Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug
Skip you rock! LIke Millie and Marty and others here, attitude is such a big factorglad you feel good...with the weekly treatments...holding you steadyglad they are working for youtake good care and please continue to share the journey with us.. Beth -Original Message- From: Marty Gartenberg To: cmlhope Sent: Wed, Jul 3, 2013 6:35 pm Subject: Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug Skip, your like the rock of Gibralter! 18's Marty On Wed, Jul 3, 2013 at 9:29 AM, Skip Duffie wrote: .Hello all thanks for including me in your email. I was on sprycel and after while I had to have my chest drained. over a two month period I had to have 8.5 lts of fluid removed. So they had to take me off sprycel. I understand a lot of people who are on it have great results. It was the same for Imatinib, and Nilotinib. but on the good side I am on nothing now. My platelets yesterday were 13 and I received a bag. As it stands I receive 1 unit of RBC once week and twice weekly I receive a bag of Platelets. on the plus side my life is great. I have no problems, It takes me a few hours at the hospital twice weekly, where I am looked after like a rock star. I am spoiled. I just have to be careful not to play football or bang my head. I do have to be careful around my grandson he is a 3 year old wrecking crew. I wish you a wonderful life even with CML. In my case I did not think I would live beyond 1978 so I was warned, For those who do not know I was put on Myleran way back and was on it every year for about two three months, my counts would drop and slowly go up until I needed to be put back on Myleran (Bulsufan) Skip Duffie thanks Jeannie, I am on sprycel again as mentioned..at 50 - 60 a day. In PCRU for the first time in 3 years. Toxicity has been cpk elevated to 400...so muscles are constantly wasting and that makes me a kind of muscular tired different than other TKI's, eyebrows lost, hair loss, skin terribly dry, slightly more elevated liver enzymes but still in normal range. The biggest challenge is pain in the body with the elevated cpk. I have tried tramadol, but it goes through the liver and Tasigna gave my liver such a hard time, that I am protective of it, even though my liver numbers are fine.Regarding your question, In the fall, I started to feel worse and worse, could hardly get up and move, at 40 of sprycel..I had been on it for 2 years...minus a couple of holidays for surgeriesI had to go off everythingecho cardiogram showed the start of a possible developing problemin left ventricle...I went of Sprycel for 7 weeks, went on bosutinif for 7 weeks, then back on sprycel four days later after blood work showed bosutinif did not work for me..I also had another echo cardiogram and it was fine, so it resolved off of the meds for a couple of monthsI was on a low dose becuase that was all that could be tolerated by my body...50 of sprycel did not put me in remission, but 70 for one month,and 60 for two months. did..so I know how much I need to take for complete remission,, it's just if my body will allow me to. I have eye swelling, and calve swelling that I did not have on 40-50 that I have with 60-70 a day...so...I will be dosing down...and not worry about CMM, be happy if I stay in MMR and live well with less toxicity...most people never have the elevated cpk, or muscle issues, fatigue yes, but not this..so try not to worry, I am an odd bird when it comes to drug sensitivity.. have many issues others don't. Just the luck of the draw...I do most of the things you suggest already,bu trwill try castor oil and see if that helps..thanks so much for your note, be well Jeannie, Beth -Original Message- From: ICANDOALLTTC To: cmlhope Sent: Tue, Jul 2, 2013 7:54 am Subject: Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug Hi Beth, I am on Sprycel and it was the only drug that put me in PCRU. I battled with Gleevec for almost 5 years and then on Tasi for a few months. I was on 100 mgs daily and my onc didn't want me to cut down but I took it upon myself to cut down to 50 mgs daily. I haven't had the muscle problem yet, but feel it could be lurking there close by. Here's what I do nightly; get some organic castor oil and massage you feet and legs with the muscle area nightly. Do this twice a day if you can. Do it right before you turn in for the night. Of course eat well, and eat yogurt daily. If you are low on calcium get some good organic calcium in a liquid form, the one that isn't constipating and take a small dose daily along with some magnesium, Get a little sun on your long bones daily if you can. Walk if you can. Walking will help the headaches also; I suffer from them too and Sprycel makes them worse. Have you tried Tamadol for pain. I take it daily and it helps so I don't h
Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug
Skip, your like the rock of Gibralter! 18's Marty On Wed, Jul 3, 2013 at 9:29 AM, Skip Duffie wrote: > > *.Hello all * > *thanks for including me in your email. I was on sprycel and after while > I had to have my chest drained.* > ** > *over a two month period I had to have 8.5 lts of fluid removed. So they > had to take me off sprycel.* > *I understand a lot of people who are on it have great results. It was > the same for Imatinib, and Nilotinib.* > *but on the good side I am on nothing now. My platelets yesterday were > 13 and I received a bag.* > *As it stands I receive 1 unit of RBC once week and twice weekly I > receive a bag of Platelets.* > *on the plus side my life is great. I have no problems, It takes me a few > hours at the hospital twice weekly, where I am looked after like a rock > star. I am spoiled. I just have to be careful not to play football* > *or bang my head. I do have to be careful around my grandson he is a 3 > year old wrecking crew.