Hi Peg, you seem to have brought up something that is very interesting. "Taking vinegar, lemon juice or even Coke with it first, before increasing it".
If that works and I have no reason to doubt it, then, I think that everyone that is using it should discuss it with their Oncologist. So, you can see what a wonderful group this really is. People that have CML all discussing very useful things to help out each other. 18's, Marty On Tue, Mar 11, 2014 at 9:47 AM, peg <[email protected]> wrote: > Hi Beth, > > I know how scarey this is for you. No one should have to make choices > only between bad and worse! I don't have much to offer on the problem of > elevated CPK. That elevation, not a problem in itself is actually a symptom > of a bigger problem, myopathy, where the muscles start breaking down, > resulting not only in weakness, but damage to the kidneys. While I had a > multitude of problems on Sprycel, including an auto-immune reaction, > Myopathy was not one of them. However, I did have a serious problem with > that on Gleevec. The answer for me was to stop Gleevec and move on to > another drug. Since Gleevec was my first back then, I still had options. > Being on the last one now, it makes the potential for problems a bit more > real and scarey. > > I can tell you for me that with all of these drugs a little goes a long > way. Many of the serious side effects could have been avoided by starting > at a smaller dose and increasing only in response to lagging PCR's. In > both cases with Gleevec and Sprycel we started at the normal recommended > dose, which in hind sight was far too much for me! When we started Tasigna > in Nov, after a three month break, we monitored my PCR monthly, and within > two months I was down to trace detectible, and in the third month I was > zero detectible. That was on 1/4th of the normal dose! I do believe > that less dose equals less side effect risk. I also think there is > something to Michelle's theory of using vinegar or lemon juice to increase > stomach acid with Sprycel. This has been confirmed to me by one of the > Docs that helped develop Sprycel. If a low dose is not working well over > two consecutive PCR's, I would try vinegar, lemon juice or even Coke with > it first, before increasing it. That will increase the absorption of the > drug without increasing the dose itself. Just something to think about. > > Keeping you in my prayers! > > Fight on, > peg > > > > > On Monday, March 10, 2014 10:36:59 AM UTC-7, Beth wrote: >> >> Thank you Jeanie, Marty, Millie, and everyone else who send >> prayers...etc..I agree how unbelievably important it is to stay in >> community and know others are there, thinking of you, listening and and >> praying each in their own way for you and one another. I am still off >> chemo...working on back pain....calming it down...getting ready to restart >> up soon. Did BCR on Friday...will see results next week...and go from >> there. I can tell you for me that with all of these drugs a little goes a >> long way. >> As I re uptake sprycel, I am wondering if anyone has had any success >> managing elevated CPK...with anything besides ongoing prednizone use? >> Trying to keep that side effect under control from the get go this >> time....thoughts?? >> >> Love to all of you, >> >> Beth >> >> >> -----Original Message----- >> From: houtz <[email protected]> >> To: cmlhope <[email protected]> >> Sent: Sat, Mar 8, 2014 4:07 pm >> Subject: Re: [CMLHope] Marty and Beth >> >> Just want you to know that I'm thinking about you and hoping that each day >> you >> will improve and get your numbers to where they should be. I pray that >> you're >> in remission soon and that you can get back to life and all it has to offer. >> You've been through so very much, and I hope that you can listen to your >> surgeon >> and not over do things to soon. It does take a while to get past any >> surgery. >> Time heals, so please take it easy and let your recovery happen. I'm >> dealing >> with the pain, and having home care is helping as I don't have to leave the >> house to get the blood work done. They are getting me a meter to be able to >> monitor my blood thinner from home. I'm not sure if I'll be approved, but we >> shall see. I wasn't going to get one, but my nurse says I should have it. >> If >> it doesn't work for me, then I'll just have to go get the blood work done. >> I'm >> not going to think or worry about it. It will either work for me, or it >> won't.. >> time will tell. >> >> Meanwhile, you take care and keep healing. Keep us up on how things are >> going >> for you. You're always on my mind and in my heart and prayers. I think >> that, >> as a group, we do well in helping one another and as Marty says, that is what >> we're here for.... to help one another. and I am a firm believer that it >> works. >> I've improved so much in the past few days and I know that it's because I've >> had all of you to say prayers and encourage me to get better. Just know >> that >> my prayers are being said for all of us. >> >> Love and Hugs, >> Millie >> >> >> From: [email protected] >> To: [email protected] >> Sent: Sat, 08 Mar 2014 16:45:15 -0500 (EST) >> Subject: Re: [CMLHope] Marty and Beth >> >> Thanks Beth, I hope everything is good. Sprycel will get them back into a >> good place, at least it has worked good for me. >> Keep healing, >> Blessings, >> Jeanie<3 >> >> >> In a message dated 3/6/2014 7:39:17 P.M. Eastern Standard Time, >> [email protected] writes: >> >> hi Jeanie! Glad to hear from you...I don't know what my counts are...going >> tomorrow for BCR, will let you know once I get results back...I was not >> in remission when I had to go off for surgery....so I know