Hi Millie, I haven't heard anything from you in a while. I hope everything is alright. Please keep in touch, I'm a bit concerned about you.
18's, Marty On Sat, Mar 15, 2014 at 9:50 AM, houtz <[email protected]> wrote: > Thanks Skip. I really didn't know what to do for a while, but was so upset > over it all. My Home nurse, who is wonderful, called and I literally came > apart at that moment telling her what had happened. She called her > supervisor, and now I don't have to put up with this person any more. I'm > not complaining, but I have enough issues on my plate, and this person > doesn't have a clue. Marty always helps me deal with these things and does a > great job. He has become such a good friend and I really trust what he tells > me. I know how much he admires you, so that says a lot for you. Glad that > you're doing so well. It's good to see you on line. > > 18's and hugs, > Millie > ----- Original Message ----- > From: Skip Duffie <[email protected]> > To: [email protected] > Sent: Sat, 15 Mar 2014 09:31:13 -0400 (EDT) > Subject: Re: [CMLHope] Marty and Beth Millie and All > > Hi all, hope everyone is having a wonderful, day,. I was reading the posts > here and I must say, if someone made threats to me, I would report it right > away. > I wish to talk on PICC Lines though. I see so many of us who talk about > getting and giving blood that I wonder why your ONC has not ordered PICC > Lines. > I have had one for about 5 years now. It has made life so much better. If > your interested about getting a PICC line go to UTUBE and search on PICC Line > insertion, cleaning, removal, and prep. It does not HURT. I have had mine > changed and it was so simple and quick. . some people seem to clot easy as > compared to me > (platelets 0 - 25) so all they do is put about 5cc anti clotting in each > line. well if your interested as I said go to utube . It is a bit of a > bother as, it must be cleaned often, but I have to be in hospital twice > weekly, so it is ok for me. > Be safe all > Skip Duffie > DX 1977 ( or when the dead sea was just sick <smile>) > > > > On Friday, March 14, 2014 8:22:38 PM, Marty Gartenberg <[email protected]> > wrote: > > Hi Millie, >> >>Did I read your post correctly? You say that your therapist threatened you? >> >>Well you did the right thing by letting her boss know about it. I would never >>put up with anything like that. You may want to consider filing charges with >>the agency that governs her employment. >> >>At least your going to get someone that you like and shows you some respect. >> >>18's, >> >>Marty >> >> >> >> >>On Fri, Mar 14, 2014 at 4:42 PM, C.M. Houtz <[email protected]> wrote: >> >> >>> >>>Jeanie, I do believe > that you stress to much over your blood work. If it isn't doing well, > you'll find out soon enough, and just knowing isn't going to do anything. > Your doctors are good and let them take care of you unless you truly feel > that they aren't doing that. That is the only time I'd complain. I > just went through something terrible with one of the therapists that is > coming. I've never liked her, and I just told her boss that I don't want > her in my house anymore. She's an over paid idiot. I won't go into > it all because I'm still so upset over it all, but think things will work > out. If not, I'll just have to figure it all out. I am tired of her > threats and it just isn't worth it. I have another therapist that I love, > and I believe that she's going to be the one taking over, and I'm fine with > that. I told the head nurse that I love every one that's coming > here, and that it's only the one causing the problems. When a person > trying to help you, makes you cry all afternoon, then they're not doing you > any > good. I'm a strong person, but there's only so much a person can > take. Enough about that. I have handled it and that's what's > important. >>> >>>I do hope that you're > having a good day, my friend. I really do try not to worry about things I > can't do anything about. What happened today was something I could deal > with, and I did. I do believe what Marty says and your mind does control a > lot of how you're handling