Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 My sister lives in Arizona and services (ABA) are free thru the state under the Dept. of Dissablities. Check into it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2002 Report Share Posted August 1, 2002 Hi Jan...that is so cool! Oregon is wonderful...we have everything here...the beautiful coast, mountains, plains, the high desert. It would be wonderful to all get together sometime. From my lips to God's ears. Hugs & Love... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2009 Report Share Posted November 22, 2009 > (PS) I still do not have a diagnosis,other than, it is a luekemia, but undiagnosed yet, Not Cml, Jak-2 Test Negative, OHSU has not found the type yet, oncologist says very rare, trying to arrange for me to go to OHSU for a possible trial. Says there may be some hope there, I am considering trying to see Dr Drucker my self, as locally I have brain and bone scans scheduled for next week by local oncologist, Iam considering skipping those and trying to get focused on diagnosis, as to see if I can get a treatment, specific. Hoping to hear from you You and C. And 's possible feedback, Iam stilll taking 3000 ml of Hydrox each day ,Off of gleevec after 6-weeks, Hope all are well and moving forward, Oregon  ______________________ Hi , I had just been wondering about you and whether you had gotten a correct diagnosis yet. I would try to get under the care of OHSU if that is possible (find out if the Oregon Health Plan would pay for you to be seeen there, it seems that they would). You actually don't even need a referral to make an appointment to see Dr. Druker but I would try to use your local oncologist to expedite it and not just go through the scheduler. Also, seeing any of the leukemia doctors would be fine, they are all excellent and they work as a team. That is Dr. Mauro and Dr. ?Dinienger. The other 2 doctors are actually in the clinic more than Dr. Druker and if you got into a particular trial you might be assinged to one of them anyway. But try first for Dr. Druker. What is the reason for the brain and bone scans? I am guessing to see if there is some spread?? Even if you have a rare form of leukemia that they can't name, I would think that hitting it with some of the standard leukemia chemotherapy might be beneficial. This would be something more like standard chemotherapy, like a series of IV treatments. I think that getting to OHSU is a priority for you....this is the top facility in the state. Also, if you need to stay over in Portland, ask to speak to the Leukemia Dept's social worker. They can get free hotel rooms from the American Cancer Society, and many hotels have a shuttle to OHSU. Keep us posted ....you are one of us, cml or not. ___________ As an aside, did you see the great Duck vs Wildcat game last night? Oregon on top, 44-41 after 2 over-times, a great come from behind win. Now on Thurs. Dec 7th.....the shootout at Autzen Stadium between the Ducks and the Beavers....the winner will go to the Rose Bowl. How is that? either way it will be an Oregon team!!! no USC, no Stanford, no Cal Bears. my best to you, from Eugene PS. I think you do know that my doctor is Dr. Druker, since 2-2000 _____________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2009 Report Share Posted December 6, 2009 Hi C. , I am going to see Dr. Mauro at OHSU on Dec 16th. I am very hopeful of a diagnosis and treatment. I'm still on the 3,000 ml of hydrox. daily and the high Wbc count is coming down slowly, but can't get it under 23,000, unfortunatly my need for two units of O NEG has moved up to once a week in the mean time, but the 16th gives a beacon of hope for my having a real chance to battle back and, just see if I can't hold out long enough to see another CIVIL WAR game like Thurs, night. Hope all is well, , in Waldport OR ( could you here the noise in Eugene?) ________________________________ From: hey00nanc <ncogan@...> Sent: Sun, November 22, 2009 11:23:15 AM Subject: [ ] Oregon  > (PS) I still do not have a diagnosis,other than, it is a luekemia, but undiagnosed yet, Not Cml, Jak-2 Test Negative, OHSU has not found the type yet, oncologist says very rare, trying to arrange for me to go to OHSU for a possible trial. Says there may be some hope there, I am considering trying to see Dr Drucker my self, as locally I have brain and bone scans scheduled for next week by local oncologist, Iam considering skipping those and trying to get focused on diagnosis, as to see if I can get a treatment, specific. Hoping to hear from you You and C. And 's possible feedback, Iam stilll taking 3000 ml of Hydrox each day ,Off of gleevec after 6-weeks, Hope all are well and moving forward, Oregon  ____________ _________ _ Hi , I had just been wondering about you and whether you had gotten a correct diagnosis yet. I would try to get under the care of OHSU if that is possible (find out if the Oregon Health Plan would pay for you to be seeen there, it seems that they would). You actually don't even need a referral to make an appointment to see Dr. Druker but I would try to use your local oncologist to expedite it and not just go through the scheduler. Also, seeing any of the leukemia doctors would be fine, they are all excellent and they work as a team. That is Dr. Mauro and Dr. ?Dinienger. The other 2 doctors are actually in the clinic more than Dr. Druker and if you got into a particular trial you might be assinged to one of them anyway. But try first for Dr. Druker. What is the reason for the brain and bone scans? I am guessing to see if there is some spread?? Even if you have a rare form of leukemia that they can't name, I would think that hitting it with some of the standard leukemia chemotherapy might be beneficial. This would be something more like standard chemotherapy, like a series of IV treatments. I think that getting to OHSU is a priority for you....this is the top facility in the state. Also, if you need to stay over in Portland, ask to speak to the Leukemia Dept's social worker. They can get free hotel rooms from the American Cancer Society, and many hotels have a shuttle to OHSU. Keep us posted ....you are one of us, cml or not. ___________ As an aside, did you see the great Duck vs Wildcat game last night? Oregon on top, 44-41 after 2 over-times, a great come from behind win. Now on Thurs. Dec 7th.....the shootout at Autzen Stadium between the Ducks and the Beavers....the winner will go to the Rose Bowl. How is that? either way it will be an Oregon team!!! no USC, no Stanford, no Cal Bears. my best to you, from Eugene PS. I think you do know that my doctor is Dr. Druker, since 2-2000 ____________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2009 Report Share Posted December 6, 2009 , You are in my prayers Anita ________________________________ From: john laghlin <johnnyelaughlin@...