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] <javascript:>> > To: cmlhope <[email protected] <javascript:>> > 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] <javascript:> > To: [email protected] <javascript:> > 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] <javascript:> 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] <javascript:>> > To: cmlhope <[email protected] <javascript:>> > 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] <javascript:>) 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] > <javascript:>) > > To: cmlhope <[email protected]_ (mailto:[email protected] > <javascript:>) > > 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] <javascript:>) > 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] <javascript:>) > To unsubscribe from this group, send email to > [email protected] <javascript:>_ > (mailto:[email protected] <javascript:>) > > 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] <javascript:>_ > (mailto:[email protected] <javascript:>) . > For more options, visit https://groups.google.com/groups/opt_out. > > > > > > -- > -- > [CMLHope] > A 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