Never any offense taken, I was so happy you brought it up!!!! Everybody tries as hard as they can here to be useful to one another along this journey. As we are all "hungry" for information and try to do our best to share what we know has helped us in the hopes it might help another...of course we also need to welcome each other's feedback on what might not work, or if someone has posted by accident, something that could cause harm to anyone, to bring it up quickly. So thank you. Feedback encouraged and always welcome!
Picturing you with your grandchildren, baking cookies for them, the smells, the smiles..warms my heart for you Millie....have a wonderful holiday. B -----Original Message----- From: C.M. Houtz <[email protected]> To: cmlhope <[email protected]> Sent: Fri, Nov 22, 2013 12:37 am Subject: Re: [CMLHope] Re: PCR results I hope I didn't offend you by telling you about the fasting. You know I'd never do or say anything to hurt any one. I just felt I needed to tell you about the fasting. Some people drink coffee, tea, etc. and apparently haven't had problems. I am just a person that tries to do what my doctor says to do. When I was told that it could actually kill you by taking food or drink during this period, I choose not to do either, including my meds. I did ask the oncologist about the pain medication and he said not to, so I don't. I don't take any of my other meds during the fasting period either. I'm just a very careful individual. I wish you the very best Holiday Season and hope that we all are Thankful for these medications that let us enjoy the holidays with our loved ones. That is such a special gift that we all can share in. I've had CML for 15 years now, and here I am. I didn't think I would be, but guess I'm here for a reason. Knowing and sharing with all of you has made my life so much easier to deal with. I still have down days, as we all do, but then I see the cat doing something cute and laugh, or my grandchildren call to tell me they're coming for a visit and my little granddaughter wants me to make her cookies. They're small things, but happy things and I do try to find as many happy things as possible. You didn't make any mistakes by saying what you did. I know that you only have our best interest at heart. You are a very caring person. I always enjoy your e-mails. I just told Jeanie, that if I ever hit the lottery, I'll find a place and pay everyone's way for a week together. Wouldn't that be a kick? We probably wouldn't run out of things to talk about in that time. Have a wonderful Thanksgiving. Wish you could all join me. I'd need help, but we'd cook up a storm and have a wonderful day. Love, hugs, blessings, 18's and whatever else helps. Millie ----- Original Message ----- From: [email protected] To: [email protected] Sent: Thursday, November 21, 2013 11:04 PM Subject: Re: [CMLHope] Re: PCR results Yes, MIllie, thank you for such an important reminder. While we can pre-medicate on sprycel, there are no fasting requirements, ...Peh and others...please please make sure from your doc whether you can pre medicate with anything prior to taking tasigna. I try hard to be as helpful as I can be to others here, but I may have encouraged something you cannot do on tasigna. Ask your doc about water and any pain med the hour before or not? Hope everyone is well and has a very peaceful holiday coming up. So sorry for any confusion that I may have caused. Blessings, 18's , Beth -----Original Message----- From: C.M. Houtz <[email protected]> To: cmlhope <[email protected]> Sent: Thu, Nov 21, 2013 11:04 am Subject: Re: [CMLHope] Re: PCR results Hi Peg, Peter, and whoever else is on. I was under the impression that we can't take anything but water 2 hours prior to taking the Tasigna, and 1 hour after. I asked about other medication, especially pain meds at the time, and was told not to do it. It is something that should be checked out....and perhaps I'm wrong, but I am so careful with everything. I have not had to many problems on the Tasigna. The liver disease may or may not have been caused by it, but the thinking on that now is not really as I'm back on 1/2 dose of it and my liver functions are a little better. I take a lot of medication for a lot of problems, so I may be the exception to the rule. Wish this wasn't so, but it is. At first I had my heart checked every 3 mo., but now we're doing it at 6 months. Now, I am the exception as I have a pace maker and have had congestive heart failure a couple of times, so am on heart medication too. I just wanted you to know what my Oncologist of 20 years told me to do as far as mixing the medications. I actually have a list of when and how to take these things and try to stick to it. You all take care and I wish you well in your struggle with the medication you're taking. I don't remember having the headaches, but, other then lost of hair loss, I haven't had to many unless you count constipation. That's an on going struggle. Someone also mentioned having a sugar problem (diabetes) on this medication. My sugar went up as soon as I went on the medication. I guess it's the price we have to pay. Do to a lot of other factors, Sprycel, isn't a good choice for me. I also have polymiagia which is causing me a lot of pain and they have me on prednisone for that, which also raises your sugar levels. I just keep plugging along though, and so far have been able to deal with the problems that come from all of this. Take care and good luck to everyone having issues with the meds. I keep you all in my prayers and as always send lots of hugs, Millie ----- Original Message ----- From: peg To: [email protected] Sent: Thursday, November 21, 2013 9:34 AM Subject: [CMLHope] Re: PCR results Hi Peter, Thanks so much for sharing! Exactly what you described is what sent me rushing to the cardio doc on the second day! Flushing, chest tightness, the whole works...except for me it starts at exactly 6 hours and lasts about 3. I would have thought it would have been around three hours, as you experienced, since that is peak plasma level...but it is good to know that this should go away eventually. Beth's suggestion of taking something for the headache before it starts was a good one, at least yesterday. I am on a really low dose...200mg once daily...I am hoping that will suppress the CML without causing the rashes, hair loss and pancreatic problems that some folks seem to have on the full dose. Otherwise, it is back to Sprycel for me....but that one was really rough. I think for some folks any of the TKI's are going to be harsh...seems like especially if you have body deficit already...like arthritis...it's sort of like the TKI triggers an inflammatory reaction that makes it all worse if you are not very young and able bodied. I guess if the choice is between bad or worse, picking the one of least side effects is the best we can do. I am hoping Tasigna will be that for me, and appreciate your, and everyone's, insight and experience. Fight on! Peg On Tuesday, November 19, 2013 11:29:13 AM UTC-8, peg wrote: Okay, so someone help me out with my latest results...I have been zero for so long that I don't know exactly what this means. After being zero for several years, my results starting coming back trace for the last few months. (We PCR monthly) We were mucking around with the TKI dose so the change from zero to trace was not too surprising. The trace level was too low to count, so no number. The one prior to this month was 0.00019 Ratio, IS 0.0157%, but because they sent it to the wrong lab it is really not useful or comparative, just kind of alerted me that there is a difference between Ratio number and IS number. This month, back at the right lab, it is now 0.053. This lab does not use the International Scale (IS), so this number has no adjustment...it is simply the BCR-ABL/ABL ratio. So, I'm feeling a bit stupid, but, since everything I can find that explains level changes now uses the IS, and this is NOT an IS number, does this still mean that in going from 0.0000 to 0.053 I have just had a two log increase? And if the error factor is 0.5 to 0.05 is 0.053 really significant or can I worry about something else this week! By the way, just started Tasigna low dose, this is day two with a massive headache...anyone else? Thanks! 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]. 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