* > *I wish you a wonderful life even with CML. In my case I did not think I > would live beyond 1978 * > *so I was warned, For those who do not know I was put on Myleran way back > and was on it* > *every year for about two three months, my counts would drop and slowly > go up until I needed * > *to be put back on Myleran (Bulsufan)* > *Skip Duffie* > ** > ** > > thanks Jeannie, > I am on sprycel again as mentioned..at 50 - 60 a day. In PCRU for the > first time in 3 years. Toxicity has been cpk elevated to 400...so muscles > are constantly wasting and that makes me a kind of muscular tired different > than other TKI's, eyebrows lost, hair loss, skin terribly dry, slightly > more elevated liver enzymes but still in normal range. The biggest > challenge is pain in the body with the elevated cpk. I have tried tramadol, > but it goes through the liver and Tasigna gave my liver such a hard time, > that I am protective of it, even though my liver numbers are fine.Regarding > your question, In the fall, I started to feel worse and worse, could > hardly get up and move, at 40 of sprycel..I had been on it for 2 > years...minus a couple of holidays for surgeriesI had to go off > everythingecho cardiogram showed the start of a possible developing > problemin left ventricle...I went of Sprycel for 7 weeks, went on > bosutinif for 7 weeks, then back on sprycel four days later after blood > work showed bosutinif did not work for me..I also had another echo > cardiogram and it was fine, so it resolved off of the meds for a couple of > monthsI was on a low dose becuase that was all that could be tolerated > by my body...50 of sprycel did not put me in remission, but 70 for one > month,and 60 for two months. did..so I know how much I need to take for > complete remission,, it's just if my body will allow me to. I have eye > swelling, and calve swelling that I did not have on 40-50 that I have with > 60-70 a day...so...I will be dosing down...and not worry about CMM, be > happy if I stay in MMR and live well with less toxicity...most people never > have the elevated cpk, or muscle issues, fatigue yes, but not this..so try > not to worry, I am an odd bird when it comes to drug sensitivity.. > have many issues others don't. Just the luck of the draw...I do most of > the things you suggest already,bu trwill try castor oil and see if that > helps..thanks so much for your note, be well Jeannie, Beth > > -Original Message- > From: ICANDOALLTTC > To: cmlhope > Sent: Tue, Jul 2, 2013 7:54 am > Subject: Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug > > Hi Beth, I am on Sprycel and it was the only drug that put me in PCRU. > I battled with Gleevec for almost 5 years and then on Tasi for a few > months. I was on 100 mgs daily and my onc didn't want me to cut down but I > took it upon myself to cut down to 50 mgs daily. I haven't had the muscle > problem yet, but feel it could be lurking there close by. Here's what I do > nightly; get some organic castor oil and massage you feet and legs with the > muscle area nightly. Do this twice a day if you can. Do it right before > you turn in for the night. Of course eat well, and eat yogurt daily. If > you are low on calcium get some good organic calcium in a liquid form, the > one that isn't constipating and take a small dose daily along with some > magnesium, > Get a little sun on your long bones daily if you can. Walk if you can. > Walking will help the headaches also; I suffer from them too and Sprycel > makes them worse. Have you tried Tamadol for pain. I take it daily and it > helps so I don't have to take any of the nsaids which we aren't suppose to > take. It&#x
Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug
Hi Beth and thanks for the update. I do suffer from ongoing right side pain but don't know what it is. I thought the group might like this to understand your cpks CPK isoenzymes testEmail this page to a friendShare on facebookShare on twitterBookmark & SharePrinter-friendly version The CPK isoenzymes test measures the different forms of creatine phosphokinase (CPK) in the blood. CPK is an enzyme found mainly in the heart, brain, and skeletal muscle. How the Test is Performed A blood sample is needed. This may be taken from a vein. The test is called a venipuncture. If you are in the hospital, this test may be repeated over 2 or 3 days. A significant rise or fall in the total CPK or CPK isoenzymes can help your health care provider diagnosis certain conditions. How to Prepare for the Test Usually, no special preparation is necessary. Tell your doctor about all the medications you are taking. Certain medications can interfere with test results. Drugs that can increase CPK measurements include the following: Alcohol Amphotericin B Certain anesthetics Cocaine Fibrate drugs Statins Steroids such as dexamethasone here is the site http://www.nlm.nih.gov/medlineplus/ency/article/003504.htm In a message dated 7/2/2013 7:11:02 P.M. Eastern Daylight Time, bkbar...@aol.com writes: elevated cpk, -- -- [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] Skip Duffie to beth and all Sprycel and new drug
Thanks Skip for the update. You are truly a CML Warrior! Blessings Jeanie<3 In a message dated 7/3/2013 9:29:30 A.M. Eastern Daylight Time, skipd_2...@yahoo.com writes: .Hello all thanks for including me in your email. I was on sprycel and after while I had to have my chest drained. over a two month period I had to have 8.5 lts of fluid removed. So they had to take me off sprycel. I understand a lot of people who are on it have great results. It was the same for Imatinib, and Nilotinib. but on the good side I am on nothing now. My platelets yesterday were 13 and I received a bag. As it stands I receive 1 unit of RBC once week and twice weekly I receive a bag of Platelets. on the plus side my life is great. I have no problems, It takes me a few hours at the hospital twice weekly, where I am looked after like a rock star. I am spoiled. I just have to be careful not to play football or bang my head. I do have to be careful around my grandson he is a 3 year old wrecking crew. I wish you a wonderful life even with CML. In my case I did not think I would live beyond 1978 so I was warned, For those who do not know I was put on Myleran way back and was on it every year for about two three months, my counts would drop and slowly go up until I needed to be put back on Myleran (Bulsufan) Skip Duffie thanks Jeannie, I am on sprycel again as mentioned..at 50 - 60 a day. In PCRU for the first time in 3 years. Toxicity has been cpk elevated to 400...so muscles are constantly wasting and that makes me a kind of muscular tired different than other TKI's, eyebrows lost, hair loss, skin terribly dry, slightly more elevated liver enzymes but still in normal range. The biggest challenge is pain in the body with the elevated cpk. I have tried tramadol, but it goes through the liver and Tasigna gave my liver such a hard time, that I am protective of it, even though my liver numbers are fine.Regarding your question, In the fall, I started to feel worse and worse, could hardly get up and move, at 40 of sprycel..I had been on it for 2 years...minus a couple of holidays for surgeriesI had to go off everythingecho cardiogram showed the start of a possible developing problemin left ventricle...I went of Sprycel for 7 weeks, went on bosutinif for 7 weeks, then back on sprycel four days later after blood work showed bosutinif did not work for me..I also had another echo cardiogram and it was fine, so it resolved off of the meds for a couple of monthsI was on a low dose becuase that was all that could be tolerated by my body...50 of sprycel did