Dear Mar, I just wanted to reach out to you and let you know that I am thinking of you this holiday season as you prepare for a BMT. I would offer to you if it is helpful, that my best friend Barb just had a bonemarrow transplant six months ago. Her siblings were not matches for her but she was matched with a non related donor through the registry. She would be happy to talk with you and answer any questions you may have. She understands the fear involved and can walk you through any questions you may have. If you want her phone number please email me at [email protected] I asked her and she, like Marty would be happy to companion you in getting ready for this journey. My best..HOpe you have a peaceful holiday with those you love. Beth
-----Original Message----- From: Marty Gartenberg <[email protected]> To: cmlhope <[email protected]> Sent: Fri, Dec 20, 2013 7:31 am Subject: Re: [CMLHope] Results in Hi again Mar, By the way, what does Mar stand for? That is why I used " " for the first three letters for my name. I just want to wish you the very best for your upcoming BMT. Remember that I am here for you if you should ever have any concerns and want to speak. 18's, "Mar"ty On Fri, Dec 20, 2013 at 3:46 AM, Mar <[email protected]> wrote: Marty, Thank you for both the Patient's Prayer and The Window. You are right about my being frightened... at such stunning news. But like anything we are usually frightened of the unknown and it takes some time to become familiar with it, decrease the emotions, and become at ease with the unknown. I will remember your story of The Window as I go through the process of the BMT.. I thank you for it! What a wonderful message to remember. I also thank you for the prayer.. I will remember to give thanks for all I have - because it has been a lot throughout my life. Yes, I won't be in the same BMT bubble as you as things have improved; but, it is my sense we all have a bubble around us that, with CML, we need to fight.. which is the negativity that could debilitate in many ways as we take this journey. This site is great as everyone realizes and remarks that they are CML Warriors... who will fight the disease. I will fight and continue to fight. I am fortunate to have found this site with others who continue to fight through their diseases and are so positive...this is all new for me and am learning as I go forward. You wondered about my health care providers? I have a specialist and from my reading of the research on CML she is correct that the TKI's will not be effective. I am part of the 2-3% that are intolerant and resistant to the medication. I trust her and the team of medical people I have around me and know I am in good hands. I don't think I would find any better. That I give thanks for. Again thank you for your insights, kindness and inspiration! Mar On Thursday, December 19, 2013 11:38:36 PM UTC-8, wa2yyx wrote: Hi Mar, Well, you now know me. I had a bone marrow almost 24 years ago, and my sister was my donor. I am sorry that the TKI's aren't working out for you. Is your doctor a Leukemia specialist? If not then I urge you to find one. Perhaps he or she might be able to get you going on another type of TKI? If not then I guess that you will have to go through a stem cell or bone marrow transplant. Believe me they are a lot different from when I had mine. There have been so many improvements. I'm not saying it is a walk in the park but you have to do whatever you have to do to beat this CML, and one way or another you will. I also know that you are frightened, and it shows that you are a normal person. If you weren't frightened then you would be fooling yourself. The trick is to learn to take one day at a time. Just keep putting one foot in front of the other along your journey. In the meantime I am enclosing a very special prayer for you to say. This prayer was given to me 23 years ago and it really helped me as it will you. It is called "The Patients Prayer" If there is anything that I can do to help you along your journey then you be sure to let me know. Believe me I know exactly what your going through, but you will learn to help yourself along as well. You must have faith and it will get you through this. I also want you to read something that I wrote many years ago called the "window". http://talkbloodcancer.com/content/window-martin-gartenberg By the way, in my time I had to live in a plastic bubble but nowadays you won't have to because of all of the advancements in stem cell or bone marrow transplants, so don't concern yourself with that. A PATIENT’S PRAYER Eternal GOD, source of healing, out of my distress I call upon you. Help me to sense your presence at this difficult time. You have already sent me gifts of your goodness: The skill of my physician, the concern of others who help me, the compassion of those I love, and who love me. I pray that I may be worthy of all these, today and in the days to come. Help me to banish all bitterness; let not despair overcome me. Grant me patience when the hours are heavy; give me courage whenever there is hurt or disappointment. Keep me trustful in your love, O GOD. Give me strength for today, and hope for tomorrow. To your loving hands I commit my spirit when asleep and when awake. You are with me; I shall not fear. Help me, O GOD, in my time of need. Mar, any time I post anything I usually end it with two numbers 1 and 8. These two numbers are the symbol for life. 18's Mar. "Mar"ty On Fri, Dec 20, 2013 at 2:09 AM, Mar <[email protected]> wrote: I wish I had the good news that all is well and in hand after almost a year at taking TKI - Gleevec and Dasatinib for my CML. But, my genetics results today -.63 meant no cytogenic recovery of -2.00 or the molecular at -4.00. My doctor informed me I was 'unique'... not quite the time you want to be unique as I continue to fail on the treatments and she does not think other medications will work. I do not have any mutations based on the test results. So, I was screened today for a BMT and have contacted my bothers and sisters for a donor.. I need to send their contact information to the BMT Coordinator tomorrow. I had to phone both my sisters and both brothers (I was very nervous asking them) if they would be willing. I am so fortunate to have such a wonderful family as they all consented to be tested. It will take the next 5-6 weeks to find a donor and move towards the next step. In the meantime I am at 20 mg of Diasanib every second day and to only stop the medication if my blood levels become severely rather than mildly or moderately low. So, I will be working at home if possible during these periods of low counts (especially the neutraphils) periods. I know this can be great news as a BMT may be a cure. But, I also am very anxious as I know this is quite the process and can be high risk. I don't know of anyone who has had a Bone Marrow Transplant and any responses to others experiences and thoughts are appreciated. Hope all of you are doing well. Mar -- -- [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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