Guest guest Posted December 19, 2000 Report Share Posted December 19, 2000 Hello: I may not be computer accessible again for a little while. They just took my dad to the hospital in the ambulance. He has not been doing very well. I will feel better with him in the hospital so they can stabilize him. Please say some prayers. I may be staying at my mom's for a few days. Jeannette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2000 Report Share Posted December 19, 2000 hang in there jeanette. i will have my fingers crossed for you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2000 Report Share Posted December 19, 2000 Dear Jeannette: I will pray for you and your Dad and your family. Sincerely, Anjillah@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2000 Report Share Posted December 19, 2000 Jeannette, Please know you and your family are in my prayers. Tery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2000 Report Share Posted December 19, 2000 Jeannette- You are all in my prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2000 Report Share Posted December 19, 2000 So sorry to hear that, Jeannette. I hope that you father will be alright. Please let us know. We'll be thinking of you. ----- Original Message ----- From: <ednettieolson@...> < egroups>; <anncan@...> Sent: Tuesday, December 19, 2000 11:31 AM Subject: [ ] Re: My dad > Hello: > > I may not be computer accessible again for a little while. They just took my > dad to the hospital in the ambulance. He has not been doing very well. I > will feel better with him in the hospital so they can stabilize him. Please > say some prayers. I may be staying at my mom's for a few days. > > Jeannette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2000 Report Share Posted December 20, 2000 Jeannette, I was so sorry to read about your dad. You and your family are in my prayers. Let us know how things are going when you can. Me Mom ---------- > From: ednettieolson@... > egroups; anncan@... > Subject: [ ] Re: My dad > Date: Tuesday, December 19, 2000 12:31 PM > > Hello: > > I may not be computer accessible again for a little while. They just took my > dad to the hospital in the ambulance. He has not been doing very well. I > will feel better with him in the hospital so they can stabilize him. Please > say some prayers. I may be staying at my mom's for a few days. > > Jeannette > > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > http://www.rasupport.webprovider.com/ > Change subscription options: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2000 Report Share Posted December 27, 2000 Dear Group: I hope you do not mind my talking about my dad and what we are going through so much. I am having a hard time dealing with all of this and the possibility of him dieing. It helps me alot to write about things. I hope I am not being a whining pain in the neck. Please forgive me if I am. I am having a rather weepy night here. I want to go to bed now and try to sleep. Something tells me I will be back though. I even dream about hospitals. Last night was the same. I was up several times as was the night before. If only I could find some peace with all this. I feel like I am on such a roller coaster though. Sorry. Jeannette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2000 Report Share Posted December 28, 2000 Pat, Thank you for your post. I am not sleeping but was glad you wrote me. I never meant that somebody said something negative. I just feel someone guilty if dealing with this bothers anybody. Nobody has said anything at all to make me feel that way. I am just so caught up in the pain of all of this with my dad. I feel so bad for him, my mother and am very very afraid of losing him. I know others have been there dealing with the loss of a parent. I have dealt with the loss of aunts, uncles, friends, grandparents but never a parent. I feel like a fish out of water gasping for air. Tonight will pass and tomorrow I will be better. It is when ever he sees his PCP, I get to feeling so hopeless because his dr. always talks so hopeless. Others have been on this path before me but now I am there and feeling lost and scared. So much to deal with......their feelings, your feelings, drs., hospitals, tests, retests, etc. He is getting so fraile and weary. He was always so strong and sure. He is happy though. He is at peace so it seems. I should take comfort in that. Thanks again. Jeannette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2000 Report Share Posted December 28, 2000 Jeanette, We have never limited off topic discussions about issues that are causing problems for people. We try to keep the posts well marked so that people who do not care to read them can just delete them. Death is a sensitive issue for some people and we can respect that my keeping the subject line clear. We all find comfort in different things and if people share from their hearts, you will have a wide variety of thoughts to ponder. It is important to remember that people on this list are loving and caring, if something strikes you