44 replies to this topic

[Trey]

You are nearly at 4.5 log reduction.  -4.5 logs is essentially PCRU at many labs so you are very close to that.  Your lab apparently reports down to .001 which is a 5 log reduction.  When talking numbers at those levels they are all excellent.

[Frogiegirl]

SIR Trey I assume you know how important your opinion is to many of us. ....along with scoobs and others I just thought you might like to hear how much I appreciate you. I'm a mom of two young boys and when I'ma wreck they feel it. ......so it's not just me your calming(and others) it's a domino affect. This forum has most likely saved me. .....a few times:)

[CallMeLucky]

I'm curious what lab you are using and if it is International Scale.  Assuming it is, anything below 0.1% is very, very, long life, good.  Even above that you could live nice long life, but anything below is best for long term odds.  Anything with two zeros after the decimal point is golden, it really doesn't get better than that.  You may get a test that shows "negative" but it's pretty much the same thing you have now.  There is no difference between the last two tests; that's not a plateau, you're at the floor.

Understand that a PCR bounces, it is frustrating, scary, stressful, and all around annoying as hell, but its just the way it is.  I was negative, popped to .04% and dropped back to negative again over three tests, why?  Did my CML suddenly spike and then decide to go away again?  Maybe, or perhaps the lab test through a result within its margin of error.

I was diagnosed 4.5 years ago, I have two boys, they were 6 and 4, I remember thinking I probably wouldn't make it past my youngest's 9th birthday - he turns 9 in three weeks, so barring any busses I am looking forward to watching him blow out the candles.

Over time you will get more used to the bounces, I won't say it necessarily gets easier, but you do get used to it.

[Gail's]

Froggiegirl, the reassurance about your test results is great to hear. Right now, I get your anxiety. This is a scary disease, or as scuba said, chronic condition. Sometimes I find my anxiety is more related to my heart than my mind. I would like you to be able to have a calm heart. My head knows lots about cml and this forum is teaching me lots more. The facts here are very reassuring. I'm learning though, that my heart speaks more with impressions than facts. I would encourage you to do some things your heart enjoys. Spend time with your little boys being completely silly. Breathe outside as spring unfolds. Dream of your coming little baby. I even picture you buying a little pair of socks or some other tiny baby item to remind you that life is good for the most part, and many years of joy await you because someone with a very smart mind figured out how to help us live longer than was ever imagined. Take care.

[PhilB]

"Help!, Help!  I went from four-and-a-bit log to four-and-a-bit log!"

1. The sky will not fall on your head
2. The accuracy of these tests are rather less than you'd get if you tried to measure the length of a football field by asking a three-year-old to pace it out.  Your two results are the same and are both excellent.
3. CML is a slow moving disease and you have a VERY deep response - the odds are excellent that you could go 9 months off drugs without any impact on your blood counts
4. You can call it Billie whatever the gender.

[Billie Murawski]

Oh Lord,

All these years and I am still being teased by my name.  I've been called billy goat,(that was the favorite in grade school),willy.wilhelmina, willy mae,billy joe,billy jean,little billie,bill,bobby,bonnie, thats just what I can remember. I have never forgiven my parents for giving me this name. Yes I was named after my father same spelling, he sent me a postcard once and spelled my name wrong! If I had a nickle for every time someone asked me what my real name was I'd be rich. Of course there's always Mr. Billie too.

[Billie Murawski]

I caught it, Billie! Everyone, say it with me, "Billie, you must be the happiest woman in the world!"  

Pat, Go drink some toast!!!!

[pammartin]

Billie, after the second bottle of wine I stop caring what I am called, or maybe it is after the first bottle. I am the one that cooks, so I am never late for dinner, I am laundry queen, so I have clothes, and I usually shop for groceries. I pick what they have to eat. If they arouse my ire, they might not like dinner. Revenge is sweet.

