Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 Dear Editor: It's not often you see your brother on the cover of Newsweek magazine. I have known my brother, Rollens, for over 3/4 of my life and everyday is a different adventure. Usually though, is very sad and frustrated, and most of the years I've known him have been years of great adversity. Although has come a long way in progress, my Dad, Mother and I work day and night trying to help , and try to make sure he is happy; if he is not happy none of us are. is with no doubt in my mind, the bravest person I know. He has been through more tests and scans then I can count...and during most of the tests, the procedures were often painful for . All in all does not cry and scream in pain like he did in the first five years of his life, and I feel that we are coming closer and closer to a " cure " for Autism. Until then, our love for and 's love for us will keep us going, and patience is something we have all learned in this. Patience is what any family with Autism needs, and in the end I know it will be worth the wait. Thank you, Rollens (14 year-old brother of Rollens) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2008 Report Share Posted October 23, 2008 Family, I just spoke to my brother's wife and she told me that he has been back and forth to the doctors for the last two weeks because he has been in pain and he has lost another 12 lbs. They think it might be pneumonia. Please keep him in your prayers and healing once again. They have put him on antibiotics and if this doesn't work, they will send him back to his doctors in ton. They have done lots of bloodwork and xrays already. Peace, Love, Light, and Joy, Cherylvisit me at: www.myspace.com/senegalady "You need to smile to your sorrow because you are more than your sorrow." Thich Nhat Hanh A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Cheryl we hold all of you in our hearts you have never left may peace and comfort fill your hearts in finding silence after all these years as with all your loved ones bless you Cheryl may your heart rest <3 your brother will be with you forever I believe you know this as you carry all that touch you in your heart I love you find peace sweetheart we hold you all very dear to our hearts with all my love jenny bless you all my lovesenegalady@... wrote: Hello Friends, My family has all arrived today to say goodbye to my brother. I will be surprised if he will last the night. When my last sister arrived tonight he said "I'm finished". We knew he was waiting for all of his sisters and brothers to be here. Please pray that he has an easy transition soon and an end to his suffering. Peace, Love, Light, and Joy, Cherylvisit me at: www.myspace.com/senegalady "You need to smile to your sorrow because you are more than your sorrow." Thich Nhat Hanh Check out smokin' hot deals on laptops, desktops and more from Dell. Shop Deals Tell me and I'll forget Show me and I may remember Involve me and I'll understandsending healing and soulful messages from the angels of mystic I'm following the rainbow of lovewritten by jenny'smedicine man Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Yes Liane, please do. Peace, Love, Light, and Joy, Cherylvisit me at: www.myspace.com/senegalady "You need to smile to your sorrow because you are more than your sorrow." Thich Nhat Hanh In a message dated 11/23/2008 12:45:27 A.M. Eastern Standard Time, liane@... writes: Cheryl dear, do you want me to send a prayer request right now over our networks?I can do it Honey.I will wait for your answer.much loveLianeTHE SENILITY PRAYER :Grant me the senility to forget the people I never liked anyway,The good fortune to run into the ones I do, and The eyesight to tell the differenceVisit our website:www..netor our Lightworking social Networkhttp://.ning.com/Download Our Toolbar:http://.OurOrganizationToolbar.comHumanity Healing Network 9947 Hull Street Road Suite 117 Richmond, VA 23236-1412 .(804)-859-3395Alfred Hitchcock - "Television has brought back murder into the home - where it belongs." On Sun, Nov 23, 2008 at 12:28 AM, <senegalady@...> wrote: Hello Friends, My family has all arrived today to say goodbye to my brother. I will be surprised if he will last the night. When my last sister arrived tonight he said "I'm finished". We knew he was waiting for all of his sisters and brothers to be here. Please pray that he has an easy transition soon and an end to his suffering. Peace, Love, Light, and Joy, Cherylvisit me at: www.myspace.com/senegalady "You need to smile to your sorrow because you are more than your sorrow." Thich Nhat Hanh Check out smokin' hot deals on laptops, desktops and more from Dell. Shop Deals Check out smokin' hot deals on laptops, desktops and more from Dell. Shop Deals Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2008 Report Share Posted December 5, 2008 Thank you , As you know he passed over on Nov. 30th with his family around him. I am doing ok. Peace, Love, Light, and Joy, Cherylvisit me at: www.myspace.com/senegalady "You need to smile to your sorrow because you are