Dear Donna, I feel so humbled by your story. I feel blessed to be enduring what I am in comparison. I am so sorry the meds have not held you. And this on top of a kidney transplant. I will keep you in my thought and prayers. Your spirit is utterlky amazing.
Regarding my friend Barb,I know she would be happy to talk to you via the phone if it would in any way help you. She is 101 days post bone marrow transplant and is doing very well, back home, dealing with some graft verses host issues, but they are stayed on top of well.She does weekly bloodwork, more if needed..and is closely monitered..but she is back in her home, working from home etc..Her diagnosis was different than ours, she had a blood disorder which turned into mylo fibrosis...and her blood was in the process of turning to ALL, so before it became leukemia, she had the transplant. She was very very impressed with most of the staff at Moffit and her care there..Her Bone Marrow biopsy shows completely male cytogenetics..her donor was a young man from Germany. I have another very close friend in Boston who did a stem cell transplant out East. She had systemic scleroderma..She is doing extremely well, disease free..She could use her own stem cells so she did not have to deal with the graft verses host complications... What I know is that my friend Barb traveled to three Bone Marrow Transplant Units, Mayo in Arizona, etc...Someone gave her really good advise, that she needed to see where she would be and talk with the people who would be doing the transplant. She needed to have a good feeling about it going in.,.and she did. I do not know if you are able to travel at all, to visit places, but I know her decision was made based upon her support network, her comfort, their experience with transplants with her type of presenting issues and illness. I do know that I personally spoke to two people while there who had transplants for CML. Both are doing well. They work at the hospital! Do you have a family donor or are you going from the national registry? If you would like her nunmber I am happy to give it to you privately. She is all about giving back and she truly understands.. Please let me know how I can be of help. I am familiar with some of the transplant centers in the country. Just based upon research, not seeing them except for Moffit. Take good care, Warmly, 18's Beth -----Original Message----- From: [email protected] <[email protected]> To: cmlhope <[email protected]> Sent: Sat, Sep 21, 2013 10:47 am Subject: Re: [CMLHope] Hello Beth, Hello and good afternoon from Kentucky. I am sorry you are going through what you're going through. I've been carrying this diagnosis CML since 2007,this six months following a kidney transplant. I do peritoneal dialysis at home. I've been on all the nib drugs and they all have failed at this point. I am now taking Dicitapine (chemotherpay) in order to get my counts low enough for me to withstand a bone marrow transplant aka stem cell transplant. My question to you is how did you friend at Moffett do with her/his stem cell transplant? What was that individual's diagnosis. Anything you can share I would appreciate. Thanks, Donna From: "[email protected]" <[email protected]> To: [email protected] Sent: Thursday, September 12, 2013 11:38 PM Subject: Re: [CMLHope] Hello Dear Susan and all, Thanks for your kind words. I am in Chicago...my status is undetectable for the past 4 months. Another BCr Abl will be done at the end of this month and we will see then if I am still holding. I am on sprycel at between 40 and 60 a day, I have had CML for 3.5 years, have been on Gleevec, Tasigna, Bosutinib, and Sprycel, never got to PCRU until 4 months ago....60 of sprycel did the trick. ..my struggles have been elevated cpk, muscle weakness in my legs, trouble going up stairs and down, getting up from seated position,.., deep fatigue,. I had a robotic hysterectomy last year in March and woke up from it with bad bad back pain, sciatica came and has not left for 16 months.epiderals, PT..to no avail.....I had numbless and tingling in my fingers which they attributed to sprycel neuropathy...weakness, sprycel...in January into February. I started to have significant tension in both my upper arms, across my chest, weakness in my arms as well... etc... long story short, this is a lesson for everyone..that's why I am sharing it......all my symptoms have been attributed to sprycel, for years.. When I went to care for my best friend at Moffit who went through a bone marrow transplant, I had time to really sit and be in my body. I emailed my doc from there and said..... I am feeling worse and worse in my body and my dosage is the same. .....so when I come back home, lets pretend I don't have cml and I am not on sprycel..what might be causing these symptoms....let's rule out something else going on entirely because that is what I believe is going on......so when I returned to Chicago, I went through lots of tests..and MRI"s and.........I have a serious herniation in my neck at C4 and C5 which is causing all the numbness and tingling, they think, in both my arms, hands and my legs...which I have complained about for a very long time... I have to have surgery to remove both disks.....while I was prepared to have to have a lumbar surgery to fix the herniation caused by how they positioned me during surgery..., and at last be free of sciatica..I was not prepared for this blow....I first have to have an unexpected major surgery........I am glad to have a true diagnosis, and something that is fixable..hopefully surgery without any complicatons......it means going off sprycel...pre and post surgeries and hoping I can hold a remission I just got into........I will take time off in between surgeries to heal...it means being off of work without income for extended time. and figure out how to best hold my clients through all of this.....so today, I am overwhelmed...trying to get my bearings..and then..second opinion neuro surgeon Monday..and we will go from there.. I am going to dance one day...do yoga, swim, lift weights... and join Judi in a team in training one day...walk the Grand Canyon....I just need to stay positive and climb these next two or three mountains...heal....and go from there.. Prayers are always helpful...hugs.....the more the better..... Take care all of you, Beth -----Original Message----- From: Susan Zimmerman <[email protected]> To: cmlhope <[email protected]> Sent: Thu, Sep 12, 2013 7:14 pm Subject: Re: [CMLHope] Hello Dear Beth, You are truly a sweet person with your wonderful posts. I also have a dog that is terrified of thunder and lightning. She burrows under our covers on the bed and is fine then. I've heard of the coats and might get her one. I am not sure of your whereabouts, Beth. And what is your status re. the CML? Sorry, I've forgotten. I pray you are in remission and doing fine. I did see something on facebook by Marcie Goodman about a trial her and family went through this week. Please lift her up in your prayers. She did not elaborate. All the rest of you blood brothers and sisters, may God's richest blessings be showered on you as you enjoy every moment that we are on this side of the ground! Expect to be blessed. 