Re: [CMLHope] Doctors Visit
Good luck Susan. I am on Sprycel and doing good. Blessings, Jeanie<3 -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Doctors Visit
Hi Susan, I'm up so late, or early, depending on how you look at it, but had a very late nap today and wanted to catch up on some things. I'm heading up to bed very soon. I had my computer guy work on this computer and now it's not bringing in my e-mail or sending it out right, so I have to do it manually, and so that's what I'm doing. I wrote him earlier, so perhaps tomorrow he'll get on and straighten the mess out. I deal with things different then a lot of people. I know that we all have issues, just different kinds. I also am a very compassionate person and wanted to work with Hospice but in the shape I'm in, couldn't do it now. I couldn't get from point A to point B to do it. The doctor is going to try to get me back on Home Care and that means I don't leave the house. I have such a hard time even getting dressed that most days I'm in my pajamas all day. I'm exhausted just trying to get dressed. I do love helping people though and it seems to make my life mean something. I know how everyone on this site has problems, some better then others and some a lot worse. I just have to try to deal with what is. I've been given a lot more time then I ever expected as when I was diagnosed I was given 5 years unless I had a bone transplant and I was on the border age wise (they don't work after a certain age). I was pushing that age, and opted to give those 5 years to my children. Well, I've been given 3 times that time and I'm so happy for what I've had. I'm not giving in to anything, but just know how lucky I am to have had this time. The thing I mind the most is not being able to get out with my friends to the quilt shows and now to my guild meetings. They mean so much to me, and now I'm unable to do these things. I just have to be happy with doing what I can at home and keeping busy. I do get tired very easy so at 4:00 P.M. had to take a nap and so I did. I don't sleep well at night anyway. I tell my family that I should work nights and sleep during the day. Seems to be what my body wants to do. You take care and let me know how it's going. I know that you have a lot of issues with the medication. I think it affects us all, because I did so well on tasigna with no side effects, except constipation and now can't take it because of my liver, so we shall see what they're going to do. I do have great faith in my Oncologist. He's like part of my family now after 20 years and I can't say enough nice things about him. What he doesn't know, he'll try to find out, but I keep him busy trying to figure me out. I tell him that he's earning the money that I have to pay him. :>) Talk to you soon. Let me know how things are going for you. I'm always here to listen. Many hugs and lots of Marty's 18's...Millie -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Doctors Visit
Millie, I've been in the "compassion" business if you want to crassly call it that...and you are the most compassionate person I have ever seen on this site!!! You are going through SO much more at this time than me, and yet you take the time to write something so sweet to everyone possible. Always helpful, always upbeat, always compassionate. Kudos to you and I sure am praying for you as well. I am so blessed I can stay off the medicine for a little more time! I pray you are able to get out of pain for good here, as pain is so very hard to deal with. It turns most of us into raging maniacs, but not you! Thanks for writing, from the bottom of my heart. 18's, Susan -Original Message- From: C.M. Houtz To: cmlhope Sent: Thu, Aug 1, 2013 8:46 pm Subject: Re: [CMLHope] Doctors Visit As always...you're in my prayers and I wish you only the best. I hope that the new doctor can find the reason for the bleeds. I did have eye bleeds on Gleevec, but not so much on Tasigna. I believe that I've only had one, and it wasn't to bad. I know how much it must worry you, but things have a way of working out for the best, and I pray that this is one of those times. Hang in there.Hugs, and 18's to you.Millie -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Doctors Visit
As always...you're in my prayers and I wish you only the best. I hope that the new doctor can find the reason for the bleeds. I did have eye bleeds on Gleevec, but not so much on Tasigna. I believe that I've only had one, and it wasn't to bad. I know how much it must worry you, but things have a way of working out for the best, and I pray that this is one of those times. Hang in there.Hugs, and 18's to you.Millie -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Doctors Visit