more than your sorrow." Thich Nhat Hanh In a message dated 11/23/2008 12:47:16 A.M. Eastern Standard Time, jsm2224@... writes: Cheryl we hold all of you in our hearts you have never left may peace and comfort fill your hearts in finding silence after all these years as with all your loved ones bless you Cheryl may your heart rest <3 your brother will be with you forever I believe you know this as you carry all that touch you in your heart I love you find peace sweetheart we hold you all very dear to our hearts with all my love jenny bless you all my lovesenegalady@... wrote: Hello Friends, My family has all arrived today to say goodbye to my brother. I will be surprised if he will last the night. When my last sister arrived tonight he said "I'm finished". We knew he was waiting for all of his sisters and brothers to be here. Please pray that he has an easy transition soon and an end to his suffering. Peace, Love, Light, and Joy, Cherylvisit me at: www.myspace.com/senegalady "You need to smile to your sorrow because you are more than your sorrow." Thich Nhat Hanh Check out smokin' hot deals on laptops, desktops and more from Dell. Shop Deals Tell me and I'll forget Show me and I may remember Involve me and I'll understandsending healing and soulful messages from the angels of mystic I'm following the rainbow of lovewritten by jenny'smedicine man Stay in touch with ALL of your friends: update your AIM, Bebo, Facebook, and MySpace pages with just one click. The NEW AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2008 Report Share Posted December 6, 2008 My Dear Sister in Heart, I did not know about the passing of your brother on Nov. 30th I haven't been on except for in a hurry to post poem on Beautiful Wonder Myspace helping abuse! Love & Prayers for you and yours and for added strength. I knew about your friend read bulletin yet, not your brother:( So, disappointed I didn't read sooner. Know I would had post a comment on Myspace for you showing respect and for Jim Love, Light, Blessings with Special Hugs Love you in Heart know Respectfully, Diane > > > > Hello Friends, > > My family has all arrived today to say goodbye to my brother. I will be > surprised if he will last the night. When my last sister arrived tonight he > said " I'm finished " . We knew he was waiting for all of his sisters and brothers > to be here. Please pray that he has an easy transition soon and an end to > his suffering. > > > > > > > Peace, Love, Light, and Joy, Cheryl > > visit me at: _www.myspace.www.myspace.<W_ (http://www.myspace.com/senegalady) > > > > " You need to smile to your sorrow because you are more than your sorrow. " > Thich Nhat Hanh > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ____________________________________ > Check out smokin' hot deals on laptops, desktops and more from Dell. _Shop > Deals_ > (http://pr.atwola.com/promoclk/100000075x1213345834x1200842686/aol? redir=http://ad.doubleclick.net/clk;209513277;31396581;l) > > > > > > > > > > > > > > > > > > > > Tell me and I'll forget > Show me and I may remember > Involve me and I'll understand > > > sending healing and soulful messages > from the angels of mystic > I'm following the rainbow of love > > written > by jenny's > medicine man > > > > > **************Stay in touch with ALL of your friends: update your AIM, Bebo, > Facebook, and MySpace pages with just one click. The NEW AOL.com. > (http://www.aol.com/?optin=new- dp & icid=aolcom40vanity & ncid=emlcntaolcom00000012) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Hi Christi, it does seem lately there are a lot of negatives, but mostly they are from newbies, who are just starting gleevec and having some severe side effects. there are many on this site who have had cml for years, myself 14 years, Skip ( i better have this name right) 34 years, and so on. After your brother gets into his routine with Gleevec and accepts what has happened to him, he will be so much better off. It's hard at first, especially I would think if you are a parent, but today is a great time to be dx with cml. There are so many new drugs in use, and being researched. When I was dx, in 1995, I was given 5 years to live, today there is no limit on your life, and most of us live full and productive lives. Give some of the folks time to answer your email, and all your questions, you will find this site is quite informative when you talk to the old timers. good luck, Bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 -  Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) 02/13/09 - XL trial ended due to side effects  From: christi fronczkiewicz <cfroncz@...