Hi Peg and thank you. As for the Prilosec, all of my doctors and I have discussed it and feel that the benefits of me continuing to take it outweigh the risk. I don't take the prilosec with the TKIs, there's at least a couple of hours in between. Given my health history, it's an unfortunate necessity. I agree with you and have been battling my doctors since March regarding the whole "minimal effective dosing" issue. I see no need to take the maximum dose if the minimum is doing what it needs to be doing. At this point of my life, it's quality over quantity and if I can't actually live and enjoy my life, I really don't see much point. Being sick and living in the shadows isn't really my way. Suzanne
On Monday, November 25, 2013 2:31:42 PM UTC-5, peg wrote: > Hi Suzanne, > > Like you I have been on Gleevec (8 mos), Sprycel (3 yrs) and have just > recently switched to a low dose Tasigna (200mg once daily). When on > Sprycel I had esophageal spasms, where what I swallowed would not go > down. This may be similar to what you are experiencing. I do use liquid > Donnatal for this and other stomach problems, but I use it sparingly as it > can inhibit the metabolism of Tasigna! There is not much point in taking a > TKI, and suffering the side effects, if you take another drug for the side > effects that renders the TKI useless! Which brings up a concern...your > Prilosec. While I will use that only very occasionally, acid inhibitors > like prilosec are contraindicated with TKI drugs as they impair the > absorbtion. There is mounting evidence that too little stomach acid will > result in too little absorbtion of the TKI's. > > As far as your oncologist wanting to increase your dose to the standard > recommended dose, there is also growing evidence that dosage can be > tailored to the actual need for each patient, but because CML is absolutely > fatal without treatment and too low a dose can sometime lead to resistance, > many oncologists are afraid to reduce the dose below the standard in the > absence of absolute medical necessity. However, were medical necessity has > prevailed many patients are being maintained fine on lower than standard > dosing, myself included. > > Since you are already on a low dose, you might want to ask your oncologist > to wait through at least 2 or 3 PCR's to see what your numbers are doing. > They recommend at least 2 PCR's before making any changes as PCR's can > fluctuate, so you would not ever want to make a change based on any one, > but rather a trend of two or three, and they must be from the same lab!!! > You cannot compare a PCR from one lab to that of another. It is like > apples and oranges. However, if your numbers are good, there may be no > need to put you on a higher dose. Just one school of thought...you may > find others who disagree. I have just had such extreme side effects on > TKI's that I have to hope and pray that low dosing will work. I PCR every > month to monitor this. > > Like you I also have a complicated diagnosis, and balancing drugs and side > effects is at the least challenging and sometimes depressing. I have had > Multiple Sclerosis for 25 years, was diagnosed with CML and Melanoma at > almost exactly the same time, almost four years ago, and this year have > been diagnosed with an unrelated abdominal tumor and possible lung tumors. > Through all the years of my MS I barely took any medication, but now pop > handfuls of pills several times a day...very disheartening. I encourage > you to find the lowest dose of everything that works for you and try to > find a way to make it all work for your life. Some times for me this has > taken a bit of life modification. I know first hand how tired and worn out > you are...I get there too. Try to take one day at a time...and when that > doesn't work, one hour at a time. Know that you are not in this alone. > > Fight on, > Peg > > > > > -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out.
