Re: [CMLHope] Just wanted to check in with folks I remember
Thanks for the update Peg..I am glad that things sound a bit more stable for you...I do understand about not wanting to share with others if your road is hard so as to not scare us, ..but truly, each of us is unique, and our bodies respond very differently to treatments..so, please don't worry. Getting good support is also key to quality of life, as it's a lot less lonely...and together we can persevere... I am so sorry you have had to go through all that you didI hope and pray that it somehow gets easier for you...wow...2 years at zero is marvelous, but the price you have paidI don't have words for that..except you are so resilient, so amazingtake good care and know that you are cared for and loved here... 18's, love and hugs, Beth -Original Message- From: Myvety2k via CMLHope To: cmlhope Sent: Tue, Feb 2, 2016 2:24 pm Subject: Re: [CMLHope] Just wanted to check in with folks I remember Peg, that was my Aunt's name. Anyway, don't be a stranger. All of us that have CML are in the same boat but taking different drugs. I've been on Gleevec 16 years 1 month, yes their are side effects but done that I can't handle. Cramps are the worse but I'm still here driving my wife crazy and she love's every second of it :) greenie club member #48 In a message dated 2/2/2016 1:55:33 P.M. Eastern Standard Time, peg@live.com writes: Hi all, Thought I would check in today...it has been a while. I see lots of new names, but still a few that I remember. I am now two years at zero detectable on only 100mg of Tasigna daily...1/4th of the recommended dosage. It got a bit rocky for a while, not from the CML, but along that course they diagnosed me with five other, assume-ably unrelated, cancers including skin, gastric, thyroid and lungs! While I never lost my hope, I didn't wanted to dim anyone else's hope by sharing news from my scary corner. However, as of last month, all cancers are regressing, some we know for certain are also due to Tasigna, and well, the others they are not sure why, so I choose to believe it is also because of the Tasigna...and faith! I am battling some malnutrition issues that were from a severe reaction I had to Gleevec when I was first diagnosed six years ago, but now knowing what those are we are slowly making improvement towards gaining back a quality of life.You can never underestimate the value of quality of life! I hope you are all finding your own quality, never give up on that. You are never far from my thoughts and prayers! Six years and still here! Fight on!!! peg -- -- [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/d/optout. -- -- [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/d/optout. -- -- [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/d/optout.
Re: [CMLHope] Just wanted to check in with folks I remember
Peg, that was my Aunt's name. Anyway, don't be a stranger. All of us that have CML are in the same boat but taking different drugs. I've been on Gleevec 16 years 1 month, yes their are side effects but done that I can't handle. Cramps are the worse but I'm still here driving my wife crazy and she love's every second of it :) greenie club member #48 In a message dated 2/2/2016 1:55:33 P.M. Eastern Standard Time, peg@live.com writes: Hi all, Thought I would check in today...it has been a while. I see lots of new names, but still a few that I remember. I am now two years at zero detectable on only 100mg of Tasigna daily...1/4th of the recommended dosage. It got a bit rocky for a while, not from the CML, but along that course they diagnosed me with five other, assume-ably unrelated, cancers including skin, gastric, thyroid and lungs! While I never lost my hope, I didn't wanted to dim anyone else's hope by sharing news from my scary corner. However, as of last month, all cancers are regressing, some we know for certain are also due to Tasigna, and well, the others they are not sure why, so I choose to believe it is also because of the Tasigna...and faith! I am battling some malnutrition issues that were from a severe reaction I had to Gleevec when I was first diagnosed six years ago, but now knowing what those are we are slowly making improvement towards gaining back a quality of life. You can never underestimate the value of quality of life! I hope you are all finding your own quality, never give up on that. You are never far from my thoughts and prayers! Six years and still here! Fight on!!! peg -- -- [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+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [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/d/optout.
[CMLHope] Just wanted to check in with folks I remember
Hi all, Thought I would check in today...it has been a while. I see lots of new names, but still a few that I remember. I am now two years at zero detectable on only 100mg of Tasigna daily...1/4th of the recommended dosage. It got a bit rocky for a while, not from the CML, but along that course they diagnosed me with five other, assume-ably unrelated, cancers including skin, gastric, thyroid and lungs! While I never lost my hope, I didn't wanted to dim anyone else's hope by sharing news from my scary corner. However, as of last month, all cancers are regressing, some we know for certain are also due to Tasigna, and well, the others they are not sure why, so I choose to believe it is also because of the Tasigna...and faith! I am battling some malnutrition issues that were from a severe reaction I had to Gleevec when I was first diagnosed six years ago, but now knowing what those are we are slowly making improvement towards gaining back a quality of life. You can never underestimate the value of quality of life! I hope you are all finding your own quality, never give up on that. You are never far from my thoughts and prayers! Six years and still here! Fight on!!! peg -- -- [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/d/optout.
