17 replies to this topic

[CallMeLucky]

Just got my latest PCR result.  Now at .0034% (IS).  4+ log reduction.

This is a nice 1 log drop from last month's PCR.

For history - I was on Gleevec 400mg for 2.5 years.  Was CMR for over a year and switched to Sprycel due to side effects.  Could not tolerate 100mg, dropped to 50mg and lost CMR (still maintained MMR, but appeared to be trending up).  Went to 70mg and trend is now going back down.  Was at .0239% (IS) when I went up to 70mg, 1 month later was .0192% (IS) and now another month later and I am at .0034% (IS).  I know at this level the numbers are so low and close they are really not too different but I certainly appreciate being at a 4+ log reduction.  Hopefully it will go negative again, but considering that I am tolerating the 70mg fairly well if I stayed at this level I think I would be content.  I want to be negative, but I want to feel good too.

Hope everyone is doing well........

[Marnie]

NIce results. . .congrats!

[Susan61]

I am so happy for you.  This is great news, and you sure deserve it.  Like we say everyone needs a different TKI and different doses to get where they want to be.  I hope you feel well on the 70mg, and can continue to take it.

[alexamay09]

Lucky that is fantastic! I am really pleased for you. Xx

Alex

[nathaliece]

Wonderful news!  Congratulations!

[Ray99]

Lucky,

    It's great to hear that your PCR started dropping again.  You have been through a lot of anxiety since switching to Sprycel.  I think you should be in peace as long as your PCR stay at 4 log reduction.  Don't worry too much about slightly positive vs. negative.

  Congratulation!!

[CallMeLucky]

Thanks all I appreciate it.  I was pleased with the results but also very surprised how quickly they came back.  I had my blood drawn Monday afternoon around 3:00 PM, I got my results Wed at noon!  Now that is how it should be, none of this two weeks nonsense while it sits on Dr's desks waiting for someone to look at it.  Liking the new lab and really liking my Dr who gets that his patients think about this stuff after they leave his office.  This is the second time he has gone out of his way to get back to me quickly, he's a really good guy.

[simone4]

Lucky,I am so happy for you.  You are tolerating the 70mg. of S, plus your results

make it worth it.

Enjoy the rest of the summer with your kids.  The stress is over.

Simone

[Rissa]

That's great news Lucky! 

[TeddyB]

Great news Lucky

That sure was fast (PCR results), 6 weeks ago they forgot to take my 15month pcr test, 16 days ago i go to take another and i am still waiting for the results. I have called 2 times, but no one has called me back, even though they said they would.

Teddy

[CallMeLucky]

Funny you mention about them forgetting.  When I sat down in the chair I eye balled the tubes and knew they didn't have the right one for PCR (lavender top).  I also know that the lab they are using now requires them to fill out a special form and place the tube in a sealed bag with the form.  I didn't see that either.  I asked the phlebotomist if she had my special form and she just looked at me and said hold on.  Came back 5 minutes later with bag, form, and lavender topped tube.  I always ask them what they are drawing for and make sure they have the correct test orders.  In the past I would ask after seeing the Dr which sometimes would result in an extra stick, so I got in the habit of asking up front.  If there are any doubts, I send them to ask.  Sometimes I think I know too much about my illness, but sometimes that pays off.....

[LivingWellWithCML]

Great news, Lucky!

[hannibellemo]

Wonderful news, Lucky, congratulations!

Pat

[starlago]

Lucky, what are the side effects you were dealing with at 100mg sprycel and are dealing with at 70mg?  How long were you off the meds during the switches?

Thx for your help.

[Pin]

That's great news Lucky Glad you got your results back fast too!

[CallMeLucky]

The primary side effects I have dealt with are pain in my chest.  I feel pressure that was quite intense at 100.  At 70 it is there but not that bad.  The question has been if it is pulmonary cardiac or GI.  More and more they have been leaning towards GI and the belief that it is not anything serious, just a bit uncomfortable. 

I really haven't been off meds that much.  I was on Gleevec for 2+ years, then I switched to Sprycel (I took 10 days off between switch) I then started 100 Sprycel after a few weeks I stopped for a week after visit to ER for chest pain.  I went back on for a few days then stopped again for a few days ( I was actually doing 100mg every other day) more chest pain.  I then started on 50mg, felt good.  I did that for a month, then went to 60 for a month, then 70 for a month started to feel uncomfortable again and went back to 50 for two months, I then lost PCRu so I went back to 70 and have been for about 2 months so far.  PCR is dropping again so it seems like 70 is a dose that works so far.  If I get negative again and hold for 2 PCR I may try to go back to 60 and see if I can make that work, otherwise I will try to stay at 70 for as long as it works.

[starlago]

Thx for the information, Lucky...glad things are stabilized.