> Sent: Sun, December 6, 2009 12:17:16 AM Subject: Re: [ ] Oregon Hi C. , I am going to see Dr. Mauro at OHSU on Dec 16th. I am very hopeful of a diagnosis and treatment. I'm still on the 3,000 ml of hydrox. daily and the high Wbc count is coming down slowly, but can't get it under 23,000, unfortunatly my need for two units of O NEG has moved up to once a week in the mean time, but the 16th gives a beacon of hope for my having a real chance to battle back and, just see if I can't hold out long enough to see another CIVIL WAR game like Thurs, night. Hope all is well, , in Waldport OR ( could you here the noise in Eugene?) ____________ _________ _________ __ From: hey00nanc <ncoganuoregon (DOT) edu> groups (DOT) com Sent: Sun, November 22, 2009 11:23:15 AM Subject: [ ] Oregon > (PS) I still do not have a diagnosis,other than, it is a luekemia, but undiagnosed yet, Not Cml, Jak-2 Test Negative, OHSU has not found the type yet, oncologist says very rare, trying to arrange for me to go to OHSU for a possible trial. Says there may be some hope there, I am considering trying to see Dr Drucker my self, as locally I have brain and bone scans scheduled for next week by local oncologist, Iam considering skipping those and trying to get focused on diagnosis, as to see if I can get a treatment, specific. Hoping to hear from you You and C. And 's possible feedback, Iam stilll taking 3000 ml of Hydrox each day ,Off of gleevec after 6-weeks, Hope all are well and moving forward, Oregon  ____________ _________ _ Hi , I had just been wondering about you and whether you had gotten a correct diagnosis yet. I would try to get under the care of OHSU if that is possible (find out if the Oregon Health Plan would pay for you to be seeen there, it seems that they would). You actually don't even need a referral to make an appointment to see Dr. Druker but I would try to use your local oncologist to expedite it and not just go through the scheduler. Also, seeing any of the leukemia doctors would be fine, they are all excellent and they work as a team. That is Dr. Mauro and Dr. ?Dinienger. The other 2 doctors are actually in the clinic more than Dr. Druker and if you got into a particular trial you might be assinged to one of them anyway. But try first for Dr. Druker. What is the reason for the brain and bone scans? I am guessing to see if there is some spread?? Even if you have a rare form of leukemia that they can't name, I would think that hitting it with some of the standard leukemia chemotherapy might be beneficial. This would be something more like standard chemotherapy, like a series of IV treatments. I think that getting to OHSU is a priority for you....this is the top facility in the state. Also, if you need to stay over in Portland, ask to speak to the Leukemia Dept's social worker. They can get free hotel rooms from the American Cancer Society, and many hotels have a shuttle to OHSU. Keep us posted ....you are one of us, cml or not. ___________ As an aside, did you see the great Duck vs Wildcat game last night? Oregon on top, 44-41 after 2 over-times, a great come from behind win. Now on Thurs. Dec 7th.....the shootout at Autzen Stadium between the Ducks and the Beavers....the winner will go to the Rose Bowl. How is that? either way it will be an Oregon team!!! no USC, no Stanford, no Cal Bears. my best to you, from Eugene PS. I think you do know that my doctor is Dr. Druker, since 2-2000 ____________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2009 Report Share Posted December 6, 2009 And when the Earth claims our limbs, then shall we truly dance. Thankyou Anita, you are now in mine, Be well in all you do, Thanks, ________________________________ From: anita <awristen1@...> Sent: Sun, December 6, 2009 5:07:46 AM Subject: Re: [ ] Oregon  , You are in my prayers Anita ____________ _________ _________ __ From: john laghlin <johnnyelaughlin> groups (DOT) com Sent: Sun, December 6, 2009 12:17:16 AM Subject: Re: [ ] Oregon Hi C. , I am going to see Dr. Mauro at OHSU on Dec 16th. I am very hopeful of a diagnosis and treatment. I'm still on the 3,000 ml of hydrox. daily and the high Wbc count is coming down slowly, but can't get it under 23,000, unfortunatly my need for two units of O NEG has moved up to once a week in the mean time, but the 16th gives a beacon of hope for my having a real chance to battle back and, just see if I can't hold out long enough to see another CIVIL WAR game like Thurs, night. Hope all is well, , in Waldport OR ( could you here the noise in Eugene?) ____________ _________ _________ __ From: hey00nanc <ncoganuoregon (DOT) edu> groups (DOT) com Sent: Sun, November 22, 2009 11:23:15 AM Subject: [ ] Oregon > (PS) I still do not have a diagnosis,other than, it is a luekemia, but undiagnosed yet, Not Cml, Jak-2 Test Negative, OHSU has not found the type yet, oncologist says very rare, trying to arrange for me to go to OHSU for a possible trial. Says there may be some hope there, I am considering trying to see Dr Drucker my self, as locally I have brain and bone scans scheduled for next week by local oncologist, Iam considering skipping those and trying to get focused on diagnosis, as to see if I can get a treatment, specific. Hoping to hear from you You and C. And 's possible feedback, Iam stilll taking 3000 ml of Hydrox each day ,Off of gleevec after 6-weeks, Hope all are well and moving forward, Oregon  ____________ _________ _ Hi , I had just been wondering about you and whether you had gotten a correct diagnosis yet. I would try to