Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Welcome to the board, Matt. I'm pretty new around here, too. Wow, I admire your level of activity despite your side effects. I was diagnosed in May 2005. I was able to continue working until this past April, when my side effects put me out on disability. I'm also a father, of two beautiful daughters. I have mixed feelings about not working now, but I have to say I'm enjoying being a stay-at-home Dad. I had the kind of job (along with 3.5 hours of commuting each day) that prevented me from seeing a whole lot of my family, so it's a blessing to be able to see my kids so much now. I've spoken a little with my doctor about experimenting with Sprycel, but I'm not pushing it right now and he isn't either. I reached PCRU this past summer and, while it's been pointed out to me that Sprycel shouldn't adversely affect my status, I'm still a little nervous about changing what I've been doing. I'm also curious to hear from folks who've changed to Sprycel for reasons other than sub-optimal response from Gleevec. Best of luck to you. Warmest regards. (Dov) > > I am new to this message board, however I am not completely new to > CML nor Gleevec. I was diagnosed in January of 2005, about two weeks > before our third child was born. I showed no symptoms at the time > and it was discovered with a routine CBC for a physical. > > After a visit with several oncologists, I found one with experience > with CML and I begain a dose of 600 mg of Gleevec daily. I then went > for further testing at MD in Houston (Giles) and now return > their annually, although they prefer you to go every six months or > so. After my visit to MD , we increased the dosage to 800 mg > until my one year anniversary and have lowered to dosage to 400 mg > after that point. My last PCR showed .05%, down from the 99.1% that > I had originally at diagnosis. > > I work full time, am a father to three wonderful children and am > active in the community. I even coach a few sports teams (football, > basketballa and baseball)although my energy is nowhere where it used > to be. > > However, I, like many of you, experience a myriad of side effects > with Gleevec and am starting to research a request to change to > Sprycel. If you had trouble with Gleevec and switched to Sprycel, I > would like to hear from you. How has the transition been? How have > the side effects been in comparison? > > Also, if you would like to email any specific data on things I have > done to cope with the side effects of Gleevec, I would be glad to > hear from you and will respond accordingly. > > With warm regards, > > Matt > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Dave: So nice to hear from you. I cannot say that I am able to work up to the level I used to, but I try to keep the momentum going because when I stop I am usually so exhausted I don't get up for a while. I will admit that I don't feel good a lot of the time, but if I sat home in bed I would still feel lousy, so why not coach my son in a sport or watch my daughter at gymnastics and at least be accomplishing something while I am feeling bad. I am sorry you are on disability, but the focus is on getting better, so if it give you some income and you can concentrate on you then that is what God wants you to do right now. I hope that this will be a time that you can focus on getting better and finding the right balance for you. The company that I work for is struggling and I have been actively searching for something else to do that would give me some flexibility. So that on days I need rest, I can rest and other days I can work. I haven't found it yet, but I think it is right around the corner. How long have you been on Gleevec? And how has your response been? You can't believe how nice it is to hear from someone that is in the same boat I am. Thanks for taking the time. With warm regards, Maynor mtmaynor@... 904-219-9108 In a message dated 10/26/2006 11:29:22 P.M. Eastern Standard Time, deh12@... writes: Welcome to the board, Matt. I'm pretty new around here, too. Wow, I admire your level of activity despite your side effects. I was diagnosed in May 2005. I was able to continue working until this past April, when my side effects put me out on disability. I'm also a father, of two beautiful daughters. I have mixed feelings about not working now, but I have to say I'm enjoying being a stay-at-home Dad. I had the kind of job (along with 3.5 hours of commuting each day) that prevented me from seeing a whole lot of my family, so it's a blessing to be able to see my kids so much now. I've spoken a little with my doctor about experimenting with Sprycel, but I'm not pushing it right now and he isn't either. I reached PCRU this past summer and, while it's been pointed out to me that Sprycel shouldn't adversely affect my status, I'm still a little nervous about changing what I've been doing. I'm also curious to hear from folks who've changed to Sprycel for reasons other than sub-optimal response from Gleevec. Best of luck to you. Warmest regards. (Dov) > > I am new to this message board, however I am not completely new to > CML nor Gleevec. I was diagnosed in January of 2005, about two weeks > before our third child was born. I showed no symptoms at the time > and it was discovered with a routine CBC for a physical. > > After a visit with several oncologists, I found one with experience > with CML and I begain a dose of 600 mg of Gleevec daily. I then went > for further testing at MD in Houston (Giles) and now return > their annually, although they prefer you to go every six months or > so. After my visit to MD , we increased the dosage to 800 mg > until my one year anniversary and have lowered to dosage to 400 mg > after that point. My last PCR showed .05%, down from the 99.1% that > I had originally at diagnosis. > > I work full time, am a father to three wonderful children and am > active in the community. I even coach a few sports teams (football, > basketballa and baseball)although my energy is nowhere where it used > to be. > > However, I, like many of you, experience a myriad of side effects > with Gleevec and am starting to research a request to change to > Sprycel. If you had trouble with Gleevec and switched to Sprycel, I > would like to hear from you. How has the transition been? How have > the side effects been in comparison? > > Also, if you would like to email any specific data on things I have > done to cope with the side effects of Gleevec, I would be glad to > hear from you and will respond accordingly. > > With warm regards, > > Matt > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Matt, Thanks for your supportive words. I sometimes feel guilty and uncomfortable about not working, although I don't really have much of a choice. My job (attorney) required energy, stamina, steel-trap memory, focus, concentration and razor-sharp analytical skills . . . . all things that I'm sadly lacking on Gleevec because of side effects (severe fatigue, short-term memory loss, impaired focus, concentration and comprehension). It became a matter of leaving my job or risking malpractice on a daily basis. Do you mind my asking what kinds of side effects you're having that would cause you to stop Gleevec (other than low energy)? You have a very healthy perspective. I hope you're able to find a new position that suits your needs. Flexibility is important in our circumstances. To answer your question, I've been on Gleevec, 400 mg., since last May (2005)and have had a great response -- my July and October 2006 PCRs were both 0.000. Best of luck to you. Let us know if you make the jump to Sprycel and how it's working for you. Warmest regards. (Dov) > > > > I am new to this message board, however I am not completely new to > > CML nor Gleevec. I was diagnosed in January of 2005, about two > weeks > > before our third child was born. I showed no symptoms at the time > > and it was discovered with a routine CBC for a physical. > > > > After a visit with several oncologists, I found one with > experience > > with CML and I begain a dose of 600 mg of Gleevec daily. I then > went > > for further testing at MD in Houston (Giles) and now > return > > their annually, although they prefer you to go every six months or > > so. After my visit to MD , we increased the dosage to 800 > mg > > until my one year anniversary and have lowered to dosage to 400 mg > > after that point. My last PCR showed .05%, down from the 99.1% > that > > I had originally at diagnosis. > > > > I work full time, am a father to three wonderful children and am > > active in the community. I even coach a few sports teams > (football, > > basketballa and baseball)although my energy is nowhere where it > used > > to be. > > > > However, I, like many of you, experience a myriad of side effects > > with Gleevec and am starting to research a request to change to > > Sprycel. If you had trouble with Gleevec and switched to Sprycel, > I > > would like to hear from you. How has the transition been? How > have > > the side effects been in comparison? > > > > Also, if you would like to email any specific data on things I > have > > done to cope with the side effects of Gleevec, I would be glad to > > hear from you and will respond accordingly. > > > > With warm regards, > > > > Matt > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 : Well we are certainly fairly parallel in the time we started the Gleevec and it sounds like we are parallel as well in the side effects. I experience extreme fatigue, bone pain, muscle cramping, memory loss and flu like symptoms when I am tired. It is difficult for me to work some of the time, however I persevere because I need to work and I need the insurance coverage. Gleevec is expensive and so is oncology visits. While I have tried a number of ventures, " my ship has not come in " . The owner of the company has enough loyalty that he has allowed me to lessen my duties, however he has also lessened my pay considerably and curtailed some of what I do. I have started using my network to raise money (both debt and equity) for small businesses that need to expand. These are usually companies with good track records, but no bank relationships. I also have contacts with equity partners that are looking to become partners in projects that have potential. I have only done a handful of these, but if I can place more, I am hoping that this may be something I can leap frog to. Part of my work deals with handling lawsuits against the company, so I deal with litigators in various states. Were you a litigator or transactional attorney? What state did you work in? I can understand the malpractice issue as one that would be a concern to you and your partners. I have known a number of attorneys who have left private practice, I assume under the assumption that " the grass is always greener " . If I may ask another question, I have long term disability insurance, but how did you qualify for the coveage to go on disability or were you covered through another type of coverage? With warm regards, Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 Hi , and Matt, I am not going to go through everything again, but I was a former credit card fraud investigator and have not worked since July of 04. I am not making any jump to another drug because as long as the gleevec is working I am sticking with it. My side effects are managed by pain meds and over the counter stuff. I also have the same issues with memory and concentration as . Matt, I had long term disability insurance through my employer and basically the way it worked for me was I simply had my doctor fill out a short form for my insurance carrier. I have to have that done every quarter. I am presently trying to get on SSD, and at the hearing stage. My insurance carrier is footing the bill for this so they do not have to pay me the entire amount they are contracted to until 2031. It makes no difference in what I would make I will just get one check from SSD, and another from my insurance to make up the difference to equal what they are contracted to pay me. My advice for all of you out there still working is if you have disability insurance spend the extra money to get 75% of your salary. I wish I had done so because I would make 75% of what I was making instead of 50%. Terry On 10/28/06, mtmaynor@... <mtmaynor@...