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#1 alc999

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Posted 31 January 2015 - 07:58 PM

I'm a 42 year-old female who was just diagnosed with CML this week. My blood work from my annual check up returned a white blood cell count of 220,000. Additional blood work by an oncologist confirmed this count, and he diagnosed me with CML based on the number of M cells and/or blasts (forgive me if I'm getting this wrong, I'm still trying to understand everything). I'm getting the results of additional blood work in the upcoming week, where they're now testing for the ABL-BCR gene mutation. If I have the mutation, I will be starting Gleevec on Thursday.

 

I have no outward symptoms, but I'm told that my spleen is enlarged and my uric acid level is a little high (I'm taking something for that now). I feel fine other than a cold I haven't shaken for a few months, but that's typical for me this time of year and I hadn't really thought twice about it.

 

It sounds from what I've been reading that many folks have a bone marrow biopsy as part of their diagnosis. My oncologist has not mentioned this yet. Is it typical to be diagnosed without one?

 

I'm sure this is the first of what will be many questions. I'm so glad I found the forum!

 

Alissa


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#2 Trey

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Posted 31 January 2015 - 08:19 PM

Welcome to our group.  You are among friends.

 

A bone marrow biopsy (BMB) is important for proper diagnosis.  A few Oncs will skip it, but the BMB provides information that no other test can provide.  For that reason it should be done at diagnosis.  A diagnosis can still be made based on FISH and PCR, but they lack the details.  A BMB is a matter of proper procedure and is a required test per National Comprehensive Cancer Network Guidelines which physicians should use.

http://www.nccn.org/.../cml/index.html

 

You may want to read this information for newly diagnosed CML patients:

http://community.lls...+diagnosed +cml



#3 rcase13

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Posted 31 January 2015 - 08:31 PM

It is interesting how procedures differ from one OnC facility to the next. I was diagnosed back in September and was all set to start Tasigna. My insurance company said no until the CML was "officially" diagnosed via BMB. I ended up staying in the hospital for two extra days waiting on the result.

Welcome and good luck! You have come to the right place. Your in good hands now. I just hope you have a good sense of humor. There are some crazy people in here!

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!


#4 pammartin

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Posted 31 January 2015 - 09:12 PM

Welcome, take a deep breath, ask questions, vent, cry, or whatever you feel like, there is always someone checking in to offer support. The understanding of this diagnosis does not come easy, but it does happen. I still do not understand half of what I hear at my appointments, but there is always someone here who explains it in simple terms. One of the best parts of joining this group is, no matter how determined I am to be miserable someone always posts something that makes me laugh. Take one day at a time or even one hour at a time. When I first found this group I was down to one minute at a time and although I drift away I always come back. No one understands like this group of people. As mentioned above, some might be a bit crazy but we are friends.
Pam

#5 alc999

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Posted 01 February 2015 - 10:34 AM

Thanks so much for the welcome! A little crazy is always good...especially when dealing with something serious.  ;)

 

At this week's appointment, I will definitely talk to my doctor about a bone marrow biopsy. I know he has many leukemia patients, but I'm not sure if that's his specialty or not. For now, I just went where my general practitioner sent me since she got me in the day after my blood test results. I live about an 1 1/2 hour drive from the Mayo Clinic in Phoenix though, so I've been thinking once I get these results and started on Gleevec (if I do), I'll go there for a 2nd opinion.


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#6 alc999

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Posted 01 February 2015 - 10:38 AM

And thanks Trey for the links!


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#7 soundoff

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Posted 01 February 2015 - 11:20 AM

Hi alc999,

A BMB is standard for CML at diagnosis.
I had 2 but both were a dry tap...
Very painful procedure with no results.
I never allowed them to do another one.
I have PCR and FISH test instead. They can see the 9-22 translocation with both tests. Choice is yours either a very painful procedure that could result in a failed test or a simple blood draw. I wish someone would have explained this to me before the multiple procedures.

Thanks,
soundoff

#8 chriskuo

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Posted 01 February 2015 - 12:30 PM

Mr. Tee,

Have you been checked for pleural effusion. It is a common side effect of Sprycel and could be causing your shortness of breath.

#9 Gail's

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Posted 01 February 2015 - 06:05 PM

Welcome to the cml club. I am also a newly diagnosed member. I had my first BMB 4 days ago. It wasn't a cake walk and it helped to squeeze a family members hand. I've been sore and some bruising since. I used Ativan before the procedure and used ibuprofen and 1 tablet of Vicodin the first day but haven't needed anything else since. I could have gone to work in 2 days but am not scheduled to work until next week so I didn't have to.

I have found great information and comfort from this site and know you will too! Take care.
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

#10 Billie Murawski

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Posted 02 February 2015 - 01:02 AM

It is interesting how procedures differ from one OnC facility to the next. I was diagnosed back in September and was all set to start Tasigna. My insurance company said no until the CML was "officially" diagnosed via BMB. I ended up staying in the hospital for two extra days waiting on the result.