not put me in remission, but 70 for one month,and 60 for two months. did..so I know how much I need to take for complete remission,, it's just if my body will allow me to. I have eye swelling, and calve swelling that I did not have on 40-50 that I have with 60-70 a day...so...I will be dosing down...and not worry about CMM, be happy if I stay in MMR and live well with less toxicity...most people never have the elevated cpk, or muscle issues, fatigue yes, but not this..so try not to worry, I am an odd bird when it comes to drug sensitivity.. have many issues others don't. Just the luck of the draw...I do most of the things you suggest already,bu trwill try castor oil and see if that helps..thanks so much for your note, be well Jeannie, Beth -Original Message- From: ICANDOALLTTC To: cmlhope Sent: Tue, Jul 2, 2013 7:54 am Subject: Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug Hi Beth, I am on Sprycel and it was the only drug that put me in PCRU. I battled with Gleevec for almost 5 years and then on Tasi for a few months. I was on 100 mgs daily and my onc didn't want me to cut down but I took it upon myself to cut down to 50 mgs daily. I haven't had the muscle problem yet, but feel it could be lurking there close by. Here's what I do nightly; get some organic castor oil and massage you feet and legs with the muscle area nightly. Do this twice a day if you can. Do it right before you turn in for the night. Of course eat well, and eat yogurt daily. If you are low on calcium get some good organic calcium in a liquid form, the one that isn't constipating and take a small dose daily along with some magnesium, Get a little sun on your long bones daily if you can. Walk if you can. Walking will help the headaches also; I suffer from them too and Sprycel makes them worse. Have you tried Tamadol for pain. I take it daily and it helps so I don't have to take any of the nsaids which we aren't suppose to take. It's a pain pill that you take before the pain begins. It can cause mild itching. Thanks for you input on the new drug. I thought that was the one that didn't have that many side effects. What was your toxicity to Sprycel?
Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug
> > > .Hello all >thanks for including me in your email. I was on sprycel and after while I had >to have my chest drained. >over a two month period I had to have 8.5 lts of fluid removed. So they had >to take me off sprycel. >I understand a lot of people who are on it have great results. It was the >same for Imatinib, and Nilotinib. >but on the good side I am on nothing now. My platelets yesterday were 13 and >I received a bag. >As it stands I receive 1 unit of RBC once week and twice weekly I receive a >bag of Platelets. >on the plus side my life is great. I have no problems, It takes me a few hours >at the hospital twice weekly, where I am looked after like a rock star. I am >spoiled. I just have to be careful not to play football >or bang my head. I do have to be careful around my grandson he is a 3 year >old wrecking crew. >I wish you a wonderful life even with CML. In my case I did not think I would >live beyond 1978 >so I was warned, For those who do not know I was put on Myleran way back and >was on it >every year for about two three months, my counts would drop and slowly go up >until I needed >to be put back on Myleran (Bulsufan) >Skip Duffie > > > > >thanks Jeannie, >I am on sprycel again as mentioned..at 50 - 60 a day. In PCRU for the first >time in 3 years. Toxicity has been cpk elevated to 400...so muscles are >constantly wasting and that makes me a kind of muscular tired different than >other TKI's, eyebrows lost, hair loss, skin terribly dry, slightly more >elevated liver enzymes but still in normal range. The biggest challenge is >pain in the body with the elevated cpk. I have tried tramadol, but it goes >through the liver and Tasigna gave my liver such a hard time, that I am >protective of it, even though my liver numbers are fine.Regarding your >question, In the fall, I started to feel worse and worse, could hardly get up >and move, at 40 of sprycel..I had been on it for 2 years...minus a couple of >holidays for surgeriesI had to go off everythingecho cardiogram showed >the start of a possible developing problemin left ventricle...I went of >Sprycel for 7 weeks, went on bosutinif for 7 weeks, then back on sprycel four days later after blood work showed bosutinif did not work for me..I also had another echo cardiogram and it was fine, so it resolved off of the meds for a couple of monthsI was on a low dose becuase that was all that could be tolerated by my body...50 of sprycel did not put me in remission, but 70 for one month,and 60 for two months. did..so I know how much I need to take for complete remission,, it's just if my body will allow me to. I have eye swelling, and calve swelling that I did not have on 40-50 that I have with 60-70 a day...so...I will be dosing down...and not worry about CMM, be happy if I stay in MMR and live well with less toxicity...most people never have the elevated cpk, or muscle issues, fatigue yes, but not this..so try not to worry, I am an odd bird when it comes to drug sensitivity.. >have many issues others don't. Just the luck of the draw...I do most of the >things you suggest already,bu trwill try castor oil and see if that >helps..thanks so much for your note, be well Jeannie, Beth > > >-Original Message- >From: ICANDOALLTTC >To: cmlhope >Sent: Tue, Jul 2, 2013 7:54 am >Subject: Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug > > >Hi Beth, I am on Sprycel and it was the only drug that put me in PCRU. >I battled with Gleevec for almost 5 years and then on Tasi for a few months. >I was on 100 mgs daily and my onc didn't want me to cut down but I took it >upon myself to cut down to 50 mgs daily. I haven't had the muscle problem >yet, but feel it could be lurking there close by. Here's what I do nightly; >get some organic castor oil and massage you feet and legs with the muscle area >nightly. Do this twice a day if you can. Do it right before you turn in for >the night. Of course eat well, and eat yogurt daily. If you are low on >calcium get some good organic calcium in a liquid form, the one that isn't >constipating and take a small dose daily along with some magnesium, >Get a little sun on your long bones daily if you can. Walk if you can. >Walking will help the headaches also; I suffer from them too and Sprycel makes >them worse. Have you tried Tamadol for pain. I take it daily and it helps so >I don't have to take any of the nsaids which we aren't suppose to take. It's >a pain pill that you take before the pain begins. It can cause mild itching. >Thanks for you input on the new drug. I thought that was the one that didn't >
Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug
thanks Jeannie, I am on sprycel again as mentioned..at 50 - 60 a day. In PCRU for the first time in 3 years. Toxicity has been cpk elevated to 400...so muscles are constantly wasting and that makes me a kind of muscular tired different than other TKI's, eyebrows lost, hair loss, skin terribly dry, slightly more elevated liver enzymes but still in normal range. The biggest challenge is pain in the body with the elevated cpk. I have tried tramadol, but it goes through the liver and Tasigna gave my liver such a hard time, that I am protective of it, even though my liver numbers are fine.Regarding your question, In the fall, I started to feel worse and worse, could hardly get up and move, at 40 of sprycel..I had been on it for 2 years...minus a couple of holidays for surgeriesI had to go off everythingecho cardiogram showed the start of a possible developing problemin left ventricle...I went of Sprycel for 7 weeks, went on bosutinif for 7 weeks, then back on sprycel four days later after blood work showed bosutinif did not work for me..I also had another echo cardiogram and it was fine, so it resolved off of the meds for a couple of monthsI was on a low dose becuase that was all that could be tolerated by my body...50 of sprycel did not put me in remission, but 70 for one month,and 60 for two months. did..so I know how much I need to take for complete remission,, it's just if my body will allow me to. I have eye swelling, and calve swelling that I did not have on 40-50 that I have with 60-70 a day...so...I will be dosing down...and not worry about CMM, be happy if I stay in MMR and live well with less toxicity...most people never have the elevated cpk, or muscle issues, fatigue yes, but not this..so try not to worry, I am an odd bird when it comes to drug sensitivity.. have many issues others don't. Just the luck of the draw...I do most of the things you suggest already,bu trwill try castor oil and see if that helps..thanks so much for your note, be well Jeannie, Beth -Original Message- From: ICANDOALLTTC To: cmlhope Sent: Tue, Jul 2, 2013 7:54 am Subject: Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug Hi Beth, I am on Sprycel and it was the only drug that put me in PCRU. I battled with Gleevec for almost 5 years and then on Tasi for a few months. I was on 100 mgs daily and my onc didn't want me to cut down but I took it upon myself to cut down to 50 mgs daily. I haven't had the muscle problem yet, but feel it could be lurking there close by. Here's what I do nightly; get some organic castor oil and massage you feet and legs with the muscle area nightly. Do this twice a day if you can. Do it right before you turn in for the night. Of course eat well, and eat yogurt daily. If you are low on calcium get some good organic calcium in a liquid form, the one that isn't constipating and take a small dose daily along with some magnesium, Get a little sun on your long bones daily if you can. Walk if you can. Walking will help the headaches also; I suffer from them too and Sprycel makes them worse. Have you tried Tamadol for pain. I take it daily and it helps so I don't have to take any of the nsaids which we aren't suppose to take. It's a pain pill that you take before the pain begins. It can cause mild itching. Thanks for you input on the new drug. I thought that was the one that didn't have that many side effects. What was your toxicity to Sprycel? Blessing Beth, Jeanie<3 In a message dated 4/19/2013 1:28:51 P.M. Eastern Daylight Time, bkbar...@aol.com writes: Dear Skip, Marty, Millie, and all those warriors who are struggling right now. I want to pass along a great big hug filled with hope, and light, and healing and positive energy. We need each other during the rough times and I am so glad we have one another. I too have been struggling mightily, but find the one thing that helps, that I keep on working on, is trusting in, believing in, knowing that we can live and love well inspite of and perhaps in some cases because of our illness and how it informs our lives. Isolation and fear are powerful tools that push against us. Community and holding hope and faith for ourselves, our bodies and our spirits, here, united together, will serve and guide us well. I read every day and think of all my fellow warriors out there, those who write, and those who read, and send a prayer to all for peace of mind body and spirit. I tried bosutinib and had horrible side effects at a moderate dose, muscle rigidity all over the body, elevated cpk, emotional distress... after 8 weeks, the BCR showed it had not done anything for the cancer, the cancer had actually grown threw it and I lost two logs. So now back on sprycel at 50 and working on getting back into remission. As I had to go off sprycel in December because of toxicity, it's a scary
Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug
Hi Beth, I am on Sprycel and it was the only drug that put me in PCRU. I battled with Gleevec for almost 5 years and then on Tasi for a few months. I was on 100 mgs daily and my onc didn't want me to cut down but I took it upon myself to cut down to 50 mgs daily. I haven't had the muscle problem yet, but feel it could be lurking there close by. Here's what I do nightly; get some organic castor oil and massage you feet and legs with the muscle area nightly. Do this twice a day if you can. Do it right before you turn in for the night. Of course eat well, and eat yogurt daily. If you are low on calcium get some good organic calcium in a liquid form, the one that isn't constipating and take a small dose daily along with some magnesium, Get a little sun on your long bones daily if you can. Walk if you can. Walking will help the headaches also; I suffer from them too and Sprycel makes them worse. Have you tried Tamadol for pain. I take it daily and it helps so I don't have to take any of the nsaids which we aren't suppose to take. It's a pain pill that you take before the pain begins. It can cause mild itching. Thanks for you input on the new drug. I thought that was the one that didn't have that many side effects. What was your toxicity to Sprycel? Blessing Beth, Jeanie<3 In a message dated 4/19/2013 1:28:51 P.M. Eastern Daylight Time, bkbar...