get under the care of OHSU if that is possible (find out if the Oregon Health Plan would pay for you to be seeen there, it seems that they would). You actually don't even need a referral to make an appointment to see Dr. Druker but I would try to use your local oncologist to expedite it and not just go through the scheduler. Also, seeing any of the leukemia doctors would be fine, they are all excellent and they work as a team. That is Dr. Mauro and Dr. ?Dinienger. The other 2 doctors are actually in the clinic more than Dr. Druker and if you got into a particular trial you might be assinged to one of them anyway. But try first for Dr. Druker. What is the reason for the brain and bone scans? I am guessing to see if there is some spread?? Even if you have a rare form of leukemia that they can't name, I would think that hitting it with some of the standard leukemia chemotherapy might be beneficial. This would be something more like standard chemotherapy, like a series of IV treatments. I think that getting to OHSU is a priority for you....this is the top facility in the state. Also, if you need to stay over in Portland, ask to speak to the Leukemia Dept's social worker. They can get free hotel rooms from the American Cancer Society, and many hotels have a shuttle to OHSU. Keep us posted ....you are one of us, cml or not. ___________ As an aside, did you see the great Duck vs Wildcat game last night? Oregon on top, 44-41 after 2 over-times, a great come from behind win. Now on Thurs. Dec 7th.....the shootout at Autzen Stadium between the Ducks and the Beavers....the winner will go to the Rose Bowl. How is that? either way it will be an Oregon team!!! no USC, no Stanford, no Cal Bears. my best to you, from Eugene PS. I think you do know that my doctor is Dr. Druker, since 2-2000 ____________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2009 Report Share Posted December 6, 2009 > > Hi C. , I am going to see Dr. Mauro at OHSU on Dec 16th. I am very hopeful of a diagnosis and treatment. I'm still on the 3,000 ml of hydrox. daily and the high Wbc count is coming down slowly, but can't get it under 23,000, unfortunatly my need for two units of O NEG has moved up to once a week in the mean time, but the 16th gives a beacon of hope for my having a real chance to battle back and, just see if I can't hold out long enough to see another CIVIL WAR game like Thurs, night. Hope all is well, , in Waldport OR > ( could you here the noise in Eugene?) ______________________ Hi Walport , You will really like and be impressed by Dr. Mauro. He joined Dr. Druker in the early Gleevec days....and nice thing for you is that he is in the clinic more days and more available, and he is in charge of some trials. All those docs there will bang their heads together to figure out what your best plan of attack is. You do not have to be concerned about your white count of 23,000, that is not much. White count is hard to control with hydrox. and it bounces up and down.......but it sounds like the drug is also suppressing your other blood cells, so the need for the transfusions. Remember about looking into free and discounted rooms if you need to stay over in Portland...in my early trial, I was put up in some pretty fancy digs (Benson Hotel, etc). Also, the need for all this medical care right now should get you onto SS Disability much sooner. Now, about the Ducks! slow start, shot themselves in the foot a couple times with the interception and the personal foul penalty....but they know how to come back and fight and how to finish. You can be a Duck too .....this is a battle you can do, you can use all your life experience to your advantage. I watched at some friends house, and it is just down the road from Autzen stadium. Yes, you can hear the roar (118 decibles in the student section). The game against Ohio State (1-1-10) should be a good one....so that is the next one you can cheer on. The Ducks have another weapon now with LeGarrett's big body back in the mix. , I will be thinking of you on Dec. 16th....and sending you my healing wishes. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2009 Report Share Posted December 8, 2009 .....My son has been seeing Dr. Mauro since 2001. He is wonderful and caring. Smart and easy to talk to. I won't tell you what my son's WBC count was because it scares me to see it in print. But he is doing well and living his life. I don't believe that he has called in sick a day these past ten years. We live in Salem, so let me know if you need someone to talk to. I was in Eugene on Thursday, finishing up an art class. I didn't stay for the game because I thought it would be a real mess. But I watched it on tv. SO exciting!!!! My best.....Rosemary C. from Salem From: johnnyelaughlin@... Date: Sun, 6 Dec 2009 10:42:09 -0800 Subject: Re: [ ] Oregon And when the Earth claims our limbs, then shall we truly dance. Thankyou Anita, you are now in mine, Be well in all you do, Thanks, ________________________________ From: anita <awristen1@...> Sent: Sun, December 6, 2009 5:07:46 AM Subject: Re: [ ] Oregon , You are in my prayers Anita ____________ _________ _________ __ From: john laghlin <johnnyelaughlin> groups (DOT) com Sent: Sun, December 6, 2009 12:17:16 AM Subject: Re: [ ] Oregon Hi C. , I am going to see Dr. Mauro at OHSU on Dec 16th. I am very hopeful of a diagnosis and treatment. I'm still on the 3,000 ml of hydrox. daily and the high Wbc count is coming down slowly, but can't get it under 23,000, unfortunatly my need for two units of O NEG has moved up to once a week in the mean time, but the 16th gives a beacon of hope for my having a real chance to battle back and, just see if I can't hold out long enough to see another CIVIL WAR game like Thurs, night. Hope all is well, , in Waldport OR ( could you here the noise in Eugene?) ____________ _________ _________ __ From: hey00nanc <ncoganuoregon (DOT) edu> groups (DOT) com Sent: Sun, November 22, 2009 11:23:15 AM Subject: [ ] Oregon > (PS) I still do not have a diagnosis,other than, it is a luekemia, but undiagnosed yet, Not Cml, Jak-2 Test Negative, OHSU has not found the type yet, oncologist says very rare, trying to arrange for me to go to OHSU