Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 Messages in 2 Topics
It IS strange that no one, or very few, CMLers are posting. Have we become fatigued with focusing on our chronic condition and its side-effects? How many of us have decided just to get on with our lives and to live as fully as we can, trusting that Gleevec or the other inhibitors will keep us going? I think we may have forgotten how dismayed (euphemism) each of us was when we were first diagnosed and how glad we were to find this website and the information and support we received from it. Perhaps there are other, newer CML websites meant to provide information without demanding any personal, emotional involvement on the part of the reader. No doubt pioneers eventually get tired. Maybe that's what's at work here. On Sat, Feb 25, 2012 at 5:50 AM, cmlhope@googlegroups.com wrote: Today's Topic Summary Group: http://groups.google.com/group/cmlhope/topics - FINALLY RELIEF FROM CRAMPShttps://mail.google.com/mail/html/compose/static_files/blank_quirks.html#135b42244878824f_group_thread_0[1 Update] - No postshttps://mail.google.com/mail/html/compose/static_files/blank_quirks.html#135b42244878824f_group_thread_1[1 Update] FINALLY RELIEF FROM CRAMPShttp://groups.google.com/group/cmlhope/t/538b0e9d8515a9e8 dstuede...@aol.com Feb 24 05:05PM -0500 My husband found an ointment that really eliminates the excruciating leg cramps (a side effect of Gleevec). It is called Pain Gon. It reacts fast when applied to the affected area. For more information call Heather Duncan (Quad City Physical Therapy) at 563-359-3799. No posts http://groups.google.com/group/cmlhope/t/dbc4f55a359a3eaa myvet...@aol.com Feb 24 08:33AM -0500 I'm receiving posts. Seems that no one is sending out emails. greenie In a message dated 2/24/2012 12:46:29 A.M. Eastern Standard Time, joy...@htc.net writes: Where did everybody go??? Have not received a post for many days now. Checked my email settings and quarantine box. Everything looks good. Can't believe no one is posting. Anybody else having problems, other than Richard and I? Joyce in IL -- [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 Group cmlhope. You can post via email cmlhope@googlegroups.com. To unsubscribe from this group, sendcmlhope+unsubscr...@googlegroups.coman empty message. For more options, visit http://groups.google.com/group/cmlhope/topicsthis group. -- [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] 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
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 Messages in 2 Topics
Actually why many stopped posting was because the posters names are showing up on the internet and many do not want their employer, clients etc to know they have CML. Just Google cmlhope and you get the link to ever post on this thread On Feb 25, 2012 9:58 AM, Victoria Reiter vkrei...@gmail.com wrote: It IS strange that no one, or very few, CMLers are posting. Have we become fatigued with focusing on our chronic condition and its side-effects? How many of us have decided just to get on with our lives and to live as fully as we can, trusting that Gleevec or the other inhibitors will keep us going? I think we may have forgotten how dismayed (euphemism) each of us was when we were first diagnosed and how glad we were to find this website and the information and support we received from it. Perhaps there are other, newer CML websites meant to provide information without demanding any personal, emotional involvement on the part of the reader. No doubt pioneers eventually get tired. Maybe that's what's at work here. On Sat, Feb 25, 2012 at 5:50 AM, cmlhope@googlegroups.com wrote: Today's Topic Summary Group: http://groups.google.com/group/cmlhope/topics - FINALLY RELIEF FROM CRAMPShttps://mail.google.com/mail/html/compose/static_files/blank_quirks.html#135b42244878824f_group_thread_0[1 Update] - No postshttps://mail.google.com/mail/html/compose/static_files/blank_quirks.html#135b42244878824f_group_thread_1[1 Update] FINALLY RELIEF FROM CRAMPShttp://groups.google.com/group/cmlhope/t/538b0e9d8515a9e8 dstuede...@aol.com Feb 24 05:05PM -0500 My husband found an ointment that really eliminates the excruciating leg cramps (a side effect of Gleevec). It is called Pain Gon. It reacts fast when applied to the affected area. For more information call Heather Duncan (Quad City Physical Therapy) at 563-359-3799. No posts http://groups.google.com/group/cmlhope/t/dbc4f55a359a3eaa myvet...@aol.com Feb 24 08:33AM -0500 I'm receiving posts. Seems that no one is sending out emails. greenie In a message dated 2/24/2012 12:46:29 A.M. Eastern Standard Time, joy...@htc.net writes: Where did everybody go??? Have not received a post for many days now. Checked my email settings and quarantine box. Everything looks good. Can't believe no one is posting. Anybody else having problems, other than Richard and I? Joyce in IL -- [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 Group cmlhope. You can post via email cmlhope@googlegroups.com. To unsubscribe from this group, sendcmlhope+unsubscr...@googlegroups.coman empty message. For more options, visit http://groups.google.com/group/cmlhope/topicsthis group. -- [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] 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] 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
RE: [CMLHope] Digest for cmlhope@googlegroups.com - 2 Messages in 2 Topics
Not sure why people are not posting here, but they are definitely out there posting, and in multiple groups. The public visibility of posts may be a key factor for this group, especially in the US where healthcare is dependent on an employer in so many cases. People still have questions and need answers –one extreme example I saw was a person in a group for cats with feline leukemia, who got nonsense answers back, an indicator of how desperate people can be to find resources and what they may encounter. Our population is growing, which is a good thing from the standpoint of the growth coming from survival. The need for accurate information is growing too with the expansion of treatment options and the new clinical trials focused on side effect support and cures. It does seem like people are the most engaged in the first two years. The drug company literature is focused on the first two years as is the content of many of the educational programs they fund for patients. We all know that is inadequate. Many of us are working hard, around the world, to change this and developing new support services for the long run. In the US, patients are now able