Guest guest Posted April 21, 2007 Report Share Posted April 21, 2007 Hi Barbara, Sounds like we're thinking along the same lines --just different kind of business. Freelance writing is really not a way to make a living. Unless you're Dominick Dunne or another famous writer the pay is paltry. I wrote for a group of community papers in Connecticut while I was there for over a year in a clinical trial. 1500 words per article for $100 and I got one assignment per month. I felt like I was paying them! If I can figure out other services to ofer in addition to that then it would possibly be worthwhile. Best of luck to you! L Re: [ ] SSDI -- Jobs Hi , Good luck! It's the same in Houston. " Citizens With Disabilities " told me not to lie. (omit yes, lie no) I applied for a job which I was overqualified for and was turned down because I didn't fill out an application, which was not given to me when I gave them my resume. EEOC checked and said this was a usual way to get around hiring someone over 60 or with disabilities, and there was nothing they could do. Sorry I don't have better news. Denice Loewenkamp <loewen1cox (DOT) <mailto:loewen1%40cox.net> net> wrote: Hi, Is anyone else job hunting in an attempt to get off SSDI and make a living wage? I've been consistently job hunting for three years in Washington, DC and Northern Virginia and have had no luck at all. Instead I have had some luck getting part-time temp work of various sorts to supplement my paltry disability check. However, when I can't find a temp job my family has to chip in because the monthly check is way under the poverty level. I've sent out hundreds of resumes for fulltime work but to no avail. I send to jobs thaat really exist from a few websites. Today, Monster.com sent out an article about how difficult it is to find a job with a disability. They said that we are a large part of the people in this country living in poverty. Any ideas? Any comments or experiences? My chronological background is such that the gap right after I was diagnosed is impossible to completely cover unless I just plain lie. It's starting to look like a good idea. Also, I'm 61 and though I don't look really old I do look my age which is supposedly the " new middle age. " Again, comments please? L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2007 Report Share Posted April 21, 2007 I have 40 years of corporate experience in the Human Resources and Finance arenas, a college degree and have owned 2 retail businesses. Of course, those barely high school grads in the SS Office who have volumes of knowledge about CML say my condition is controlled by my treatment and although I may have some " discomfort " I should be able to work a normal job. My problem is not my experience or knowledge but the limitations brought on by Gleevec side effects. They are tolerable as far as severity; however, do not allow me to be a very productive employee working on someone else's schedule and requirements. That's why I'm trying to find things that would allow flexible hours controlled by me. Since I'm eligible for early SS benefits in the next few months, I would gladly accept SSDI until I could get my business income up to the maximum level and then convert over to regular SS benefits. It really angers me that it takes an attorney plus valuable time out of my life to get something that was set up to help those of us unable to work in a regular workforce. It is so unfair that CML seems to be lumped in with the other types of leukemia that have some history of cure or longevity. Sorry, had to vent a little here. Barbara Hundley My Personal Assistant Fayetteville, GA Tel: 678-817-6805 Fax: 678-884-8186 <http://www.my-personal-assist.com> www.my-personal-assist.com _____ From: [mailto: ] On Behalf Of Loewenkamp Sent: Saturday, April 21, 2007 12:04 PM Subject: Re: [ ] SSDI -- Jobs-Barbaa Hi Barbara, Sounds like we're thinking along the same lines --just different kind of business. Freelance writing is really not a way to make a living. Unless you're Dominick Dunne or another famous writer the pay is paltry. I wrote for a group of community papers in Connecticut while I was there for over a year in a clinical trial. 