for a possible trial. Says there may be some hope there, I am considering trying to see Dr Drucker my self, as locally I have brain and bone scans scheduled for next week by local oncologist, Iam considering skipping those and trying to get focused on diagnosis, as to see if I can get a treatment, specific. Hoping to hear from you You and C. And 's possible feedback, Iam stilll taking 3000 ml of Hydrox each day ,Off of gleevec after 6-weeks, Hope all are well and moving forward, Oregon  ____________ _________ _ Hi , I had just been wondering about you and whether you had gotten a correct diagnosis yet. I would try to get under the care of OHSU if that is possible (find out if the Oregon Health Plan would pay for you to be seeen there, it seems that they would). You actually don't even need a referral to make an appointment to see Dr. Druker but I would try to use your local oncologist to expedite it and not just go through the scheduler. Also, seeing any of the leukemia doctors would be fine, they are all excellent and they work as a team. That is Dr. Mauro and Dr. ?Dinienger. The other 2 doctors are actually in the clinic more than Dr. Druker and if you got into a particular trial you might be assinged to one of them anyway. But try first for Dr. Druker. What is the reason for the brain and bone scans? I am guessing to see if there is some spread?? Even if you have a rare form of leukemia that they can't name, I would think that hitting it with some of the standard leukemia chemotherapy might be beneficial. This would be something more like standard chemotherapy, like a series of IV treatments. I think that getting to OHSU is a priority for you....this is the top facility in the state. Also, if you need to stay over in Portland, ask to speak to the Leukemia Dept's social worker. They can get free hotel rooms from the American Cancer Society, and many hotels have a shuttle to OHSU. Keep us posted ....you are one of us, cml or not. ___________ As an aside, did you see the great Duck vs Wildcat game last night? Oregon on top, 44-41 after 2 over-times, a great come from behind win. Now on Thurs. Dec 7th.....the shootout at Autzen Stadium between the Ducks and the Beavers....the winner will go to the Rose Bowl. How is that? either way it will be an Oregon team!!! no USC, no Stanford, no Cal Bears. my best to you, from Eugene PS. I think you do know that my doctor is Dr. Druker, since 2-2000 ____________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2009 Report Share Posted December 9, 2009 Dear Rosemary, thankyou for the kind words on Dr Mauro, Iam so looking forward to the trip and possible exact diagnosis, and so grateful for a doctor with compassion and knowledge. My red cell count is the real problem with me, the hemoglobin levels are always low, my WBC is leveled off at 23.9 thousand, was just surprised with all the hydroxyuria I have been on, it hasn't fallen any more, it was well over 130,000 a few times, so Iam fortunate, I hope your son continues his good health and best wishes to all of Salem for the Hollidays, thankyou , (I have seen some peoples Wbc's that have been up in the 300,000 range, thats frightening) ________________________________ From: Rosemary Cohen <rdc8043@...> < > Sent: Tue, December 8, 2009 2:08:59 PM Subject: RE: [ ] Oregon .....My son has been seeing Dr. Mauro since 2001. He is wonderful and caring. Smart and easy to talk to. I won't tell you what my son's WBC count was because it scares me to see it in print. But he is doing well and living his life. I don't believe that he has called in sick a day these past ten years. We live in Salem, so let me know if you need someone to talk to. I was in Eugene on Thursday, finishing up an art class. I didn't stay for the game because I thought it would be a real mess. But I watched it on tv. SO exciting!!!! My best.....Rosemary C. from Salem From: johnnyelaughlin@... Date: Sun, 6 Dec 2009 10:42:09 -0800 Subject: Re: [ ] Oregon And when the Earth claims our limbs, then shall we truly dance. Thankyou Anita, you are now in mine, Be well in all you do, Thanks, ________________________________ From: anita <awristen1@...> Sent: Sun, December 6, 2009 5:07:46 AM Subject: Re: [ ] Oregon , You are in my prayers Anita ____________ _________ _________ __ From: john laghlin <johnnyelaughlin> groups (DOT) com Sent: Sun, December 6, 2009 12:17:16 AM Subject: Re: [ ] Oregon Hi C. , I am going to see Dr. Mauro at OHSU on Dec 16th. I am very hopeful of a diagnosis and treatment. I'm still on the 3,000 ml of hydrox. daily and the high Wbc count is coming down slowly, but can't get it under 23,000, unfortunatly my need for two units of O NEG has moved up to once a week in the mean time, but the 16th gives a beacon of hope for my having a real chance to battle back and, just see if I can't hold out long enough to see another CIVIL WAR game like Thurs, night. Hope all is well, , in Waldport OR ( could you here the noise in Eugene?) ____________ _________ _________ __ From: hey00nanc <ncoganuoregon (DOT) edu> groups (DOT) com Sent: Sun, November 22, 2009 11:23:15 AM Subject: [ ] Oregon > (PS) I still do not have a diagnosis,other than, it is a luekemia, but undiagnosed yet, Not Cml, Jak-2 Test Negative, OHSU has not found the type yet, oncologist says very rare, trying to arrange for me to go to OHSU for a possible trial. Says there may be some hope there, I am considering trying to see Dr Drucker my self, as locally I have brain and bone scans scheduled for next week by local oncologist, Iam considering skipping those and trying to get focused on diagnosis, as to see if I can get a treatment, specific. Hoping to hear from you You and C. And 's possible feedback, Iam stilll taking 3000 ml of Hydrox each day ,Off of gleevec after 6-weeks, Hope all are well and moving forward, Oregon  ____________ _________ _ Hi , I had just been wondering about you and whether you had gotten a correct diagnosis yet. I would try to get under the care of OHSU if that is possible (find out if the Oregon Health Plan would pay for you to be seeen there, it seems that they would). You actually don't even need a referral to make an appointment to see Dr. Druker but I would