the wrong way - read it again with the love it is said with. You know that you can count on this list for love, support and comfort. Many of us have been in your shoes and it is never easy. Believe me, when you watch a parent suffer, it is a relief when they are finally at peace. It may be hard to believe that but watching them in pain, breaks your heart. I hope that you are sleeping and do not see this until morning. If you are awake tonight, I hope you are comforted by knowing that we care. Pat At 11:10 PM 12/27/2000 -0500, you wrote: >Dear Group: > >I hope you do not mind my talking about my dad and what we are going through >so much. I am having a hard time dealing with all of this and the >possibility of him dieing. It helps me alot to write about things. I hope I >am not being a whining pain in the neck. Please forgive me if I am. I am >having a rather weepy night here. I want to go to bed now and try to sleep. >Something tells me I will be back though. I even dream about hospitals. >Last night was the same. I was up several times as was the night before. If >only I could find some peace with all this. I feel like I am on such a >roller coaster though. Sorry. > >Jeannette > > >Our websites: http://rheumatoid.arthritis.freehosting.net/ >http://www.rasupport.webprovider.com/ >Change subscription options: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2000 Report Share Posted December 28, 2000 sorry about you dad jeanette, i can't imagine... my parents are still pretty young and somewhat healthy. i know it will be very hard for me too, i depend on my parents alot. please do not worry about us and whine all you want or need too. thats why we are here. kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2000 Report Share Posted December 28, 2000 Jeannette, I agree with what Pat said. We are here if you need us. We all care and do not mind " listening " about your dad. Those who do can just delete the post. If you feel you need a break we understand that too. Just remember we are here and thinking about you. You can e-mail privately if you want too any time. Take care. Tery - FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 My dad's health is declining. In one month his weakness has doubled. I know we cannot all know the future. Does anyone have any intuision about my dad? Will he be around longer than a month? 6 months? His name is . Thanks, Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 I'm so sorry Deb. I don't have any intuition on your fathers condition, but I'm praying for you all. Love,Stef>> My dad's health is declining.> In one month his weakness has doubled.> I know we cannot all know the future.> Does anyone have any intuision about my dad?> Will he be around longer than a month? 6 months?> His name is .> Thanks,> Deb> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 > > My dad's health is declining. > In one month his weakness has doubled. > I know we cannot all know the future. > Does anyone have any intuision about my dad? > Will he be around longer than a month? 6 months? > His name is . > Thanks, > Deb > I AM SORRY TO HEAR ABOUT YOUR FATHER! YET, YOU DO NOT SAY, " WHAT IS ILLNESS IS. " MY MOTHER WHOM I THOUGHT WOULD LIVE FOREVER AND DIDN'T WANT TO ACCEPT SHE WOULDN'T !!BACK IN '97 CAME DOWN WITH OAT CELL CANCER WAS TAKEN HOME IN LESS THAN 90 DAYS. VERY FAST GROWING CANCER YET, " BLESSE " WITH THE TIME HAD HERE IN LIFE WITH HER. WISH I WOULD HAVE RELIZED/ACCEPTED SHE WAS LEAVING. I WOULD HAVE DONE MORE INSTEAD OF WORKING SO MUCH...WE NEVER KNOW THEN, IT TOO, HAS ALOT TO DO WITH RATHER THE PERSON IS GIVING UP AND ALL, TOO! LOVE,PRAYERS & RESPECT IN HEART & SPIRIT! A FRIEND DIANE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2009 Report Share Posted November 10, 2009 This course of treatment sounds logical at this point. Three months between visits has been normal for me. Are the doing a blood test called an RT-PCR for him at that time? This is a very sensitive genetics test to detect and measure the level of the CML in his system. 400mg is a standard dose, I was at 400 for six years but had to go to 800 when my PCR started showing positive counts earlier this year. Watch you dad's complete health picture, don't hesitate to go to the doctor if he has other issues. It is easy to be too focused on the CML and miss other important issues. Troxel On Tue, Nov 10, 2009 at 9:36 AM, <asynodis@...> wrote: > > > Ok so here we are, i have talked to a few of you via email and now im going > to post, my dad found out in August he has CML at the age of 84, he was told > by his doctor that his blood looked good last week and that he does not need > to see him for 3 months, for me this does not sound right, he was just put > on Gleevec at the end of Sept was taken off for a week because the side > effects were to bad, just put back on two weeks ago and is now at 400, if > anyone has any information on medical care and cml at his age please let me > know. > thanks, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2009 Report Share Posted November 10, 2009 If you and your dad are not comfortable, TELL THE DOCTOR!!!! The first time he told me no blood draws for a month, I said I wasn't comfortable with that. We compromised and I had blood drawn every week and saw the dr. once a month. If your doctor has a problem with your concerns, find a new one. Let us know where you are and I'm sure one of us can hook you up!!! Your dad's age shouldn't come into play. He wants to live a long long life and he should!!!!! Love and Blessings, Jo-Dee From: <asynodis@...