> Subject: [ ] My brother Date: Thursday, February 26, 2009, 7:54 PM My brother was diagnosed with CML on January 17th. He is 34 years old and has a 16 month old daughter. Needless to say, he has had a tough time adjusting and accepting his diagnosis. His white cell count was 208,000 when he was admitted to the hospital and his spleen was extremely enlarged. He started with Hydrea and within a week started his Gleevec regimen. And although I cannot imagine the physical and mental stress that this diagnosis brings, it has been a tough adjustment and tough acceptance for myself and my entire family. I would like to know if anyone can direct me to some sites, or support groups that concentrate on, or are dedicated to LIVING with CML, not concentrating on negatives. It seems that a lot of the information that is floating around and most easily found is negative, concentrating on news that does not motivate. I just want him to have hope. To know that there is good news out there. I need to know that too. Thank you all. God Bless. Christi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 okay thanks Rhonda ________________________________ From: " Sionito@... " <Sionito@...> Sent: Thursday, February 26, 2009 8:56:59 PM Subject: Re: [ ] My brother Debbie... I thought i wouldn't make it if the first two months were any indication of how my 'new life' was going to be. It is rough in the beginning, but it does get better!!!!! Slowly more energy and less pain... But it takes awhile and i thought i would lose it in the meantime! I lost touch with friends because all i did was work and sleep. My daughter would complain i hadn't eaten with her in months or cooked. Eventually... I started doing everything as before. There are days i am tired and go to bed after dinner. And there are days i hurt, but not like it was the first few months all the time. Hang in there. It was hard for me to believe the 'longtimers' on the site when i was first diagnosed, but it's true.... It does get better. Not exactly like before CML but much better. Keep talking to us! Rhonda Sent from my Verizon Wireless BlackBerry [ ] My brother groups (DOT) com Date: Thursday, February 26, 2009, 7:54 PM My brother was diagnosed with CML on January 17th. He is 34 years old and has a 16 month old daughter. Needless to say, he has had a tough time adjusting and accepting his diagnosis. His white cell count was 208,000 when he was admitted to the hospital and his spleen was extremely enlarged. He started with Hydrea and within a week started his Gleevec regimen. And although I cannot imagine the physical and mental stress that this diagnosis brings, it has been a tough adjustment and tough acceptance for myself and my entire family. I would like to know if anyone can direct me to some sites, or support groups that concentrate on, or are dedicated to LIVING with CML, not concentrating on negatives. It seems that a lot of the information that is floating around and most easily found is negative, concentrating on news that does not motivate. I just want him to have hope. To know that there is good news out there. I need to know that too. Thank you all. God Bless. Christi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Dear Christi, You have come to the right site. I am a 66 year old grandmother, and wife and I was dx in 2004 I thought my life was ending. Here are the keys to a long life: Get a doctor that knows about CML Get on the right medicationI started with gleevec, then went to sprycel and am not on Tasigna. Have been on Tasigna for a year now. PCRU with a 5 log reduction. I feel great, Look great Active And plan to live a long long life. Tell your brother to be on top of his health control Read as much as he can about it Ask questions And we are all here to help him. There are people on this site that have had CML for 30, 20, 10 years and doing well. Aloha Sharon _____ From: [mailto: ] On Behalf Of christi fronczkiewicz Sent: Thursday, February 26, 2009 4:54 PM Subject: [ ] My brother My brother was diagnosed with CML on January 17th. He is 34 years old and has a 16 month old daughter. Needless to say, he has had a tough time adjusting and accepting his diagnosis. His white cell count was 208,000 when he was admitted to the hospital and his spleen was extremely enlarged. He started with Hydrea and within a week started his Gleevec regimen. And although I cannot imagine the physical and mental stress that this diagnosis brings, it has been a tough adjustment and tough acceptance for myself and my entire family. I would like to know if anyone can direct me to some sites, or support groups that concentrate on, or are dedicated to LIVING with CML, not concentrating on negatives. It seems that a lot of the information that is floating around and most easily found is negative, concentrating on news that does not motivate. I just want him to have hope. To know that there is good news out there. I need to know that too. Thank you all. God Bless. Christi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Hi Terry, Wow---I am sorry you suffered so much on Gleevec. I did not do well on Gleevec either but after less than a year on in (8 mo.) my dr.and I decided that quality of life was worth something and switched me to Sprycel. I did well on it but had a few side effects and when I got PE (after 3 years) they switched me to Tasigna. So far and from the beginning I have done well on Tasigna. Has your Doctor ever mentioned changing your medication??? I am also PCRU I just feel like one of the fortunate ones but I thank God