Dear Marcie, You are an important member of the family here...I cannot wait for you to clear your 5 year anniversary....then we shall all celebrate with you!!! Take care, Beth
-----Original Message----- From: margood18 <[email protected]> To: cmlhope <[email protected]> Sent: Tue, Mar 11, 2014 2:29 pm Subject: Re: [CMLHope] Marty and Beth Hi Everyone: I haven't been online much but I just caught up with a lot of the emails everyone has sent. All of you are in my thoughts and prayers, especially Marty, Beth, Pat (recovering from car accident), Millie and all else who are struggling at this time. This is such a wonderful and supportive group and you have been a lifeline for me in my nearly 5 years since diagnosis. All of you will continue to be in my heart as I pray for good health and blessings for each of you. Marcie -----Original Message----- From: bkbarney <[email protected]> To: cmlhope <[email protected]> Sent: Tue, Mar 11, 2014 3:21 pm Subject: Re: [CMLHope] Marty and Beth Dear Peg, Does increasing the absorption increase the side effects, as though we are taking a larger dose? That's my fear....better result with less meds..but in actuality we have more successful uptake in the body......so more toxicity??? Michelle, what are your thoughts? I am taking vinegar already, but will take it at night with sprycel when I reuptake...thanks for writing Peg, I appreciate it.... My concerns are that 5 1/2 weeks post surgery I still have a large scab on the wound...not healing easily...so I imagine this lack of healing response is sprycel induced...I am waiting as long as I can..but am getting too anxious not taking my meds..so think I shall start up this week. Take care, love to all of you, Beth -----Original Message----- From: peg <[email protected]> To: cmlhope <[email protected]> Sent: Tue, Mar 11, 2014 8:47 am Subject: Re: [CMLHope] Marty and Beth 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 ill improve and get your numbers to where they should be. I pray that you're n remission soon and that you can get back to life and all it has to offer. ou've been through so very much, and I hope that you can listen to your surgeon nd not over do things to soon. It does take a while to get past any surgery. ime heals, so please take it easy and let your recovery happen. I'm dealing ith the pain, and having home care is helping as I don't have to leave the ouse to get the blood work done. They are getting me a meter to be able to onitor my blood thinner from home. I'm not sure if I'll be approved, but we hall see. I wasn't going to get one, but my nurse says I should have it. If t doesn't work for me, then I'll just have to go get the blood work done. I'm ot going to think or worry about it. It will either work for me, or it won't.. ime will tell. Meanwhile, you take care and keep healing. Keep us up on how things are going or you. You're always on my mind and in my heart and prayers. I think that, s a group, we do well in helping one another and as Marty says, that is what e're here for.... to help one another. and I am a firm believer that it works. 've improved so much in the past few days and I know that it's because I've ad all of you to say prayers and encourage me to get better. Just know that y prayers are being said for all of us. Love and Hugs, illie rom: [email protected] o: [email protected] ent: Sat, 08 Mar 2014 16:45:15 -0500 (EST) ubject: Re: [CMLHope] Marty and Beth Thanks Beth, I hope everything is good. Sprycel will get them back into a ood place, at least it has worked good for me. eep healing, lessings, eanie<3 n 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 omorrow for BCR, will let you know once I get results back...I was not n remission when I had to go off for surgery....so I know without the meds nd not in remission that my numbers will be up...so going back on is a riority.... ake care, eth -----Original Message----- rom: ICANDOALLTTC <[email protected]> o: cmlhope <[email protected]> ent: Thu, Mar 6, 2014 4:53 pm ubject: Re: [CMLHope] Marty hanks Beth, ang in there; time will heal. What are your counts since you have been ff the drug? es, it's scary off and scary on the drugs. ope everyone gets better, and we will all have a block party. lessings, eanie<3 n 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, ust a note to say I am thinking about you, praying for you, holding you lose. I am slowly healing as well...back surgery taking much longer to heal han anyone could predict...nerves and wound healing.... somewhat ompromised from long term use of our meds...will re-uptake sprycel next eek....not what surgeon wants..but too long off becomes too scary to e....must get umbers back in control.....always a balancing act..for most I know....my oes seem far lighter than many here, so today I am praying that MIllie's ain eases and Marty, - the the new fistula ripens quickly so it can be used s soon as possible....hoping a donor will come any day...... nd Pat E...wherever you are, I am praying for you as well.... ake care to all, ove and light, eth -----Original Message----- rom: Marty Gartenberg <[email protected]_ ([email protected]) > o: cmlhope <[email protected]_ (mailto:[email protected]) > ent: Wed, Mar 5, 2014 7:04 pm ubject: Re: [CMLHope] Marty ear Millie and everyone else, hank you for your concern. I am slowly getting back to myself. Dialysis s becoming more difficult and I am in need of a kidney transplant soon. A ew fistula was put into my other arm but it has to mature for another month nd a half in order to be used. illie, I'm so sorry to hear that you have to go through all of that. As ou pray for me so do I for you and everyone else. have to get going now. I'm really tired. Until next time... 18's, arty 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 ast I heard was days ago and he was having trouble with his dialysis and ounded really bad. If anyone has heard, would you please put it on our ite. I will write again today and he has always answered my e-mails, even ot feeling well. They were short, but I knew that he was not doing well. f I hear any more, I'll let you know. I know that dialysis wasn't going ell and don't know if they were able to use his new port or not. Actually, t's not a port, but has another name that I forget. I haven't heard from ny 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 emission. The bad news is that every muscle and joint in my body is screaming nd hey put me back on Home Care. I can hardly do anything. I did manage to o downstairs for a while today. My physical therapist came and had me go own.. This after noon my occupational therapist is coming to work on my pper body strength. She made it worse a year ago when she worked on it, so f that happens this time, I'll tell her that I don't want any. The gal hat worked on my legs today was very good, and I want to keep her. The ther one doesn't listen to anything you tell her. Oh well, others have thrown er out of their house, and I just might do the same thing. I have an aid hat comes every couple of days to bathe me as I can't get into the shower ight now. I'd fall if I tried. I can't use my walker very well, and just etting from my bedroom to the bathroom is horrible, causing me so much ain. I have to have someone with me when I attempt that. My aid and the urse that comes a couple of times a week are wonderful. I had them the last wo times I was under home care. I know that the nurse is going to take lood tomorrow. That's always fun. :>) I'm trying hard to do what I have o do. My wonderful son is doing everything for me right now and I want to et back to the point where I can do things for myself. Enough about me. I ust wanted to catch up on these things with all of you. I hope that ou're all doing as well as you can. Write and tell me how it's going. Thank od for my television, phone, and computer in my room. It's nice to be able o connect with the world. It keeps me out of trouble. Again, if anyone knows anything about Marty, please let us all know. If I ear anything, I'll let you know. Marty has become a good friend to me and o others on our site. 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