try to use your local oncologist to expedite it and not just go through the scheduler. Also, seeing any of the leukemia doctors would be fine, they are all excellent and they work as a team. That is Dr. Mauro and Dr. ?Dinienger. The other 2 doctors are actually in the clinic more than Dr. Druker and if you got into a particular trial you might be assinged to one of them anyway. But try first for Dr. Druker. What is the reason for the brain and bone scans? I am guessing to see if there is some spread?? Even if you have a rare form of leukemia that they can't name, I would think that hitting it with some of the standard leukemia chemotherapy might be beneficial. This would be something more like standard chemotherapy, like a series of IV treatments. I think that getting to OHSU is a priority for you....this is the top facility in the state. Also, if you need to stay over in Portland, ask to speak to the Leukemia Dept's social worker. They can get free hotel rooms from the American Cancer Society, and many hotels have a shuttle to OHSU. Keep us posted ....you are one of us, cml or not. ___________ As an aside, did you see the great Duck vs Wildcat game last night? Oregon on top, 44-41 after 2 over-times, a great come from behind win. Now on Thurs. Dec 7th.....the shootout at Autzen Stadium between the Ducks and the Beavers....the winner will go to the Rose Bowl. How is that? either way it will be an Oregon team!!! no USC, no Stanford, no Cal Bears. my best to you, from Eugene PS. I think you do know that my doctor is Dr. Druker, since 2-2000 ____________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2010 Report Share Posted February 16, 2010 Bee; Oregon?, I hear that's a beuatiful state. What made u move to Canada? Jeanne $ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2010 Report Share Posted February 16, 2010 We are from Oregon, Christin From: JEANNE MONEY <jmoney46@...> Subject: [ ] Re: Oregon Date: Tuesday, February 16, 2010, 12:07 PM Â Bee; Oregon?, I hear that's a beuatiful state. What made u move to Canada? Jeanne $ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2010 Report Share Posted February 17, 2010 > > Bee; > > Oregon?, I hear that's a beuatiful state. What made u move to Canada? +++Hi Jeanne. I did not live in Oregon. I lived closer to Oregon when I was ordering from Mountain Rose Herbs. I moved from Calgary, Alberta to London, Ontario May 2008, which is 2,000 miles further. Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2010 Report Share Posted July 6, 2010 I agree with - The jury is still out on ofatumumab - but a lot of people are using it in various configurations so we should be smarter soon - In a message dated 7/6/2010 7:20:34 P.M. Eastern Daylight Time, cllcanada@... writes: Ofatumumab is immunosuppressive perhaps more so than Rituxan. It kills both good and bad B-cells and it take perhaps a year or more for your counts to come back to some level.How much they come back varies from patient to patient.Neutropenia and thrombocytopenia can occur.When reading on the web, note that this drug also went by the name HuMax-CD20 and is now called Arzerra.Here is the complete FDA drug information:http://www.accessdata.fda.gov/drugsatfda_docs/label/2009/125326lbl.pdf--- In , "potter_barb" <potter_barb@...> wrote:>> Thanks for your thoughts......I'm actually looking at an ofatumumab clinical trial.....any thoughts would be welcome on that as frontline treatment. FCR is off the table for me as frontline treatment. I'm fiercely protective of my immune system!> > > > > >> > > > > > > > The danger is real.� FCR is not a cure and the incidence of > > Richter's Transformation and myelodysplastic syndrome are significant (and are > > killers).> > > > > > > > I was seduced by the great CR numbers in studies (at the time Revlimid > > and Rituximab was just coming out, and the response rate was much lower > > than FCR).� > > > > > > > > Dr. Kipps showed me a trial of FCR and Lumiliximab, and I signed > > up.� I did not get the lumiliximab.> > > > > > > > My marrow was so damaged I could not complete more than four > > cycles.� > > > > > > > > BTW, when I contacted Stanford to look into CAL-101, they told me CLL > > was not a disease that was covered in this trial.> > > > > > > > The CAL-101 published results are not spectacular, to say the least.> > > > > > > > > > > > > > > > > > > > > > > > Posted by: "rrfman" > > > > rrfurman@ > > > > �> > > > > > > > rrfman > > > > > > > > > > > > > > > > Sun Feb�7,�2010 12:52�pm (PST) > > > > > > > > > > > > > > > > > > > > > > > > The data generated for most clinical trials was done using six cycles > > of therapy. Using fewer cycles may or may not compromise the effectiveness > > of the chemotherapy. We just do not know. In theory, hitting the CLL cells > > when they have already been damaged with more chemotherapy (i.e. the next > > cycle) will help make sure the die and do not repair themselves. As most of > > you have heard me say, I believe in doing what has been demonstrated as > > beneficial by trials.> > > > > > > > > > > > > > > > The theoretical risk of early relapse and needing additional therapy > > would be a big negative to stopping treatment early.> > > > > > > > > > > > > > > > I am concerned about the damaged caused by chemotherapy, but this is > > why we are using lenalidomide plus rituximab in untreated patients and > > CAL-101, etc. These non-chemotherapy agents offer a means of controlling the CLL > > without chemotherapy and associated toxicities.> > > > > > > > > > > > > > > > Rick Furman, MD> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2010 Report Share Posted July 6, 2010 Thanks for your thoughts......I'm actually looking at an ofatumumab clinical trial.....any thoughts would be welcome on that as frontline treatment. FCR is off the table for me as frontline treatment. I'm fiercely protective of my immune system! > > > > > > > > > The danger is real.� FCR is not a cure and the incidence of > Richter's Transformation and myelodysplastic syndrome are significant (and are > killers). > > > > > > I was seduced by the great CR numbers in studies (at the time Revlimid > and Rituximab was just coming out, and the response rate was much lower > than FCR).