1500 words per article for $100 and I got one assignment per month. I felt like I was paying them! If I can figure out other services to ofer in addition to that then it would possibly be worthwhile. Best of luck to you! L Re: [ ] SSDI -- Jobs Hi , Good luck! It's the same in Houston. " Citizens With Disabilities " told me not to lie. (omit yes, lie no) I applied for a job which I was overqualified for and was turned down because I didn't fill out an application, which was not given to me when I gave them my resume. EEOC checked and said this was a usual way to get around hiring someone over 60 or with disabilities, and there was nothing they could do. Sorry I don't have better news. Denice Loewenkamp <loewen1cox (DOT) <mailto:loewen1%40cox.net> net> wrote: Hi, Is anyone else job hunting in an attempt to get off SSDI and make a living wage? I've been consistently job hunting for three years in Washington, DC and Northern Virginia and have had no luck at all. Instead I have had some luck getting part-time temp work of various sorts to supplement my paltry disability check. However, when I can't find a temp job my family has to chip in because the monthly check is way under the poverty level. I've sent out hundreds of resumes for fulltime work but to no avail. I send to jobs thaat really exist from a few websites. Today, Monster.com sent out an article about how difficult it is to find a job with a disability. They said that we are a large part of the people in this country living in poverty. Any ideas? Any comments or experiences? My chronological background is such that the gap right after I was diagnosed is impossible to completely cover unless I just plain lie. It's starting to look like a good idea. Also, I'm 61 and though I don't look really old I do look my age which is supposedly the " new middle age. " Again, comments please? L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2007 Report Share Posted April 22, 2007 Hi Barbara, Clearly, I didn't know your situation. Are you on SSDI now? It doesn't sound like it and that is the immediate problem until you can get SS. You signed off " My Personal Assistant " which sounds like the name of a business. Is it? I do scanthe various leukemia lists but I haven't read your story--date of diagnosis, medication and dosage, side effects and remedies. If you have time, please send those. I'm sure others have weighed in but I've been the patient of a number of good to excellent doctors who shared information that I haven't heard elsewhere. And it's just FINE to vent. I'll stick my tongue out at the Social Security Offices in Washington the next time I drive by. Best wishes, Re: [ ] SSDI -- Jobs Hi , Good luck! It's the same in Houston. " Citizens With Disabilities " told me not to lie. (omit yes, lie no) I applied for a job which I was overqualified for and was turned down because I didn't fill out an application, which was not given to me when I gave them my resume. EEOC checked and said this was a usual way to get around hiring someone over 60 or with disabilities, and there was nothing they could do. Sorry I don't have better news. Denice Loewenkamp <loewen1cox (DOT) <mailto:loewen1%40cox.net> net> wrote: Hi, Is anyone else job hunting in an attempt to get off SSDI and make a living wage? I've been consistently job hunting for three years in Washington, DC and Northern Virginia and have had no luck at all. Instead I have had some luck getting part-time temp work of various sorts to supplement my paltry disability check. However, when I can't find a temp job my family has to chip in because the monthly check is way under the poverty level. I've sent out hundreds of resumes for fulltime work but to no avail. I send to jobs thaat really exist from a few websites. Today, Monster.com sent out an article about how difficult it is to find a job with a disability. They said that we are a large part of the people in this country living in poverty. Any ideas? Any comments or experiences? My chronological background is such that the gap right after I was diagnosed is impossible to completely cover unless I just plain lie. It's starting to look like a good idea. Also, I'm 61 and though I don't look really old I do look my age which is supposedly the " new middle age. " Again, comments please? L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2007 Report Share Posted April 22, 2007 I was diagnosed in July 06, on 400mg Gleevec. My Personal Assistant is one of the home businesses I've started because I have control over the hours and can still use my experience. I have an appeal for my SSDI and waiting the response. My side effects are tolerable but I would not be able to hold up to work hours as before. My counts have been in the good range, but next month, the doctor is doing a fish and the other(?) test to really see how I'm doing. Question to those who have been into this longer than I - if I'm still at 100% bad Chromosome, does that mean the Gleevec is not working? Can you advance to Advanced or Blast stage and still have normal blood count? Barbara Hundley My Personal Assistant Fayetteville, GA Tel: 678-817-6805 Fax: 678-884-8186 <http://www.my-personal-assist.com> www.my-personal-assist.com _____ From: [mailto: ] On Behalf Of Loewenkamp Sent: Sunday, April 22, 2007 4:44 PM Subject: Re: [ ] SSDI -- Jobs-Barbaa Hi Barbara, Clearly, I didn't know your situation. Are you on SSDI now? It