every day because you just never know what lies ahead. I have blood tests once a month and a PCR test every three months. Take care and hope your quality of life is good. Aloha Sharon _____ From: [mailto: ] On Behalf Of Terry Dailey Sent: Friday, February 27, 2009 6:58 AM Subject: Re: [ ] My brother Christi, I was 37 when I was diagnosed in April of 04. I was very lucky I went to my regular doctor when I did because it saved my life. I still remember being at work(used to be a credit card fraud investigator) and getting a call from my regular doctors office from the receptionist saying that they were making me an appointment with an Oncologist(I had no clue what that was at the time) because my white cell count was through the roof. So I went to the Web MD site at work and boom, everything came up I had Leukemia. I will not get into all the stuff that happened over that first year but trust me it was hell. I will give you one hint, the woman I was married to left me over the disease. Like everyone else has said it is rough at first but gets better over time. I am one of those that still have side effects from Gleevec but they are managed by pain medication and other meds. As was also mentioned most of us with CML eventually have the side effects gradually go away, and some are lucky to barely miss a beat after they start treatment. I know with the economy the way it is, that CML is even scarier, but if he needs time off, hopefully his employer will give him the time he needs. My former employer was wonderful until Bank Of America took them over. The thing with CML is it does hit you like a ton of bricks when you first hear it from the doctor. CML does change most peoples lives in some ways, some more than others. As was also previously mentioned your son has to ask questions and be on top of his treatment and tell the doctor about any and all side effects he may have with whatever drug they decide to treat him with. One thing you need to understand about this group and nearly all others is we get new members who are scared to death about being diagnoised or having a loved one diagnoised, so you will see things that may seem to be negative. I have been in the group for a while and am in remission, but still once in a while need to vent. Your in the right place for great information and support, but you are sometimes going to read post that maybe a bit negative. The main thing is CML is not nearly as deadly as it once was, and even in my case I may not have the same quality of life I once did, but I would rather deal with those then the alternative. Just be there for him if he needs to talk, and wait and see how things go with his treatment. Hang in there things do get better. Debbie, Don't sweat posting even if you think it comes off negative. Not everyone reacts to treatment or our disease exactly the same way, and some of us are worse off then others, but this is where you can vent if you need to. As I just told Christi, your at the right place for it, because as I said you will get answers to your questions, and people that can and will empathize with what you are going through. Terry On Fri, Feb 27, 2009 at 1:11 AM, Sharon & Denny <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net>wrote: > Dear Christi, > > > You have come to the right site. > > I am a 66 year old grandmother, and wife and I was dx in 2004 > > I thought my life was ending. > > Here are the keys to a long life: > > Get a doctor that knows about CML > > Get on the right medicationI started with gleevec, then went to sprycel and > am not on Tasigna. > > Have been on Tasigna for a year now. > > PCRU with a 5 log reduction. > > I feel great, > > Look great > > Active > > And plan to live a long long life. > > Tell your brother to be on top of his health control > > Read as much as he can about it > > Ask questions > > And we are all here to help him. > > There are people on this site that have had CML for 30, 20, 10 years and > doing well. > > Aloha Sharon > > _____ > > From: groups (DOT) <mailto:%40> com <%40> [mailto: > groups (DOT) <mailto:%40> com <%40>] On Behalf Of > christi fronczkiewicz > Sent: Thursday, February 26, 2009 4:54 PM > groups (DOT) <mailto:%40> com <%40> > Subject: [ ] My brother > > My brother was diagnosed with CML on January 17th. He is 34 years old and > has a 16 month old daughter. Needless to say, he has had a tough time > adjusting and accepting his diagnosis. His white cell count was 208,000 > when > he was admitted to the hospital and his spleen was extremely enlarged. He > started with Hydrea and within a week started his Gleevec regimen. And > although I cannot imagine the physical and mental stress that this > diagnosis > brings, it has been a tough adjustment and tough acceptance for myself and > my entire family. I would like to know if anyone can direct me to some > sites, or support groups that concentrate on, or are dedicated to LIVING > with CML, not concentrating on negatives. It seems that a lot of the > information that is floating around and most easily found is negative, > concentrating on news