without the meds >> and not in remission that my numbers will be up...so going back on is a >> priority.... >> take care, >> >> Beth >> >> >> >> -----Original Message----- >> From: ICANDOALLTTC <[email protected]> >> To: cmlhope <[email protected]> >> Sent: Thu, Mar 6, 2014 4:53 pm >> Subject: Re: [CMLHope] Marty >> >> >> >> Thanks Beth, >> Hang in there; time will heal. What are your counts since you have been >> off the drug? >> Yes, it's scary off and scary on the drugs. >> Hope everyone gets better, and we will all have a block party. >> Blessings, >> Jeanie<3 >> >> >> In a message dated 3/6/2014 5:30:30 P.M. Eastern Standard Time, >> [email protected]_ (mailto:[email protected]) writes: >> >> Dear Marty and Millie and all my other CML family, >> >> Just a note to say I am thinking about you, praying for you, holding you >> close. I am slowly healing as well...back surgery taking much longer to heal >> than anyone could predict...nerves and wound healing.... somewhat >> compromised from long term use of our meds...will re-uptake sprycel next >> week....not what surgeon wants..but too long off becomes too scary to >> me....must get >> numbers back in control.....always a balancing act..for most I know....my >> woes seem far lighter than many here, so today I am praying that MIllie's >> pain eases and Marty, - the the new fistula ripens quickly so it can be used >> as soon as possible....hoping a donor will come any day...... >> >> and Pat E...wherever you are, I am praying for you as well.... >> take care to all, >> >> love and light, >> >> Beth >> >> >> >> -----Original Message----- >> From: Marty Gartenberg <[email protected]_ ([email protected]) > >> To: cmlhope <[email protected]_ (mailto:[email protected]) > >> Sent: Wed, Mar 5, 2014 7:04 pm >> Subject: Re: [CMLHope] Marty >> >> >> >> >> >> >> Dear Millie and everyone else, >> >> >> Thank you for your concern. I am slowly getting back to myself. Dialysis >> is becoming more difficult and I am in need of a kidney transplant soon. A >> new fistula was put into my other arm but it has to mature for another month >> and a half in order to be used. >> >> >> Millie, I'm so sorry to hear that you have to go through all of that. As >> you pray for me so do I for you and everyone else. >> >> >> I have to get going now. I'm really tired. Until next time... >> >> >> >> 18's, >> >> >> Marty >> >> >> >> On Wed, Mar 5, 2014 at 2:21 PM, houtz <[email protected]_ >> ([email protected]) > wrote: >> >> I am so concerned about Marty. Has anyone heard from him besides me. The >> last I heard was days ago and he was having trouble with his dialysis and >> sounded really bad. If anyone has heard, would you please put it on our >> site. I will write again today and he has always answered my e-mails, even >> not feeling well. They were short, but I knew that he was not doing well. >> If I hear any more, I'll let you know. I know that dialysis wasn't going >> well and don't know if they were able to use his new port or not. Actually, >> it's not a port, but has another name that I forget. I haven't heard from >> any of you, so if you are checking your e-mails, please let me know what's >> going on with each one of you. >> >> My latest is that, even on 1/2 dose of the Tasigna, I'm still in >> remission. The bad news is that every muscle and joint in my body is >> screaming >> and >> they put me back on Home Care. I can hardly do anything. I did manage to >> go downstairs for a while today. My physical therapist came and had me go >> down.. This after noon my occupational therapist is coming to work on my >> upper body strength. She made it worse a year ago when she worked on it, so >> if that happens this time, I'll tell her that I don't want any. The gal >> that worked on my legs today was very good, and I want to keep her. The >> other one doesn't listen to anything you tell her. Oh well, others have >> thrown >> her out of their house, and I just might do the same thing. I have an aid >> that comes every couple of days to bathe me as I can't get into the shower >> right now. I'd fall if I tried. I can't use my walker very well, and just >> getting from my bedroom to the bathroom is horrible, causing me so much >> pain. I have to have someone with me when I attempt that. My aid and the >> nurse that comes a couple of times a week are wonderful. I had them the >> last >> two times I was under home care. I know that the nurse is going to take >> blood tomorrow. That's always fun. :>) I'm trying hard to do what I have >> to do. My wonderful son is doing everything for me right now and I want to >> get back to the point where I can do things for myself. Enough about me. I >> just wanted to catch up on these things with all of you. I hope that >> you're all doing as well as you can. Write and tell me how it's going. >> Thank >> God for my television, phone, and computer in my room. It's nice to be able >> to connect with the world. It keeps me out of trouble. >> >> Again, if anyone knows anything about Marty, please let us all know. If I >> hear anything, I'll let you know. Marty has become a good friend to me and >> to others on our site. >> >> Hugs, >> Millie >> >> -- >> -- >> [CMLHope] >> A support group of _http://cmlhope.com_ (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]_ >> (mailto:[email protected]) >> To unsubscribe from this group, send email to >> [email protected]_ (mailto:[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]_ >> (mailto:[email protected]) . >> For more options, visit https://groups.google.com/groups/opt_out. >> >> >> >> >> >> -- >> -- >> [CMLHope] >> A support group of _http://cmlhope.com_ 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