Dear fellow warriors, Happy Thanksgiving!
There have been so many posts recently of people struggling, really struggling with pain, and side effects from meds for CML, and other non related illnesses, etc...I have also witnessed such an outpouring of humaninty, of people reaching out with questions and fears, and others responding with care and compassion, sharing their experiences and trying to help. While each of our experiences is going to be different, uniquely ours, the sharing of our collectivie experiences seems to truly have an impact. As Thanksgiving is upon us in our country, I just wanted to say I am so "thankful" for the outreach, wisdom, love, good humor, and genuiness circulated by this group. It's a true gift. Happy Thanksgiving to all of you, and to those in other countries who are reading who may not be celebrating this particular holiday,..we are blessed to have you as part of our community as well..so happiness and joy to you too! Beth -----Original Message----- From: ICANDOALLTTC <icandoall...@aol.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Tue, Nov 26, 2013 3:58 pm Subject: Re: [CMLHope] Re: Tasigna and stomach issues proton pump inhib Hi all and just wanted to say a few words about Prilosec. The Sprycel leaflet does say specifically do not take proton pump inhibitors. I had to fight with my doctors while in the hospital as they were giving me this twice a day and the meds I was on for CML were not working. I finally told the nurse when she brought them in that I would not be taking them anymore and showed her the leaflet. And I had no indigestion or anything just the pain in my right side that I always had. We are all different so maybe some people can take them without any side effects. Happy Thanksgiving Everyone, Jeanie<3 In a message dated 11/25/2013 3:58:03 P.M. Eastern Standard Time, suzho...@gmail.com writes: 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. 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