� > > > > > > Dr. Kipps showed me a trial of FCR and Lumiliximab, and I signed > up.� I did not get the lumiliximab. > > > > > > My marrow was so damaged I could not complete more than four > cycles.� > > > > > > BTW, when I contacted Stanford to look into CAL-101, they told me CLL > was not a disease that was covered in this trial. > > > > > > The CAL-101 published results are not spectacular, to say the least. > > > > > > > > > > > > > > > > > > Posted by: " rrfman " > > > rrfurman@ > > > � > > > > > > rrfman > > > > > > > > > > > > Sun Feb�7,�2010 12:52�pm (PST) > > > > > > > > > > > > > > > > > > The data generated for most clinical trials was done using six cycles > of therapy. Using fewer cycles may or may not compromise the effectiveness > of the chemotherapy. We just do not know. In theory, hitting the CLL cells > when they have already been damaged with more chemotherapy (i.e. the next > cycle) will help make sure the die and do not repair themselves. As most of > you have heard me say, I believe in doing what has been demonstrated as > beneficial by trials. > > > > > > > > > > > > The theoretical risk of early relapse and needing additional therapy > would be a big negative to stopping treatment early. > > > > > > > > > > > > I am concerned about the damaged caused by chemotherapy, but this is > why we are using lenalidomide plus rituximab in untreated patients and > CAL-101, etc. These non-chemotherapy agents offer a means of controlling the CLL > without chemotherapy and associated toxicities. > > > > > > > > > > > > Rick Furman, MD > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2010 Report Share Posted July 6, 2010 Ofatumumab is immunosuppressive perhaps more so than Rituxan. It kills both good and bad B-cells and it take perhaps a year or more for your counts to come back to some level. How much they come back varies from patient to patient. Neutropenia and thrombocytopenia can occur. When reading on the web, note that this drug also went by the name HuMax-CD20 and is now called Arzerra. Here is the complete FDA drug information: http://www.accessdata.fda.gov/drugsatfda_docs/label/2009/125326lbl.pdf > > > > > > > > > > > > The danger is real.� FCR is not a cure and the incidence of > > Richter's Transformation and myelodysplastic syndrome are significant (and are > > killers). > > > > > > > > I was seduced by the great CR numbers in studies (at the time Revlimid > > and Rituximab was just coming out, and the response rate was much lower > > than FCR).� > > > > > > > > Dr. Kipps showed me a trial of FCR and Lumiliximab, and I signed > > up.� I did not get the lumiliximab. > > > > > > > > My marrow was so damaged I could not complete more than four > > cycles.� > > > > > > > > BTW, when I contacted Stanford to look into CAL-101, they told me CLL > > was not a disease that was covered in this trial. > > > > > > > > The CAL-101 published results are not spectacular, to say the least. > > > > > > > > > > > > > > > > > > > > > > > > Posted by: " rrfman " > > > > rrfurman@ > > > > � > > > > > > > > rrfman > > > > > > > > > > > > > > > > Sun Feb�7,�2010 12:52�pm (PST) > > > > > > > > > > > > > > > > > > > > > > > > The data generated for most clinical trials was done using six cycles > > of therapy. Using fewer cycles may or may not compromise the effectiveness > > of the chemotherapy. We just do not know. In theory, hitting the CLL cells > > when they have already been damaged with more chemotherapy (i.e. the next > > cycle) will help make sure the die and do not repair themselves. As most of > > you have heard me say, I believe in doing what has been demonstrated as > > beneficial by trials. > > > > > > > > > > > > > > > > The theoretical risk of early relapse and needing additional therapy > > would be a big negative to stopping treatment early. > > > > > > > > > > > > > > > > I am concerned about the damaged caused by chemotherapy, but this is > > why we are using lenalidomide plus rituximab in untreated patients and > > CAL-101, etc. These non-chemotherapy agents offer a means of controlling the CLL > > without chemotherapy and associated toxicities. > > > > > > > > > > > > > > > > Rick Furman, MD > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2010 Report Share Posted July 6, 2010 I meant he was being too optimistic by saying " things might be totally different in one year " ...............I thought he was referring to new tx. options, that things would change there. So glad for you that your counts are good. Ellen R. potter_barb wrote: > Ellen, > My visit to see Dr. Kipps came about as a result of my local oncologist telling me it was time to think about treatment ....at that time my WBC was 87,000. All my other counts were well within normal. Needless to say I sought Dr. Kipp's opinion because I disagreed with my local onc's assessment. Dr. Kipp's assessment was mainly based on declining Hg and platelets; although in June my Hg was virtually unchanged from March and platelets are stable still. > > > > > > > Barb - Kipps said one year, things might be totally different in one > > > year, plus you may not need anything for more than a year. CAL-101 > > > thus far has been used for relapsed patients, you would be a newby. > > > Before ofatumumab hemoncs frequently started you off with Rituxan > > > alone, so perhaps they will now use ofatumumab alone. More likely, > > > they will opt for FCR or Bendamustine + R, or Bendamustine > > > +ofatumumab. But who knows? In a message dated 7/6/2010 10:14:38 > > > A.M. Eastern Daylight Time, potter_barb@... writes: > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2010 Report Share Posted July 6, 2010 Seems like EVERYTHING is bad for us to take. Why not just do what they did in the " old days " ...............periodic transfusions. All of it is strictly palliative, anyway. Ellen R. cllcanada wrote: > Ofatumumab is immunosuppressive perhaps more so than Rituxan. It kills both good and bad B-cells and it take perhaps a year or more for your counts to come back to some level. > How much they come back varies from patient to patient. > > Neutropenia and thrombocytopenia can occur. > > When reading on the web, note that this drug also went by the name HuMax-CD20 and is now called Arzerra. > > Here is the complete FDA drug information: > http://www.accessdata.fda.gov/drugsatfda_docs/label/2009/125326lbl.pdf > > > > > > > > > > > > > > > > > The danger is real.