doesn't sound like it and that is the immediate problem until you can get SS. You signed off " My Personal Assistant " which sounds like the name of a business. Is it? I do scanthe various leukemia lists but I haven't read your story--date of diagnosis, medication and dosage, side effects and remedies. If you have time, please send those. I'm sure others have weighed in but I've been the patient of a number of good to excellent doctors who shared information that I haven't heard elsewhere. And it's just FINE to vent. I'll stick my tongue out at the Social Security Offices in Washington the next time I drive by. Best wishes, Re: [ ] SSDI -- Jobs Hi , Good luck! It's the same in Houston. " Citizens With Disabilities " told me not to lie. (omit yes, lie no) I applied for a job which I was overqualified for and was turned down because I didn't fill out an application, which was not given to me when I gave them my resume. EEOC checked and said this was a usual way to get around hiring someone over 60 or with disabilities, and there was nothing they could do. Sorry I don't have better news. Denice Loewenkamp <loewen1cox (DOT) <mailto:loewen1%40cox.net> net> wrote: Hi, Is anyone else job hunting in an attempt to get off SSDI and make a living wage? I've been consistently job hunting for three years in Washington, DC and Northern Virginia and have had no luck at all. Instead I have had some luck getting part-time temp work of various sorts to supplement my paltry disability check. However, when I can't find a temp job my family has to chip in because the monthly check is way under the poverty level. I've sent out hundreds of resumes for fulltime work but to no avail. I send to jobs thaat really exist from a few websites. Today, Monster.com sent out an article about how difficult it is to find a job with a disability. They said that we are a large part of the people in this country living in poverty. Any ideas? Any comments or experiences? My chronological background is such that the gap right after I was diagnosed is impossible to completely cover unless I just plain lie. It's starting to look like a good idea. Also, I'm 61 and though I don't look really old I do look my age which is supposedly the " new middle age. " Again, comments please? L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 Hi Barbara, I hope you've been followed closer than just having CBC's since you were diagnosed last July. Typically, doctors will do a BMB and/or FISH every three months until you reach CCR then once you have achieved a CCR (complete cytogenetic response), they will follow you with PCR's. It's important to keep a close watch on your marrow until you are in CCR because changes will be seen in the marrow that can't be seen in any blood test. The condition of your marrow will also tell you what kind of risk you face of accelerating. To answer your questions, if you still have 100% Philadelphia chromosomes after 9 or 10 months, yes this would indicate that Gleevec isn't working for you. You should have at least some reduction in Philadelphia chromosomes at this point. Also, yes, it is possible to accelerate with a normal white count but it's very rare. The most risk you have of accelerating is before you reach CCR which is why most doctors will do BMB's every three or six months until you reach CCR. Take care, Tracey dx Jan 2002 > > I was diagnosed in July 06, on 400mg Gleevec. My Personal Assistant is one > of the home businesses I've started because I have control over the hours > and can still use my experience. I have an appeal for my SSDI and waiting > the response. My side effects are tolerable but I would not be able to hold > up to work hours as before. My counts have been in the good range, but next > month, the doctor is doing a fish and the other(?) test to really see how > I'm doing. Question to those who have been into this longer than I - if I'm > still at 100% bad Chromosome, does that mean the Gleevec is not working? Can > you advance to Advanced or Blast stage and still have normal blood count? > > > > Barbara Hundley > > My Personal Assistant > > Fayetteville, GA > > Tel: 678-817-6805 > > Fax: 678-884-8186 > > <http://www.my-personal-assist.com> www.my-personal-assist.com > > _____ > > From: [mailto: ] On Behalf Of > Loewenkamp > Sent: Sunday, April 22, 2007 4:44 PM > > Subject: Re: [ ] SSDI -- Jobs-Barbaa > > > > Hi Barbara, > > Clearly, I didn't know your situation. Are you on SSDI now? It doesn't sound > like it and that is the immediate problem until you can get SS. You signed > off " My Personal Assistant " which sounds like the name of a business. Is it? > I do scanthe various leukemia lists but I haven't read your story-- date of > diagnosis, medication and dosage, side effects and remedies. If you have > time, please