18's, Susan F. Zimmerman "Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you." Hab. 1:5 -----Original Message----- From: bkbarney <[email protected]> To: cmlhope <[email protected]> Sent: Thu, Sep 12, 2013 5:19 pm Subject: Re: [CMLHope] Hello Dear Marty, I too hope you get good news regarding your kidney transplant soon. Regarding Shyloh and being frightened by thunderstorms....my Gracie, ( affenpincer) has had that issue since she was a puppy. I bought her a "thunder coat" which is a coat that fits snuggly on the dog, and it makes them feel safer and more secure, kind of like when you swattel babies. If you google it you can see them and get them on Amazon or even the local pet stores carry them. It has really helped Gracie to tolerate better rain and thunder...she still shakes...but it's much much better since the thunder coat. They come in all sizes and colors...just a thought... Millie, feel better.....take a long nap and may you feel the love around you when you wake up..thanks for checking out the sites... to everyone, this month,and especially September 22nd, I wish a feeling of togetherness, and unity, and family for all of us. take care, `18's Beth -----Original Message----- From: Marty Gartenberg <[email protected]> To: cmlhope <[email protected]> Sent: Thu, Sep 12, 2013 4:09 pm Subject: Re: [CMLHope] Hello You know Millie, This is what I just love about you. You actually send each person your thoughts about them and how they are doing and do it all at once. Very cleaver if you ask me. By the way Millie, just because you had one very good day with your son it doesn't mean that you won't have many more dood days and that is what I wish for you. You are correct about we have to do what we have to do. Also, worring about something isn't going to make it better or worse. It will be what it is and either way we will have to deal with anything that comes our way, and we will. I admire you for the way you think. To answer your question about the rain, well, we have had our share. I really don't mind the rain so much but here in Pennsylvania that rain changes over to snow, and that is what I really mind. That is why we moved to Florida. What I really feel badly about is whenever it rains it comes with thunder and lightening. My dog Shyloh is so afraid of the thunder and lightening that she shivvers and hides under the bed. She won't even come out to eat or go out. Yes, we just started packing everything up for our trip back to Florida. We will be leaving here on September 21st. We have a unique way of packing. Since I have a Grand Caravan all of the seats go into the floor, Stow and Go is what it's called. We keep only one seat up besides the two in front. That seat is for our daughter Meredith who travels back and forth with us. With these seats down and stowed away we have plenty of room because the floor is mostly flat. Whenever we go yo Costco I ask the manager if I could have any empty wooden wine boxes. He usually gives me a couple each time we are there. I then buy a quater inch thick piece of plywood and cut out the covers for them. We pack just about everything in them and then I use small brads to close them up. I label each box so I know where everything has to go once we get back to Florida. You know what Millie? I'm sending all of your hugs right back at you. I hope that they make you feel better, and of course.... 18's Marty On Thu, Sep 12, 2013 at 3:55 PM, C.M. Houtz <[email protected]> wrote: I wanted to thank all of you for your e-mails about my wonderful day out with my son. I have had a lot of pain since, so I'm so happy that I took advantage of that day. Unless you've been in the house for months (other then doctors), you can't understand how great it felt. I know that Marty knows....even more then I do, how it feels to be in one place for a long period of time. We do what we have to do. I haven't tried my popcorn cycle yet, Norm, so I'll have to let you know. The one that I used on the other one, more then anything, was the rice cycle. It made perfect rice and am hoping that this one will too. Using these wonderful inventions makes my life so much easier. I am glad every day for my food processor as it does a lot that I can't do anymore. At any rate, it was good to share it with you all. Did you get the heavy rain up in your area of PA, Marty? We didn't get anything, but it looks like we could today. We've been fortunate here in this area. Sue, I hope that you remain in remission. I know that my numbers have increased, but won't know by how much until I see the doctor again. He ordered a liver function and CBC this time. He won't do any other testing until they see what my liver is able to handle, and then might increase it to full strength at some point. I try not to worry or think about it as it doesn't do you any good. Stay positive, and, as always, I will keep you all in my prayers. Beth, I haven't checked out the sites you sent yet, but will try to do so later today. Right now I'm going to take a much needed nap. I'm not sure if that's the CML or just being 74 that requires a nap, but lately, I've been taking them. You all take care and let me know how you're doing. I know that Marty and Shelly will soon be heading for Florida again. I hope that you have a wonderful trip and that you get some good news about having your kidney replaced. Let us know how it goes when you can. Talk to you all soon. Love, Hugs, and 18's Millie -- -- [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 mailto:cmlhope%[email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com/ ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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