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Reading For The Newly Diagnosed CML Patient

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#1 Trey

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Posted 16 September 2014 - 02:35 PM

New CML patients often ask "how can I get started understanding CML?"  This is a compilation of information which may help the newly diagnosed CML patient understand the basics of CML leukemia.  It pulls together some useful basic information and also references several links on the L&LS CML Forum and other websites which provide introductory information about CML. 

 

We all remember how helpless we felt when newly diagnosed with CML, and how this support group helped us. The information below covers a variety of subjects, starting with general information, and going to more  specific information about CML. When getting started it helps to know  where to find just a very few of the more useful resources regarding  CML. This information may also help avoid the numerous out-of-date (and needlessly scary) websites that would only cause undue anxiety, which is  what most people find when initially searching the internet for information about CML leukemia, especially related to survival, prognosis, life span, and other important issues.  Such information is also useful to help family and friends understand what the newly  diagnosed CML patient is facing. And the news is generally positive,  since the outlook for CML has greatly improved over the past decade.

In general, the outlook for CML has changed significantly for the better since 2001 when Gleevec was approved for treatment. This drug changed CML from a deadly disease into one that is highly survivable for most people, with less impact on our quality of life than prior to 2001.  Additional CML drugs (Sprycel,Tasigna, Bosulif, & Iclusig) have also been approved, and more are being developed. As a result of these extraordinary new drugs, the overall probability of surviving CML is now about 95%. This compares with numbers that were very poor prior to the introduction of Gleevec. 

 

To start with some good news, if you have just been diagnosed with CML, below is a summary article that shows the dramatic changes in treating and surviving CML as a result of the drugs that have been approved since  2001.  A recent article declared that CML patients have achieved a life expectancy similar to the normal overall population because of these drugs:

http://www.drugs.com...rate-30274.html

 

Dr Brian Druker, a leading CML specialist who was instrumental in the development of Gleevec, said  "we assume that most CML patients will now live a normal lifespan".  Because Gleevec was only approved in 2001, CML experts had previously hesitated to put a time-frame on expected survival due to lack of data, even though they often said it could be significant.  In 2010 Dr Druker said "Today, more than 100,000 lives have been saved by Gleevec. In May of  2001,  Gleevec was approved by the FDA in record time. Now, the five-year survival rate is 95% for this previously fatal leukemia. People diagnosed with this leukemia were once told they had five years to live, or less; now we are projecting 30."  This should be very encouraging, and especially encouraging to young people with CML, since lifespan estimates appear to be close to "normal" as more data is accumulated and more drugs are developed.

In 2012 a leading CML expert, Dr Neil Shah, stated: "it appears that the likelihood of dying of CML is approximately equivalent to the likelihood of dying of other causes, and it is hoped that with longer follow-up and more access to effective next-generation TKIs, the majority of chronic-phase CML patients, in stark contrast to historical experience, will die of causes unrelated to CML or its treatment."

http://www.cancernet...e/10165/2107596

 

News articles about how CML has become a very survivable disease:

http://jnci.oxfordjo...nci.djr127.full

http://www.nytimes.c...ner=rss&emc=rss

 

It is important for patients, family, and friends to know the following:  1) CML has changed from a poor prognosis to a very good prognosis due to our multiple drug choices - the survival rate is around 95%; much internet  information is very out-of-date on this issue because of the recent and rapid advances in treating CML using drug therapy; 2) bone marrow transplant has become a very rare event for those with CML, where in the past it was a primary therapy; 3) CML is probably the most likely leukemia to have a cure discovered in the reasonable future, according to CML experts, 4) most CML patients will live a normal lifespan.

 

This information does not mean every person will respond the same way to drug therapy, and there is still a small percentage chance of not surviving CML, but overall the news is very positive.

 

The only clear risk factor for developing CML is age, but of course people of all ages can get CML.  Direct external causes of CML except for very high dose radiation have not been established.  People of all lifestyles, diet, vitamin intake, occupations, ethnicity, health status, sunlight or lack thereof, etc, etc, get CML in relatively the same statistical amounts.

http://www.cancer.ne...ml/risk-factors

 

Some reading resources:

The Leukemia & Lymphoma Society (L&LS) Online Overview provide information for the newly diagnosed:

http://www.lls.org//...ls/leukemia/cml

Information from leading CML specialist Dr Brian Druker:

http://www.ohsu.edu/...Is Within Reach

(NOTE: In link above start about 1/4 way through to skip the intro stuff)