Susan, glad to here the good news. She's my Doctor and I have complete trust in here. Keep us informed. Greenie In a message dated 8/1/2013 6:04:35 P.M. Eastern Daylight Time, rszim0...@aol.com writes: Hello everyone, I just wanted to report back after going to my first visit yesterday to Northwestern to see Dr. Altman. I loved her and feel great about her intentions to help. The decision was made to send me to another hematologist there at Northwestern who is a specialist in bleeding disorders to see what the problem might be. Six years has gone by since the Florida docs tried to find a cause and could not. Sowe pray the new doc will find some actual cause besides cavernous malformations. Those of you who missed it, I am trying to go back on a drug for CML after being off six years. I chose to stay off due to brain bleeds and a serious stroke I had 3 years ago. So at this point I am waiting for them to call and schedule the upcoming appt. She prefers tasigna but may end up using bosutinib after discussing with Dr. Pinilla and getting to the bottom of the bleeding problem. Thumbs up for all!!! I am praying for all of you and thank you so much for the encouragement to get something done. She is not concerned with me not taking medicine for the time being. Love and 18's, Susan -Original Message- From: Myvety2k To: cmlhope Sent: Thu, Aug 1, 2013 3:40 pm Subject: Re: [CMLHope] Doctors Visit Thanks everyone for your replies on the eye problem. greenie In a message dated 7/31/2013 9:33:39 P.M. Eastern Daylight Time, _houtz@ptd.net_ (mailto:ho...@ptd.net) writes: We both have been through a lot, so I know that you understand where I am. I'm doing okay and trying to handle everything, but a week ago I did have an anxiety attack and it scared me, but when I told the doctor about it, she said that it was bound to happen as I keep to much in side and needed to release it, so I did. Wow, never had one before and hope not to have it happen again. I had lots of company today, and that's always good for me. I do enjoy having people around me. My doctor is trying to get me back on Home Care once again as my feet are so swollen...as are my legs and I need to have someone taking care of this and other problems. Our home care is excellent, but don't know if I will qualify right now. Social Security pays for that one, and they have set times you're allowed to be on it. You take care and it was so good seeing you on here. 18's to you, Millie -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subsc
Re: [CMLHope] Doctors Visit
That is great news Susan. I am thrilled with the quick followup, and that you really liked Dr. Altman. Super! Keep us posted. Beth -Original Message- From: Susan Zimmerman To: cmlhope Sent: Thu, Aug 1, 2013 4:04 pm Subject: Re: [CMLHope] Doctors Visit Hello everyone, I just wanted to report back after going to my first visit yesterday to Northwestern to see Dr. Altman. I loved her and feel great about her intentions to help. The decision was made to send me to another hematologist there at Northwestern who is a specialist in bleeding disorders to see what the problem might be. Six years has gone by since the Florida docs tried to find a cause and could not. Sowe pray the new doc will find some actual cause besides cavernous malformations. Those of you who missed it, I am trying to go back on a drug for CML after being off six years. I chose to stay off due to brain bleeds and a serious stroke I had 3 years ago. So at this point I am waiting for them to call and schedule the upcoming appt. She prefers tasigna but may end up using bosutinib after discussing with Dr. Pinilla and getting to the bottom of the bleeding problem. Thumbs up for all!!! I am praying for all of you and thank you so much for the encouragement to get something done. She is not concerned with me not taking medicine for the time being. Love and 18's, Susan -Original Message- From: Myvety2k To: cmlhope Sent: Thu, Aug 1, 2013 3:40 pm Subject: Re: [CMLHope] Doctors Visit Thanks everyone for your replies on the eye problem. greenie In a message dated 7/31/2013 9:33:39 P.M. Eastern Daylight Time, ho...@ptd.net writes: We both have been through a lot, so I know that you understand where I am. I'm doing okay and trying to handle everything, but a week ago I did have an anxiety attack and it scared me, but when I told the doctor about it, she said that it was bound to happen as I keep to much in side and needed to release it, so I did. Wow, never had one before and hope not to have it happen again. I had lots of company today, and that's always good for me. I do enjoy having people around me. My doctor is trying to get me back on Home Care once again as my feet are so swollen...as are my legs and I need to have someone taking care of this and other problems. Our home care is excellent, but don't know if I will qualify right now. Social Security pays for that one, and they have set times you're allowed to be on it. You take care and it was so good seeing you on here. 18's to you, Millie -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com --
