11 replies to this topic

[cedespres]

Hello,

    On 9/16 I posted a happy topic that I had reached MMR. My number was 0.085 and as far as I know the .0 was what made it so good. That day they took more blood and sent it out for another bcr/abl test. Today I went to my onc and got the result it was 0.225 and he is once again talking about increasing me back up to 100mg of Sprycel. The last time I was on 100mg of Sprycel I ended up in the hospital 3 times for a total of 9 days due to PE and CHF. I went through lasix, bumex, and now 60mg per day of torsemide to keep the fluid in my chest in check.

    After those 3 hospital stays he had me taking 50mg and 70mg of sprycel every other day but had told me to just start taking the 70s. I being a smart a** , decided to keep taking the 50/70 as I was feeling very good. They sent out another blood sample for bcr/abl from my blood draw today and I will see him again in 1 month to see where we are then (or really where we are now as blood was drawn today).

    Just as I had felt so great after getting the MMR result now I feel totally depressed about this new result. How bad is a jump from 0.085 to 0.225? Should I expect the next one to be even higher? I can't help but think I screwed things up by not doing what he told me to do and instead kept taking the 50/70 and now must pay for my mistake.

    I am sorry for venting here but lots of things have gone wrong recently. My mother died at the end of last week and we buried her on Saturday. She was 81 but I was still not really prepared to lose her. My wifes doctors just found a very small islet tumor on her pancreas so we went up to  Brigham and Womens hospital in Boston ( where I had my cardiac by-pass done). The specialist said the tumor is only 7mm in size so we will watch it and if it grows to from 1 to 2 cm we will have to consider a surgical intervention. He did say he does not think it is cancerous though.

Thank you all for being here.

Ed

[chriskuo]

Have you and your doctor considered Tasigna or bosutinib?

 

With the amount of fluid buildup you have with Sprycel, I would think it would be worth considering other drugs.

[scuba]

Ed,

 

Do you know if the two tests were completed at the same lab? Assuming they were - your results:

0.085 and 0.225 are within the error range of the PCR test. In other words, two tests done on the same blood sample could easily yield this range of values.  PCR testing has a precision within one log. Both of your values are within that range.

 

Having said that - no one likes seeing their numbers jump up especially when the zero goes away after the decimal point. What you need to see is if this is a trend and the next test will be more definitive. What is of great concern is the PE that you risk with increased dose.

 

As many on this forum know, I come at CML (treatment) from a different point of view. PM me and I'll share that with you.

I was able to achieve PCRU on only 20mg Sprycel. I never experienced side effects I could feel. But 20 mg sprycel only began to drop my PCR when I added other things.

[Trey]

Not much difference.  If you take the 70mg daily the PCR could drift lower over time, even though it might not fall quickly.

[kat73]

"I can't help but think I screwed things up . . . and now must pay for my mistake."  Very understandable human reaction.  But wrong!  Do not waste a moment beating yourself up - you have such a great deal of heavy stuff you're wading through right now that you must preserve all the energy and focus you can.  Hold on.  Just hold on.  Don't make your mind up about any direction or supposed inevitability right now.  There is just as good a chance that things will start to come right as not.  My numbers sometimes bounced that much - and my spirits would go up and down right with them, so I know what you're saying.  Time will tell you the truth, and you will have options.  The waiting is so hard, though, I know.  Let us know. 

[Melanie]

Hang in there! So sorry you're going through so much! We've all learned to love and hate our lab results. In the big picture, they're still good results and hopefully when your next one comes back, you'll see it down again. I know it's hard, but as Kat says...hold on. Sometimes this roller coaster we're on requires us to "hold on" instead of fying along with our hands in the air. With this next report, may your hands be up and you screaming with joy!

[cedespres]

Have you and your doctor considered Tasigna or bosutinib?

 

With the amount of fluid buildup you have with Sprycel, I would think it would be worth considering other drugs.

Hello chriskuo,

Thank for your input. My onc won't try Tasigna because I am a diabetic and it is contraindicated in diabetics. I will talk to him about bosutinib. Again , thank you for your help. Ed

[cedespres]

Not much difference.  If you take the 70mg daily the PCR could drift lower over time, even though it might not fall quickly.

Hi Trey,

I read all of your posts, it was your blog that brought me to this forum when I was dxd. Based on your experience and knowledge  do you think I can avoid the 100mg of sprycel and let my numbers move slowly down with 70. My onc keeps talking about making benchmarks in the numbers so that I don't end up with a relapse.

Thanks again,

Ed

[cedespres]

"I can't help but think I screwed things up . . . and now must pay for my mistake."  Very understandable human reaction.  But wrong!  Do not waste a moment beating yourself up - you have such a great deal of heavy stuff you're wading through right now that you must preserve all the energy and focus you can.  Hold on.  Just hold on.  Don't make your mind up about any direction or supposed inevitability right now.  There is just as good a chance that things will start to come right as not.  My numbers sometimes bounced that much - and my spirits would go up and down right with them, so I know what you're saying.  Time will tell you the truth, and you will have options.  The waiting is so hard, though, I know.  Let us know. 

Hi kat73,

Thank you for your kind words. I was a bit depressed yesterday and you have helped me a lot.

Thanks,

Ed

[cedespres]

Hang in there! So sorry you're going through so much! We've all learned to love and hate our lab results. In the big picture, they're still good results and hopefully when your next one comes back, you'll see it down again. I know it's hard, but as Kat says...hold on. Sometimes this roller coaster we're on requires us to "hold on" instead of fying along with our hands in the air. With this next report, may your hands be up and you screaming with joy!

Hi mbrown2010,

I had not thought of it as a  "roller coaster", but the idea brought a smile to my face just thinking about it that way.

Again, thank you,

Ed

[Trey]

Ed,

Likely so. 

[tammielee]

I agree with Trey take the 70 daily. Your numbers should go down.