7 replies to this topic

[CallMeLucky]

Had my PCR draw to see if the upward trend continues or if it breaks.  If it goes up I get a BMB and likely switch to Tasigna.  Hoping it holds the line for now.  I'm starting to wonder if biologically I am not processing Sprycel effectively.  Perhaps I am grasping at straws but I know you need an acidic environment for Sprycel, which is why you can't take antacids or proton pump inhibitors.  When I started Sprycel I had significant chest pains.  After many evaluations the prevailing theory was that it was GI related.  So I systematically changed my diet, ultimately eliminating all things that cause acid type symptoms, in particular I stopped eating all dairy.  My side effects pretty much went away and soon after my numbers started to go up.  I found it odd that as we increased my dosage my side effects never came back even as we got back up to 100, something we chalked up to me just "getting used to the drug".  For Easter I cheated a little and I ate quite a bit of cheese earlier in the day and I had a rich piece of chocolate cake today.  Tonight I have significant chest pains and a feeling in my chest like I have to cough.  These are the same side effects I had early on.  I know over the next couple of days if I watch what I eat the symptoms will go away.  I'm now starting to wonder could my controlled diet also somehow impact my ability to process the drug?  I know it sounds crazy but does it stand to reason if I don't have side effects maybe the drug isn't working?  I mentioned to Dr, he didn't blow it off he just said there was no test he was aware of with Sprycel to check blood concentration levels so if anything it would just be a theory that we really couldn't prove.  He sad at the end of the day it either works or it doesn't.  I guess if I have to cause myself to have bad side effects for the drug to work that wouldn't be a good scenario anyway. 

So for now I do the waiting game and see what the results look like when they come back.

Hope everyone is doing well

[Susan61]

Hi Lucky:  I will pray for you to see some good results on your PCR test. Like you said you can go on Tasigna if need be.  Amazing at the games we have to play with our bodies to adjust to these medications.  I have had to stay on my Nexium due to the bad reflux from the Gleevec.  At first I had no idea it was from the Gleevec.

Glad you enjoyed your Easter with the cheese and Chocolate Cake.

Susan

[Tedsey]

Keeping fingers crossed for you.  I know what a hard time you have had.  I feel you deserve a break.  Anyway, not to jump on the national bandwagon, but what the heck...have you tried a gluten-free diet?  It might be worth a go for a month or two.

All the best,

Tedsey

[Pin]

Hi Lucky, how long do you have to wait for your results? I've just had my latest draw as well to see where I'm at.

This stuff can really do your head in, thinking about all the things we can do differently, that may or may not have any effect. It's so hard to tell, sometimes I feel like we are these little one person experiments. It's so good that you have had less side effects on the Sprycel, but it's unfair that it feels like the trade off for that is a higher stress level worrying about results. I have no idea what my results will be, I am hoping that I maintain my PCRU, but who knows - I've seen plenty of evidence of upticks from this point, and plenty of evidence of them holding - so I don't know what to expect. I've been having really bad palpitations lately - I'm not sure what from just yet, but I guess that is another thing to be investigated. I guess all I really know is that I'm still here almost 3 years later. I went to a funeral today, for someone who died of cancer. It was another sobering reminder of what I have, and how lucky I am to still be here. I still remember that day, as we all do, and remember feeling like it was the end for me. Some days are so rough, but I know that almost every day I am still glad to be here to feel it.

[August1]

Hi Lucky,

Good luck with the results. I am sure they will be great. In some cases there are things that can be done to balance the level of acid (up or down) in your stomach to improve digestion and TKI uptake. If you're having digestive issues, such as with the dairy, you might discuss with a GI doc or dietitian. They can help you make decisions. Either way, good luck and I hope all goes well!

Bill

[CallMeLucky]

I am very fortunate to have received some good news.  My PCR dropped to 0.0048% IS.  This is right around the limit of detection at 0.00325%.  So I am right around CMR again.  I believe if this test had been run at one of my old labs it would have been negative.

So the cml roller coaster continues. 

Some one said to me "you have to figure out what you are going to do about what goes on in your head.  This disease will be what it will be and this is the way it is with cancer, sometimes you get good results and sometimes you get not so good results."  I will have to work on that.

As for the difference in results at 100mg and why lowering the dose did not seem to work for me, I will likely never know and it doesn't do much good to try and think about why some people do good on low dose and I don't.  My thought process is it has something to do with digestion and TKI absorption, but who knows.  For now things seemed to have course corrected and that helps me to somewhat calm my nerves.

Thank you for thinking of me.

Hope all is well.

[Pin]

Hey Lucky - that's great news, I am glad to hear it!

[August1]

Lucky,

Congratulations! And having no side effects as well. Great news.