to others in the universe of diseases.



#3 tiredblood

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Posted 19 September 2015 - 09:34 PM

I haven't thought of it as rare, but it is listed on the National Organization for Rare Disorders' website.  However, I was the first person I ever met that was diagnosed with CML.  :wub:

http://rarediseases....enous-leukemia/



#4 RayT

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Posted 20 September 2015 - 12:35 AM

CML only represents approximately 10% of all newly diagnosed leukemias. Only about 5,000 new CML patients are diagnosed each year in the entire US.  This "rarity" is one of the reasons CML is on the list of cancers automatically attributed to 9/11 Ground Zero work.  I don't have total numbers, but I have 2 personal friends who were diagnosed with CML within a year of my diagnosis in January 2014.  Think about the odds that 3 friends (who all worked at Ground Zero) would contract a disease that only affects 5,000 out of 319,000,000 people!



#5 chriskuo

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Posted 20 September 2015 - 12:51 AM

Note that even among leukemias, CML is relatively uncommon.  Between 50,000 and 60,000 cases of leukemia are diagnosed in the US each year.  Only about 10% of the diagnosed cases are CML.  AML is the most common, and CLL and ALL are more prevalent.

 

As pointed out, the number of people living with CML has grown rapidly over the last 15 years due to the introduction of TKIs.  As a result, the market for TKIs has increased substanially as people live longer with CML.

 

In the US, the number of people living with CML is estimated above 50,000, but that is less than ,02% of the total population, or less than 1 in every 5,000 people.    In a city of 50,000 people, you are likely to find a handful of people with CML, but not a lot and in general they will be people age 50 and older.



#6 MsLaLa

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Posted 20 September 2015 - 01:41 AM

I've actually thought the same thing.
­čî║MsLaLa

#7 Lisa Lisa

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Posted 20 September 2015 - 10:29 PM

Ray
I worked at Ground Zero and continued to work across the street from there until May 2014. I was diagnosed with CML late Feb 2015.

Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15

     22%  5/15     0.13% 6/15   PCRU attained 9/15

Initial dose Sprycel 100 mg 3/15  Lowered 80 mg 5/15   Lowered 50 mg 1/16

Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage

Sprycel: Currently 50 mg per day - taken 10 pm

 


#8 winespritzer

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Posted 20 September 2015 - 10:49 PM

I worked within walking distance of Ground Zero and was diagnosed on 1/14/14.
A friend who lived blocks from Ground Zero was diagnosed with multiple myeloma in 2013.
My onc advised me not to think about how I got cml!
Winespritzer

CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#9 chriskuo

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Posted 21 September 2015 - 12:05 AM

Ray.

 

Your odds are off by a factor of about 100.  More than 5,000 people are diagnosed in the US each year.  Around 4 million people turn 50 each year, so it would be fair to say the lifetime incidence is closer to 1 in 1,000

 

Thus, it is not unusual for multiple people in a group of 10,000 to have CML, but it is rare enough that it is difficult to attribute a "cause"

to CML, because so few people with the same exposures develop it.   The closest I am aware of the atomic bombing of Japan.



#10 Cool Hand Leuk

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Posted 21 September 2015 - 07:14 AM

Question about Ground Zero

Was there ever any mention of Radon Gas in the excavation?



#11 Billie Murawski

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Posted 26 September 2015 - 02:17 AM

Hi DeDe, I don't think this is considered rare for me but it's the weekend of the wedding and I'm sitting in another no-tell motel in Cranberry township pa. So much for my luxorius 4 day weekend in an exclusive place with all the amenities. All Ron wanted to do was get down here and pick up his tux and find a place to stay, I kept looking on the internet for nice places but he said he wouldn't drive all over the place looking for a place to stay. He grew up in this fu@#$&% area is a small place how much looking does he have to do. I can't sleep because I had 4 glasses of iced tea at the rehearsal dinner. It's an outside wedding so we so we got attacked by mosquitos all during the rehearsal. Thank God for those mosquitos because I stopped at rite-aid to buy some bug repellant on the way home back to the hotel and while I was in there I got the worse case of sharts since I went off Gleevac 5 years ago. To make my week even better I had to go to the dermotologist last monday I had a sc on my forehead 1 on my left eyebrow 2 on my right eyebrow 1 right under my nose and I had to have a biopsy right in front of my ear and a punch biopsy right above my wrist and 1 on my leg those were frozen with that stuff they use. I look like I have chicken pox. Ron's ex is now my new best friend she travels all over the world with her new husband and I get to go to yet another no tell motel. Trust me there isn't anything to tell!!! More news tomorrow same time same place I figure. If it.s a dry reception I'm gonna find the little watering hole in the woods and I'll take a cab home when I'm good and ready sometime next week.  Stay tuned update tomorrow, oh God please let me be drunk. Luv Billie



#12 dede5

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Posted 26 September 2015 - 10:56 PM

Billie, this sounds like an adventure to me. I always say people who only stay in high rises don't know how to really live. That derm visit sounds rough. Hope it's all ok. Hope you find your relaxation liquid soon, Looking forward to the update. DeDe


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#13 Gail's

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Posted 27 September 2015 - 01:54 PM

Funny about cml being rare. Two people in my clinic know others with cml. They told me what a piece of cake it is. Or appears to them to be.

Billie, we need all the details!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088




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