Re: [CMLHope] Doctors Visit
Hello everyone, I just wanted to report back after going to my first visit yesterday to Northwestern to see Dr. Altman. I loved her and feel great about her intentions to help. The decision was made to send me to another hematologist there at Northwestern who is a specialist in bleeding disorders to see what the problem might be. Six years has gone by since the Florida docs tried to find a cause and could not. Sowe pray the new doc will find some actual cause besides cavernous malformations. Those of you who missed it, I am trying to go back on a drug for CML after being off six years. I chose to stay off due to brain bleeds and a serious stroke I had 3 years ago. So at this point I am waiting for them to call and schedule the upcoming appt. She prefers tasigna but may end up using bosutinib after discussing with Dr. Pinilla and getting to the bottom of the bleeding problem. Thumbs up for all!!! I am praying for all of you and thank you so much for the encouragement to get something done. She is not concerned with me not taking medicine for the time being. Love and 18's, Susan -Original Message- From: Myvety2k To: cmlhope Sent: Thu, Aug 1, 2013 3:40 pm Subject: Re: [CMLHope] Doctors Visit Thanks everyone for your replies on the eye problem. greenie In a message dated 7/31/2013 9:33:39 P.M. Eastern Daylight Time, ho...@ptd.net writes: We both have been through a lot, so I know that you understand where I am. I'm doing okay and trying to handle everything, but a week ago I did have an anxiety attack and it scared me, but when I told the doctor about it, she said that it was bound to happen as I keep to much in side and needed to release it, so I did. Wow, never had one before and hope not to have it happen again. I had lots of company today, and that's always good for me. I do enjoy having people around me. My doctor is trying to get me back on Home Care once again as my feet are so swollen...as are my legs and I need to have someone taking care of this and other problems. Our home care is excellent, but don't know if I will qualify right now. Social Security pays for that one, and they have set times you're allowed to be on it. You take care and it was so good seeing you on here. 18's to you, Millie -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Doctors Visit
Thanks everyone for your replies on the eye problem. greenie In a message dated 7/31/2013 9:33:39 P.M. Eastern Daylight Time, ho...@ptd.net writes: We both have been through a lot, so I know that you understand where I am. I'm doing okay and trying to handle everything, but a week ago I did have an anxiety attack and it scared me, but when I told the doctor about it, she said that it was bound to happen as I keep to much in side and needed to release it, so I did. Wow, never had one before and hope not to have it happen again. I had lots of company today, and that's always good for me. I do enjoy having people around me. My doctor is trying to get me back on Home Care once again as my feet are so swollen...as are my legs and I need to have someone taking care of this and other problems. Our home care is excellent, but don't know if I will qualify right now. Social Security pays for that one, and they have set times you're allowed to be on it. You take care and it was so good seeing you on here. 18's to you, Millie -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Doctors Visit
We both have been through a lot, so I know that you understand where I am. I'm doing okay and trying to handle everything, but a week ago I did have an anxiety attack and it scared me, but when I told the doctor about it, she said that it was bound to happen as I keep to much in side and needed to release it, so I did. Wow, never had one before and hope not to have it happen again. I had lots of company today, and that's always good for me. I do enjoy having people around me. My doctor is trying to get me back on Home Care once again as my feet are so swollen...as are my legs and I need to have someone taking care of this and other problems. Our home care is excellent, but don't know if I will qualify right now. Social Security pays for that one, and they have set times you're allowed to be on it. You take care and it was so good seeing you on here. 18's to you, Millie -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Doctors Visit