that does not motivate. I just want him to have hope. > To know that there is good news out there. I need to know that too. Thank > you > all. God Bless. Christi > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Thanks Sharon, With my side effects managed life is not to bad. The worse thing that happened to me was really CML. I lost the ability to cope with things that before CML I would just shrug off and keep on going. It was like everything blew up in my face all at once. The wife left, I cannot work(and I was a desk jockey lol) and so I think everything happening at once sort of knocked me for a loop mentally. I tried to date after a while and ran into someone that was basically after pain meds. So needless to say I don't date anymore and just try to concentrate on raising my 15 year old son. The funny and sad thing is before everything else happened the first thing I was worried about was loosing my hair rotfl. Boy was I in for a surprise a few months later lol. I get by and keep living, when I start to feel that " Why me? " feeling I remember there are people allot worse off then I am. Terry On Fri, Feb 27, 2009 at 11:13 AM, Sharon & Denny <onthewtr@...>wrote: > Hi Terry, > > Wow---I am sorry you suffered so much on Gleevec. I did not do well on > Gleevec either but after less than a year on in (8 mo.) my dr.and I decided > that quality of life was worth something and switched me to Sprycel. I did > well on it but had a few side effects and when I got PE (after 3 years) > they switched me to Tasigna. So far and from the beginning I have done well > on Tasigna. Has your Doctor ever mentioned changing your medication??? I am > also PCRU > > I just feel like one of the fortunate ones but I thank God every day > because > you just never know what lies ahead. I have blood tests once a month and a > PCR test every three months. > > Take care and hope your quality of life is good. > > Aloha Sharon > > _____ > > From: <%40> [mailto: > <%40>] On Behalf Of Terry > Dailey > Sent: Friday, February 27, 2009 6:58 AM > <%40> > Subject: Re: [ ] My brother > > > Christi, > > I was 37 when I was diagnosed in April of 04. I was very lucky I went to my > regular doctor when I did because it saved my life. I still remember being > at work(used to be a credit card fraud investigator) and getting a call > from > my regular doctors office from the receptionist saying that they were > making > me an appointment with an Oncologist(I had no clue what that was at the > time) because my white cell count was through the roof. So I went to the > Web > MD site at work and boom, everything came up I had Leukemia. I will not get > into all the stuff that happened over that first year but trust me it was > hell. I will give you one hint, the woman I was married to left me over the > disease. > Like everyone else has said it is rough at first but gets better over time. > I am one of those that still have side effects from Gleevec but they are > managed by pain medication and other meds. As was also mentioned most of us > with CML eventually have the side effects gradually go away, and some are > lucky to barely miss a beat after they start treatment. > I know with the economy the way it is, that CML is even scarier, but if he > needs time off, hopefully his employer will give him the time he needs. My > former employer was wonderful until Bank Of America took them over. The > thing with CML is it does hit you like a ton of bricks when you first hear > it from the doctor. CML does change most peoples lives in some ways, some > more than others. As was also previously mentioned your son has to ask > questions and be on top of his treatment and tell the doctor about any and > all side effects he may have with whatever drug they decide to treat him > with. > One thing you need to understand about this group and nearly all others is > we get new members who are scared to death about being diagnoised or having > a loved one diagnoised, so you will see things that may seem to be > negative. > I have been in the group for a while and am in remission, but still once in > a while need to vent. Your in the right place for great information and > support, but you are sometimes going to read post that maybe a bit > negative. > The main thing is CML is not nearly as deadly as it once was, and even in > my > case I may not have the same quality of life I once did, but I would rather > deal with those then the alternative. Just be there for him if he needs to > talk, and wait and see how things go with his treatment. Hang in there > things do get better. > > Debbie, > > Don't sweat posting even if you think it comes off negative. Not everyone > reacts to treatment or our disease exactly the same way, and some of us are > worse off then others, but this is where you can vent if you need to. As I > just told Christi, your at the right place for it, because as I said you > will get answers to your questions, and people that can and will empathize > with what you are going through. > > Terry > > On Fri, Feb 27, 2009 at 1:11 AM, Sharon & Denny <onthewtrdiscobay (DOT) > <mailto:onthewtr%40discobay.net <onthewtr%2540discobay.net>> net>wrote: > > > Dear Christi, > > > > > > You have come to the right site. > > > > I am a 66 year old grandmother, and wife and I was dx in 2004 > > > > I thought my life was ending. > > > > Here are the keys to a long life: > > > > Get a doctor that knows about CML > > > > Get on the right medicationI started with gleevec, then went to sprycel > and > > am not on Tasigna. > > > > Have been on Tasigna for a year now. > > > > PCRU with a 5 log reduction. > > > > I feel great, > > > > Look great > > > > Active > > > > And plan to live a long long life. > > > > Tell your brother to be on top of his health control > > > > Read as much as he can about it > > > > Ask questions > > > > And we are all here to help him. > > > > There are people on this site that have had CML for 30, 20, 10 years and > > doing well. > > > > Aloha Sharon > > > > _____ > > > > From: groups (DOT) <mailto:%40<%2540>> > com > <%40> [mailto: > > groups (DOT) <mailto:%40<%2540>> > com > <%40>] On Behalf Of > > christi fronczkiewicz > > Sent: Thursday, February 26, 2009 4:54 PM > > groups (DOT) <mailto:%40<%2540>> > com > <%40> > > Subject: [ ] My brother > > > > My brother was diagnosed with CML on January 17th. He is 34 years old and > > has a 16 month old daughter. Needless to say, he has had a tough time > > adjusting and accepting his diagnosis. His white cell count was 208,000 > > when > > he was admitted to the hospital and his spleen was extremely enlarged. He > > started with Hydrea and within a week started his Gleevec regimen. And > > although I cannot imagine the physical and mental stress that this > > diagnosis > > brings, it has been a tough adjustment and tough acceptance for myself > and > > my entire family. I would like to know if anyone can direct me to some > > sites, or support groups that concentrate on, or are dedicated to LIVING > > with CML, not concentrating on negatives. It seems that a lot of the > > information that is floating around and most easily found is negative, > > concentrating on news that does not motivate. I just want him to have > hope. > > To know that there is good news out there. I need to know that too. Thank > > you > > all. God Bless. Christi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Debbie-  Your brother is not alone- he has a CML family now. Just like a family we all have good days and bad days - we laugh, we cry, but we are all there for each other. I'm still very new- coming up to my 2 year anniversary. The first year was crazy- bone pain, rashes, muscle spasms, night sweats, stomach distress everytime I took the medication....no eyebrows-smile. The good news- I was and am still alive. No I did not get back my old life but in some ways me and this life is even better. I know I appreciate friends and family more, I do stop to smell the roses especially when I do my 8 and 10 mile walks to train for the 1/2 marathon fundraisers. Before CML I thought treadmills were only good if they doubled as clothes racks. Now I'm either hitting the streets or hitting the gym. I don't have much oxygen due to low red blood cells and I have to take long naps afterward but I am doing more now than I did before I was diagnosed. I'm less likely to lose my temper when my 14 year old daughter works my nerves and are relationship is even closer.  There will be challenges -it is different for everyone but as long as we are alive there is hope. We are all warriors but some days the tide gets too rough and we vent our frustrations but we continue to fight- what could be more positive than that?  Welcome to the CML family to you and your brother. I don't think I would be doing so well if I did not have the support and eductaion from this group.Take good care and give your brother a big old hug.  Chi From: christi fronczkiewicz <cfroncz (DOT) com> Subject: [ ] My brother groups (DOT) com Date: Thursday, February 26, 2009, 7:54 PM My brother was diagnosed with CML on January 17th. He is 34 years old and has a 16 month old daughter. Needless to say, he has had a tough time adjusting and accepting his diagnosis. His white cell count was 208,000 when he was admitted to the hospital and his spleen was extremely enlarged. He started with Hydrea and within a week started his Gleevec regimen. And although I cannot imagine the physical and mental stress that this diagnosis brings, it has been a tough adjustment and tough acceptance for myself and my entire family. I would like to know if anyone can direct me to some sites, or support groups that concentrate on, or are dedicated to LIVING with CML, not concentrating on negatives. It seems that a lot of the information that is floating around and most easily found is negative, concentrating on news that does not motivate. I just want him to have hope. To know that there is good news out there. I need to know that too. Thank you all. God Bless. Christi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Thanks Terry ________________________________ From: Terry Dailey <terrydailey@...