@aol.com writes: Dear Skip, Marty, Millie, and all those warriors who are struggling right now. I want to pass along a great big hug filled with hope, and light, and healing and positive energy. We need each other during the rough times and I am so glad we have one another. I too have been struggling mightily, but find the one thing that helps, that I keep on working on, is trusting in, believing in, knowing that we can live and love well inspite of and perhaps in some cases because of our illness and how it informs our lives. Isolation and fear are powerful tools that push against us. Community and holding hope and faith for ourselves, our bodies and our spirits, here, united together, will serve and guide us well. I read every day and think of all my fellow warriors out there, those who write, and those who read, and send a prayer to all for peace of mind body and spirit. I tried bosutinib and had horrible side effects at a moderate dose, muscle rigidity all over the body, elevated cpk, emotional distress... after 8 weeks, the BCR showed it had not done anything for the cancer, the cancer had actually grown threw it and I lost two logs. So now back on sprycel at 50 and working on getting back into remission. As I had to go off sprycel in December because of toxicity, it's a scary time. But I remain positive and am researching alternative and complementary options to aid with the toxiicity. If anyone has any suggestions about muscle spasticity, please let me know. I can handle the rashes, migraines, muscle wasting/fatigue/ weakness, But this one is new, ongoing and the greatest challenge yet. thanks for yoru help. Beth -Original Message- From: gene and guy Larcher To: cmlhope Sent: Fri, Apr 19, 2013 10:49 am Subject: [CMLHope] Skip Duffie Dear Skip: So good to hear from you after quite some time. Very sorry to hear you have been so poorly but the good news is that you are getting better. You, along with Marty, have given tremendous hope to the rest of us and shown how to bear long illness with good spirits. Dear old warrior - we wish you the very best and hope to hear much more from you in the future. Guy -- -- [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
Re: [CMLHope] Skip Duffie
Old traditions are great! I wish we still had some of ours. The old timey family parties and etc. Put a note in for me and all our CML'ERS. We need all the help we can get. Have a wonderful trip and we will pray for you and your trip also. Jeanie<3 In a message dated 4/21/2013 1:03:49 A.M. Eastern Daylight Time, margoo...@aol.com writes: Hi Beth and Fellow Warriors: I pray for all of us to do well and live long, happy, pain free lives. What Millie wrote is so true. People who don't have CML or those who aren't related or very close to a CML patient don't get it. My sister is in from Florida because our 92 year old father had a stroke 3 weeks ago. Tonight we had dinner with cousins who kept saying to me, I guess you aren't really sick because you look great. Really? I'm wearing a wig, just started with false eyelashes, had a week with such bad Gleevec stomach that I can barely sit because my bottom is so sore, muscle cramps and terrible bone pain. But life goes on and I'm determined to live my life, not focus on my death. That will happen whenever the Heavenly Father determines that it is my time. The point I guess I'm making is that there is so much isolation and fear because we have something rare and it is scary to us and others to hear the word cancer. The silver lining is that we have an illness that can be managed, albeit with horrific side effects for many, for quite a long time. Plus new treatment options. And we have one another which is a true blessing. Beth, I send good wishes your way and will say prayers for you. My heartfelt thanks to all of you for the kindness you always extend. One last thing. I'm going to Israel the end of May. There is a tradition in my religion, Judaism, that if you write a note or prayer on a small piece of paper and fold it up and place it in a crack in the Western Wall in Jerusalem that God will answer your prayers. I've had miraculous experiences, including that more than 28 years ago we were told it was IMPOSSIBLE for me to get pregnant. I gave a prayer to a friend who was going to Israel that asked God to bless us with a baby and within 6 weeks got pregnant. We only have one very beautiful 25 year old daughter. If anyone would like me to place notes for them, please let me know and I'll give you my private email. I figure a prayer to God is always a good thing and I am happy to do this for anyone that would feel some comfort and hope in this old tradition. Marcie Sent from my iPad On Apr 20, 2013, at 4:04 AM, "C.M. Houtz" <_houtz@ptd.net_ (mailto:ho...@ptd.net) > wrote: 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 m
Re: [CMLHope] Skip Duffie
Can you explain why they are counting your ANC? Thanks Jeanie<3 In a message dated 4/21/2013 10:03:29 A.M. Eastern Daylight Time, skipd_2...@yahoo.com writes: Great advice Marty, white count down to 1.9 and ANC still down to less the 300 once we bring them up I will back in the saddle again Thanks Marty From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Saturday, April 20, 2013 12:48:21 AM Subject: Re: [CMLHope] Skip Duffie Hi Beth, I just have one thing to say in answer to your post. You wrote "Isolation and fear are powerful tools" Indeed they are, but do you want to know a much more powerful tool? It's your Mind. 18's, Marty On Fri, Apr 19, 2013 at 1:28 PM, <_bkbarney@aol.com_ (mailto:bkbar...@aol.com) > wrote: Dear Skip, Marty, Millie, and all those warriors who are struggling right now. I want to pass along a great big hug filled with hope, and light, and healing and positive energy. We need each other during the rough times and I am so glad we have one another. I too have been struggling mightily, but find the one thing that helps, that I keep on working on, is trusting in, believing in, knowing that we can live and love well inspite of and perhaps in some cases because of our illness and how it informs our lives. Isolation and fear are powerful tools that push against us. Community and holding hope and faith for ourselves, our bodies and our spirits, here, united together, will serve and guide us well. I read every day and think of all my fellow warriors out there, those who write, and those who read, and send a prayer to all for peace of mind body and spirit. I tried bosutinib and had horrible side effects at a moderate dose, muscle rigidity all over the body, elevated cpk, emotional distress... after 8 weeks, the BCR showed it had not done anything for the cancer, the cancer had actually grown threw it and I lost two logs. So now back on sprycel at 50 and working on getting back into remission. As I had to go off sprycel in December because of toxicity, it's a scary time. But I remain positive and am researching alternative and complementary options to aid with the toxiicity. If anyone has any suggestions about muscle spasticity, please let me know. I can handle the rashes, migraines, muscle wasting/fatigue/ weakness, But this one is new, ongoing and the greatest challenge yet. thanks for yoru help. Beth -Original Message- From: gene and guy Larcher <_gandglarcher@gmail.com_ (mailto:gandglarc...@gmail.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Fri, Apr 19, 2013 10:49 am Subject: [CMLHope] Skip Duffie Dear Skip: So good to hear from you after quite some time. Very sorry to hear you have been so poorly but the good news is that you are getting better. You, along with Marty, have given tremendous hope to the rest of us and shown how to bear long illness with good spirits. Dear old warrior - we wish you the very best and hope to hear much more from you in the future. Guy -- -- [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_ (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/ - 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 _mailto:cmlhope%2Bunsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of htt