Animation showing the chromosome translocation that creates the BCR-ABL gene that causes CML, and also how CML TKI drugs work:
http://www.youtube.c...h?v=7ZMVQ1Vbb7Y

Video Presentations on CML and Treatment:

http://www.lls.org/#...ecenter/videos/
http://www.avid-ed.com/lls0149/

 

Here is an article which outlines the history of how Gleevec changed the treatment of CML (somewhat long but a good read):

http://www.smithsoni...html?c=y&page=1

 

Information on Managing CML:

http://bloodjournal....full/110/8/2828

 

Time Magazine article from when Gleevec was first approved in 2001:

http://www.time.com/...?internalid=ACA

The Leukemia & Lymphoma Society has a live person help line available to answer questions about CML:
1-800-955-4572

If you wish, before you call the L&LS CML Helpline, you can also search our support group website using the search button in the upper  right part of the web page. You can search for discussions we have had  regarding many subjects such as drug side effects, understanding test results, and many other subjects. Or just join our support group and start posting questions.

 

This information is trying to fill a need to help the CML Newbie get started, and to help eliminate the unnecessary shock of sorting through outdated information about CML on the internet that will needlessly scare you, your family, and friends. So much has changed in such a short time due to the new CML drugs. As a result, you will very likely live a long and mostly normal life, and without requiring a marrow transplant.  A few will still not be so fortunate, but research continues to make advances, and new drugs are coming along to help those who are not currently doing as well. There is much to be hopeful about, and much to  be grateful for. We are here if you need us, so please join in and learn  along with us about living with CML leukemia.

 

Other postings which the newly diagnosed CML patient would find useful:

 

Here is a blog I have put together discussing numerous CML related subjects listed A - Z:

http://treyscml.blogspot.com/

 

CML Testing Introduction:

http://community.lls...w-updated-2014/

 

Genetics of CML Leukemia (Overview):

http://community.lls...70-genetics-of-cml-leukemia-an-overview/?hl=%2Bgenetics+%2Bcml


Edited by Trey, 03 August 2015 - 04:50 PM.


#2 JPD

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Posted 16 September 2014 - 10:51 PM

Trey - on behalf of EVERYONE... THANK YOU!  You are an absolute rock (star) in these parts.  Gladly buy you a beer/wine/soda/lemonjuice if ever given the chance.


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#3 Trey

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Posted 03 March 2015 - 04:37 PM

Time to bump this up -- there are many new members who could benefit from reading this introductory information.



#4 JPD

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Posted 03 March 2015 - 04:44 PM

Ah, as I asked it the "Who Are You" thread - can we not get this thing pinned?  Who do we talk to about that?  Its silly its not.


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#5 Billie Murawski

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Posted 05 March 2015 - 12:02 AM

I will bump this up, I've read it a few times.  Thank you Trey



#6 Davetl

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Posted 06 March 2015 - 08:44 PM

Trey -

I cannot tell you much my beautiful bride of 40 years and I appreciate you sharing your tremendous insights. We have both read and reread every post you've written! All so valuable to us. My wife was diagnosed about 3 weeks ago with CML and started on Tasigna immediately...WBC was 80k...down already to 13k...59 years young...and doing fine.... She has both the p210 cells and a very few p190...but her oncologist is confident in a good response....we are too...no serious side effects from the meds yet....she also has RA Arthritus and is on Embrel...but doing well...she's been on it since it first came out...1999 I believe.

No blast cells....slightly enlarged spleen....marrow biopsy confirmed Philadelphia....although we are still struggling a bit with understanding all this. We did also meet with the BMT team at Kansas University Cancer Center for a second confirming opinion...terrific Doctors and staff there and at our local center too!

Just wanted to Thank You for being there for all of us and for sharing your wisdom....it means a lot!

My wife teaches a wonderful bunch of middle school children at a local public school....something she's done for almost 3 decades now...and she's determined this isn't going to keep her from that....she's amazing!!!

Thank You!

My Best -

Dave

#7 rcase13

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Posted 06 March 2015 - 09:16 PM

I am jelouse you caught it really early. She should have a very good response. This will be just a bump in the road.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#8 Trey

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Posted 06 March 2015 - 09:40 PM

Dave,

Very kind of you.  Your wife will do well.  She is off to a good start.