this CML. I need to get rid of the stress in my > life, and so today I did some of that. I don't need it and so I'm glad > that I finally did it. She has no business working with people that need > help and she's certainly not helping. >>> >>>They're calling for > possible snow, Sunday into Monday, but we shall see. I could live > without it, that's for sure. I would love to be in your garden eating all > of that citrus. I wouldn't leave. I love fruit and veggies but love > them fresh. Can't get fresher then having them in the yard. I eat a > lot of apples here in the Northeast, pears, plums, peaches, raspberries, > blueberries, etc. etc. and love them so much. I don't think that there's a > fruit I don't like. >>> >>>You take care of > yourself, Jeanie. I just wish you wouldn't worry so much as that isn't > good for you either. >>> >>>Talk to you > later. >>>Love & > Hugs, >>>Millie >>>----- Original Message ----- >>>>From: [email protected] >>>>To: [email protected] >>>>Sent: Friday, March 14, 2014 11:20 AM >>>>Subject: Re: [CMLHope] Marty and Beth Millie and All >>>> >>>> >>>>Thanks Marty, My onc said I was too old for a transplant when I was first >>>>dx in 2004, so Gleevec was the answer for me. It worked a few years and >>>>then just quit. I have a lot of scars in my arms from blood test, but I >>>>still smile when they stick the needle in because I know it is one tool >>>>that helped me to fight this CML. >>>>For those of us who face those blood test regularly, there is always that >>>>anticipation of "if my blood ok today?" And what is neat is that most of >>>>the time our blood is ok; but when you have had the relapses I have faced, >>>>it makes a difference in how you face those blood test. I want to be like >>>> Millie, and just worry about today and not the next time my blood is >>>>checked. hehe Thanks Millie for all your uplifting and advice and thanks >>>>to all our CML'ers that are fighting everyday of their lives. >>>>Marty, I'm glad yours was taken care of and that you are good as far as >>>>the CML goes. Right on about "Cure My Leukemia." AND soon I hope! >>>>Good luck and Blessings, >>>>Jeanie<3 >>>> >>>>In a message dated 3/13/2014 9:39:23 P.M. Eastern Daylight Time, >>>>[email protected] writes: >>>>Hi Jeanie, >>>>> >>>>> >>>>> >>>>>I think that your Oncologist is correct. Getting a blood test every day >>>>>would be worse then having it on a scheduled frequency. Can you imagine >>>>>worrying about the results each day? >>>>> >>>>>As I have already mentioned, one day in the not to distant future you >>>>>won't have to worry about getting blood tests because there will finally >>>>>be a cure for CML. You mark my words... >>>>> >>>>> >>>>>I vividly remember when I first saw my bone marrow transplant oncologist. >>>>>I asked him if he knew what CML stood for. He started to tell me and I >>>>>interrupted him. I said what it meant to me was "Cure My Leukemia" and he >>>>>did! >>>>> >>>>>Of course it was through a bone marrow transplant. But, > there has been so much done and discovered about this disease and one day > it > will be "Cure My Leukemia" and it will be done! >>>>> >>>>> >>>>>18's, >>>>> >>>>> >>>>>Marty >>>>> >>>>> >>>>> >>>>> >>>>> >>>>>On Thu, Mar 13, 2014 at 5:03 PM, <[email protected]> wrote: >>>>> >>>>> >>>>>>Hi Marty and so good to see you back on. One of our problems with CML >>>>>>is that we can't get our blood checked everyday to see how its reacting >>>>>>to the meds so we have to try something for a while and then get it >>>>>>checked. I wish there was a machine that we could use to take our blood >>>>>>daily like a blood glucose machine. That would be great! >>>>>>My onc doesn't want to talk about changing doses; he says if it isn't >>>>>>broke don't fix it. >>>>>>Good luck and blessings, >>>>>>Jeanie<3 >>>>>> >>>>>> >>>>>>In a message dated 3/11/2014 8:54:10 P.M. Eastern Daylight Time, >>>>>>[email protected] writes: >>>>>>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_/ (http://cmlhope.com/) > ------------------------------------------------- You received this message > because you are 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