Re: [CMLHope] Re: stopping meds.
HI Richard, I found out that I had CML two weeks before Xmas of 1998. Went on Interferon for 3 months, that almost killed me. After that about 2 to 3 month later Chicago called me and put me into a study at Northwestern. STI571. Their were 8 of us from the Chicago area, I was the only one from Indiana. That was Jan. 9, 2000. Started at 400mg then received the Gleevec rash so they dropped me to 300 mg and been on that all these years. Can't complain their are more good days then bad. All drugs have their problems but I doing O.K. greenie In a message dated 8/28/2012 11:31:28 P.M. Eastern Daylight Time, richard1huff...@comcast.net writes: Yes, we will all eventually die. You, Lottie, and Skip were the first names that I thought of when I was writing but didn't want to miss any one that around before 2/2003. I am fortunate to have some footprints in the sand to follow and voices to keep me keeping on. Richard H. On Tuesday, August 28, 2012 8:09:24 AM UTC-5, wa2yyx wrote: Yes indeed Richard, You stated that since all of these TKI's have been around that "I will die of something else". You must remember that everyone who is born will eventually have to die. So it is good to know that CML will not be your undoing. I am one of those members that you spoke about. I had a bone marrow transplant more then 23 years ago, way before any of these TKI's were around. I guess that it wasn't my time yet. Also take a look at Skip, he is still alive after 35+ years. If you want to talk about strength to challenge CML head on, then take a look at Skip. Another long time person is Lottie. She really has been through the mill, trial after trial and is still here with us. With all of these advancements the CML community has stricken a blow to CML, and this will continue to happen. Maybe not in my lifetime but the disease CML will cease to exist, just like Polio was at one time. 18's Richard (Symbol for life) Marty On Mon, Aug 27, 2012 at 11:50 PM, Richard H <_richard...@comcast.net_ (javascript:) > wrote: Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived until the need meds were found. They are my strength to challange CML headon in a different direction than most CML Specialists and CMLer's. Shortly after my diagnosis I discussed whith my ONC about participating in the trials of available other that Gleevec. He advised me to take Gleevec as it wasn't my time to be in trials but someday I would have my turn. I am 4 years and counting to see if my body can control CML at a low level. That in itself is a miracle considing when you consider I was given a 5 - 10 year lifespan and now I will die of something else. Life, Richard H. On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote: Hi CML Group. I haven't posted in a long time but the lastest post about not taking meds interested me. I have been on Sprycel 20mg bid for about 5 years. My onocologist checks pcr levels and also a fish test every three months. 9 times out of ten the CML is undectable but every once in awhile there is a very minute count. It tells me that the CML is just under the surface. I recently had to have a liter of fluid taken out of the plura around the lung from the sprycel. My onocologist told me whatever I do don't stop taking the meds. I assured him I would follow his directions to the "T" as I feel without these miracle drugs this would be a death sentence. That is why I was amazed that Drs. are recommending stopping the therapy. Maybe my onocologist is just being cautious. Carolyn Kuptz -- [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 _CML...@googlegroups.com_ (javascript:) To unsubscribe from this group, send email to _CMLHope-u...@CMLHope-u...@http://groups.google.com/http://groups_ (http://groups.google.com/group/CMLHope) -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ---
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 3 Messages in 1 Topic
My take on the stopping of the drugs after being negative for several years, I think that is up to the person and their doctor. I, personally, did not feel comfortable in completely quitting Gleevec after being on 400mgs. since February 2004. What I did ask my Doctor was if we could lower the dosage to 200 instead and she said that that would be okay. Her very words were, "I do not feel comfortable with you going off of Gleevec, either". So, that is what I did, cut my dosage in half. So far, I am feeling great. Will go for my 6 month check up the day before Thanksgiving, and it will be awesome to see how my body has responded to being on only 200 mgs. instead of the 400. Love to all, Suzieq -- [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 - 3 Messages in 1 Topic
How are you feeling since you went to 200. What difference then when on 400 . I have been on 400 since april 2003 And been pcr negative 3 months after that up to present day . been thinking about talking to my doctor about dropping to 200 . haven't really had many issue with gleevec , just seem more tired and gained weight after I started it . Larry Lexington , ky From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Sheila Watson Sent: Wednesday, August 29, 2012 9:48 AM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 3 Messages in 1 Topic My take on the stopping of the drugs after being negative for several years, I think that is up to the person and their doctor. I, personally, did not feel comfortable in completely quitting Gleevec after being on 400mgs. since February 2004. What I did ask my Doctor was if we could lower the dosage to 200 instead and she said that that would be okay. Her very words were, "I do not feel comfortable with you going off of Gleevec, either". So, that is what I did, cut my dosage in half. So far, I am feeling great. Will go for my 6 month check up the day before Thanksgiving, and it will be awesome to see how my body has responded to being on only 200 mgs. instead of the 400. Love to all, Suzieq -- [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] Re: stopping meds.