Re: [CMLHope] Skip Duffie
I am thinking of you MIllie and hope you get good diagnostics to help you address whatever is going on so you can feel better. I will send prayers your way. Beth -Original Message- From: C.M. Houtz To: cmlhope Sent: Wed, Apr 24, 2013 10:38 pm Subject: 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 -- -- [CMLHop
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
Re: [CMLHope] Skip Duffie
Hi Beth: My email, for anyone on this site, is margoo...@aol.com. Please put your name and your mother's name. As I have told each CMLer, I promise to say individual prayers for everyone who sends me a note. The notes are placed one by one, not collectively. We love Israel, have been there many, many times but not since being diagnosed 4 years ago. This is my first out of the country trip. We are renting an apartment in Tel Aviv, spending a couple of nights in Jerusalem and best of all, taking my sister (my best friend, my therapist and go to for anything and everything person) who has never been there. Regretfully she lost her husband suddenly in July and he was only 64. So this will truly be a very special trip. I am grateful to be well enough to travel. As an aside for all my CML friends, I support and honor all religions and I don't like extremists of any faith, my own included. I have a first cousin who is a nun and one who is an ultra orthodox rabbi! Everyone respects and loves one another. As long as you love God and are a kind and good human being, what difference does it make what path you take? If anyone is on Facebook, look me up and friend me. Marcie Goodman, Baltimore, Maryland. Much love and stay well. Marcie Sent from my iPad On Apr 23, 2013, at 7:54 PM, bkbar...@aol.com wrote: > marcie, > I would welcome sending you a prayer to place in the wall for me. Please > send email to send it to. > > Thank you so much for this generous and thoughtful gesture. That you are able > to get to Israel..what a blessing!!! > > Beth > > > -Original Message- > From: Marcie Goodman > To: cmlhope > Cc: > Sent: Sun, Apr 21, 2013 12:04 am > Subject: Re: [CMLHope] Skip Duffie > > Hi Beth and Fellow Warriors: > > I pray for all of us to do well and live long, happy, pain free lives. What > Millie wrote is so true. People who don't have CML or those who aren't > related or very close to a CML patient don't get it. My sister is in from > Florida because our 92 year old father had a stroke 3 weeks ago. Tonight we > had dinner with cousins who kept saying to me, I guess you aren't really sick > because you look great. Really? I'm wearing a wig, just started with false > eyelashes, had a week with such bad Gleevec stomach that I can barely sit > because my bottom is so sore, muscle cramps and terrible bone pain. But life > goes on and I'm determined to live my life, not focus on my death. That will > happen whenever the Heavenly Father determines that it is my time. > > The point I guess I'm making is that there is so much isolation and fear > because we have something rare and it is scary to us and others to hear the > word cancer. The silver lining is that we have an illness that can be > managed, albeit with horrific side effects for many, for quite a long time. > Plus new treatment options. And we have one another which is a true > blessing. > > Beth, I send good wishes your way and will say prayers for you. My heartfelt > thanks to all of you for the kindness you always extend. > > One last thing. I'm going to Israel the end of May. There is a tradition in > my religion, Judaism, that if you write a note or prayer on a small piece of > paper and fold it up and place it in a crack in the Western Wall in Jerusalem > that God will answer your prayers. I've had miraculous experiences, including > that more than 28 years ago we were told it was IMPOSSIBLE for me to get > pregnant. I gave a prayer to a friend who was going to Israel that asked God > to bless us with a baby and within 6 weeks got pregnant. We only have one > very beautiful 25 year old daughter. If anyone would like me to place notes > for them, please let me know and I'll give you my private email. I figure a > prayer to God is always a good thing and I am happy to do this for anyone > that would feel > some comfort and hope in this old tradition. > > Marcie > > Sent from my iPad > > On Apr 20, 2013, at 4:04 AM, "C.M. Houtz" wrote: > >> 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&
Re: [CMLHope] Skip Duffie
Thanks Marty. Beth -Original Message- From: Skip Duffie To: cmlhope Sent: Sun, Apr 21, 2013 9:03 am Subject: Re: [CMLHope] Skip Duffie Great advice Marty, white count down to 1.9 and ANC still down to less the 300 once we bring them up I will back in the saddle again Thanks Marty From: Marty Gartenberg To: cmlhope@googlegroups.com Sent: Saturday, April 20, 2013 12:48:21 AM Subject: Re: [CMLHope] Skip Duffie Hi Beth, I just have one thing to say in answer to your post. You wrote "Isolation and fear are powerful tools" Indeed they are, but do you want to know a much more powerful tool? It's your Mind. 18's, Marty On Fri, Apr 19, 2013 at 1:28 PM, wrote: Dear Skip, Marty, Millie, and all those warriors who are struggling right now. I want to pass along a great big hug filled with hope, and light, and healing and positive energy. We need each other during the rough times and I am so glad we have one another. I too have been struggling mightily, but find the one thing that helps, that I keep on working on, is trusting in, believing in, knowing that we can live and love well inspite of and perhaps in some cases because of our illness and how it informs our lives. Isolation and fear are powerful tools that push against us. Community and holding hope and faith for ourselves, our bodies and our spirits, here, united together, will serve and guide us well. I read every day and think of all my fellow warriors out there, those who write, and those who read, and