Welcome and good luck! You have come to the right place. Your in good hands now. I just hope you have a good sense of humor. There are some crazy people in here!

rc,  Are you referring to  us? :wub:

 

Welcome, take a deep breath, ask questions, vent, cry, or whatever you feel like, there is always someone checking in to offer support. The understanding of this diagnosis does not come easy, but it does happen. I still do not understand half of what I hear at my appointments, but there is always someone here who explains it in simple terms. One of the best parts of joining this group is, no matter how determined I am to be miserable someone always posts something that makes me laugh. Take one day at a time or even one hour at a time. When I first found this group I was down to one minute at a time and although I drift away I always come back. No one understands like this group of people. As mentioned above, some might be a bit crazy but we are friends.
Pam

Boy talk about the pot calling the kettle black, none of us crazy people" grew horns.



#11 Trey

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Posted 02 February 2015 - 10:13 AM

Tee,

The question relating to breathing is about fluid build-up (effusion) which can occur in several places.  Sprycel is the most likely drug to cause this.  Around the lungs is understood by most here, but fluid can also build up around the diaphragm area near the stomach.  This can cause both pain and difficulty with breathing, although not as noticeable as fluid around the lungs.  It also shows up as weight gain, which you mentioned.   So maybe you should ask your doc about this issue.



#12 Gail's

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Posted 02 February 2015 - 01:24 PM

Hi alc999,
A BMB is standard for CML at diagnosis.
I had 2 but both were a dry tap...
Very painful procedure with no results.
I never allowed them to do another one.
I have PCR and FISH test instead. They can see the 9-22 translocation with both tests. Choice is yours either a very painful procedure that could result in a failed test or a simple blood draw. I wish someone would have explained this to me before the multiple procedures.
Thanks,
soundoff


I'm sorry your procedure was so painful. Mine was also hard because the bone marrow they did get clotted so quickly they couldn't use it then when they attempted to get more it was dry. So instead of giving up they took two bone samples and I got my results today confirming CML. Although it was more complicated and took longer to do the BMB than I expected, I'm grateful they did it for the more detailed analysis it provided. Especially as far as staging whether I was in chronic or acute phase. If you choose to do another one, ask for them to at least run tests on the actual bone samples if they're not able to get the marrow.
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

#13 alc999

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Posted 12 February 2015 - 12:37 PM

So I've been on Gleevec (400 mg) for a week now, and my WBC has already dropped from 220K to 120K. I'm assuming this is a quick response?!

 

The first 4-5 days on Gleevec I was feeling nauseous and tired, but I've definitely been feeling better the past couple of days.

 

I'm feeling hopeful...and looking forward to seeing another doctor for a 2nd opinion in a month. My current doctor (who doesn't see a need for a BMB), was ready to not see me again for a couple of weeks! After only one WBC on Gleevec! I told him that I wanted to be monitored weekly for at least a while, and he agreed. But I don't like having to tell him what I think should be done.


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#14 chriskuo

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Posted 12 February 2015 - 01:16 PM

During initial treatment, you need to have weekly WBC and CMP blood tests. There is not a need to see the doctor each week - unless the blood tests indicate a problem.

#15 alc999

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Posted 12 February 2015 - 01:57 PM

He wasn't going to do weekly blood tests, which I thought was wrong. I insisted on it and now we are.


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#16 ------

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Posted 14 February 2015 - 03:10 PM

During my BMB they had to try four times because they kept coming up dry. Hurt so badly they hit my static nerve so it took me longer to heal from it. I am so not looking forward to ever having it done again but I will for my sake.

I got out if the hospital on a Thursday had to see the dr on Friday, then in Monday then on Thursday and once a week since then. I was diagnosed January 5 this year 50 years old. I like my onc.

Prayers for you and your healing

#17 Billie Murawski

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Posted 15 February 2015 - 01:22 AM

Hi ALC,

Welcome to the group. I agree with you about getting a second opinion. You should be closely monitored for the first few months, and you shouldn't have to ask your onc for weekly blood tests. All docs are different and have their own way of doing things and I'm sure he's a good doc, but for your own peace of mind you should get a second opinion. I had a bmb the day of my dx. I really didn't care for my first onc I got another one 3 weeks later and I really like him and trust him.That was over 7 years ago. Our disease is very controllable but just the fact that we have it is scary and we need a doctor that will make us feel safe, and reassure us that everything is under control. Good Luck                        Billie



#18 Darlene_Jack

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Posted 17 February 2015 - 09:29 PM

Welcome ALC. I'm fairly new here also. I was diagnosed in aug 2013. I'm 43. I was on sprycel. Developed boarder line pulmonary hypertension. I was at 0% PCR. Off of Sprycel for 4 months n no longer at 0%. I now have to start bosutinib on Thursday. Your in the right place for sure. The people in here we great. Whenever I need to talk or ask a question the people here are ready and waiting to listen n respond. It's nice not to feel alone. Take care
One breath at a time

Darlene jack...




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