Guest guest Posted May 10, 2007 Report Share Posted May 10, 2007 > Dear Sharon, I have often thought of volunteering, even though they would have to be very understanding about the fact I would constantly have to be sitting for a bit, then walking around for a bit. But- I've worried about what it would do to my SSDI benefits if it got back to them that I was able to actually able to do some kind of work. Maybe I'm paranoid, but if I knew that a few hours of volunteering wouldn't hurt my benefits, I'd be more apt to look for some place that could use me. When I got my SSDI, they said I could be reviewed in 5-7 years. How do you go about finding out if volunteering wouldn't hurt my receiving SSDI? Sincerely Jeannie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2007 Report Share Posted May 10, 2007 > Dear Sharon, I have often thought of volunteering, even though they would have to be very understanding about the fact I would constantly have to be sitting for a bit, then walking around for a bit. But- I've worried about what it would do to my SSDI benefits if it got back to them that I was able to actually able to do some kind of work. Maybe I'm paranoid, but if I knew that a few hours of volunteering wouldn't hurt my benefits, I'd be more apt to look for some place that could use me. When I got my SSDI, they said I could be reviewed in 5-7 years. How do you go about finding out if volunteering wouldn't hurt my receiving SSDI? Sincerely Jeannie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2007 Report Share Posted May 10, 2007 Hi Jeannie well I'd call and ask them they should be able to tell you I would think. As for what you can and cannot do for instance I found a hospice group that needed someone to make teddy bears for families of people who had passed away out of articles of their clothing. They provided everything and the lady I talked too said I could do it at my own pace, there was no hurry on it so it sounded great to me. I cheked into several other ons that I thought I might be able to do but either they were too long or too far away for me to get there. But I didn't get done looking thru the list it was very long. Now however I think I will be almost too busy with cleaning up and getting stuff started packing to move. I know I have a very large attic full of stuff to go thru and decide what to keep and what goes to the goodwill or the trash. So I guess for now till I get that done I will have tp donate that way.I am sure that will keep me more than busy, I HATE moving:( Sharon Group Onwer - In neck pain , " jeannieboo1 " <jeannieboo1@...> wrote: > > > > > Dear Sharon, > I have often thought of volunteering, even though they would have to be > very understanding about the fact I would constantly have to be sitting > for a bit, then walking around for a bit. But- I've worried about what > it would do to my SSDI benefits if it got back to them that I was able > to actually able to do some kind of work. Maybe I'm paranoid, but if I > knew that a few hours of volunteering wouldn't hurt my benefits, I'd be > more apt to look for some place that could use me. When I got my SSDI, > they said I could be reviewed in 5-7 years. How do you go about finding > out if volunteering wouldn't hurt my receiving SSDI? > Sincerely > Jeannie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2007 Report Share Posted May 10, 2007 Hi Jeannie well I'd call and ask them they should be able to tell you I would think. As for what you can and cannot do for instance I found a hospice group that needed someone to make teddy bears for families of people who had passed away out of articles of their clothing. They provided everything and the lady I talked too said I could do it at my own pace, there was no hurry on it so it sounded great to me. I cheked into several other ons that I thought I might be able to do but either they were too long or too far away for me to get there. But I didn't get done looking thru the list it was very long. Now however I think I will be almost too busy with cleaning up and getting stuff started packing to move. I know I have a very large attic full of stuff to go thru and decide what to keep and what goes to the goodwill or the trash. So I guess for now till I get that done I will have tp donate that way.I am sure that will keep me more than busy, I HATE moving:( Sharon Group Onwer - In neck pain , " jeannieboo1 " <jeannieboo1@...