Hi GreenieYou got the right information on your eyes. The first time it happened to me...I was on Gleevec at the time, I really got scared and went to my eye doctor and he didn't know what to think as he was unfamiliar with the Gleevec, but I took him some information and he checked it out and told me the same thing. I still use the liquid tears and they do help, even on Tasigna, but haven't had but one eye bleed since being on the tasigna. What I want to see if a picture of you with your eye lids down to your belly. It made me smile, and I really need that lately. Thanks for doing that. I do hope that you can get your eye lids taken care of. I haven't had that problem, yet, and I don't want to. I have enough without that. 18's to youMillie -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Doctors Visit
Dear Millie, you have been through so much, but you are a very strong person. I wish you the very best of luck 18's Marty On Wed, Jul 31, 2013 at 12:46 AM, C.M. Houtz wrote: > ** > *Hi all, I did tell you I'd let you know how my Doctors visit went > today. Well, we did straighten a lot out, about meds. etc. but nothing > about the liver. She has talked to the other doctors and no one seems to > know where they're going with this one. They think it's all being caused > by the meds and I'm on so many that could have caused it. She said it > probably started on Gleevec as they had me on twice the amount of what > others were taking, and then it stopped working after being on it for years > and he put me on the Tasigna. That's been great and got me into remission, > but it also probably cost me...causing the liver problems. Well, I take so > many drugs that could have caused it...or the combination of them all and > we probably will never know. She did tell me that she had talked to the > other doctors and Dr. Gandhi (my Oncologist) is talking with the people who > make the drug and see if their doctors can come up with something. I'm > still off of the Tasigna, so..when they make up their minds, I will let > you know where we're going from here. She also addressed my pain and wants > me to go back to pain management and see if injections might help the > pain. They also won't go through the liver, so it's a good choice for that > problem (if it works) I'm trying to stay positive and work with them > on whatever I can. Just wanted you all to know where I'm at and will let > you know when they make a decision about what to do with me* > ** > *Hope everyone is fine tonight. I'm heading to bed as I really need a > good nights sleep.* > ** > *You're always in my thoughts and prayers,* > *Hugs to all,* > *Millie* > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/groups/opt_out. > > > -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Doctors Visit
Thank you for your reply. No one has ever explained it to me this way. Of course their's nothing you can do about the droopy eye lids put they are going to fix that next month. Thanks again, greenie In a message dated 7/31/2013 7:44:29 P.M. Eastern Daylight Time, pfemail...@gmail.com writes: Hi Greenie – The watery eyes are caused by the way Gleevec dries up the eyes. It may sound strange but the solution that many patients use is daily use of lubricating eye drops. Some patients use basic lubricating drops and some use the artificial tears type of drops. Some put in drops once a day, some do this in the morning and at the end of the day. Here is additional information from a presentation by Dr. Druker’s nurse, Carolyn Blasdel. Hope you find this helpful! Pat Eyes Swelling around the eyes (periorbital edema)—one of my patients calls it “ pig- eye.” This is probably the most common Gleevec side effect. Excessive tearing is common. Blurry vision with tearing happens. Also, bleeding into the whites of the eyes (sub-conjunctival hemorrhages) occurs. A blood vessel breaks and you feel a stinging pain. There is bright red blood in the white of the eye. It ’s very scary looking, but it is not serious. To treat this we use artificial tears, even when you are having excessive tearing. Using additional tears can help keep the eyes washed out. Prescription steroid eye drops has been helpful for some people. If you are having a lot of trouble with tearing, I encourage you to see an ophthal- mologist so that he/she can look to see if any mechanical problems can be cor- rected. There is no treatment needed for sub-conjunctival hemorrhages. The body absorbs the blood on its own and the eye will return to normal without any permanent damage From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of myvet...