Guest guest Posted January 19, 2009 Report Share Posted January 19, 2009 Hi Doug, I am no profesional but I know the Paw Paw Reg Cel has worked for many who had mets in liver and lungs etc.Why don't you google and get down Paw Paw Reg Cel and Immunocal. You can talk to Mr Dennis May via dennismay@... . We too pray for miracle for your brother and seems like you are so so close to him too. But do not wait only for miracles acto towards it please hurry. Vishwajith / Sri Lanka ________________________________ From: Doug <jst4fun895@...> Sent: Friday, January 16, 2009 11:35:33 PM Subject: [ ] My Brother Hi To All An update to some of you who might of followed my Journey with my brother ,53. I admitted into the Ferderal Hospital here in Las Vegas on Monday 1-12-09. He is in so much pain, his liver is the size of a football plus xxx, they did a cat scan and found multible tumors within it..as well as Lung, and lymph. They the doctors could not relieve his pain in any way shape or form.He was screaming that they were not helping him! They were giving him Dilaudid 4mg,this did not relieve his pain.Then they thought he was acting irrashional so they wanted to clear his head so they took him off the Dilaudid compleatly at 1:30 am on Tuesday without consulting with me.They called me at 7:00 am that morning and told me to get down there now! as my brother was extremly unrulely, Duh! Noted his ammonia levels are high.but they thought he was exagerating the pain...I got there and was so upset with the Doctor for taking him off,he said if the window would of been larger he would of jumped through it to end the pain.So brian wants out....Doctor comes in and asks some questions ,like what day is it,whats the date,where are you? being himself says I need my phone/calendar. Doctor puts him back on morphine,makes the order and the staff at the hospital forgets to place order. is extremly upset,I am extremly upset,after I tracked done the problem.I lost it with the Nursing Staff.(This Hospital is where the bomb scare was yesterday thurs.)By the Grace of God I was able to get into Hospice at 9:30 Thursday/last night.And he was given a chocolate shake after his meds last night.Most of all did not have pain last night.We are still praying for a miracle. Thanks Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 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 I am sorry if my questions have cast an appearance of negative however I just wanted to be sure that what I am experiencing is normal. Whatever that is. ________________________________ From: ROBERTA DOYLE <rcd1929@...> Sent: Thursday, February 26, 2009 8:34:52 PM Subject: Re: [ ] My brother 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 (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 27, 2009 Report Share Posted February 27, 2009 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 Cristi, If you are looking for Hope and Good News, you have come to the right site. In fact, all of the CML sites that I know offer HOPE and Good News. Just look at the survival statistics of CML patients. Almost nobody dies anymore from CML. Most people are living a fruitful life with little or few side effects and no longer post on these lists. The recent flurry of posts you have seen about side effects only affects a very small population of CML patients. These cases are very difficult to treat and require the top CML doctors on the planet to treat them. Our patients see these doctors and pass on the information to this group. 20 years ago CML was a fatal disease and a death sentence. With the discovery of Gleevec in 2000, this has changed. Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Tel: 561-429-3309 in Florida Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of christi fronczkiewicz Sent: February-26-09 7:54 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 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 <onthewtr@...>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: <%40> [mailto: > <%40>] On Behalf Of > christi fronczkiewicz > Sent: Thursday, February 26, 2009 4:54 PM > <%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...
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