> wrote: > > > > > Dear Sharon, > I have often thought of volunteering, even though they would have to be > very understanding about the fact I would constantly have to be sitting > for a bit, then walking around for a bit. But- I've worried about what > it would do to my SSDI benefits if it got back to them that I was able > to actually able to do some kind of work. Maybe I'm paranoid, but if I > knew that a few hours of volunteering wouldn't hurt my benefits, I'd be > more apt to look for some place that could use me. When I got my SSDI, > they said I could be reviewed in 5-7 years. How do you go about finding > out if volunteering wouldn't hurt my receiving SSDI? > Sincerely > Jeannie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Dear Sharon, I'm glad you are doing so well on Tasigna. Everyone seems to be doing well (as far as I know) on 400 mg. That is the drug I would have picked, but my doctor picked the ski for me. I've got a rash again. As soon as I'm done with the dentist I will try to see my dermatologist. Hard to tell what is happening. Is it the transfusion, the antibiotic or the ski????? I think you are not far away from actual truth, with so many new drugs, there will in all probability be something for everyone very soon. Bobby is a wonderful friend and I'm glad she's getting another break. We were both on the BMS (Sprycel) trial, but my side effects showed up sooner than hers. I know she hates to give it up, but on such a low dose and still having effusions, they need to find something better for her. It worked for a while, but then she became intolerant. There may be some side effects with everything eventually, but hopefully they will be able to keep it to a minimum. It takes some ten years to really trial a drug. Gleevec is the only drug that has stood the tests of time for most patients as their data proves. I remember the first trial I was on (ATRA). I couldn't get any information on it and called NIH. They told me it takes 10 years to compile any data on a drug and get approval from FDA. Four years later, Gleevec was approved and the CML world was jubiliant. It was supposed to be free of side effects, but as we see from the latest data, this was not the case, but it was a jumping off point to planting seeds for newer drugs. At the time I talked to NIH, I had already used up 4 years of the 5 years I was given, so it was very touchy. Just hearing about STI was enough to give everyone hope that the holy grail had finally been discovered. It was a ticket out of INF and the few other drugs out there. Some people are considered " cured " after being on INF for a few years. I know a woman in Canada who has yearly appointments and she is still CML free and considered cured. I'm sure when INF was discovered and then developed by Dr. Talpaz it was considered better than Busulfan and Hydrea. Seems I read some time ago (correct me if I'm wrong) that INF was originally discovered to treat HIV and then found it also worked on CML. Then someone came up with the idea that leukemia arises from a single cell and research took off in a different direction. You might be interested in some research I turned up. LSCs (leukemia stem cells} are quiescent and have self-renewal and clonogenic capacity. Because they are quiescent, LSCs do not respond to cell cycle–specific cytotoxic agents used to treat leukemia and so contribute to treatment failure. If you want to read more on this, go to this site: http://clincancerres.aacrjournals.org/cgi/content/full/12/2/340 If you want to learn more about molecular and biological features of CML cells and the future directions of where research is going, this is the site: http://clincancerres.aacrjournals.org/cgi/content/full/12/2/340#SEC5 Stem Cell Basics: Stem cells have the remarkable potential to develop into many different cell types in the body. Serving as a sort of repair system for the body, they can theoretically divide without limit to replenish other cells as long as the person or animal is still alive. When a stem cell divides, each new cell has the potential to either remain a stem cell or become another type of cell with a more specialized function, such as a muscle cell, a red blood cell, or a brain cell. http://stemcells.nih.gov/info/basics/ How do they form embryonic stem cell lines? Over the course of several days, the cells of the inner cell mass proliferate and begin to crowd the culture dish. When this occurs, they are removed gently and plated into several fresh culture dishes. The process of replating the cells is repeated many times and for many months, and is called subculturing. Each cycle of subculturing the cells is referred to as a passage. After six months or more, the original 30 cells of the inner cell mass yield millions of embryonic stem cells. Embryonic stem cells that have proliferated in cell culture for six or more months without differentiating, are pluripotent, and appear genetically normal are referred to as an embryonic stem cell line. For more information, go to this web site: http://stemcells.nih.gov/info/basics/basics3.asp Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2008 Report Share Posted April 23, 2008 Lottie- Thank you so much for the links. The more I know the less helpless I feel in this fight. Chi --- Lottie Duthu <lotajam@...