send a prayer to all for peace of mind body and spirit. I tried bosutinib and had horrible side effects at a moderate dose, muscle rigidity all over the body, elevated cpk, emotional distress... after 8 weeks, the BCR showed it had not done anything for the cancer, the cancer had actually grown threw it and I lost two logs. So now back on sprycel at 50 and working on getting back into remission. As I had to go off sprycel in December because of toxicity, it's a scary time. But I remain positive and am researching alternative and complementary options to aid with the toxiicity. If anyone has any suggestions about muscle spasticity, please let me know. I can handle the rashes, migraines, muscle wasting/fatigue/ weakness, But this one is new, ongoing and the greatest challenge yet. thanks for yoru help. Beth -Original Message- From: gene and guy Larcher To: cmlhope Sent: Fri, Apr 19, 2013 10:49 am Subject: [CMLHope] Skip Duffie Dear Skip: So good to hear from you after quite some time. Very sorry to hear you have been so poorly but the good news is that you are getting better. You, along with Marty, have given tremendous hope to the rest of us and shown how to bear long illness with good spirits. Dear old warrior - we wish you the very best and hope to hear much more from you in the future. Guy -- -- [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 mailto:cmlhope%2bunsubscr...@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 ema
Re: [CMLHope] Skip Duffie
marcie, I would welcome sending you a prayer to place in the wall for me. Please send email to send it to. Thank you so much for this generous and thoughtful gesture. That you are able to get to Israel..what a blessing!!! Beth -Original Message- From: Marcie Goodman To: cmlhope Cc: Sent: Sun, Apr 21, 2013 12:04 am Subject: Re: [CMLHope] Skip Duffie Hi Beth and Fellow Warriors: I pray for all of us to do well and live long, happy, pain free lives. What Millie wrote is so true. People who don't have CML or those who aren't related or very close to a CML patient don't get it. My sister is in from Florida because our 92 year old father had a stroke 3 weeks ago. Tonight we had dinner with cousins who kept saying to me, I guess you aren't really sick because you look great. Really? I'm wearing a wig, just started with false eyelashes, had a week with such bad Gleevec stomach that I can barely sit because my bottom is so sore, muscle cramps and terrible bone pain. But life goes on and I'm determined to live my life, not focus on my death. That will happen whenever the Heavenly Father determines that it is my time. The point I guess I'm making is that there is so much isolation and fear because we have something rare and it is scary to us and others to hear the word cancer. The silver lining is that we have an illness that can be managed, albeit with horrific side effects for many, for quite a long time. Plus new treatment options. And we have one another which is a true blessing. Beth, I send good wishes your way and will say prayers for you. My heartfelt thanks to all of you for the kindness you always extend. One last thing. I'm going to Israel the end of May. There is a tradition in my religion, Judaism, that if you write a note or prayer on a small piece of paper and fold it up and place it in a crack in the Western Wall in Jerusalem that God will answer your prayers. I've had miraculous experiences, including that more than 28 years ago we were told it was IMPOSSIBLE for me to get pregnant. I gave a prayer to a friend who was going to Israel that asked God to bless us with a baby and within 6 weeks got pregnant. We only have one very beautiful 25 year old daughter. If anyone would like me to place notes for them, please let me know and I'll give you my private email. I figure a prayer to God is always a good thing and I am happy to do this for anyone that would feel some comfort and hope in this old tradition. Marcie Sent from my iPad On Apr 20, 2013, at 4:04 AM, "C.M. Houtz" wrote: 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 fi
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://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] Skip Duffie
Marty, consider it done. Thanks for the hebrew and mother's names. I will also say a mishaberach for you. You will remain on my prayer list, as I am part of a tehillim prayer group. Sent from my iPad On Apr 21, 2013, at 11:03 AM, Marty Gartenberg wrote: > Dear Marcie, > > I too have been to Israel and also placed several "notes" into the cracks of > the Western Wall for others suffering from cancer. > > I would very much like if you could place a piece of paper in one of the > cracks of that wall. > > My email address is wa2...@juno.com. If you would kindly contact me I would > appreciate it. > > 18's > > Marty > > > On Sun, Apr 21, 2013 at 12:57 AM, Marcie Goodman wrote: >> Hi Beth and Fellow Warriors: >> >> I pray for all of us to do well and live long, happy, pain free lives. What >> Millie wrote is so true. People who don't have CML or those who aren't >> related or very close to a CML patient don't get it. My sister is in from >> Florida because our 92 year old father had a stroke 3 weeks ago. Tonight we >> had dinner with cousins who kept saying to me, I guess you aren't really >> sick because you look great. Really? I'm wearing a wig, just started with >> false eyelashes, had a week with such bad Gleevec stomach that I can barely >> sit because my bottom is so sore, muscle cramps and terrible bone pain. But >> life goes on and I'm determined to live my life, not focus on my death. That >> will happen whenever the Heavenly Father determines that it is my time. >> >> The point I guess I'm making is that there is so much isolation and fear >> because we have something rare and it is scary to us and others to hear the >> word cancer. The silver lining is that we have an illness that can be >> managed, albeit with horrific side effects for many, for quite a long time. >> Plus new treatment options. And we have one another which is a true >> blessing. >> >> Beth, I send good wishes your way and will say prayers for you. My heartfelt >> thanks to all of you for the kindness you always extend. >> >> One last thing. I'm going to Israel the end of May. There is a tradition in >> my religion, Judaism, that if you write a note or prayer on a small piece of >> paper and fold it up and place it in a crack in the Western Wall in >> Jerusalem that God will answer your prayers. I've had miraculous >> experiences, including that more than 28 years ago we were told it was >> IMPOSSIBLE for me to get pregnant. I gave a prayer to a friend who was going >> to Israel that asked God to bless us with a baby and within 6 weeks got >> pregnant. We only have one very beautiful 25 year old daughter. If anyone >> would like me to place notes for them, please let me know and I'll give you >> my private email. I figure a prayer to God is always a good thing and I am >> happy to do this for anyone that would feel >> some comfort and hope in this old tradition. >> >> Marcie >> >> Sent from my iPad >> >> On Apr 20, 2013, at 4:04 AM, "C.M. Houtz" wrote: >> >>> 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 gon