send those. I'm sure others have weighed in but I've been the > patient of a number of good to excellent doctors who shared information that > I haven't heard elsewhere. And it's just FINE to vent. I'll stick my tongue > out at the Social Security Offices in Washington the next time I drive by. > > Best wishes, > > > Re: [ ] SSDI -- Jobs > > Hi , > Good luck! It's the same in Houston. " Citizens With Disabilities " told me > not to lie. > (omit yes, lie no) > I applied for a job which I was overqualified for and was turned down > because I didn't fill out > an application, which was not given to me when I gave them my resume. > EEOC checked and said this was a usual way to get around hiring someone over > 60 or > with disabilities, and there was nothing they could do. > Sorry I don't have better news. > Denice > > Loewenkamp <loewen1cox (DOT) <mailto:loewen1%40cox.net> net> wrote: > Hi, > > Is anyone else job hunting in an attempt to get off SSDI and make a living > wage? I've been consistently job hunting for three years in Washington, DC > and Northern Virginia and have had no luck at all. Instead I have had some > luck getting part-time temp work of various sorts to supplement my paltry > disability check. However, when I can't find a temp job my family has to > chip in because the monthly check is way under the poverty level. I've sent > out hundreds of resumes for fulltime work but to no avail. I send to jobs > thaat really exist from a few websites. Today, Monster.com sent out an > article about how difficult it is to find a job with a disability. They said > that we are a large part of the people in this country living in poverty. > > Any ideas? Any comments or experiences? My chronological background is such > that the gap right after I was diagnosed is impossible to completely cover > unless I just plain lie. It's starting to look like a good idea. Also, I'm > 61 and though I don't look really old I do look my age which is supposedly > the " new middle age. " > > Again, comments please? > > L > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 I had a BMB in July when diagnosed. I was 100%ph+, which they had a hard time finding at first, and they also found a 2nd mutation. I'm due for another BMB but haven't scheduled yet. I have only had the FISH done once since diagnosed. Guess I need to ask some more questions. Barbara Hundley My Personal Assistant Fayetteville, GA Tel: 678-817-6805 Fax: 678-884-8186 <http://www.my-personal-assist.com> www.my-personal-assist.com _____ From: [mailto: ] On Behalf Of Tracey Sent: Monday, April 23, 2007 11:30 AM Subject: Re: [ ] SSDI -- Jobs-Barbaa Hi Barbara, I hope you've been followed closer than just having CBC's since you were diagnosed last July. Typically, doctors will do a BMB and/or FISH every three months until you reach CCR then once you have achieved a CCR (complete cytogenetic response), they will follow you with PCR's. It's important to keep a close watch on your marrow until you are in CCR because changes will be seen in the marrow that can't be seen in any blood test. The condition of your marrow will also tell you what kind of risk you face of accelerating. To answer your questions, if you still have 100% Philadelphia chromosomes after 9 or 10 months, yes this would indicate that Gleevec isn't working for you. You should have at least some reduction in Philadelphia chromosomes at this point. Also, yes, it is possible to accelerate with a normal white count but it's very rare. The most risk you have of accelerating is before you reach CCR which is why most doctors will do BMB's every three or six months until you reach CCR. Take care, Tracey dx Jan 2002 > > I was diagnosed in July 06, on 400mg Gleevec. My Personal Assistant is one > of the home businesses I've started because I have control over the hours > and can still use my experience. I have an appeal for my SSDI and waiting > the response. My side effects are tolerable but I would not be able to hold > up to work hours as before. My counts have been in the good range, but next > month, the doctor is doing a fish and the other(?) test to really see how > I'm doing. Question to those who have been into this longer than I - if I'm > still at 100% bad Chromosome, does that mean the Gleevec is not working? Can > you advance to Advanced or Blast stage and still have normal blood count? > > > > Barbara Hundley > > My Personal Assistant > > Fayetteville, GA > > Tel: 678-817-6805 > > Fax: 678-884-8186 > > <http://www.my- <http://www.my-personal-assist.com> personal-assist.com> www.my-personal-assist.com > > _____ > > From: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of > Loewenkamp > Sent: Sunday, April 22, 2007 4:44 PM > groups (DOT) <mailto:%40> com > Subject: Re: [ ] SSDI -- Jobs-Barbaa > > > > Hi