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. >>> To post to this group, send email to [email protected] >>> To unsubscribe from this group, send email to CMLHope-u...@ >>> googlegroups.com >>> >>> 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]. >>> >>> 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. > 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 [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. 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 [email protected]. For more options, visit https://groups.google.com/groups/opt_out.