@aol.com Sent: Wednesday, July 31, 2013 4:32 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Doctors Visit Hi everyone, I have a question? I've been on Gleevec for over 13 years and over the years I have had watery eye's and burred vision. Mostly the right eye, a week or two will go by then I'll get up and the left eye will be burred but mostly the right eye. It's hard to get glasses because my eyes keep changing. Has anyone else had the same problem, if so please let me know. I'm going in next month to have my eye lids lowered they are dragging down to my feet, and the bottom of my eyes are almost as bad. When I wake in the morning I look like a balloon is around my eyes. My bottom of my eye is hanging down to my belly. It's not a pretty sight. Stay healthy, greenie In a message dated 7/31/2013 3:38:27 P.M. Eastern Daylight Time, _houtz@ptd.net_ (mailto:ho...@ptd.net) writes: Hi all, I did tell you I'd let you know how my Doctors visit went today. Well, we did straighten a lot out, about meds. etc. but nothing about the liver. She has talked to the other doctors and no one seems to know where they're going with this one. They think it's all being caused by the meds and I'm on so many that could have caused it. She said it probably started on Gleevec as they had me on twice the amount of what others were taking, and then it stopped working after being on it for years and he put me on the Tasigna. That's been great and got me into remission, but it also probably cost me...causing the liver problems. Well, I take so many drugs that could have caused it...or the combination of them all and we probably will never know. She did tell me that she had talked to the other doctors and Dr. Gandhi (my Oncologist) is talking with the people who make the drug and see if their doctors can come up with something. I'm still off of the Tasigna, so..when they make up their minds, I will let you know where we're going from here. She also addressed my pain and wants me to go back to pain management and see if injections might help the pain. They also won't go through the liver, so it's a good choice for that problem (if it works) I'm trying to stay positive and work with them on whatever I can. Just wanted you all to know where I'm at and will let you know when they make a decision about what to do with me Hope everyone is fine tonight. I'm heading to bed as I really need a good nights sleep. You're always in my thoughts and prayers, Hugs to all, Millie -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To
RE: [CMLHope] Doctors Visit
Hi Greenie - The watery eyes are caused by the way Gleevec dries up the eyes. It may sound strange but the solution that many patients use is daily use of lubricating eye drops. Some patients use basic lubricating drops and some use the artificial tears type of drops. Some put in drops once a day, some do this in the morning and at the end of the day. Here is additional information from a presentation by Dr. Druker's nurse, Carolyn Blasdel. Hope you find this helpful! Pat Eyes Swelling around the eyes (periorbital edema)-one of my patients calls it "pig- eye." This is probably the most common Gleevec side effect. Excessive tearing is common. Blurry vision with tearing happens. Also, bleeding into the whites of the eyes (sub-conjunctival hemorrhages) occurs. A blood vessel breaks and you feel a stinging pain. There is bright red blood in the white of the eye. It's very scary looking, but it is not serious. To treat this we use artificial tears, even when you are having excessive tearing. Using additional tears can help keep the eyes washed out. Prescription steroid eye drops has been helpful for some people. If you are having a lot of trouble with tearing, I encourage you to see an ophthal- mologist so that he/she can look to see if any mechanical problems can be cor- rected. There is no treatment needed for sub-conjunctival hemorrhages. The body absorbs the blood on its own and the eye will return to normal without any permanent damage From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of myvet...