Re: [CMLHope] Am I strong? Are we all strong? Read on...
That was great Marty. I'm a great Believer in that. I know from personal experience that this is true. When I was young I went off to play with friends. My mom decided to send my brother who was 2 years older than to go and walk me home. On the way to get me he stopped at a store to asked if they had any quick jobs that he could do. They told him no so he started out on the walk to get me. He hadn't walked very far when a speeding car came up behind him. They honked their horn but instead of it warning him it startled him and he jumped in front of the car. He was killed instantly. He was my best friend and I la lost a lot that day. If he hadn't stopped at the store he would never have been in the spot that killed him. I take comfort in knowing that I will see him in heaven. ❤️💋😇🍩😀🍓🍩🍩🎼 My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center > On Feb 1, 2016, at 5:53 PM, Marty Gartenberg wrote: > > Hi Everyone, > > I have a question for everyone. Do you know where GOD wants us all to be? I > am sending you an attachment and it has to due with a personal experience > that I had with a very close friend of mine, and how he was saved when the > world trade center went down. We are all here for a reason. > > 18's > > Marty > >> On Wed, Jan 20, 2016 at 11:31 PM, Richard H wrote: >> No I have not heard of this. If this is true then I just collected another >> odd duck in my collection. I still have my appendix. >> >>> On Wednesday, January 20, 2016 at 12:46:52 PM UTC-6, Icandoallttc wrote: >>> Yes I had the rash and boils and ect. Then I was put in Tasigna. It was >>> awful for me. Sprycel was the best as far as side effects. >>> I just saw a show that your appendix was your immune systems fighter and if >>> you didn't have one you could get leukemia and ect. My appendix was taken >>> out when I had my gall bladder removed. Anyone else heard this!!? >>> >>> >>> My Motto: Faith and Pills❤️ >>> With 💗Jeanie 🐟🐟18,s >>> Dx 1/2004. CML Leukemia >>> Started Gleevec 2/2004 >>> Started Tasigna 9/2009 >>> Started Sprycel 11/2009 >>> Started Ponatinib January 2015 >>> Dr Balducci Moffitt Cancer Center >>> On Jan 20, 2016, at 1:18 PM, perk wrote: When I was first diagnosed, I was put on Gleevec and I broke out in a severe rash, as well as many other uncomfortable side effects. I was then put on Sprycel and while it has some of the same side effects, it is manageable and tolerable. I have lived with it for 7 years. Now there are other options. Find one that works for you and have a good life! JD in TX > On Saturday, January 16, 2016 at 12:27:27 PM UTC-6, candles wrote: > Today is my 1 yr anniversary of being diagnosed with CML, I'm here but > not happily. So many side effects. Makes you wonder if it's worth it > > Sent from my iPhone > >> On Jan 16, 2016, at 12:23 AM, Pete Pabon wrote: >> >> Diagnosed 1999 >> Gleevec 2000 >> 15 years still no phillies found >> >> >> Date: Fri, 15 Jan 2016 10:18:43 -0500 >> Subject: Re: [CMLHope] Am I strong? Are we all strong? Read on... >> From: wa2...@gmail.com >> To: cml...@googlegroups.com >> >> Well now I got a much refreshing title. Being that everyone is a leader >> of this group so does it go to help all of us together. >> >> You know that it's been so long that I forgot about Rob. I do hope to >> hear from him. I also had no idea about his mother having leukemia and I >> hope that she is doing well. >> >> So many new things have happened since we were members and as I remember >> this group was in fact a yahoo group but I just can't put my finger if >> it was for sure. Some time has passed and my memory has not been my >> greatest asset so I would really like to hear from Rob. >> >> Just think look at some of the people that were still around then (like >> yourself) that are still around now. Hey what ever happened to CML will >> be only be around for 5 years until the "Lukie Dragon" will come and get >> you. >> >> Do you remember that saying a very long time ago? Well that for sure has >> has changed with all of these advancements using these TKI's and what is >> coming down the pipe next. >> >> I'm telling you it will be that, no matter what you are and what you >> believe in there will come a time near to now that this "Dragon" will >> meet it's demise. >> >> You mark my words. >> >> 18's, >> >> Marty >> >> On Fri, Jan 15, 2016 at 7:02 AM, 'Icandoallttc' via CMLHope >> wrote: >> Hi Marty and good to hear from you. We were wondering what happened. >> I believe the founder and