Barbara, > > Clearly, I didn't know your situation. Are you on SSDI now? It doesn't sound > like it and that is the immediate problem until you can get SS. You signed > off " My Personal Assistant " which sounds like the name of a business. Is it? > I do scanthe various leukemia lists but I haven't read your story-- date of > diagnosis, medication and dosage, side effects and remedies. If you have > time, please send those. I'm sure others have weighed in but I've been the > patient of a number of good to excellent doctors who shared information that > I haven't heard elsewhere. And it's just FINE to vent. I'll stick my tongue > out at the Social Security Offices in Washington the next time I drive by. > > Best wishes, > > > Re: [ ] SSDI -- Jobs > > Hi , > Good luck! It's the same in Houston. " Citizens With Disabilities " told me > not to lie. > (omit yes, lie no) > I applied for a job which I was overqualified for and was turned down > because I didn't fill out > an application, which was not given to me when I gave them my resume. > EEOC checked and said this was a usual way to get around hiring someone over > 60 or > with disabilities, and there was nothing they could do. > Sorry I don't have better news. > Denice > > Loewenkamp <loewen1cox (DOT) <mailto:loewen1%40cox.net> net> wrote: > Hi, > > Is anyone else job hunting in an attempt to get off SSDI and make a living > wage? I've been consistently job hunting for three years in Washington, DC > and Northern Virginia and have had no luck at all. Instead I have had some > luck getting part-time temp work of various sorts to supplement my paltry > disability check. However, when I can't find a temp job my family has to > chip in because the monthly check is way under the poverty level. I've sent > out hundreds of resumes for fulltime work but to no avail. I send to jobs > thaat really exist from a few websites. Today, Monster.com sent out an > article about how difficult it is to find a job with a disability. They said > that we are a large part of the people in this country living in poverty. > > Any ideas? Any comments or experiences? My chronological background is such > that the gap right after I was diagnosed is impossible to completely cover > unless I just plain lie. It's starting to look like a good idea. Also, I'm > 61 and though I don't look really old I do look my age which is supposedly > the " new middle age. " > > Again, comments please? > > L > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 She said she was going to do the FISH and the PCR on my next visit. Barbara Hundley My Personal Assistant Fayetteville, GA Tel: 678-817-6805 Fax: 678-884-8186 <http://www.my-personal-assist.com> www.my-personal-assist.com _____ From: [mailto: ] On Behalf Of Tracey Sent: Monday, April 23, 2007 11:30 AM Subject: Re: [ ] SSDI -- Jobs-Barbaa Hi Barbara, I hope you've been followed closer than just having CBC's since you were diagnosed last July. Typically, doctors will do a BMB and/or FISH every three months until you reach CCR then once you have achieved a CCR (complete cytogenetic response), they will follow you with PCR's. It's important to keep a close watch on your marrow until you are in CCR because changes will be seen in the marrow that can't be seen in any blood test. The condition of your marrow will also tell you what kind of risk you face of accelerating. To answer your questions, if you still have 100% Philadelphia chromosomes after 9 or 10 months, yes this would indicate that Gleevec isn't working for you. You should have at least some reduction in Philadelphia chromosomes at this point. Also, yes, it is possible to accelerate with a normal white count but it's very rare. The most risk you have of accelerating is before you reach CCR which is why most doctors will do BMB's every three or six months until you reach CCR. Take care, Tracey dx Jan 2002 > > I was diagnosed in July 06, on 400mg Gleevec. My Personal Assistant is one > of the home businesses I've started because I have control over the hours > and can still use my experience. I have an appeal for my SSDI and waiting > the response. My side effects are tolerable but I would not be able to hold > up to work hours as before. My counts have been in the good range, but next > month, the doctor is doing a fish and the other(?) test to really see how > I'm doing. Question to those who have been into this longer than I - if I'm > still at 100% bad Chromosome, does that mean the Gleevec is not working? Can > you advance to Advanced or Blast stage and still have normal blood count? > > > > Barbara Hundley > > My Personal Assistant > > Fayetteville, GA > > Tel: 678-817-6805 > > Fax: 678-884-8186 > > <http://www.my- <http://www.my-personal-assist.com> personal-assist.com> www.my-personal-assist.com > > _____ > > From: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of > Loewenkamp > Sent: Sunday, April 22, 2007 4:44 PM > groups (DOT) <mailto:%40> com > Subject: Re: [ ] SSDI -- Jobs-Barbaa > > > > Hi Barbara, > > Clearly, I didn't know your situation. Are you on SSDI now? It doesn't sound > like it and that is the immediate problem until you can get SS. You signed > off " My Personal Assistant " which sounds like the name of a business. Is it? > I do scanthe various leukemia lists but I haven't read your story-- date of > diagnosis, medication and dosage, side effects and remedies. If you have > time, please send those. I'm sure others have weighed in but I've been the > patient of a number of good to excellent doctors who shared information that > I haven't heard elsewhere. And it's just FINE to vent. I'll stick my tongue > out at the Social Security Offices in Washington the next time I drive by. > > Best wishes, > > > Re: [ ] SSDI -- Jobs > > Hi , > Good luck! It's the same in Houston. " Citizens With Disabilities " told me > not to lie. > (omit yes, lie no) > I applied for a job which I was overqualified for and was turned down > because I didn't fill out > an application, which was not given to me when I gave them my resume. > EEOC checked and said this was a usual way to get around hiring someone over > 60 or > with disabilities, and there was nothing they could do. > Sorry I don't have better news. > Denice > > Loewenkamp <loewen1cox (DOT) <mailto:loewen1%40cox.net> net> wrote: > Hi, > > Is anyone else job hunting in an attempt to get off SSDI and make a living > wage? I've been consistently job hunting for three years in Washington, DC > and Northern Virginia and have had no luck at all. Instead I have had some > luck getting part-time temp work of various sorts to supplement my paltry > disability check. However, when I can't find a temp job my family has to > chip in because the monthly check is way under the poverty level. I've sent > out hundreds of resumes for fulltime work but to no avail. I send to jobs > thaat really exist from a few websites. Today, Monster.com sent out an > article about how difficult it is to find a job with a disability. They said > that we are a large part of the people in this country living in poverty. > > Any ideas? Any comments or experiences? My chronological background is such > that the gap right after I was diagnosed is impossible to completely cover > unless I just plain lie. It's starting to look like a good idea. Also, I'm > 61 and though I don't look really old I do look my age which is supposedly > the " new middle age. " > > Again, comments please? > > L > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 That's when you'll get some very useful information. In my experience and that of so many I've heard from over the years, the side effects (including bone pain) are worse at first and then normally fade away. I hope that's true for you. If you want to write to me privately about other side effects I do know various treatments that others of us have used succeessfully over the years. All the best, Re: [ ] SSDI -- Jobs-Barbaa Hi Barbara, I hope you've been followed closer than just having CBC's since you were diagnosed last July. Typically, doctors will do a BMB and/or FISH every three months until you reach CCR then once you have achieved a CCR (complete cytogenetic response), they will follow you with PCR's. It's important to keep a close watch on your marrow until you are in CCR because changes will be seen in the marrow that can't be seen in any blood test. The condition of your marrow will also tell you what kind of risk you face of accelerating. To answer your questions, if you still have 100% Philadelphia chromosomes after 9 or 10 months, yes this would indicate that Gleevec isn't working for you. You should have at least some reduction in Philadelphia chromosomes at this point. Also, yes, it is possible to accelerate with a normal white count but it's very rare. The most risk you have of accelerating is before you reach CCR which is why most doctors will do BMB's every three or six months until you reach CCR. Take care, Tracey dx Jan 2002 > Hi, > > Is anyone else job hunting in an attempt to get off SSDI and make a living > wage? I've been consistently job hunting for three years in Washington, DC > and Northern Virginia and have had no luck at all. Instead I have had some > luck getting part-time temp work of various sorts to supplement my paltry > disability check. However, when I can't find a temp job my family has to > chip in because the monthly check is way under the poverty level. I've sent > out hundreds of resumes for fulltime work but to no avail. I send to jobs > thaat really exist from a few websites. Today, Monster.com sent out an > article about how difficult it is