> Sent: Friday, February 27, 2009 8:58:11 AM Subject: Re: [ ] My brother Christi, I was 37 when I was diagnosed in April of 04. I was very lucky I went to my regular doctor when I did because it saved my life. I still remember being at work(used to be a credit card fraud investigator) and getting a call from my regular doctors office from the receptionist saying that they were making me an appointment with an Oncologist(I had no clue what that was at the time) because my white cell count was through the roof. So I went to the Web MD site at work and boom, everything came up I had Leukemia. I will not get into all the stuff that happened over that first year but trust me it was hell. I will give you one hint, the woman I was married to left me over the disease. Like everyone else has said it is rough at first but gets better over time. I am one of those that still have side effects from Gleevec but they are managed by pain medication and other meds. As was also mentioned most of us with CML eventually have the side effects gradually go away, and some are lucky to barely miss a beat after they start treatment. I know with the economy the way it is, that CML is even scarier, but if he needs time off, hopefully his employer will give him the time he needs. My former employer was wonderful until Bank Of America took them over. The thing with CML is it does hit you like a ton of bricks when you first hear it from the doctor. CML does change most peoples lives in some ways, some more than others. As was also previously mentioned your son has to ask questions and be on top of his treatment and tell the doctor about any and all side effects he may have with whatever drug they decide to treat him with. One thing you need to understand about this group and nearly all others is we get new members who are scared to death about being diagnoised or having a loved one diagnoised, so you will see things that may seem to be negative. I have been in the group for a while and am in remission, but still once in a while need to vent. Your in the right place for great information and support, but you are sometimes going to read post that maybe a bit negative. The main thing is CML is not nearly as deadly as it once was, and even in my case I may not have the same quality of life I once did, but I would rather deal with those then the alternative. Just be there for him if he needs to talk, and wait and see how things go with his treatment. Hang in there things do get better. Debbie, Don't sweat posting even if you think it comes off negative. Not everyone reacts to treatment or our disease exactly the same way, and some of us are worse off then others, but this is where you can vent if you need to. As I just told Christi, your at the right place for it, because as I said you will get answers to your questions, and people that can and will empathize with what you are going through. Terry On Fri, Feb 27, 2009 at 1:11 AM, Sharon & Denny <onthewtrdiscobay (DOT) net>wrote: > Dear Christi, > > > You have come to the right site. > > I am a 66 year old grandmother, and wife and I was dx in 2004 > > I thought my life was ending. > > Here are the keys to a long life: > > Get a doctor that knows about CML > > Get on the right medicationI started with gleevec, then went to sprycel and > am not on Tasigna. > > Have been on Tasigna for a year now. > > PCRU with a 5 log reduction. > > I feel great, > > Look great > > Active > > And plan to live a long long life. > > Tell your brother to be on top of his health control > > Read as much as he can about it > > Ask questions > > And we are all here to help him. > > There are people on this site that have had CML for 30, 20, 10 years and > doing well. > > Aloha Sharon > > _____ > > From: groups (DOT) com <%40groups .com> [mailto: > groups (DOT) com <%40groups .com>] On Behalf Of > christi fronczkiewicz > Sent: Thursday, February 26, 2009 4:54 PM > groups (DOT) com <%40groups .com> > Subject: [ ] My brother > > My brother was diagnosed with CML on January 17th. He is 34 years old and > has a 16 month old daughter. Needless to say, he has had a tough time > adjusting and accepting his diagnosis. His white cell count was 208,000 > when > he was admitted to the hospital and his spleen was extremely enlarged. He > started with Hydrea and within a week started his Gleevec regimen. And > although I cannot imagine the physical and mental stress that this > diagnosis > brings, it has been a tough adjustment and tough acceptance for myself and > my entire family. I would like to know if anyone can direct me to some > sites, or support groups that concentrate on, or are dedicated to LIVING > with CML, not concentrating on negatives. It seems that a lot of the > information that is floating around and most easily found is negative, > concentrating on news that does not motivate. I just want him to have hope. > To know that there is good news out there. I need to know that too. Thank > you > all. God Bless. Christi > > Quote Link to comment Share on other sites More sharing options...
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