Carolyn, Have you had plural efusion before? Since you have been on a low dose of sprycel for years, has this happened before to you? ARe you on a diuretic on a regular basis? I am on sprycel as well, have been for the last two years. concerned about swelling, but manage it through diuretic and potassium. just wondered what your history has been? How is your muscle fatigue on the sprycel? thanks for the info, helpful to me to talk withothers on the same meds. Beth -Original Message- From: TEDBDD To: cmlhope Sent: Tue, Aug 28, 2012 7:48 am Subject: Re: [CMLHope] Re: stopping meds. RichardI am totally with you and your decision. The longer I live with CML the more I understand that there are few "givens". Each of us reacts differently to the TKI's and we must make individual decisions. Like you, I am so grateful for these amazing drugs that have enabled us all to enjoy life in a way not possible 20 years ago. All the best in your journey. Tom in KY In a message dated 8/27/2012 11:50:47 P.M. Eastern Daylight Time, richard1huff...@comcast.net writes: Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived until the need meds were found. They are my strength to challange CML headon in a different direction than most CML Specialists and CMLer's. Shortly after my diagnosis I discussed whith my ONC about participating in the trials of available other that Gleevec. He advised me to take Gleevec as it wasn't my time to be in trials but someday I would have my turn. I am 4 years and counting to see if my body can control CML at a low level. That in itself is a miracle considing when you consider I was given a 5 - 10 year lifespan and now I will die of something else. Life, Richard H. On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote: Hi CML Group. I haven't posted in a long time but the lastest post about not taking meds interested me. I have been on Sprycel 20mg bid for about 5 years. My onocologist checks pcr levels and also a fish test every three months. 9 times out of ten the CML is undectable but every once in awhile there is a very minute count. It tells me that the CML is just under the surface. I recently had to have a liter of fluid taken out of the plura around the lung from the sprycel. My onocologist told me whatever I do don't stop taking the meds. I assured him I would follow his directions to the "T" as I feel without these miracle drugs this would be a death sentence. That is why I was amazed that Drs. are recommending stopping the therapy. Maybe my onocologist is just being cautious. Carolyn Kuptz -- [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] stopping meds.
Tom, what are your side effects from the sprycel. do you or anyone else out there have muscle fatigue, muscle deterioration, elevated cpk levels ( creatine /kinase)..trying to see if others feel as I do. Thanks for responding..I am glad you are doign well on sprycel. What dose do you take? low dose plus diuretic keeps swelling at a distance for me as well. feel blessed that way. My oncologist yesterday, acknowedged that these kinase inhibitors, while targeted, affect many other systems in the body, I have had bad memory issues since taking these meds, and have not been able to heal from a neurological issue, an injured sciatic nerve and disc issue from a surgery I had on March 12th of this year. It seems the sprycel, which inhibits would healing , is also playing a roll in inhibiting the regrowth of the nerve etc...so I am trying to decide what to do to help my body to heal.. this level of chronic pain and inability to sit is not long term viable because I need to work. -Original Message- From: TEDBDD To: cmlhope Cc: tedbdd Sent: Mon, Aug 27, 2012 4:18 pm Subject: Re: [CMLHope] stopping meds. CarolynI think we have corresponded beforeI, also am on 20 mg of Sprycel after failing to tolerate Gleevec and Tasigna. I also had Pleural Effusion but didn't have to have my lungs drainedthe lower Sprycel dose seems to have stopped the fluid build up for me...I am sorry it isn't keeping the fluid away for you. I just asked my Oncologist basically the same question about stopping my meds...Her answer to me was as follows...stopping the TKI's is risky for sure, but at some point, it may be an option for somesee below: "As we discussed CML returns in 60% of people with complete molecular response (i.e., negative PCR) who stopped TKI. You still have bcr-abl detectable even though at very low level: At this point, the usual recommendations are to continue TKI. We do have programs combining TKI with new or established agents in the setting of clinical trial, with the goal to become PCR(-) and then stop therapy. We do not have a proof yet that any of these approaches will work, but all combinations are rationally designed based on some pre-clinical or historical data. As you can imagine, each of the drugs to be used in combination has its own potential side effects, although overall these agents are well tolerated. We can discuss these options with you upon your return if you are interested. One can take a chance based on the example of the patient you followed to stop TKI and continue monitoring only, with the expectations of re-treating upon leukemia recurrence as above.l" Based on the info above, I am not going to chance going off the Sprycel unless I get more severe side effects. Regards, Tom in KY. In a message dated 8/27/2012 4:49:53 P.M. Eastern Daylight Time, jku...