@aol.com Sent: Wednesday, July 31, 2013 4:32 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Doctors Visit Hi everyone, I have a question? I've been on Gleevec for over 13 years and over the years I have had watery eye's and burred vision. Mostly the right eye, a week or two will go by then I'll get up and the left eye will be burred but mostly the right eye. It's hard to get glasses because my eyes keep changing. Has anyone else had the same problem, if so please let me know. I'm going in next month to have my eye lids lowered they are dragging down to my feet, and the bottom of my eyes are almost as bad. When I wake in the morning I look like a balloon is around my eyes. My bottom of my eye is hanging down to my belly. It's not a pretty sight. Stay healthy, greenie In a message dated 7/31/2013 3:38:27 P.M. Eastern Daylight Time, ho...@ptd.net writes: Hi all, I did tell you I'd let you know how my Doctors visit went today. Well, we did straighten a lot out, about meds. etc. but nothing about the liver. She has talked to the other doctors and no one seems to know where they're going with this one. They think it's all being caused by the meds and I'm on so many that could have caused it. She said it probably started on Gleevec as they had me on twice the amount of what others were taking, and then it stopped working after being on it for years and he put me on the Tasigna. That's been great and got me into remission, but it also probably cost me...causing the liver problems. Well, I take so many drugs that could have caused it...or the combination of them all and we probably will never know. She did tell me that she had talked to the other doctors and Dr. Gandhi (my Oncologist) is talking with the people who make the drug and see if their doctors can come up with something. I'm still off of the Tasigna, so..when they make up their minds, I will let you know where we're going from here. She also addressed my pain and wants me to go back to pain management and see if injections might help the pain. They also won't go through the liver, so it's a good choice for that problem (if it works) I'm trying to stay positive and work with them on whatever I can. Just wanted you all to know where I'm at and will let you know when they make a decision about what to do with me Hope everyone is fine tonight. I'm heading to bed as I really need a good nights sleep. You're always in my thoughts and prayers, Hugs to all, Millie -- -- [CMLHope] A support group of http://cmlhope.com <http://cmlhope.com/> - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group
Re: [CMLHope] Doctors Visit
Hi everyone, I have a question? I've been on Gleevec for over 13 years and over the years I have had watery eye's and burred vision. Mostly the right eye, a week or two will go by then I'll get up and the left eye will be burred but mostly the right eye. It's hard to get glasses because my eyes keep changing. Has anyone else had the same problem, if so please let me know. I'm going in next month to have my eye lids lowered they are dragging down to my feet, and the bottom of my eyes are almost as bad. When I wake in the morning I look like a balloon is around my eyes. My bottom of my eye is hanging down to my belly. It's not a pretty sight. Stay healthy, greenie In a message dated 7/31/2013 3:38:27 P.M. Eastern Daylight Time, ho...@ptd.net writes: Hi all, I did tell you I'd let you know how my Doctors visit went today. Well, we did straighten a lot out, about meds. etc. but nothing about the liver. She has talked to the other doctors and no one seems to know where they're going with this one. They think it's all being caused by the meds and I'm on so many that could have caused it. She said it probably started on Gleevec as they had me on twice the amount of what others were taking, and then it stopped working after being on it for years and he put me on the Tasigna. That's been great and got me into remission, but it also probably cost me...causing the liver problems. Well, I take so many drugs that could have caused it...or the combination of them all and we probably will never know. She did tell me that she had talked to the other doctors and Dr. Gandhi (my Oncologist) is talking with the people who make the drug and see if their doctors can come up with something. I'm still off of the Tasigna, so..when they make up their minds, I will let you know where we're going from here. She also addressed my pain and wants me to go back to pain management and see if injections might help the pain. They also won't go through the liver, so it's a good choice for that problem (if it works) I'm trying to stay positive and work with them on whatever I can. Just wanted you all to know where I'm at and will let you know when they make a decision about what to do with me Hope everyone is fine tonight. I'm heading to bed as I really need a good nights sleep. You're always in my thoughts and prayers, Hugs to all, Millie -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://g roups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