> wrote: > > : > > Well we are certainly fairly parallel in the time we started the > Gleevec and > it sounds like we are parallel as well in the side effects. I experience > extreme fatigue, bone pain, muscle cramping, memory loss and flu > like symptoms > when I am tired. It is difficult for me to work some of the > time, however I > persevere because I need to work and I need the > insurance coverage. Gleevec > is expensive and so is oncology visits. While I have tried a number of > ventures, " my ship has not come in " . The owner of the company has enough > loyalty > that he has allowed me to lessen my duties, however he has also lessened > my > pay considerably and curtailed some of what I do. > > I have started using my network to raise money (both debt and equity) for > small businesses that need to expand. These are usually companies > with good > track records, but no bank relationships. I also have contacts > with equity > partners that are looking to become partners in projects that > have potential. I > have only done a handful of these, but if I can place more, I am hoping > that > this may be something I can leap frog to. > > Part of my work deals with handling lawsuits against the company, so I > deal > with litigators in various states. Were you a litigator or transactional > attorney? What state did you work in? I can understand the malpractice > issue > as one that would be a concern to you and your partners. I have known a > number of attorneys who have left private practice, I assume under the > assumption > that " the grass is always greener " . > > If I may ask another question, I have long term disability insurance, but > how did you qualify for the coveage to go on disability or were you > covered > through another type of coverage? > > With warm regards, > > Matt > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 Matt, I am (or was) a transactional lawyer -- mostly M & A and securities finance. I live on Long Island but work (or worked) in Manhattan (hence my hellish commute -- more than an hour and a half each way). To answer your disability question -- I have both employer-provided disability and an excellent supplemental policy that I bought back when I was young and healthy. As Terry describes, making a claim under an LTD policy involves, most importantly, getting your doctor to support you and fill out the necessary paperwork. I've never been much of an investor, but, as it turns out, the private supplemental policy was the best investment I ever made. Little did I dream back when I bought it over ten years ago that I would actually need it. (I should track down the broker who sold it to me and buy him a nice steak dinner.) Where do you live/work? Warmest regards. (Dov) > > : > > Well we are certainly fairly parallel in the time we started the Gleevec and > it sounds like we are parallel as well in the side effects. I experience > extreme fatigue, bone pain, muscle cramping, memory loss and flu like symptoms > when I am tired. It is difficult for me to work some of the time, however I > persevere because I need to work and I need the insurance coverage. Gleevec > is expensive and so is oncology visits. While I have tried a number of > ventures, " my ship has not come in " . The owner of the company has enough loyalty > that he has allowed me to lessen my duties, however he has also lessened my > pay considerably and curtailed some of what I do. > > I have started using my network to raise money (both debt and equity) for > small businesses that need to expand. These are usually companies with good > track records, but no bank relationships. I also have contacts with equity > partners that are looking to become partners in projects that have potential. I > have only done a handful of these, but if I can place more, I am hoping that > this may be something I can leap frog to. > > Part of my work deals with handling lawsuits against the company, so I deal > with litigators in various states. Were you a litigator or transactional > attorney? What state did you work in? I can understand the malpractice issue > as one that would be a concern to you and your partners. I have known a > number of attorneys who have left private practice, I assume under the assumption > that " the grass is always greener " . > > If I may ask another question, I have long term disability insurance, but > how did you qualify for the coveage to go on disability or were you covered > through another type of coverage? > > With warm regards, > > Matt > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2006 Report Share Posted October 29, 2006 : I live and work in ville, Florida. It is in the Northeast part of Florida. Thanks for sharing your story. My policies are not nearly that good. Every work on some high profile M & A companies? Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2006 Report Share Posted October 30, 2006 Hi, Matt. My firm isn't one of the M & A powerhouses in NYC, but I've worked on a few high-profile deals. I have to say, though, that for a transactional tax lawyer, the smaller companies are much more interesting because they do all sorts of wacky things, ignoring corporate formalities and such, that create interesting tax issues for lawyers. (For example, company founders always seem to promise employees incentive stock, but somehow never get around to actually issuing the shares, so, at the time the company is being bought, the poor employees end up with compensation income instead of long term capital gains.) Anyway, my apologies to everyone for dragging you all into the abyss of corporate tax law. I'll try never to do that again. : ) Warmest regards. (Dov) > > : > > I live and work in ville, Florida. It is in the Northeast part of > Florida. > > Thanks for sharing your story. My policies are not nearly that good. > > Every work on some high profile M & A companies? > > Matt > > > Quote Link to comment Share on other sites More sharing options...
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