> wrote: > Dear Sharon, > I'm glad you are doing so well on Tasigna. > Everyone seems to be doing well (as far as I know) > on 400 mg. That is the drug I would have picked, > but my doctor picked the ski for me. I've got a > rash again. As soon as I'm done with the dentist I > will try to see my dermatologist. Hard to tell what > is happening. Is it the transfusion, the antibiotic > or the ski????? > > I think you are not far away from actual truth, > with so many new drugs, there will in all > probability be something for everyone very soon. > Bobby is a wonderful friend and I'm glad she's > getting another break. We were both on the BMS > (Sprycel) trial, but my side effects showed up > sooner than hers. I know she hates to give it up, > but on such a low dose and still having effusions, > they need to find something better for her. It > worked for a while, but then she became intolerant. > There may be some side effects with everything > eventually, but hopefully they will be able to keep > it to a minimum. It takes some ten years to really > trial a drug. Gleevec is the only drug that has > stood the tests of time for most patients as their > data proves. I remember the first trial I was on > (ATRA). I couldn't get any information on it and > called NIH. They told me it takes 10 years to > compile any data on a drug and get approval from > FDA. Four years later, Gleevec was approved and the > CML world was jubiliant. It was supposed to be free > of side effects, but as we see from the latest data, > this was not the case, but it was a jumping off > point to planting seeds for newer drugs. At the > time I talked to NIH, I had already used up 4 years > of the 5 years I was given, so it was very touchy. > Just hearing about STI was enough to give everyone > hope that the holy grail had finally been > discovered. It was a ticket out of INF and the few > other drugs out there. Some people are considered > " cured " after being on INF for a few years. I know > a woman in Canada who has yearly appointments and > she is still CML free and considered cured. I'm > sure when INF was discovered and then developed by > Dr. Talpaz it was considered better than Busulfan > and Hydrea. Seems I read some time ago (correct me > if I'm wrong) that INF was originally discovered to > treat HIV and then found it also worked on CML. Then > someone came up with the idea that leukemia arises > from a single cell and research took off in a > different direction. You might be interested in > some research I turned up. > > LSCs (leukemia stem cells} are quiescent and have > self-renewal and clonogenic capacity. Because they > are quiescent, LSCs do not respond to cell > cycle–specific cytotoxic agents used to treat > leukemia and so contribute to treatment failure. > If you want to read more on this, go to this site: > http://clincancerres.aacrjournals.org/cgi/content/full/12/2/340 > > If you want to learn more about molecular and > biological features of CML cells and the future > directions of where research is going, this is the > site: > http://clincancerres.aacrjournals.org/cgi/content/full/12/2/340#SEC5 > > Stem Cell Basics: Stem cells have the remarkable > potential to develop into many different cell types > in the body. Serving as a sort of repair system for > the body, they can theoretically divide without > limit to replenish other cells as long as the person > or animal is still alive. When a stem cell divides, > each new cell has the potential to either remain a > stem cell or become another type of cell with a more > specialized function, such as a muscle cell, a red > blood cell, or a brain cell. > http://stemcells.nih.gov/info/basics/ > > How do they form embryonic stem cell lines? Over > the course of several days, the cells of the inner > cell mass proliferate and begin to crowd the culture > dish. When this occurs, they are removed gently and > plated into several fresh culture dishes. The > process of replating the cells is repeated many > times and for many months, and is called > subculturing. Each cycle of subculturing the cells > is referred to as a passage. After six months or > more, the original 30 cells of the inner cell mass > yield millions of embryonic stem cells. Embryonic > stem cells that have proliferated in cell culture > for six or more months without differentiating, are > pluripotent, and appear genetically normal are > referred to as an embryonic stem cell line. > > For more information, go to this web site: > http://stemcells.nih.gov/info/basics/basics3.asp > > Blessings, > > Lottie > > > > > > > [Non-text portions of this message have been > removed] > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.