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Newly Diagnosed 37yr F - Looking for newbie feedback

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#1 Guest_rmerikle_*

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Posted 21 July 2014 - 11:04 AM



What should we be doing right now except for being pushed through the system and sitting around waiting for???? Just last week we received confirmation that my wife has CML. We discovered this through our process of trying to figure out why we were having fertility issues. The Dr. actually did the Bone Marrow test on a whim. We just got back her BCR/ABL ratio and it is 55% which from what I am reading this does not seem that high. Her WBC was 40.4 with a standard range of 4.0 - 10.7 K/uL. Again from what I am reading for a person with untreated CML this is a low number as well. I should also mention she is only 37 years old and in other wise good health. Looking back with 20/20 goggles now I guess we did see a couple of symptoms, but I would say they are pretty minor.


With the above snapshot it would seem that she is far from your typical CML case. I guess that is my biggest question since we are currently being bombarded with information overload both going through the process and doing the Dr. Google thing. I think we are fortunate that we live in the Seattle area and have Fred Hutch Cancer right down the street. We are still waiting to go in for our initial consult. From what I am reading and the initial conversations we have had at Group Health I am guessing they will stick her on Gleevec and then we will go from there.


All things considered it seems like there is a lot of hope, but I would be lying if I told you that we were both more than a little scared. Honestly I think my wife (and myself) are still in shock. All I know is I have the best wife in the world and I am lucky to have her. It just so happened about 5 days after diagnosis we celebrated our six year wedding anniversary. I want to do everything in my power to make sure I take good care of her and do anything and everything I can to ensure we live a long and "normal" life.


If possible I would love feedback on the following questions and in particular would love to hear back from anyone that fits my wife's profile...

  1. What should we be doing right now except for being pushed through the system? It seems hard to just sit around and wait.
  2. What metrics/measurements should we be looking at? How do we measure success and failure since she seems to be far from stereotypical. Or is she stereotypical?
  3. Probably way to early to start discussing, but again the reason we discovered this is due to fertility issues. Does anyone have any experience with CML and fertility? The Dr. we are currently talking to does not think he sees a direct link, but from what I am reading I am not 100% certain.

#2 Shara



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Posted 21 July 2014 - 01:14 PM

Well, you first off should relax. I was diagnosed at that same age with about those same counts six years ago. I was put on Gleevec 400 mg first, then after five months brought up to 500 mg, then after three months dropped back down to 400 mg. I obtained my Complete Molecular Response (CMR) after only eight months and have maintained it ever since.  The ultimate goal is CMR (they do not refer to it as Remission because she will have to take medication to maintain to control the disease) which most people do not obtain but they do reach MMR which is Major Molecular Response. 


Each person is different, but I think keeping positive and having alot of  people praying helps greatly.  She will want to try and maintain some sort of normalcy which will be a little different then before CML. The nice thing about this, is it is treatable, and most people are living very long active lives. Alot of stuff on the internet is incorrect so be very careful especially with statitics. They have made great progress with CML.


Some people on this site have had healthy babies but it is very risky. Check with your Dr. I know alot of people had frozen their eggs or sperm prior to starting treatment so they can later have a baby.


They have caught it very early and with early is best. Good luck and I will say a prayer for you guys.

#3 Susan61


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Posted 21 July 2014 - 01:37 PM

Hi:  Glad you joined us, that was a first good move you made.  Do not try to figure everything out at once.  Let your wife get started on the Gleevec, and they will start to do blood tests on a regular basis to see how she is responding.  Do not try to google everything, because you will get information that you might not even need.  We have all done that in the beginning.

    I can only tell you that your wife should do just fine.  I will be Living With CML for 15 years this Dec..  Been on Gleevec since Oct. of 2000, and been PCRU which means Undetected  for 13 years.  You can learn all those stages of testing after she gets started.

   Just ask anything you want.  You will probably see some side effects of the Gleevec in the beginning, but in my case it was never anything I could not handle.  I learned real quick that I needed to eat a full meal before taking my Gleevec to avoid Nausea.  I had to take Nexium for heartburn, and I had some fatigue, foot cramps,  All in All She can live a normal life.

   Your going to one of the best hospitals for her treatment.  So just follow the instructions your doctor gives, and take one day at a time.

   Leukemia is so treatable now than it was years ago.  Especially CML.  They found mine with just a routine blood test, and then a BMB to confirm it.


#4 Trey


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Posted 21 July 2014 - 07:55 PM

First, 95% of CML patients will do well, and will only need a TKI drug (Gleevec, Tasigna, Sprycel, Iclusig, Bosutinib).  Most will live a normal life span.  Most women can have children if otherwise fertile, but not generally recommended while taking a TKI drug.  So the CML should be treated first, then consider future options.  She could chose to store eggs now before starting treatment, but there is also no real evidence to show that harvesting eggs while taking TKI drugs is risky -- just no real data on that.  The CML was not likely the cause of the infertility, but then unlikely things sometime happen.


She was diagnosed early, which is good.  You should read this to understand some treatment goals and testing metrics for success:



Here is some information I put together to help newly diagnosed patients (it also deals with the pregnancy issue):


#5 Tori


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Posted 21 July 2014 - 08:04 PM

Hi - I was diagnosed back in April at age 35. I too was otherwise healthy, so this came as a complete surprise. It was very overwhelming at first, but after digesting the information that the doctors provided and doing some reading on my own, I was thankful to learn CML is fairly easily managed. I started on Tasigna and within a couple weeks my WBC returned to normal (my counts started at 117 k) It is definitely a helpless feeling while you are waiting to begin treatment, but once she starts and begins to see progress, you will both feel much better. Everyone seems to have different side effects, and while mine have been bothersome at times (skin rash, some hair loss), they are manageable in the grand scheme of things and I feel I've been able to resume my new normal (tasigna has a strict eating/dosing schedule, so it's never really out of mind for long). I wish you and your wife all the best.

#6 gerry


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Posted 21 July 2014 - 08:14 PM

I'd look to store my eggs straight off, as it may take a couple of years to get to an area where she can stop treatment to have a go at becoming pregnant and you want your eggs in the best shape. :)

#7 rmerikle



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Posted 22 July 2014 - 01:01 PM

Thank you so much. Yes we are pursung the process of storing eggs. And yes the hurry up and wait is killing me. I love my wife to death and as I tell her the odds are well in her favor that Gleevec or some other form of the drug will get us to where we want to go, but until I see those results I just can't get comfortable. Thank god it should hopefully not take to long to get us some type of results showng progress.

#8 gerry


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Posted 22 July 2014 - 05:56 PM

It is pretty scary and stressful at the beginning. This is a great site to be on to find out information, make sure when you are looking at anything on the intranet you look at current stuff. There is a lot of infomation out there from before they knew what the TKIs were capable of doing.

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