6 replies to this topic

[CallMeLucky]

Just got a PCR result back, I swear it never gets any easier, thankfully another negative.  I was a little concerned because we had introduced Protonix into the mix for about a month and a half and I was always nervous it was blocking some of the drug based on the warnings and the fact I was at lower dose.  Thankfully it does not appear to have caused any issue and I'm no longer taking it since it didn't seem to help with any issues.  I'm back down to 50/mg daily of Sprycel after trying to go to 70 and while it was "tolerable" I felt quite lousy.  Even back at 50, not great but I had a virus last two weeks and that seemed to knock a lot out of me, now that is gone I am not feeling as bad, still tired and muscle aches.  What is with the damn muscle aches?  Even at 50mg and I am still in constant muscle pain.  I guess we'll see how it goes, I'm on monthly PCR testing as a compromise to go to lower dosage.  I think my doctor fully agrees that lower dosage makes sense for me, but still wants to cover in case something goes wrong.  This way if anything starts to change we can adjust treatment plan.  The nurse laughed on the phone as she read the results, she asked me "we're you actually just holding your breath?" I replied "every single time".  So we'll see what happens next month based on a full month at 50mg, not too worried since I was off for a few weeks and bouncing all over with dosage over last few months but you never know when this thing can turn on you.  Hopefully this will hold at 50mg for a good 12-18 months and then if still holding maybe I can try dropping to 20mg.  Who knows if I can hold that for a year or so maybe I can even attempt to stop.  I guess we'll see.  In mean time I started up Curcumin again, not so much for CML but hoping the anti-inflammatory effect can help with the muscle pain.

Hope all are doing as well as we can.......Happy Holidays......

[rct]

Good to hear!

Well, not really good but good as this stuff can be good.

You know.

rct

[CallMeLucky]

Thanks RCT - we take what we can get

I'm certainly grateful.

Hope all is well and the Mrs is feeling well.

[scuba]

You're probably cured ... or if there is a few lingering CML stem cells around, they're on their way out. You reached PCRU pretty quickly - managed to go off meds for a while during the switch, had low dose and still stayed PCRU. I think your strategy of lowering dose consistently down to zero as a goal is a good one. The real "hold your breath" moment will be when you

Keep in mind - doing monthly testing while on 50mg is overkill. Dr. Cortes still has me at 3 month PCR testing and I am not PCRU and I am on 20mg.

He told me that CML is a slow disease in chronic phase. If one were positive PCR and stopped taking a TKI it would take months before there would be a one or two log increase and then he told me many just stay the same (low level PCR). But like bridge building - better to over engineer by ten times, then say - 5 times. I know I am his guinea pig on 20mg (because my blood counts have normalized and he still wants to keep me at 20 even though my PCR went up (in the noise)).

[acb]

Thanks for the info on the Protonix. Surprisingly, I have been having no trouble at all with reflux/GERD/chest/heart pain since you last posted about having it too. Of course, I probably just jinxed myself.

I have probably asked this before, but have you had your potassium levels checked? Since I've been on Sprycel, my potassium runs low. If I forget or don't take my potassium for a few days in a row, then I notice increased muscle pain. Also, when I was on a short break and then had my dose lowered to 70 mg (I so wish my doctor would let me go to 50 mg), I had increased muscle pain for about a week or more each time.

Also, I have been sick and had a lot more infections (sinus, strep, upper respiratory, etc.) since being on Sprycel. I know there may not be a correlation, but there seems to be one for me. I think Trey has mentioned before that it is probably more from increased fluid than being more susceptible to catching things, which I believe to be true too. Almost all my infections seem to be "fluid" related.

I was supposed to go next week for my next PCR and onc visit. They called me to reschedule and wanted me to come on Friday at 4:30 p.m. Yeah, no thanks! Don't want my blood languishing over the weekend! So had to push it off another week.

[Tedsey]

Glad to hear your response has been so good!  I would give almost anything to stop taking 100mg.  Sorry you have had such a tough time with the Sprycel.  I hope things change for the better soon.

Teds

[Poihths]

I know it's very, very tough to hold your emotions in check. However, it really does help to be as data-driven as you can. Even though I know my own bone marrow is trying to kill me, I keep my nose to the grindstone of what the solid facts are telling me: my test numbers, what my medical program is and why it is that way. The plain fact is that life may be short or life may be long for any of us for any of hundreds of reasons; the point is to make the most of it while we can.

Trying to relate everything that happens to your health to either your cancer or your treatments is a huge trap that is very easy to fall into; I fall into it constantly. People who don't have cancer and aren't on any medications go through winters where it seems as though they just have one cold or flu after another, and other winters where they sail through scot-free. There's all sorts of health-related things that just happen to work out the way they do, regardless of what conditions any particular person is dealing with.