11 replies to this topic

[Lisa Lisa]

Well hey there, here I am still in shock. Left my job after 25 years this summer, turned 50 in December and all set to enjoy phase Ii of my life with my retired husband. Take a family vacation over New Years, yep, livin the life. Then WHAM, get the rug pulled out from under my feet.
I thought I was just run down after the vacation, got a bad cold and what I thought was a 6 week sinus infection. Could not shake the sickness, the feeling of somethin else brewin set in. When my WBC, platelets and basos came back high my hematologist said, "just one more test". Confirmed CML, BCR/ABL via blood testing.
I am new to the CML testing and the levels and the words. But I have seen two drs. In NYC (one for second opinion). both want to put me on the Sprycel. I ask why, because I am a believer in "slow and steady wins the race". Why use Sprycel when Gleevec is proven to work for so many for long periods of time. The Sprycel is, for sure, what they want to knock it out faster, but as of yet there is no long term knowledge of the toxicity or side effects (I mean for your heart) on this med. yet. And when I brought up that my Dad died at age 57 of a heart attack both doctors still recommend the Sprycel over the Gleevec.
I have the Sprycel sitting here for three days now and I plan to call the dr. tomorrow morning and ask my PCR number. I got a positive on the test results but not a quantitative number. Also, I did not have a BMB by either doctor but they did do the FISH. I have not had an EKG or any heart testing. Isnt this routine before Sprycel?
Somehow I thought seeing a doctor at a great cancer hospital in NYC would take the guesswork out of this new chapter in my life but now I am more confused than ever.
Thank you for listening. And I am grateful for finding this site.

[Marnie]

Hi, Lisa. . .

 

Welcome to the club.  Sorry that you had to become a member of our club, but you've found a great spot to get information and support.  There are a lot of wonderful people here.

 

I've been on Gleevec and Sprycel, and my results are a lot better on Sprycel, though I have had a couple of pleural effusions, which is a side effect to watch out for.  Not everyone has difficulty with fluid buildup around the lungs, but some do.

 

I'm about your age and just ready to retire after 29 years of teaching.  Looking forward to phase 2 with great excitement.  CML has not changed my active lifestyle at all.  I'm sure that you will find that after you settle in to having cml, your life will go on as planned.

 

Marnie

[Antilogical]

The care for medical conditions varies a lot between doctors, doesn't it?  My neighbor and I both have CML.  We are both seen in the same hospital system, but we have different doctors.  My doctor sent me for a BMB at diagnosis and at the 1-year mark.  My neighbor has never had a BMB - his doctor relies solely on the PCR test.  We are both on Gleevec - I guess both of our docs are of the "slow and steady" mindset. 

 

BTW - When I was diagnosed several years ago, it was because of a routine blood test.  I had suddenly developed severe anemia that could not be explained, and several months later, the red cells went back to normal and the white cells spiked.  I felt GREAT, however.  Now I'm grumpy from the side effects of the drug, but I'm really happy to be alive!

[Lisa Lisa]

Hi Antilogical,
I too am of the slow and steady mindset and would rather be starting on Gleevec. I was anemic for 10+ years and have received iron infusions (venofer) in the past for extremely low iron counts. July of 2014 I had my blood tests and for the first time ever, had no signs of anemia. Go figure. The winds of change.
Do you also get anemic on Gleevec? Just wondering.

[Antilogical]

My counts while on Gleevec have dropped to just below the normal range, but they've been steady.  The doc is satisfied.  As long as I'm not neutropenic and he lets me eat salads in public places, I'm satisfied too.

[Trey]

L&L,

There is no single answer regarding which TKI drug to start with.  Your Oncs are not wrong, and neither are you.  Overall I would not hesitate to take the Sprycel. 

 

The biggest issue is taking too much drug and getting into a low blood count situation.  This seems especially true for women from what I have noticed, and more true of Sprycel than Gleevec.  We are all different so no firm rules about that.  So I would suggest no more than 70mg, but preferably 50mg per day.

 

A heart exam (QT Interval) would be advisable but not a requirement. 

 

Here is some reading on CML testing:

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

[Lisa Lisa]

Trey,
Thank you for responding. I was given the 100 mg Sprycel. I weigh 100 lbs and the past month my WBC has been cycling around 19, then 16 and now 14. All other counts not terribly high except for basos at 8. Im starting the Sprycel tomorrow and I feel so scared. I feel it is a high dose but I am not a dr. Its a bit maddening that this pill that can be saving my life is sitting in a box and Im avoiding it. Perhaps its a normal reaction. Perhaps I need a drink that I cant have!

Lisa Lisa

[Trey]

Just make sure you get weekly CBCs to monitor blood counts.  You should not view the TKI drug so negatively.  It is not "harmful", just more potent (not the precise term) in some people than others.  I would be ready to discuss lowering the dosage with the Onc if needed.  You are starting with such a low WBC for diagnosis that you will not need much drug to lower the counts to normal. 

 

So overall I would encourage you to change your view of the drug from fearful to "hopeful but cautious" about side effects, and watch carefully for any signs of tanking blood counts and pleural effusion.  100mg is pretty standard starting dosage, so your Onc is not doing something out of the norm.  But with your small frame and relatively low starting WBC you could see tanking blood counts.  But these things are not so easily predicted, so I would just wait and see, but require and demand weekly CBCs.

 

You should do very well.  The drugs are good tools for our use.  I don't call them friends, just tools.  And they can require a little adjusting sometimes.

[Billie Murawski]

Hi Lisa,

  Welcome to our club. If you read a lot of our former posts you'll get so much information, we have a few new members also who have just started their meds, some have side-effects and some don't everybody is different and sometimes an annoying s-e will show up a couple years after starting treatment. I always say that everything is not tki related when I was first dx I kept looking for symptoms I think I was waiting for them At first dx it really messes up your mind.

If you read Treys blog you'll find out everything there is to know about cml it will really help you get over so many fears.

I started on Gleevac 400 for 3 years then I went to Sprycel 100mg for about a year then 50mg for a couple years and now I take 20mg it's been almost 2 years on that dose and I remain undetectable Gleevac gave me a lot of gi issues I'm happy to be on Sprycel. I'm anemic also and I can't remember how many rounds of iron infusions I've had so keep reminding them to check your rbc count.

We'll be here to help you take care Billie

[Lisa Lisa]

Thank you all for welcoming me. Although I would rather be joining a different kind of club, I am thankful and grateful for the kind words and the warm welcome from you guys. I have been reading many old and newer posts. It is helping to understand some of the CML terms I find a bit baffling.
It also helps with the anxiety. Thanks again.

Lisa

[Gail's]

Welcome. You've found a good place to help as you adjust to the disease and treatment. Just a word of caution. Sometimes a weird sense of humor pops up so be prepared not to take everything seriously. Take care.

[Billie Murawski]

Lisa L,

 I have no idea what Gail is talking about,she does have a tendency to ramble we humor her! Poor Gail