Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 G'day Ray, I live in an hour from the SA border. I was dx on 25/7 on my 50th b'day LOL - like you with a routine blood test. I wasn't quite so shocked as it was the 3rd blood test over 6 weeks to determine what the problem was. I was well, but would get periods when I felt off and very tired over a 12 + months. I have just commenced Givec (4th day) and went crunch with a capital C. I was fine from Thursday (1st day) then Sunday I woke up with a splitting headache, cold like symptoms and swollen eyelids, sore eyes and feeling like I had sinusitis x 4. Today Monday had to go to work and felt like absolute crap, but got better as the day went on. The only good thing about Glivec is I can say, against what I have been told is that a lot of my joint aches and pains have gone! Good luck! Regards, Rodorbal Labradors & Dachshund Smooths Australia www.geocities.com/rodorbal http://au./group/Ozlabradors/ www.labradata.com _____ From: [mailto: ] On Behalf Of Karljohn75 Sent: Monday, 1 October 2007 5:48 PM Subject: [ ] Newly Diagnosed CML Dear everyone, I am a 31 year old married male Filipino-Australian living in Adelaide, Australia. I was recently diagnosed with CML. Like most of you here, it was an incidental finding in a routine yearly blood test. I do not have any symptoms when I was diagnosed that why we were so shocked about the diagnosis. My haematologist is Prof. of the IMVS and Royal Adelaide Hospital. He is a CML expert and is known worldwide for his research in CML. My WBC when I was diagnosed was 124 now its between 4 to 7. I had my bone marrow biopsy test done 2 weeks ago. I was told that the " morphology " result is not too bad and Prof. was pleased and he told me that I have a low grade CML. We are still waiting for the other report (chromosome). I have been taking hydrea for the past 4 weeks and I will start with Gleevec therapy mid-October. I will be included in an Australasian wide clinical trial designed by Prof. - Use of Nilotinib once they find out that I am not responding well with high dose of Gleevek (600mg). I hope to be active in this support group. Regards and best wishes to everyone. Ray Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 Hi Ray, Welcome to the group. I was 31 when I was diagnosed and now I'm 37. Prof. is indeed, one of the world CML experts and you're lucky to have him. We look forward to learning more from you. Take care, Tracey > > Dear everyone, > > I am a 31 year old married male Filipino-Australian living in > Adelaide, Australia. I was recently diagnosed with CML. Like most of > you here, it was an incidental finding in a routine yearly blood > test. I do not have any symptoms when I was diagnosed that why we > were so shocked about the diagnosis. > > My haematologist is Prof. of the IMVS and Royal > Adelaide Hospital. He is a CML expert and is known worldwide for his > research in CML. > > My WBC when I was diagnosed was 124 now its between 4 to 7. I had my > bone marrow biopsy test done 2 weeks ago. I was told that > the " morphology " result is not too bad and Prof. was pleased > and he told me that I have a low grade CML. We are still waiting for > the other report (chromosome). > > I have been taking hydrea for the past 4 weeks and I will start with > Gleevec therapy mid-October. I will be included in an Australasian > wide clinical trial designed by Prof. - Use of Nilotinib once > they find out that I am not responding well with high dose of Gleevek > (600mg). > > I hope to be active in this support group. Regards and best wishes to > everyone. > > Ray > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 Ray, I am 35, female, US - Dx 8/13/07 when they removed my spleen. WBC 280,000. No symptoms. (Well, except for the pain from the spleen bursting!) I am on my 4th day of gleevec (today will be 5th) and haven't done too bad. Threw up this morning, and have a constant low grade headache - but it still isn't as bad as it could be!! Hopefully, it won't get too much worse! Good luck! Tammy _____ From: [mailto: ] On Behalf Of Karljohn75 Sent: Monday, October 01, 2007 3:48 AM Subject: [ ] Newly Diagnosed CML Dear everyone, I am a 31 year old married male Filipino-Australian living in Adelaide, Australia. I was recently diagnosed with CML. Like most of you here, it was an incidental finding in a routine yearly blood test. I do not have any symptoms when I was diagnosed that why we were so shocked about the diagnosis. My haematologist is Prof. of the IMVS and Royal Adelaide Hospital. He is a CML expert and is known worldwide for his research in CML. My WBC when I was diagnosed was 124 now its between 4 to 7. I had my bone marrow biopsy test done 2 weeks ago. I was told that the " morphology " result is not too bad and Prof. was pleased and he told me that I have a low grade CML. We are still waiting for the other report (chromosome). I have been taking hydrea for the past 4 weeks and I will start with Gleevec therapy mid-October. I will be included in an Australasian wide clinical trial designed by Prof. - Use of Nilotinib once they find out that I am not responding well with high dose of Gleevek (600mg). I hope to be active in this support group. Regards and best wishes to everyone. Ray Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 Hi Ray, Welcome to the club that nobody realy wants to be a member of. You are very fortunate to have Dr. as your doctor. Like 90% of the newly diagnosed patients you will do really well on Gleevec. The normal starting dose is 400 mg. Studies have shown that if you start at a higer dose, you response is much quicker. Hoping to enrol you in the Zero Club real soon. Zavie Zavie (age 69) 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 3.2 log reduction Jun/07 3.6 log reduction Sep/07 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem > > Dear everyone, > > I am a 31 year old married male Filipino-Australian living in > Adelaide, Australia. I was recently diagnosed with CML. Like most of > you here, it was an incidental finding in a routine yearly blood > test. I do not have any symptoms