> Subject: [ ] my dad Date: Tuesday, November 10, 2009, 5:36 PM  Ok so here we are, i have talked to a few of you via email and now im going to post, my dad found out in August he has CML at the age of 84, he was told by his doctor that his blood looked good last week and that he does not need to see him for 3 months, for me this does not sound right, he was just put on Gleevec at the end of Sept was taken off for a week because the side effects were to bad, just put back on two weeks ago and is now at 400, if anyone has any information on medical care and cml at his age please let me know. thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2009 Report Share Posted November 10, 2009 from what i am understanding they will not be doing that blood test for three months, his white count went down but his red count has not gone up, my dad's over all health is better then most for a 84 yr old man, this is his third bout with cancer he lost his kidney about 3 yrs ago, other then that the normal aches and pains, and some heart issues. > > > Ok so here we are, i have talked to a few of you via email and now im going > to post, my dad found out in August he has CML at the age of 84, he was told > by his doctor that his blood looked good last week and that he does not need > to see him for 3 months, for me this does not sound right, he was just put > on Gleevec at the end of Sept was taken off for a week because the side > effects were to bad, just put back on two weeks ago and is now at 400, if > anyone has any information on medical care and cml at his age please let me > know. > thanks, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2009 Report Share Posted November 10, 2009 here is where my problem is, he has to go to the VA hospital, even though he has Scan the cost to go to the priviate dr with meds is to much for him to afford, i am going to try and get the doctor to call me back to give me more information. thank you for your response From: <asynodis (DOT) com> Subject: [ ] my dad groups (DOT) com Date: Tuesday, November 10, 2009, 5:36 PM  Ok so here we are, i have talked to a few of you via email and now im going to post, my dad found out in August he has CML at the age of 84, he was told by his doctor that his blood looked good last week and that he does not need to see him for 3 months, for me this does not sound right, he was just put on Gleevec at the end of Sept was taken off for a week because the side effects were to bad, just put back on two weeks ago and is now at 400, if anyone has any information on medical care and cml at his age please let me know. thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 I hope you get your info. The next time your dad goes to the VA see if you can accompany him and make sure you are listed as one that can receive his medical information. They are strict on protecting the Veterans privacy. If you can work with the Dr. I think you will find that they will keep you informed so that he will receive the best care possible. The VA is working hard to become patient friendly. The KC VA is the front runner and is working hard to pass this to all the other facallities. I have been talking to my brother in HA and he finally got all of his records straightened out and he said his first visit was awesome. He was blown away by the new attitude of being patient friendly after a lifetime of horror stories. H. DXD 2/03 400mg Gleevec 3/03 Gleevec Vacation 7/08 to present > > From: <asynodis (DOT) com> > Subject: [ ] my dad > groups (DOT) com > Date: Tuesday, November 10, 2009, 5:36 PM > >  > > Ok so here we are, i have talked to a few of you via email and now im going to post, my dad found out in August he has CML at the age of 84, he was told by his doctor that his blood looked good last week and that he does not need to see him for 3 months, for me this does not sound right, he was just put on Gleevec at the end of Sept was taken off for a week because the side effects were to bad, just put back on two weeks ago and is now at 400, if anyone has any information on medical care and cml at his age please let me know. > > thanks, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 i did get to go to one of his appt, the dr was a but abrupt but did finally answer my question, the last two times he went he did not see this dr but a standard md, so now im stuck waiting for 3 months, my concern is the fact that he will not be seen for 4 months and really he has only been on gleevec 400 for two weeks From: dickie_64012 <dickie_64012@...