to meet others face to face through the CML Connection support groups which are growing in number and need experienced, educated leaders to serve as facilitators. In some countries people whose only choice in the past was to use translation services to participate in English language groups now have educational materials and groups online in their native language for support. There’s a lot going on, and many positive developments, with more to come. Pat Elliott Phoenix, Arizona From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Victoria Reiter Sent: Saturday, February 25, 2012 7:58 AM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 Messages in 2 Topics It IS strange that no one, or very few, CMLers are posting. Have we become fatigued with focusing on our chronic condition and its side-effects? How many of us have decided just to get on with our lives and to live as fully as we can, trusting that Gleevec or the other inhibitors will keep us going? I think we may have forgotten how dismayed (euphemism) each of us was when we were first diagnosed and how glad we were to find this website and the information and support we received from it. Perhaps there are other, newer CML websites meant to provide information without demanding any personal, emotional involvement on the part of the reader. No doubt pioneers eventually get tired. Maybe that's what's at work here. On Sat, Feb 25, 2012 at 5:50 AM, cmlhope@googlegroups.com wrote: Today's Topic Summary Group: http://groups.google.com/group/cmlhope/topics http://groups.google.com/group/cmlhope/topics § https://mail.google.com/mail/html/compose/static_files/blank_quirks.html#13 5b42244878824f_group_thread_0 FINALLY RELIEF FROM CRAMPS [1 Update] § https://mail.google.com/mail/html/compose/static_files/blank_quirks.html#13 5b42244878824f_group_thread_1 No posts [1 Update] http://groups.google.com/group/cmlhope/t/538b0e9d8515a9e8 FINALLY RELIEF FROM CRAMPS dstuede...@aol.com Feb 24 05:05PM -0500 My husband found an ointment that really eliminates the excruciating leg cramps (a side effect of Gleevec). It is called Pain Gon. It reacts fast when applied to the affected area. For more information call Heather Duncan (Quad City Physical Therapy) at 563-359-3799. http://groups.google.com/group/cmlhope/t/dbc4f55a359a3eaa No posts myvet...@aol.com Feb 24 08:33AM -0500 I'm receiving posts. Seems that no one is sending out emails. greenie In a message dated 2/24/2012 12:46:29 A.M. Eastern Standard Time, joy...@htc.net writes: Where did everybody go??? Have not received a post for many days now. Checked my email settings and quarantine box. Everything looks good. Can't believe no one is posting. Anybody else having problems, other than Richard and I? Joyce in IL -- [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 Group cmlhope. You can mailto:cmlhope@googlegroups.com post via email. To unsubscribe from this group, mailto:cmlhope+unsubscr...@googlegroups.com send an empty message. For more options, http://groups.google.com/group/cmlhope/topics visit this group. -- [CMLHope] A support group of http://cmlhope.com http://cmlhope.com/ - You received this message because you are subscribed to
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 Messages in 2 Topics
Hello Victoria and Marty Guess I am one who is just resting, There are, in the CML community, people that say, living so close to people who have CML, one becomes burnt out. Not sure if this is the case here. Some others are fighting health problems on many fronts, I do read all the posts but as you say they are few and far between. In my case I have had CML for over 35 years, whenever I see a new case on here, I feel for them but let them know it is treatable. Be safe all SkipD From: Martin Gartenberg wa2...@gmail.com To: cmlhope@googlegroups.com Sent: Saturday, February 25, 2012 4:26:33 PM Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 Messages in 2 Topics Hi Victoria, Sometimes some among us just decides to take a break. Sometimes others become depressed at what they are reading about others. There could be a host of reasons that people are not posting as they once did. If your talking about the pioneers then that is probably what I am. I had CML more then 22 years ago. This May it will be my 23rd year. I had a bone marrow transplant 22 years ago when the procedure was relatively new and there wasn't a lot of information about it. At that time there were no TKI's available so I had no other choice of getting onto a blind trial of Alpha Interferon or the transplant. If I were to go into that trial basis I could not be guaranteed if I would be receiving it or just a placebo. Since my white blood count was over 486,000 at the time and I was about to go into blast chrises I opted for the transplant because I had a suitable donor, my sister. So, there you have it, and just try to remember that sometimes people just like to keep to themselves unless that are comfortable about discussing their own problems with others, many of which are strangers to them. I always end any of my posts with the numbers 18. Those numbers 18 symbolizes life. 18's to you, Marty On Sat, Feb 25, 2012 at 9:58 AM, Victoria Reiter vkrei...@gmail.com wrote: It IS strange that no one, or very few, CMLers are posting. Have we become fatigued with focusing on our chronic condition and its side-effects? How many of us have decided just to get on with our lives and to live as fully as we can, trusting that Gleevec or the other inhibitors will keep us going? I think we may have forgotten how dismayed (euphemism) each of us was when we were first diagnosed and how glad we were to find this website and the information and support we received from it. Perhaps there are other, newer CML websites meant to provide information without demanding any personal, emotional involvement on the part of the reader. No doubt pioneers eventually get tired. Maybe that's what's at work here. On Sat, Feb 25, 2012 at 5:50 AM, cmlhope@googlegroups.com wrote: Today's Topic Summary Group: http://groups.google.com/group/cmlhope/topics * FINALLY RELIEF FROM CRAMPS [1 Update] * No posts [1 Update] FINALLY RELIEF FROM CRAMPS No posts You received this message because you are subscribed to the Google Group cmlhope. You can post via email. To unsubscribe from this group, send an empty message. For more options, visit this group. -- [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] 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] 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] 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