[Antilogical]

My dear Froggette:  You are stable.  My onc says that he only takes notice if the labs show more than a 1/2 log increase.  Enjoy your stable and deep response.  Think about springtime, chocolate, baseball, or whatever floats your boat.  (My boat floats on dark chocolate.  And red wine.  And Snickers bars.)

[Trey]

Red wine and Snickers -- that is just not logical.

[Marnie]

It sounds better than wine and cheetos.

[Frogiegirl]

Callmelucky the lab is ARUP? I asked my nurse and they did not recently change labs.....dang it! I really appreciate your kind words. ....I feel like such a child sometimes needing reassurance and someone to turn to. I feel like this is the only place I can go to where people understand what I'm feeling. ...and to get slapped back into reality. ...mr.philb.lol. I asked my sister what kind of cancer I have and she said ummmm luekemia. She couldn't even tell me what type. ....it hurt. Gails thank you for your kind words as well.....I find myself daydreaming of kissing those tiny baby feet......gross I know but I know there is one more for our family. Antilogical I could get in on some of that wine and a few snickers bars:)

[Frogiegirl]

Well I just got the call from my doctor who wants to increase my tasigna dose from 450mg to 600mg? Is that a good approach for such a slight increase? Sir Trey???? I was on 300mg and was increased to 450 before my bcr-abl results had even come back because my doc said he suspected I platued......then the results came back and I achieved mmr on just 300mg. I have no idea what to do? ???? Any input? Could I reduce after hitting complete. ...or is that not an option? I'm nervous because last time(right after diagnosis) I was on 600mg of tasigna and my legs hurt so bad I had to walk sideways down stairs. What to do? ?????? Maybe I'll go think it over some wine and snickers?

[scuba]

Trey:

 

Who are the top CML researchers in the U.S. today?

Where are they located.

 

Scubes (with a long overline over the U)

[Trey]

FrogLady:

Increase your dosage -- are you shartin' me????  Dumb, dumb, dumb.

 

And "kissing tiny baby feet" -- Stop dreaming about Scubs.

 

Scubs (very tiny u): There is no such thing.  The confluence of numerous small discoveries by numerous unnamed researchers will lead to a giant AHA moment some day. 

[Billie Murawski]

Hi Frogie Girl, I'm so sorry you're going through this, wish I had some words of wisdom for you. The dx is bad enough but you've been jumping around for a couple years now. Have some wine and snickers then get on the board and vent that's what we're here for. It took me 3 years to reach pcr but I've stayed that way for 4 years now. A phone call on Sat afternoon is bs maybe you could call him back Monday so he doesn't catch you off guard like that and he can explain things to you better and you can tell him what that dosage did to you before. I always say I wish all those docs should have to take a tki for a month of course we would never be able to get ahold of them because they would always be in the bathroom.

[scuba]

FrogLady:

Increase your dosage -- are you shartin' me????  Dumb, dumb, dumb.

 

And "kissing tiny baby feet" -- Stop dreaming about Scubs.

 

Scubs (very tiny u): There is no such thing.  The confluence of numerous small discoveries by numerous unnamed researchers will lead to a giant AHA moment some day. 

 

Trey - my "u" is not tiny. No drugs needed for that either. 

[CallMeLucky]

Your doctor sounds like a moron or at the very least doesn't understand cml testing and treatment protocols.

[Frogiegirl]

Callmelucky can I ask why u think that? I don't know a ton about cml but I think it's just a slight platue and I should stay the coarse on the 450mg and test again in 3 months. ...then if it goes up maybe go to a higher dose? I'm so cofused on what to do aarrrggghhhhh!

[JPD]

600 is the standard dose.  The leg pain will subside.  I wouldnt think the additional 150mg would cause that big a problem, but sometimes the margins for side fx are pretty slim.

 

If you are worried about the numbers, just try and deal with the 600.  Personally, if it were me and the 600 was causing that big of a problem and I had a miniscule PCR # like you do - Id keep on with the 450 until the next test.