Re: [CMLHope] Skip Duffie
Hi Beth, I am so glad we've connected once again. I do think of you often and wonder how you are doing. I went to a GI doctor today and they are doing a scope (down the throat) on Tues. Meanwhile, I have to get a CAT Scan and blood work done, etc. etc. This is a new doctor, but he seems nice. I was seeing another one for Colonoscopies in Allentown, which is about 50 miles from here, and since we are getting older, it's not a good thing to travel this far. I could drive down, but my Husband is in his 80's and gets confused so only drives locally now. I didn't want to change doctors, but decided that having one 20 minutes away would work better for me. I'm having such a problem with nausea, blotting, pain after eating, etc. etc. so must do something to find the problem. Wish me luck. It gets hard to deal with all of my problems at times, but I just take them one at a time and try to get past it. You will always be on my mind, and in my prayers. Feel free to write anytime. If you want to get in touch via my e-mail address. It is ho...@ptd.net. You can always talk to me about anything. It does help. I also admire Judi. She has a lot of issues, but keeps on going. Many hugs, Millie - Original Message - From: bkbar...@aol.com To: cmlhope@googlegroups.com Sent: Tuesday, April 23, 2013 7:47 PM Subject: Re: [CMLHope] Skip Duffie Thank you so much for your post Millie. I am sorry that you are up at 4 a.m..and as usual, am so inspired by your attitude. but also your resiliency. Judy walking the grand canyon still inspires me, and her continued capacity to walk like that for this years fundraiser. Everyone's experience with CML is different, but finding words, or experiences that mirror your own..I find it comforting. spring will come...!!! Write soon. take care, Beth -Original Message- From: C.M. Houtz To: cmlhope Sent: Sat, Apr 20, 2013 3:05 am Subject: Re: [CMLHope] Skip Duffie Hi Beth, I know you struggle with your meds and that you have had so many side effects. I'm so sorry that this new drug has caused you such problems. I am not sleeping well tonight, so decided to get up and do some things on here that I've been meaning to do. I wanted to print out some patterns to hand stitch. I haven't been feeling well, and am seeing an Gastrointerologist (spelling is wrong), but at 4:00 A.M., what do you expect :>). When I came off of two months of Home Caredue to a hip problem, I thought I'd be feeling better, but started with nausea. It's not every day, but enough that I am having trouble dealing with it. I also was in severe pain due to my polymyalgia. After years on Tasigna and dealing with constipation, I'm dealing with the opposite most days. I had a sinus infection and my doctor put me on an antibiotic and that got rid of it, but the stomach problems have stayed with me. I also was taking meds for acid reflux and now, after a year on the stuff, Express Script has told me that it can interfere with the Tasigna, so had to stop that. My pain and whatever has made me so weak that it's almost impossible for me to get up from a chair without help. I'm not sure if the Arthritis has caused this, or if it's a medication problem, but I can understand where you are coming from. I'm anxious to see my Oncologist next month and, hopefully, I'll still be in remission. We all have issues, but must stay strong and fight it as hard as we can. I know that it sounds easy, and know that it isn't, but just remember that we're all here to help one another, and you all have helped me so much. People look at you and think...you look well, and don't realize how difficult this CML is to fight. I look in the mirror and wonder who this old lady is as my hair if all but gone and I no longer have eye lashes, but I try to laugh and just put my wig on and go out whenever I can do it. Lately, that hasn't been to often. The weather is getting better so one of these days, I'm going to go out with my jazzy chair and enjoy the warmer days. I fill in the rest of my time with needle work. I'm doing a lot of embroidery right now, and quilting. I have two quilt tops to finish up and then will have someone get them ready for me to quilt. I try to fill my head with things that I love to do, and that seems to help. I wish there was more that I could say and do to help you. I will keep you in my thoughts and prayers and hope that you will be in remission soon. Take care...Hugs, 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://