[CMLHope] Doctors Visit
Hi all, I did tell you I'd let you know how my Doctors visit went today. Well, we did straighten a lot out, about meds. etc. but nothing about the liver. She has talked to the other doctors and no one seems to know where they're going with this one. They think it's all being caused by the meds and I'm on so many that could have caused it. She said it probably started on Gleevec as they had me on twice the amount of what others were taking, and then it stopped working after being on it for years and he put me on the Tasigna. That's been great and got me into remission, but it also probably cost me...causing the liver problems. Well, I take so many drugs that could have caused it...or the combination of them all and we probably will never know. She did tell me that she had talked to the other doctors and Dr. Gandhi (my Oncologist) is talking with the people who make the drug and see if their doctors can come up with something. I'm still off of the Tasigna, so..when they make up their minds, I will let you know where we're going from here. She also addressed my pain and wants me to go back to pain management and see if injections might help the pain. They also won't go through the liver, so it's a good choice for that problem (if it works) I'm trying to stay positive and work with them on whatever I can. Just wanted you all to know where I'm at and will let you know when they make a decision about what to do with me Hope everyone is fine tonight. I'm heading to bed as I really need a good nights sleep. You're always in my thoughts and prayers, Hugs to all, Millie -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Doctors visit for 8th aniversary of CML
Hi Richard: Your results interest me because Gleevec has made me rely on Aranesp to stimulate red cell growth. I just took a two month break from Aranesp because I was too dependent. Never hit undetectable but last count was .006 and I am coming up on two years on Gleevec. Are you or were you constantly exhausted? This is becoming my biggest concern, the lack of energy. Once I am moving, I am pretty good but getting out of bed in the morning is tough. Your story makes me feel like it is possible to look ahead to life without drugs. Mind you, I am nonetheless thrilled to have Gleevec and other medications that are able to keep so many of us alive. Marcie Baltimore -Original Message- From: Richard H To: CMLHope Sent: Tue, Feb 22, 2011 5:16 pm Subject: [CMLHope] Doctors visit for 8th aniversary of CML I just returned from receiving the results of my blood test. While he CML leukemia still present and active the counts are only ncreasing at a very slow rate. The Dr. agrees that if I would go ack on the drugs they would be harder on me than living without hem. The Dr. thinks that it is possible that the Gleevec probably liminated the fast growing cells and only the slow ones are left, ased a two year review of three sections of my blood tests. Richard H. xd 2/2003 00mg Gleevec 3/2003 ndetectable 11/03 T-PCR negative 11/04 T-PCR .003 11/05 BC 8. leevec Vacation 11/06-6/07 ron infusion 11/06 ransfusions 12/06-5/07 T-PCR .7 leevec 1/08 -5/08 rocrit 8/08-11/08 leevec Vacation 7/08-Present T-PCR .03 4/09 T-PCR .015 6/09 T-PCR .021 9/09 T-PCR .028 1/10 T-PCR .01+ 4/10 T-PCR .0438 10/10 T-PCR .05 2/11 -- CMLHope] support group of http://cmlhope.com You received this message because you are subscribed to the Google Groups CMLHope" group. o post to this group, send email to CMLHope@googlegroups.com o unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com or more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Doctors visit for 8th aniversary of CML
I just returned from receiving the results of my blood test. While the CML leukemia still present and active the counts are only increasing at a very slow rate. The Dr. agrees that if I would go back on the drugs they would be harder on me than living without them. The Dr. thinks that it is possible that the Gleevec probably eliminated the fast growing cells and only the slow ones are left, based a two year review of three sections of my blood tests. Richard H. dxd 2/2003 400mg Gleevec 3/2003 Undetectable 11/03 RT-PCR negative 11/04 QT-PCR .003 11/05 RBC 8. Gleevec Vacation 11/06-6/07 Iron infusion 11/06 Transfusions 12/06-5/07 QT-PCR .7 Gleevec 1/08 -5/08 Procrit 8/08-11/08 Gleevec Vacation 7/08-Present QT-PCR .03 4/09 QT-PCR .015 6/09 QT-PCR .021 9/09 QT-PCR .028 1/10 QT-PCR .01+ 4/10 QT-PCR .0438 10/10 QT-PCR .05 2/11 -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