@wi.rr.com writes: Hi CML Group. I haven't posted in a long time but the lastest post about not taking meds interested me. I have been on Sprycel 20mg bid for about 5 years. My onocologist checks pcr levels and also a fish test every three months. 9 times out of ten the CML is undectable but every once in awhile there is a very minute count. It tells me that the CML is just under the surface. I recently had to have a liter of fluid taken out of the plura around the lung from the sprycel. My onocologist told me whatever I do don't stop taking the meds. I assured him I would follow his directions to the "T" as I feel without these miracle drugs this would be a death sentence. That is why I was amazed that Drs. are recommending stopping the therapy. Maybe my onocologist is just being cautious. Carolyn Kuptz -- [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/CMLHop
Re: [CMLHope] stopping meds.
BK...I am on 20mg Sprycel and it seems to be working well in controlling the CML. I do have many of the side effects you list...Peripheral Neuropathy, memory issues and fatigue. I have had a neurological exam to confirm the neuropathy which is extending up my legs from the feet. So far, I don't have any pain associated with it...just some prickling once in a while. In summary, I feel pretty good considering the alternatives:-). Tom in KY In a message dated 8/29/2012 11:00:10 A.M. Eastern Daylight Time, bkbar...@aol.com writes: Tom, what are your side effects from the sprycel. do you or anyone else out there have muscle fatigue, muscle deterioration, elevated cpk levels ( creatine /kinase)..trying to see if others feel as I do. Thanks for responding..I am glad you are doign well on sprycel. What dose do you take? low dose plus diuretic keeps swelling at a distance for me as well. feel blessed that way. My oncologist yesterday, acknowedged that these kinase inhibitors, while targeted, affect many other systems in the body, I have had bad memory issues since taking these meds, and have not been able to heal from a neurological issue, an injured sciatic nerve and disc issue from a surgery I had on March 12th of this year. It seems the sprycel, which inhibits would healing , is also playing a roll in inhibiting the regrowth of the nerve etc...so I am trying to decide what to do to help my body to heal.. this level of chronic pain and inability to sit is not long term viable because I need to work. -Original Message- From: TEDBDD To: cmlhope Cc: tedbdd Sent: Mon, Aug 27, 2012 4:18 pm Subject: Re: [CMLHope] stopping meds. CarolynI think we have corresponded beforeI, also am on 20 mg of Sprycel after failing to tolerate Gleevec and Tasigna. I also had Pleural Effusion but didn't have to have my lungs drainedthe lower Sprycel dose seems to have stopped the fluid build up for me...I am sorry it isn't keeping the fluid away for you. I just asked my Oncologist basically the same question about stopping my meds...Her answer to me was as follows...stopping the TKI's is risky for sure, but at some point, it may be an option for somesee below: "As we discussed CML returns in 60% of people with complete molecular response (i.e., negative PCR) who stopped TKI. You still have bcr-abl detectable even though at very low level: At this point, the usual recommendations are to continue TKI. We do have programs combining TKI with new or established agents in the setting of clinical trial, with the goal to become PCR(-) and then stop therapy. We do not have a proof yet that any of these approaches will work, but all combinations are rationally designed based on some pre-clinical or historical data. As you can imagine, each of the drugs to be used in combination has its own potential side effects, although overall these agents are well tolerated. We can discuss these options with you upon your return if you are interested. One can take a chance based on the example of the patient you followed to stop TKI and continue monitoring only, with the expectations of re-treating upon leukemia recurrence as above.l" Based on the info above, I am not going to chance going off the Sprycel unless I get more severe side effects. Regards, Tom in KY. In a message dated 8/27/2012 4:49:53 P.M. Eastern Daylight Time, jku...@wi.rr.com writes: Hi CML Group. I haven't posted in a long time but the lastest post about not taking meds interested me. I have been on Sprycel 20mg bid for about 5 years. My onocologist checks pcr levels and also a fish test every three months. 9 times out of ten the CML is undectable but every once in awhile there is a very minute count. It tells me that the CML is just under the surface. I recently had to have a liter of fluid taken out of the plura around the lung from the sprycel. My onocologist told me whatever I do don't stop taking the meds. I assured him I would follow his directions to the "T" as I feel without these miracle drugs this would be a death sentence. That is why I was amazed that Drs. are recommending stopping the therapy. Maybe my onocologist is just being cautious. Carolyn Kuptz -- [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
Re: [CMLHope] stopping meds.