to find a job with a disability. They said > that we are a large part of the people in this country living in poverty. > > Any ideas? Any comments or experiences? My chronological background is such > that the gap right after I was diagnosed is impossible to completely cover > unless I just plain lie. It's starting to look like a good idea. Also, I'm > 61 and though I don't look really old I do look my age which is supposedly > the " new middle age. " > > Again, comments please? > > L > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 Hi Barbara, It looks to me like your doctor is unfamiliar with the standard recommendations regarding CML monitoring if you haven't had more tests than this. Here's a quote from just one of the CML experts (Dr. Goldman) " I recommend a bone marrow examination again at 3 months after starting imatinib. I would also suggest that a patient has molecular monitoring with RQ-PCR transcript numbers on peripheral blood at every clinic visit " . You can find the whole article here: http://www.medscape.com/viewarticle/520295 You don't mention which additional cytogenetic abnormality you have. This would be very important to know because some mutations are much more likely to lead to progression than others. Either way, people with additional cytogenetic abnormalities/mutations should have bone marrow biopsies regularly to follow their evolution. Particularly in the case of a deletion of chromosome 9, some FISH tests aren't even reliable. You can find this quote " D-FISH is unreliable in patients with 9q+ deletions " here: http://tinyurl.com/2r3mwm Many doctors don't even bother with FISH tests anymore due to their limitations and inaccuracies. CML is not a common disease and not all doctors are familiar with it. Treatments are developing at a rapid pace and most regular doctors just can't keep up with the latest information. The first question I would ask your doctor is how many patients she has with CML. If it's only a handful, you might want to consider changing for a doctor who has more experience. Take care, Tracey > > Hi, > > > > Is anyone else job hunting in an attempt to get off SSDI and make a > living > > wage? I've been consistently job hunting for three years in > Washington, DC > > and Northern Virginia and have had no luck at all. Instead I have > had some > > luck getting part-time temp work of various sorts to supplement my > paltry > > disability check. However, when I can't find a temp job my family > has to > > chip in because the monthly check is way under the poverty level. > I've sent > > out hundreds of resumes for fulltime work but to no avail. I send > to jobs > > thaat really exist from a few websites. Today, Monster.com sent out > an > > article about how difficult it is to find a job with a disability. > They said > > that we are a large part of the people in this country living in > poverty. > > > > Any ideas? Any comments or experiences? My chronological background > is such > > that the gap right after I was diagnosed is impossible to > completely cover > > unless I just plain lie. It's starting to look like a good idea. > Also, I'm > > 61 and though I don't look really old I do look my age which is > supposedly > > the " new middle age. " > > > > Again, comments please? > > > > L > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 I know in Feb her PA told me they had 10 cases of CML. The other mutation they found was 1 & 9 if I remember correctly. I was never able to find anything about it on the internet. The lab evaluation indicated that this mutation could reduce my survival rate as compared to others without this mutation. My Doctor had sent me to Emory Cancer Center for 2nd evaluation after the labs showed a 2nd mutation, but the Emory Doctor didn't seem to be concerned as long as my counts were good. Now I'm beginning to think I need to look into their evaluation again. Barbara Hundley My Personal Assistant Fayetteville, GA Tel: 678-817-6805 Fax: 678-884-8186 <http://www.my-personal-assist.com> www.my-personal-assist.com _____ From: [mailto: ] On Behalf Of Tracey Sent: Monday, April 23, 2007 3:05 PM Subject: Re: [ ] SSDI -- Jobs-Barbaa Hi Barbara, It looks to me like your doctor is unfamiliar with the standard recommendations regarding CML monitoring if you haven't had more tests than this. Here's a quote from just one of the CML experts (Dr. Goldman) " I recommend a bone marrow examination again at 3 months after starting imatinib. I would also suggest that a patient has molecular monitoring with RQ-PCR transcript numbers on peripheral blood at every clinic visit " . You can find the whole article here: http://www.medscape.com/viewarticle/520295 You don't mention which additional cytogenetic abnormality you have. This would be very important to know because