> Subject: Re: [ ] my dad Date: Wednesday, November 11, 2009, 5:06 AM  I hope you get your info. The next time your dad goes to the VA see if you can accompany him and make sure you are listed as one that can receive his medical information. They are strict on protecting the Veterans privacy. If you can work with the Dr. I think you will find that they will keep you informed so that he will receive the best care possible. The VA is working hard to become patient friendly. The KC VA is the front runner and is working hard to pass this to all the other facallities. I have been talking to my brother in HA and he finally got all of his records straightened out and he said his first visit was awesome. He was blown away by the new attitude of being patient friendly after a lifetime of horror stories. H. DXD 2/03 400mg Gleevec 3/03 Gleevec Vacation 7/08 to present > > From: <asynodis (DOT) com> > Subject: [ ] my dad > groups (DOT) com > Date: Tuesday, November 10, 2009, 5:36 PM > >  > > Ok so here we are, i have talked to a few of you via email and now im going to post, my dad found out in August he has CML at the age of 84, he was told by his doctor that his blood looked good last week and that he does not need to see him for 3 months, for me this does not sound right, he was just put on Gleevec at the end of Sept was taken off for a week because the side effects were to bad, just put back on two weeks ago and is now at 400, if anyone has any information on medical care and cml at his age please let me know. > > thanks, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 I'd be uncomfortable with a three-month period between doctor visits. I would want him to be seen at least once a month, at least for my peace of mind. When I was first diagnosed in 2005, I was seen once a week for several weeks, then once a month. Now, nearly five years later, it's two months. On Tue, Nov 10, 2009 at 9:40 PM, Empero <asynodis@...> wrote: > > > i did get to go to one of his appt, the dr was a but abrupt but did finally > answer my question, the last two times he went he did not see this dr but a > standard md, so now im stuck waiting for 3 months, my concern is the fact > that he will not be seen for 4 months and really he has only been on gleevec > 400 for two weeks > > > > From: dickie_64012 <dickie_64012@... <dickie_64012%40>> > > Subject: Re: [ ] my dad > <%40> > Date: Wednesday, November 11, 2009, 5:06 AM > > > > > I hope you get your info. The next time your dad goes to the VA see if you > can accompany him and make sure you are listed as one that can receive his > medical information. They are strict on protecting the Veterans privacy. If > you can work with the Dr. I think you will find that they will keep you > informed so that he will receive the best care possible. The VA is working > hard to become patient friendly. The KC VA is the front runner and is > working hard to pass this to all the other facallities. I have been talking > to my brother in HA and he finally got all of his records straightened out > and he said his first visit was awesome. He was blown away by the new > attitude of being patient friendly after a lifetime of horror stories. > > H. > DXD 2/03 > 400mg Gleevec 3/03 > Gleevec Vacation 7/08 to present > > > > > > From: <asynodis (DOT) com> > > Subject: [ ] my dad > > groups (DOT) com > > Date: Tuesday, November 10, 2009, 5:36 PM > > > > Â > > > > Ok so here we are, i have talked to a few of you via email and now im > going to post, my dad found out in August he has CML at the age of 84, he > was told by his doctor that his blood looked good last week and that he does > not need to see him for 3 months, for me this does not sound right, he was > just put on Gleevec at the end of Sept was taken off for a week because the > side effects were to bad, just put back on two weeks ago and is now at 400, > if anyone has any information on medical care and cml at his age please let > me know. > > > > thanks, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 Oh i am, the problem is that his girlfriend went with him and got all excited thinking the cancer was under control, i told her that with out the proper testing there was know way to determine that, and with the blood test they were doing it would not show it, as of now they have not scheduled another bone marrow test, all though his white count is down his red count has not improved, which leads me to believe that he should be watched closely. > > From: dickie_64012 <dickie_64012@... <dickie_64012%40>> > > Subject: Re: [ ] my dad > <%40> > Date: Wednesday, November 11, 2009, 5:06 AM > > > > > I hope you get your info. The next time your dad goes to the VA see if you > can accompany him and make sure you are listed as one that can receive his > medical information. They are strict on protecting the Veterans privacy. If > you can work with the Dr. I think you will find that they will keep you > informed so that he will receive the best care possible. The VA is working > hard to become patient friendly. The KC VA is the front runner and