Thank you Tom. Very helpful. Just 20 a day and it holds you in pcru? wow!!! this gives me hope. I am going from 50 to 40 this week...will test in two months to see how I am doing...never considered 20 sprycel as being able to hold me. I will hold hope for that in my future...Beth -Original Message- From: TEDBDD To: cmlhope Sent: Wed, Aug 29, 2012 10:26 am Subject: Re: [CMLHope] stopping meds. BK...I am on 20mg Sprycel and it seems to be working well in controlling the CML. I do have many of the side effects you list...Peripheral Neuropathy, memory issues and fatigue. I have had a neurological exam to confirm the neuropathy which is extending up my legs from the feet. So far, I don't have any pain associated with it...just some prickling once in a while. In summary, I feel pretty good considering the alternatives:-). Tom in KY In a message dated 8/29/2012 11:00:10 A.M. Eastern Daylight Time, bkbar...@aol.com writes: Tom, what are your side effects from the sprycel. do you or anyone else out there have muscle fatigue, muscle deterioration, elevated cpk levels ( creatine /kinase)..trying to see if others feel as I do. Thanks for responding..I am glad you are doign well on sprycel. What dose do you take? low dose plus diuretic keeps swelling at a distance for me as well. feel blessed that way. My oncologist yesterday, acknowedged that these kinase inhibitors, while targeted, affect many other systems in the body, I have had bad memory issues since taking these meds, and have not been able to heal from a neurological issue, an injured sciatic nerve and disc issue from a surgery I had on March 12th of this year. It seems the sprycel, which inhibits would healing , is also playing a roll in inhibiting the regrowth of the nerve etc...so I am trying to decide what to do to help my body to heal.. this level of chronic pain and inability to sit is not long term viable because I need to work. -Original Message- From: TEDBDD To: cmlhope Cc: tedbdd Sent: Mon, Aug 27, 2012 4:18 pm Subject: Re: [CMLHope] stopping meds. CarolynI think we have corresponded beforeI, also am on 20 mg of Sprycel after failing to tolerate Gleevec and Tasigna. I also had Pleural Effusion but didn't have to have my lungs drainedthe lower Sprycel dose seems to have stopped the fluid build up for me...I am sorry it isn't keeping the fluid away for you. I just asked my Oncologist basically the same question about stopping my meds...Her answer to me was as follows...stopping the TKI's is risky for sure, but at some point, it may be an option for somesee below: "As we discussed CML returns in 60% of people with complete molecular response (i.e., negative PCR) who stopped TKI. You still have bcr-abl detectable even though at very low level: At this point, the usual recommendations are to continue TKI. We do have programs combining TKI with new or established agents in the setting of clinical trial, with the goal to become PCR(-) and then stop therapy. We do not have a proof yet that any of these approaches will work, but all combinations are rationally designed based on some pre-clinical or historical data. As you can imagine, each of the drugs to be used in combination has its own potential side effects, although overall these agents are well tolerated. We can discuss these options with you upon your return if you are interested. One can take a chance based on the example of the patient you followed to stop TKI and continue monitoring only, with the expectations of re-treating upon leukemia recurrence as above.l" Based on the info above, I am not going to chance going off the Sprycel unless I get more severe side effects. Regards, Tom in KY. In a message dated 8/27/2012 4:49:53 P.M. Eastern Daylight Time, jku...@wi.rr.com writes: Hi CML Group. I haven't posted in a long time but the lastest post about not taking meds interested me. I have been on Sprycel 20mg bid for about 5 years. My onocologist checks pcr levels and also a fish test every three months. 9 times out of ten the CML is undectable but every once in awhile there is a very minute count. It tells me that the CML is just under the surface. I recently had to have a liter of fluid taken out of the plura around the lung from the sprycel. My onocologist told me whatever I do don't stop taking the meds. I assured him I would follow his directions to the "T" as I feel without these miracle drugs this would be a death sentence. That is why I was amazed that Drs. are recommending stopping the therapy. Maybe my onocologist is just being cautious. Carolyn Kuptz -- [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
[CMLHope] Xml