when I was diagnosed that why we > were so shocked about the diagnosis. > > My haematologist is Prof. of the IMVS and Royal > Adelaide Hospital. He is a CML expert and is known worldwide for his > research in CML. > > My WBC when I was diagnosed was 124 now its between 4 to 7. I had my > bone marrow biopsy test done 2 weeks ago. I was told that > the " morphology " result is not too bad and Prof. was pleased > and he told me that I have a low grade CML. We are still waiting for > the other report (chromosome). > > I have been taking hydrea for the past 4 weeks and I will start with > Gleevec therapy mid-October. I will be included in an Australasian > wide clinical trial designed by Prof. - Use of Nilotinib once > they find out that I am not responding well with high dose of Gleevek > (600mg). > > I hope to be active in this support group. Regards and best wishes to > everyone. > > Ray > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 Hi Tammy, Welcome to the club that nobody wants to be a member of. Gleevec side effects tend to occur when you first start taking the drug and subside or disappear after a while. Give yourself a month on the drug and then see where you are at. Good luck, Zavie Zavie (age 69) 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 3.2 log reduction Jun/07 3.6 log reduction Sep/07 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem _____ From: [mailto: ] On Behalf Of Tammy Ferns Sent: October 1, 2007 3:47 PM Subject: RE: [ ] Newly Diagnosed CML Ray, I am 35, female, US - Dx 8/13/07 when they removed my spleen. WBC 280,000. No symptoms. (Well, except for the pain from the spleen bursting!) I am on my 4th day of gleevec (today will be 5th) and haven't done too bad. Threw up this morning, and have a constant low grade headache - but it still isn't as bad as it could be!! Hopefully, it won't get too much worse! Good luck! Tammy _____ From: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of Karljohn75 Sent: Monday, October 01, 2007 3:48 AM groups (DOT) <mailto:%40> com Subject: [ ] Newly Diagnosed CML Dear everyone, I am a 31 year old married male Filipino-Australian living in Adelaide, Australia. I was recently diagnosed with CML. Like most of you here, it was an incidental finding in a routine yearly blood test. I do not have any symptoms when I was diagnosed that why we were so shocked about the diagnosis. My haematologist is Prof. of the IMVS and Royal Adelaide Hospital. He is a CML expert and is known worldwide for his research in CML. My WBC when I was diagnosed was 124 now its between 4 to 7. I had my bone marrow biopsy test done 2 weeks ago. I was told that the " morphology " result is not too bad and Prof. was pleased and he told me that I have a low grade CML. We are still waiting for the other report (chromosome). I have been taking hydrea for the past 4 weeks and I will start with Gleevec therapy mid-October. I will be included in an Australasian wide clinical trial designed by Prof. - Use of Nilotinib once they find out that I am not responding well with high dose of Gleevek (600mg). I hope to be active in this support group. Regards and best wishes to everyone. Ray Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 Hi Tammy and Ray, I will echo what Zavie said about welcome to the club no one wants to be a member of. Lucky for us there are now meds that can keep us alive until a cure can be found. I was dxed in April of 04 and live in the US Terry On 10/1/07, Zavie miller <zmiller@...> wrote: > > Hi Tammy, > > Welcome to the club that nobody wants to be a member of. > > Gleevec side effects tend to occur when you first start taking the drug > and > subside or disappear after a while. Give yourself a month on the drug and > then see where you are at. > > Good luck, > > Zavie > > Zavie (age 69) > 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 > 3.2 log reduction Jun/07 > 3.6 log reduction Sep/07 > e-mail: zmiller@... <zmiller%40sympatico.ca> > Tel: 613-726-1117 > Fax: 309-296-0807 > Cell: 613-202-0204 > ID: zaviem > > _____ > > From: <%40> [mailto: > <%40>] On Behalf Of Tammy > Ferns > Sent: October 1, 2007 3:47 PM > <%40> > Subject: RE: [ ] Newly Diagnosed CML > > Ray, > I am 35, female, US - Dx 8/13/07 when they removed my spleen. WBC 280,000. > No symptoms. (Well, except for the pain from the spleen bursting!) > > I am on my 4th day of gleevec (today will be 5th) and haven't done too > bad. > Threw up this morning, and have a constant low grade headache - but it > still > isn't as bad as it could be!! Hopefully, it won't get too much worse! > > Good luck! > Tammy > > _____ > > From: groups (DOT) <mailto:% <%25>40> com > [mailto:groups (DOT) <mailto:% <%25>40> com] > On Behalf Of > Karljohn75 > Sent: Monday, October 01, 2007 3:48 AM > groups (DOT) <mailto:% <%25>40> com > Subject: [ ] Newly Diagnosed CML > > Dear everyone, > > I am a 31 year old married male Filipino-Australian living in > Adelaide, Australia. I was recently diagnosed with CML. Like most of > you here, it was an incidental finding in a routine yearly blood > test. I do not have any symptoms when I was diagnosed that why we > were so shocked about the diagnosis. > > My haematologist is Prof. of the IMVS and Royal > Adelaide Hospital. He is a CML expert and is known worldwide for his > research in CML. > > My WBC when I was diagnosed was 124 now its between 4 to 7. I had my > bone marrow biopsy test done 2 weeks ago. I was told that > the " morphology " result is not too bad and Prof. was pleased > and he told me that I have a low grade CML. We are still waiting for > the other report (chromosome). > > I have been taking hydrea for the past 4 weeks and I will start with > Gleevec therapy mid-October. I will be included in an Australasian > wide clinical trial designed by Prof. - Use of Nilotinib once > they find out that I am not responding well with high dose of Gleevek > (600mg). > > I hope to be active in this support group. Regards and best wishes to > everyone. > > Ray > > Quote Link to comment Share on other sites More sharing options...
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