� FCR is not a cure and the incidence of > > > Richter's Transformation and myelodysplastic syndrome are significant (and are > > > killers). > > > > > > > > > > I was seduced by the great CR numbers in studies (at the time Revlimid > > > and Rituximab was just coming out, and the response rate was much lower > > > than FCR).� > > > > > > > > > > Dr. Kipps showed me a trial of FCR and Lumiliximab, and I signed > > > up.� I did not get the lumiliximab. > > > > > > > > > > My marrow was so damaged I could not complete more than four > > > cycles.� > > > > > > > > > > BTW, when I contacted Stanford to look into CAL-101, they told me CLL > > > was not a disease that was covered in this trial. > > > > > > > > > > The CAL-101 published results are not spectacular, to say the least. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Posted by: " rrfman " > > > > > rrfurman@ > > > > > � > > > > > > > > > > rrfman > > > > > > > > > > > > > > > > > > > > Sun Feb�7,�2010 12:52�pm (PST) > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > The data generated for most clinical trials was done using six cycles > > > of therapy. Using fewer cycles may or may not compromise the effectiveness > > > of the chemotherapy. We just do not know. In theory, hitting the CLL cells > > > when they have already been damaged with more chemotherapy (i.e. the next > > > cycle) will help make sure the die and do not repair themselves. As most of > > > you have heard me say, I believe in doing what has been demonstrated as > > > beneficial by trials. > > > > > > > > > > > > > > > > > > > > The theoretical risk of early relapse and needing additional therapy > > > would be a big negative to stopping treatment early. > > > > > > > > > > > > > > > > > > > > I am concerned about the damaged caused by chemotherapy, but this is > > > why we are using lenalidomide plus rituximab in untreated patients and > > > CAL-101, etc. These non-chemotherapy agents offer a means of controlling the CLL > > > without chemotherapy and associated toxicities. > > > > > > > > > > > > > > > > > > > > Rick Furman, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2010 Report Share Posted July 7, 2010 Ellen, sorry to punch a hole in your view of periodic transfusions as a " not bad " alternative to standard treatments, but they have their significant negatives too. With RBC transfusions, the main one is that one eventually develops iron overload, which can and will do very bad things to one's liver, and they are not easy, if not impossible, to reverse, both the liver damage and iron overload. With platelets transfusions, if you have a persistent problems with low platelets, you would need transfusions at least once every week. Because it is a plasma product from many people, you'd stand a good chance of getting with it eventually other persons' problems of one kind or another, and importantly, sooner or later you'd build up antibodies against other peoples' platelets and become refractory. And finally there is no transfusion solution for neutropenia. As with everything else there are individual differences in how people react to transfusions, and as with everything else, unfortunately, you don't know where you are on that continuum until you are well into it. And to make a broader point, treatments are not really the problem, the problem is in the ignorance in how to use them in a patient-tailored manner. You were right when you said be skeptical of the predictions by doctors. Whether you meant it this way or not, but futility of making predictions certainly is part of this spectrum of ignorance. And this in not meant to cast aspersion of doctors - they would be only all too happy to be able to be patient-centered in their diagnostics and treatments prescriptions if they could. But any attempt at such practice at this time would have to rely on the notoriously unreliable personal clinical experiences, rather than on well-validated hard science, and given the low emphasis upon and financial support for research in this area, the meaningful introduction of personalized diagnostics and treatments just isn't happening any time soon. Arnold > > Seems like EVERYTHING is bad for us to take. Why not just do what they did in the " old days " ...............periodic transfusions. All of it is strictly palliative, anyway. > Ellen R. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2010 Report Share Posted July 7, 2010 It does seem like everything poses risks, and perhaps for some people periodic transfusions would be okay. But for stage 4-ers who did that as a stop-gap just to be qualifiable for immunosuppressive treatment, it only lasted a few weeks - if that. > > > > > > > > > > > > > > > > > > The danger is real.� FCR is not a cure and the incidence of > > > > Richter's Transformation and myelodysplastic syndrome are significant (and are > > > > killers). > > > > > > > > > > > > I was seduced by the great CR numbers in studies (at the time Revlimid > > > > and Rituximab was just coming out, and the response rate was much lower > > > > than FCR).� > > > > > > > > > > > > Dr. Kipps showed me a trial of FCR and Lumiliximab, and I signed > > > > up.� I did not get the lumiliximab. > > > > > > > > > > > > My marrow was so damaged I could not complete more than four > > > > cycles.� > > > > > > > > > > > > BTW, when I contacted Stanford to look into CAL-101, they told me CLL > > > > was not a disease that was covered in this trial. > > > > > > > > > > > > The CAL-101 published results are not spectacular, to say the least. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Posted by: " rrfman " > > > > > > rrfurman@ > > > > > > � > > > > > > > > > > > > rrfman > > > > > > > > > > > > > > > > > > > > > > > > Sun Feb�7,�2010 12:52�pm (PST) > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > The data generated for most clinical trials was done using six cycles > > > > of therapy. Using fewer cycles may or may not compromise the effectiveness > > > > of the chemotherapy. We just do not know. In theory, hitting the CLL cells > > > > when they have already been damaged with more chemotherapy (i.e. the next > > > > cycle) will help make sure the die and do not repair themselves. As most of > > > > you have heard me say, I believe in doing what has been demonstrated as > > > > beneficial by trials. > > > > > > > > > > > > > > > > > > > > > > > > The theoretical risk of early relapse and needing additional therapy > > > > would be a big negative to stopping treatment early. > > > > > > > > > > > > > > > > > > > > > > > > I am concerned about the damaged caused by chemotherapy, but this is > > > > why we are using lenalidomide plus rituximab in untreated patients and > > > > CAL-101, etc. These non-chemotherapy agents offer a means of controlling the CLL > > > > without chemotherapy and associated toxicities. > > > > > > > > > > > > > > > > > > > > > > > > Rick Furman, MD > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2010 Report Share Posted July 7, 2010 Can't iron be chelated out right after the transfusion? Also, I raised my neuts to a whopping 7370 (range 1500-7800) by adding to my supplements no-flush niacin. An internet friend put me on to this.............she was able to go off her neulasta injections by taking niacin.............she found a study............she took doses higher than what I'm taking. True that transfusions are not a great answer, but they're a better answer than getting pancytopenia from chemo. Ellen R. apeckerm wrote: > Ellen, sorry to punch a hole in your view of periodic transfusions as a " not bad " alternative to standard treatments, but they have their significant negatives too. With RBC transfusions, the main one is that one eventually develops iron overload, which can and will do very bad things to one's liver, and they are not easy, if not impossible, to reverse, both the liver damage and iron overload. > > With platelets transfusions, if you have a persistent problems with low platelets, you would need transfusions at least once every week. Because it is a plasma product from many people, you'd stand a good chance of getting with it eventually other persons' problems of one kind or another, and importantly, sooner or later you'd build up antibodies against other peoples' platelets and become refractory. > > And finally there is no transfusion solution for neutropenia. > > As with everything else there are individual differences in how people react to transfusions, and as with everything else, unfortunately, you don't know where you are on that continuum until you are well into it. > > And to make a broader point, treatments are not really the problem, the problem is in the ignorance in how to use them in a patient-tailored manner. You were right when you said be skeptical of the predictions by doctors. Whether you meant it this way or not, but futility of making predictions certainly is part of this spectrum of ignorance. And this in not meant to cast aspersion of doctors - they would be only all too happy to be able to be patient-centered in their diagnostics and treatments prescriptions if they could. But any attempt at such practice at this time would have to rely on the notoriously unreliable personal clinical experiences, rather than on well-validated hard science, and given the low emphasis upon and financial support for research in this area, the meaningful introduction of personalized diagnostics and treatments just isn't happening any time soon. > > Arnold > > > > > > Seems like EVERYTHING is bad for us to take. Why not just do what they did in the " old days " ...............periodic transfusions. All of it is strictly palliative, anyway. > > Ellen R. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2010 Report Share Posted July 7, 2010 Thanks for providing this information on Arzerra;It certainly puts up some red flags for me...... > > > > > > > > > > > > > > > The danger is real.� FCR is not a cure and the incidence of > > > Richter's Transformation and myelodysplastic syndrome are significant (and are > > > killers). > > > > > > > > > > I was seduced by the great CR numbers in studies (at the time Revlimid > > > and Rituximab was just coming out, and the response rate was much lower > > > than FCR).� > > > > > > > > > > Dr. Kipps showed me a trial of FCR and Lumiliximab, and I signed > > > up.� I did not get the lumiliximab. > > > > > > > > > > My marrow was so damaged I could not complete more than four > > > cycles.� > > > > > > > > > > BTW, when I contacted Stanford to look into CAL-101, they told me CLL > > > was not a disease that was covered in this trial. > > > > > > > > > > The CAL-101 published results are not spectacular, to say the least. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Posted by: " rrfman " > > > > > rrfurman@ > > > > > � > > > > > > > > > > rrfman > > > > > > > > > > > > > > > > > > > > Sun Feb�7,�2010 12:52�pm (PST) > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > The data generated for most clinical trials was done using six cycles > > > of therapy. Using fewer cycles may or may not compromise the effectiveness > > > of the chemotherapy. We just do not know. In theory, hitting the CLL cells > > > when they have already been damaged with more chemotherapy (i.e. the next > > > cycle) will help make sure the die and do not repair themselves. As most of > > > you have heard me say, I believe in doing what has been demonstrated as > > > beneficial by trials. > > > > > > > > > > > > > > > > > > > > The theoretical risk of early relapse and needing additional therapy > > > would be a big negative to stopping treatment early. > > > > > > > > > > > > > > > > > > > > I am concerned about the damaged caused by chemotherapy, but this is > > > why we are using lenalidomide plus rituximab in untreated patients and > > > CAL-101, etc. These non-chemotherapy agents offer a means of controlling the CLL > > > without chemotherapy and associated toxicities. > > > > > > > > > > > > > > > > > > > > Rick Furman, MD > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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