is > working hard to pass this to all the other facallities. I have been talking > to my brother in HA and he finally got all of his records straightened out > and he said his first visit was awesome. He was blown away by the new > attitude of being patient friendly after a lifetime of horror stories. > > H. > DXD 2/03 > 400mg Gleevec 3/03 > Gleevec Vacation 7/08 to present > > > > > > From: <asynodis (DOT) com> > > Subject: [ ] my dad > > groups (DOT) com > > Date: Tuesday, November 10, 2009, 5:36 PM > > > > Â > > > > Ok so here we are, i have talked to a few of you via email and now im > going to post, my dad found out in August he has CML at the age of 84, he > was told by his doctor that his blood looked good last week and that he does > not need to see him for 3 months, for me this does not sound right, he was > just put on Gleevec at the end of Sept was taken off for a week because the > side effects were to bad, just put back on two weeks ago and is now at 400, > if anyone has any information on medical care and cml at his age please let > me know. > > > > thanks, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 > > i did get to go to one of his appt, the dr was a but abrupt but did finally answer my question, the last two times he went he did not see this dr but a standard md, so now im stuck waiting for 3 months, my concern is the fact that he will not be seen for 4 months and really he has only been on gleevec 400 for two weeks ________________________ Hi , If you Dad has only been on Gleevec for 2 weeks.......YES, he should not be waiting 4 months to see the doctor again. He should have a simple CBC maybe every week or two until his blood counts have stabilized (to know that they are not dropping too low). Usually the blood test can just be done locally at a lab and the results faxed to the doctor....also the doctor should give you and your Dad permission to have a copy of the results each time the test is done (it is a quick test, or the results could be mailed to you). They also should do a blood chemistry to make sure the drug is not affecting his liver and causing the liver enzymes to go up. This should be about every 4-6 weeks in the early stages also. These are the standard blood tests that the CML specialists do and they monitor regularly in the beginning. I hope you will have good luck in talking to someone about getting more frequent blood tests. If your Dad has a local GP, that doctor can order these blood tests and then fax them to the oncologist at the VA. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 I'm with you! On Wed, Nov 11, 2009 at 7:18 AM, Empero <asynodis@...> wrote: > > > Oh i am, the problem is that his girlfriend went with him and got all > excited thinking the cancer was under control, i told her that with out the > proper testing there was know way to determine that, and with the blood test > they were doing it would not show it, as of now they have not scheduled > another bone marrow test, all though his white count is down his red count > has not improved, which leads me to believe that he should be watched > closely. > > > > > > From: dickie_64012 <dickie_64012@... <dickie_64012%40><dickie_64012% > 40>> > > > > > Subject: Re: [ ] my dad > > <%40> <% > 40> > > > Date: Wednesday, November 11, 2009, 5:06 AM > > > > > > > > > > I hope you get your info. The next time your dad goes to the VA see if > you > > can accompany him and make sure you are listed as one that can receive > his > > medical information. They are strict on protecting the Veterans privacy. > If > > you can work with the Dr. I think you will find that they will keep you > > informed so that he will receive the best care possible. The VA is > working > > hard to become patient friendly. The KC VA is the front runner and is > > working hard to pass this to all the other facallities. I have been > talking > > to my brother in HA and he finally got all of his records straightened > out > > and he said his first visit was awesome. He was blown away by the new > > attitude of being patient friendly after a lifetime of horror stories. > > > > H. > > DXD 2/03 > > 400mg Gleevec 3/03 > > Gleevec Vacation 7/08 to present > > > > > > > > > > From: <asynodis (DOT) com> > > > Subject: [ ] my dad > > > groups (DOT) com > > > Date: Tuesday, November 10, 2009, 5:36 PM > > > > > > Â > > > > > > Ok so here we are, i have talked to a few of you via email and now im > > going to post, my dad found out in August he has CML at the age of 84, he > > was told by his doctor that his blood looked good last week and that he > does > > not need to see him for 3 months, for me this does not sound right, he > was > > just put on Gleevec at the end of Sept was taken off for a week because > the > > side effects were to bad, just put back on two weeks ago and is now at > 400, > > if anyone has any information on medical care and cml at his age please > let > > me know. > > > > > > thanks, > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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