some mutations are much more likely to lead to progression than others. Either way, people with additional cytogenetic abnormalities/mutations should have bone marrow biopsies regularly to follow their evolution. Particularly in the case of a deletion of chromosome 9, some FISH tests aren't even reliable. You can find this quote " D-FISH is unreliable in patients with 9q+ deletions " here: http://tinyurl. <http://tinyurl.com/2r3mwm> com/2r3mwm Many doctors don't even bother with FISH tests anymore due to their limitations and inaccuracies. CML is not a common disease and not all doctors are familiar with it. Treatments are developing at a rapid pace and most regular doctors just can't keep up with the latest information. The first question I would ask your doctor is how many patients she has with CML. If it's only a handful, you might want to consider changing for a doctor who has more experience. Take care, Tracey > > Hi, > > > > Is anyone else job hunting in an attempt to get off SSDI and make a > living > > wage? I've been consistently job hunting for three years in > Washington, DC > > and Northern Virginia and have had no luck at all. Instead I have > had some > > luck getting part-time temp work of various sorts to supplement my > paltry > > disability check. However, when I can't find a temp job my family > has to > > chip in because the monthly check is way under the poverty level. > I've sent > > out hundreds of resumes for fulltime work but to no avail. I send > to jobs > > thaat really exist from a few websites. Today, Monster.com sent out > an > > article about how difficult it is to find a job with a disability. > They said > > that we are a large part of the people in this country living in > poverty. > > > > Any ideas? Any comments or experiences? My chronological background > is such > > that the gap right after I was diagnosed is impossible to > completely cover > > unless I just plain lie. It's starting to look like a good idea. > Also, I'm > > 61 and though I don't look really old I do look my age which is > supposedly > > the " new middle age. " > > > > Again, comments please? > > > > L > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 Hi Barbara, The FISH test is really not reliable. HOWEVER, it was a FISH test that first revealed that I was losing my response to Gleevec (IM) and needed to find a trial for Sprycel which I did. Normally, though FISH tests are notoriously unrelable. You need a QRT-PCR either from blood or from the marrow through a BMA. That is the most sensitive test available at this time unless something has changed just recently. That plus your counts that you get regularly plus a test for cytogenetics again (100% now) will give your doctor a bigger picture if done all at once and he can see if you are in need of changing dosage, medication or something different. There's so much more that can be done now than when I was diagnosed just 6 years ago. Do it right away though. This sneaky disease has a way of moving very fast when it gets going. Best wishes, Re: [ ] SSDI -- Jobs Hi , Good luck! It's the same in Houston. " Citizens With Disabilities " told me not to lie. (omit yes, lie no) I applied for a job which I was overqualified for and was turned down because I didn't fill out an application, which was not given to me when I gave them my resume. EEOC checked and said this was a usual way to get around hiring someone over 60 or with disabilities, and there was nothing they could do. Sorry I don't have better news. Denice Loewenkamp <loewen1cox (DOT) <mailto:loewen1%40cox.net> net> wrote: Hi, Is anyone else job hunting in an attempt to get off SSDI and make a living wage? I've been consistently job hunting for three years in Washington, DC and Northern Virginia and have had no luck at all. Instead I have had some luck getting part-time temp work of various sorts to supplement my paltry disability check. However, when I can't find a temp job my family has to chip in because the monthly check is way under the poverty level. I've sent out hundreds of resumes for fulltime work but to no avail. I send to jobs thaat really exist from a few websites. Today, Monster.com sent out an article about how difficult it is to find a job with a disability. They said that we are a large part of the people in this country living in poverty. Any ideas? Any comments or experiences? My chronological background is such that the gap right after I was diagnosed is impossible to completely cover unless I just plain lie. It's starting to look like a good idea. Also, I'm 61 and though I don't look really old I do look my age which is supposedly the " new middle age. " Again, comments please? L Quote Link to comment Share on other sites More sharing options...
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