#9 Billie Murawski

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Posted 08 March 2015 - 12:17 AM

Hi,

        Don't let my insurance company find out about this, they just sent me a cheque for critical illness insurance. Sometimes their ignorance pays off. :lol:

Yeah! good for you Mr. Tee.



#10 Davetl

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Posted 08 March 2015 - 12:34 AM

I think the early diagnosis is owed to the frequent Arthritus medication required blood tests....we are thankful for that. Makes me think we should all have routine blood tests a bit more often than once every few years.

We meet with the Ocologist next week....should know more then...next bone marrow tests in May...her 2 brothers are being marrow matched, just in case. Although we don't think that will be needed.

Insurance approved the Tasigna for one year....whew....crazy expensive!

Thanks!

Dave

#11 JPD

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Posted 09 March 2015 - 04:38 PM

bump until its pinned


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#12 Davetl

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Posted 10 March 2015 - 08:49 PM

Yep...bump until it's its pinned...

#13 Gail's

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Posted 10 March 2015 - 09:56 PM

I agree that Trey is a wonderful source of info. I've learned a lot from everyone and lots of laughs too!
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

#14 JPD

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Posted 29 March 2015 - 03:01 PM

Bump

 

CAN WE PLEASE FOR THE LOVE OF (insert here) GET THIS PINNED


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#15 SandyG353

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Posted 07 January 2017 - 02:04 PM

Trey, Thank you for your post "Reading for the Newly Diagnosed CML Patient"  The information that you provided certainly will benefit all CML Patients.  My thoughts are that you are a CML Guru. You have an outstanding amount of knowledge that you provide to those of us that have questions and with the recent post, as well as other posts,  which provides a lot of information about CML.

Sandy



#16 tiredblood

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Posted 07 January 2017 - 07:41 PM

I've asked that it/ the blog be pinned, but nothing ever came of it.

#17 shweflen

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Posted 07 January 2017 - 08:43 PM

Trey,  Thank you for all of the information.  I wish I had read your blog, particularly the "Low Blood Counts" section a couple of months ago.  While I was in limbo waiting for pre-approval for Gleevec from my insurance and looking for co-pay assistance, my hematologist prescribed hydrea which I ended up taking for nearly two weeks before high uric acid levels and high creatinine prompted him to tell me to quit taking it.  Now I have gone through a couple of Gleevec interruptions because my neutrophils & platelets have been too low.  I am now on 200 mg Gleevec, down from 400 mg and hoping that things stabilize.  It has been 8 weeks since I first started Gleevec.


10/20/2016 BCR-ABL:ABL = 81.622

01/11/2017 BCR-ABL:ABL =   8.028

04/12/2017 BCR-ABL:ABL =   0.157

07/07/2017 BCR-ABL:ABL =   0.000

10/04/2017 BCR-ABL:ABL =   0.041

11/28/2017 BCR-ABL:ABL =   0.000

 

 


#18 rosegrace

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Posted 09 January 2017 - 04:16 AM

Thank you for this information Trey. It's very thorough and helpful. If only I've read this before I drank hydrea for several months while waiting for my med. No use crying over spilled milk I guess :(



#19 survenant

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Posted 23 January 2017 - 12:09 AM

There is also a small link      

You've just been diagnosed

 

 

But if you are a fast learner fast and wants to see an overview of CML

1 -  Links on CML

2 - Overview of chronic myeloid leukaemia (September 2015) 



#20 BarbaraB

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Posted 27 January 2017 - 04:04 PM

My husband was put on Hydroxyurea 2 weeks ago after diagnosis and allopurinol (for the uric acid prevention)...i met with his oncologist today and quoted Trey's comment about not putting people on Hydrea.     I was almost laughed out of the Oncologist's office.  She said "that is misinformation. 2 weeks of hydrea is not going to cause issues and we cannot leave your husband's WBC count in the 200's ...until you are approved for Sprycel..he needs to stay on it." 

 

how rude.   Thinking i need to search for a new Oncologist. She made me feel like a fool. 


Husband's Diagnosis: 1/11/2017- WBC 211,000.  Hydroxyurea 500 bid & Allopurinol started.

1/16 - BMB- FISH = 95% bcr/abl. 1% blasts.   Sprycel 100 mg added to hydroxyurea

1/27  WBC = 54,000 -- hydroxy stopped.

2/3   WBC = 8

2/9= Hematologic Response !! WBC= 5, platelets= 300, peripheral smear no abnormal cells. Allopurinol stopped.

 

 

 





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