Re: [CMLHope] Test Results
Thinking of you Richard. Wishing you all good things. And it is GOOD news that you were able to be off for five years thus far. Take good care, Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Wed, Apr 24, 2013 6:33 pm Subject: Re: [CMLHope] Test Results Hi Richard, As I said on the other site, I wish you the best of luck. 18's Marty On Wed, Apr 24, 2013 at 6:16 PM, Richard H wrote: My tests show a sharp increase in counts indicating that my Gleevec vacation is coming to an end. I will complete my 5th year off Gleevec by being retested to be sure this test was correct. My ONC and I agree that is correct when we viewed the graph for the last 3 years. I will also have a BMB to see if any mutations have occurred. I feel better than I have for years, so it is hard believe that it is happening. The GOOD news is I was able to complete 5 years when most people pursing this path failed in less than two. Richard H. dxd 2/2003 400mg Gleevec 3/2003 Undetectable 11/03 RT-PCR negative 11/04 QT-PCR .003 11/05 11/8 RBC 8. Gleevec Vacation 11/06-6/07 Iron infusion 11/06 Transfusions 12/06-5/07 QT-PCR .007 Gleevec 1/08 -5/08 Gleevec Vacation 7/08-Present QT-PCR .003 4/09 QT-PCR .00156/09 QT-PCR .00219/09 QT-PCR .00281/10 QT-PCR .001 4/10 QT-PCR .00468 10/10 QT-PCR 1.049% 2/11 QT-PCR .0612% 8/11 QT-PCR 2.616 %2/12 QT-PCR 2.410% 8/12 QT-PCR 9.183% 4/13 -- -- [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] Test Results
Hi Richard, As I said on the other site, I wish you the best of luck. 18's Marty On Wed, Apr 24, 2013 at 6:16 PM, Richard H wrote: > My tests show a sharp increase in counts indicating that my Gleevec > vacation is coming to an end. I will complete my 5th year off Gleevec by > being retested to be sure this test was correct. My ONC and I agree that > is correct when we viewed the graph for the last 3 years. I will also have > a BMB to see if any mutations have occurred. > > I feel better than I have for years, so it is hard believe that it is > happening. The GOOD news is I was able to complete 5 years when most > people pursing this path failed in less than two. > > > > Richard H. > > ** ** > > dxd 2/2003 > > 400mg Gleevec 3/2003 > > Undetectable 11/03 > > RT-PCR negative 11/04 > > QT-PCR .003 11/05 > > 11/8 RBC 8. > > Gleevec Vacation 11/06-6/07 > > Iron infusion 11/06 > > Transfusions 12/06-5/07 > > QT-PCR .007 > > Gleevec 1/08 -5/08 > > Gleevec Vacation 7/08-Present > > QT-PCR .003 4/09 > > QT-PCR .00156/09 > > QT-PCR .00219/09 > > QT-PCR .00281/10 > > QT-PCR .001 4/10 > > QT-PCR .00468 10/10 > > QT-PCR 1.049% 2/11 > > QT-PCR .0612% 8/11 > > QT-PCR 2.616 %2/12 > > QT-PCR 2.410% 8/12 > > QT-PCR 9.183% 4/13 > > ** ** > > -- > -- > [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] Test Results
Richard, I hope the best for, it's been a good run for you. greenie In a message dated 4/24/2013 6:16:38 P.M. Eastern Daylight Time, richard1huff...@comcast.net writes: My tests show a sharp increase in counts indicating that my Gleevec vacation is coming to an end. I will complete my 5th year off Gleevec by being retested to be sure this test was correct. My ONC and I agree that is correct when we viewed the graph for the last 3 years. I will also have a BMB to see if any mutations have occurred. I feel better than I have for years, so it is hard believe that it is happening. The GOOD news is I was able to complete 5 years when most people pursing this path failed in less than two. Richard H. dxd 2/2003 400mg Gleevec 3/2003 Undetectable 11/03 RT-PCR negative 11/04 QT-PCR .003 11/05 11/8 RBC 8. Gleevec Vacation 11/06-6/07 Iron infusion 11/06 Transfusions 12/06-5/07 QT-PCR .007 Gleevec 1/08 -5/08 Gleevec Vacation 7/08-Present QT-PCR .003 4/09 QT-PCR .0015 6/09 QT-PCR .0021 9/09 QT-PCR .0028 1/10 QT-PCR .001 4/10 QT-PCR .00468 10/10 QT-PCR 1.049% 2/11 QT-PCR .0612% 8/11 QT-PCR 2.616 %2/12 QT-PCR 2.410% 8/12 QT-PCR 9.183% 4/13 -- -- [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.