Richard and Marty, and the group Marty, I did not know about your Christmas gift I also was two weeks before Christmas,except 1977, Richard my survival had nothing to do with me I just went along for the ride I would to take some credit but I cannot. If I had any part in it, it was after I settled down, I remembered this story a priest said church, a man riding a donkey a very narrow trail in the mountains fell off and over the ledge, he managed to grab a branch, there he hung and then he heard footsteps along the path, he yelled at the top of his voice HELP ME Nothing happened the footsteps faded ,then he heard a donkey on the trail,once again.,he cried out PLEASE HELP me Nothing After a long time he was very tired and could not hold on much more He cried out in a loud voice PLEASE GOD HELP ---A voice came from on high DO REALLY MY HELP THEN LET GO That is what I did Just what I needed to I relaxed and from what my doc says about under street you need more but if can reduce the stress your body can use the meds better requiring less Please excuse errors in spelling and punctuation wife bought new tablet it seems to want to put in words for me Skips diag 1977 -- [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] Xml
I was diagnosed on Dec. 11, 2000also 2 wks before Christmas!! Some dates just stick in your mind, huh? I started on 400mg of Gleevec daily.. reached complete cytogenic remission after 6 mo. Reduced to 300 mg daily and have been doing well for the past almost 12 years. (After 6 yr I developed lupus; however, they are sure it is unrelated to the Gleevec.) It has always been my belief that if you are not happy, then your meds are not going to be able to work as well for you. I see my onc. twice a year, still take Gleevec, and try not to let CML be my identity. Thank God, I have been very VERY lucky (never had interferon) and can live my life as I wish, traveling a lot and volunteering. When diagnosed, I started a scrapbook of things I wanted to do before I cashed in my earthly chips. I haven't been to Vanuatu yet, but last year traveled the great Silk Road of Marco Polo across central Asia. I have flown over Mount Everest and sailed around Cape Horn. Yes, I am very grateful for my health, and value every day. Dwelling on the negative implications of my health would be the most harmful thing I could do. What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Skip To: cmlhope@googlegroups.com Sent: Wednesday, August 29, 2012 11:35:36 AM Subject: [CMLHope] Xml Richard and Marty, and the group Marty, I did not know about your Christmas gift I also was two weeks before Christmas,except 1977, Richard my survival had nothing to do with me I just went along for the ride I would to take some credit but I cannot. If I had any part in it, it was after I settled down, I remembered this story a priest said church, a man riding a donkey a very narrow trail in the mountains fell off and over the ledge, he managed to grab a branch, there he hung and then he heard footsteps along the path, he yelled at the top of his voice HELP ME Nothing happened the footsteps faded ,then he heard a donkey on the trail,once again.,he cried out PLEASE HELP me Nothing After a long time he was very tired and could not hold on much more He cried out in a loud voice PLEASE GOD HELP ---A voice came from on high DO REALLY MY HELP THEN LET GO That is what I did Just what I needed to I relaxed and from what my doc says about under street you need more but if can reduce the stress your body can use the meds better requiring less Please excuse errors in spelling and punctuation wife bought new tablet it seems to want to put in words for me Skips diag 1977 -- [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 - 3 Messages in 1 Topic
Suzie, I wish you the very best of luck. 18's Marty On Wed, Aug 29, 2012 at 9:47 AM, Sheila Watson wrote: > My take on the stopping of the drugs after being negative for several > years, I think that is up to the person and their doctor. I, personally, > did not feel comfortable in completely quitting Gleevec after being on > 400mgs. since February 2004. What I did ask my Doctor was if we could > lower the dosage to 200 instead and she said that that would be okay. Her > very words were, "I do not feel comfortable with you going off of Gleevec, > either". So, that is what I did, cut my dosage in half. So far, I am > feeling great. Will go for my 6 month check up the day before > Thanksgiving, and it will be awesome to see how my body has responded to > being on only 200 mgs. instead of the 400. > > Love to all, > Suzieq > > -- > [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