[CMLHope] Test Results
My tests show a sharp increase in counts indicating that my Gleevec vacation is coming to an end. I will complete my 5th year off Gleevec by being retested to be sure this test was correct. My ONC and I agree that is correct when we viewed the graph for the last 3 years. I will also have a BMB to see if any mutations have occurred. I feel better than I have for years, so it is hard believe that it is happening. The GOOD news is I was able to complete 5 years when most people pursing this path failed in less than two. Richard H. dxd 2/2003 400mg Gleevec 3/2003 Undetectable 11/03 RT-PCR negative 11/04 QT-PCR .003 11/05 11/8 RBC 8. Gleevec Vacation 11/06-6/07 Iron infusion 11/06 Transfusions 12/06-5/07 QT-PCR .007 Gleevec 1/08 -5/08 Gleevec Vacation 7/08-Present QT-PCR .003 4/09 QT-PCR .00156/09 QT-PCR .00219/09 QT-PCR .00281/10 QT-PCR .001 4/10 QT-PCR .00468 10/10 QT-PCR 1.049% 2/11 QT-PCR .0612% 8/11 QT-PCR 2.616 %2/12 QT-PCR 2.410% 8/12 QT-PCR 9.183% 4/13 -- -- [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] Sending hugs!
Camille, next time to see your Doctor ask him/or her if it would be O.K. to try 300mg each day. Back in Jan. of 2000 when I started Gleevec I started on 400 mg and I got the Gleevec rash. They had no idea what was wrong, this was before it was approved my the FDA. They reduced it to 300 mg and I've been on the for over 13 years and my counts are perfect. Everyone is different but it won't hurt to as and try it for 3 months and see if you feel better. Just a through. Greenie Fort Myers, FL. club member #48 In a message dated 4/24/2013 12:01:37 P.M. Eastern Daylight Time, wannabni...@yahoo.com writes: I am sending hugs to all CML survivors! I mostly lurk, but I share in spirit your joys and pains. This October it will be 10 years ago I was dx. I'm still on Gleevic 400mg a day that I take at night with Protonix for acid reflux. Some years ago I had an awful 6 MONTH infection that started in my ears and went back and forth, up and down. I eventually was put on Bactrum, it knocked out all my good flora in my gut. Since getting the infection taken care of, I now try to eat a good yogurt least a couple of times a week of not daily. It has helped with the stomach and intestinal problems and if I could stay away from spicy food and junk food (working on it) I could probably get rid of the Protonix. I no longer work (it became unsafe) and am now a full-time student working towards a BA in psychology. My twin sons live in another state and my daughter and 6month granddaughter live with me. My pain ebbs and flows. And the Gleevic side effects just annoy me mostly, and leave me down for the count a few days at a time. My family and close friends can tell when I am sick, most others have no clue. Mostly I keep in the forefront of my thoughts that I am truly blessed. I try to live each day to the fullest and be thankful for what I do have and not worry about what I have lost. Be well my friends, Camille Dx 10/03 Gleevic 400mg -- -- [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] Sending hugs!
I am sending hugs to all CML survivors! I mostly lurk, but I share in spirit your joys and pains. This October it will be 10 years ago I was dx. I'm still on Gleevic 400mg a day that I take at night with Protonix for acid reflux. Some years ago I had an awful 6 MONTH infection that started in my ears and went back and forth, up and down. I eventually was put on Bactrum, it knocked out all my good flora in my gut. Since getting the infection taken care of, I now try to eat a good yogurt least a couple of times a week of not daily. It has helped with the stomach and intestinal problems and if I could stay away from spicy food and junk food (working on it) I could probably get rid of the Protonix. I no longer work (it became unsafe) and am now a full-time student working towards a BA in psychology. My twin sons live in another state and my daughter and 6month granddaughter live with me. My pain ebbs and flows. And the Gleevic side effects just annoy me mostly, and leave me down for the count a few days at a time. My family and close friends can tell when I am sick, most others have no clue. Mostly I keep in the forefront of my thoughts that I am truly blessed. I try to live each day to the fullest and be thankful for what I do have and not worry about what I have lost. Be well my friends, Camille Dx 10/03 Gleevic 400mg -- -- [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.