Re: [CMLHope] Skip Duffie
Dear Marcie, I too have been to Israel and also placed several "notes" into the cracks of the Western Wall for others suffering from cancer. I would very much like if you could place a piece of paper in one of the cracks of that wall. My email address is wa2...@juno.com. If you would kindly contact me I would appreciate it. 18's Marty On Sun, Apr 21, 2013 at 12:57 AM, Marcie Goodman wrote: > Hi Beth and Fellow Warriors: > > I pray for all of us to do well and live long, happy, pain free lives. > What Millie wrote is so true. People who don't have CML or those who aren't > related or very close to a CML patient don't get it. My sister is in from > Florida because our 92 year old father had a stroke 3 weeks ago. Tonight we > had dinner with cousins who kept saying to me, I guess you aren't really > sick because you look great. Really? I'm wearing a wig, just started with > false eyelashes, had a week with such bad Gleevec stomach that I can barely > sit because my bottom is so sore, muscle cramps and terrible bone pain. But > life goes on and I'm determined to live my life, not focus on my death. > That will happen whenever the Heavenly Father determines that it is my > time. > > The point I guess I'm making is that there is so much isolation and fear > because we have something rare and it is scary to us and others to hear the > word cancer. The silver lining is that we have an illness that can be > managed, albeit with horrific side effects for many, for quite a long time. > Plus new treatment options. And we have one another which is a true > blessing. > > Beth, I send good wishes your way and will say prayers for you. My > heartfelt thanks to all of you for the kindness you always extend. > > One last thing. I'm going to Israel the end of May. There is a tradition > in my religion, Judaism, that if you write a note or prayer on a small > piece of paper and fold it up and place it in a crack in the Western Wall > in Jerusalem that God will answer your prayers. I've had miraculous > experiences, including that more than 28 years ago we were told it was > IMPOSSIBLE for me to get pregnant. I gave a prayer to a friend who was > going to Israel that asked God to bless us with a baby and within 6 weeks > got pregnant. We only have one very beautiful 25 year old daughter. If > anyone would like me to place notes for them, please let me know and I'll > give you my private email. I figure a prayer to God is always a good thing > and I am happy to do this for anyone that would feel > some comfort and hope in this old tradition. > > Marcie > > Sent from my iPad > > On Apr 20, 2013, at 4:04 AM, "C.M. Houtz" wrote: > > *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 ge
Re: [CMLHope] Skip Duffie
Great advice Marty, white count down to 1.9 and ANC still down to less the 300 once we bring them up I will back in the saddle again Thanks Marty > > From: Marty Gartenberg >To: cmlhope@googlegroups.com >Sent: Saturday, April 20, 2013 12:48:21 AM >Subject: Re: [CMLHope] Skip Duffie > > > >Hi Beth, > >I just have one thing to say in answer to your post. You wrote "Isolation and >fear are powerful tools" Indeed they are, but do you want to know a much more >powerful tool? It's your Mind. > >18's, > >Marty > > > > >On Fri, Apr 19, 2013 at 1:28 PM, wrote: > >Dear Skip, Marty, Millie, and all those warriors who are struggling right now. >I want to pass along a great big hug filled with hope, and light, and healing >and positive energy. We need each other during the rough times and I am so >glad we have one another. I too have been struggling mightily, but find the >one thing that helps, that I keep on working on, is trusting in, believing >in, knowing that we can live and love well inspite of and perhaps in some >cases because of our illness and how it informs our lives. Isolation and fear >are powerful tools that push against us. Community and holding hope and faith >for ourselves, our bodies and our spirits, here, united together, will serve >and guide us well. I read every day and think of all my fellow warriors out >there, those who write, and those who read, and send a prayer to all for peace >of mind body and spirit. >> >>I tried bosutinib and had horrible side effects at a moderate dose, muscle >>rigidity all over the body, elevated cpk, emotional distress... after 8 >>weeks, the BCR showed it had not done anything for the cancer, the cancer had >>actually grown threw it and I lost two logs. So now back on sprycel at 50 and >>working on getting back into remission. As I had to go off sprycel in >>December because of toxicity, it's a scary time. But I remain positive and am >>researching alternative and complementary options to aid with the toxiicity. >>If anyone has any suggestions about muscle spasticity, please let me know. I >>can handle the rashes, migraines, muscle wasting/fatigue/ weakness, But this >>one is new, ongoing and the greatest challenge yet. >> >>thanks for yoru help. >> >>Beth >> >> >>-Original Message- >>From: gene and guy Larcher >>To: cmlhope >>Sent: Fri, Apr 19, 2013 10:49 am >>Subject: [CMLHope] Skip Duffie >> >> >>Dear Skip: >> >>So good to hear from you after quite some time. >> >>Very sorry to hear you have been so poorly but the good news is that you are >>getting better. >> >>You, along with Marty, have given tremendous hope to the rest of us and shown >> how to bear long illness with good spirits. >> >>Dear old warrior - we wish you the very best and hope to hear much more from >>you in the future. >> >>Guy >> -- >>-- >>[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 mailto:cmlhope%2bunsubscr...@googlegroups.com. >>For more options, visit https://groups
Re: [CMLHope] Skip Duffie
Hi Beth and Fellow Warriors: I pray for all of us to do well and live long, happy, pain free lives. What Millie wrote is so true. People who don't have CML or those who aren't related or very close to a CML patient don't get it. My sister is in from Florida because our 92 year old father had a stroke 3 weeks ago. Tonight we had dinner with cousins who kept saying to me, I guess you aren't really sick because you look great. Really? I'm wearing a wig, just started with false eyelashes, had a week with such bad Gleevec stomach that I can barely sit because my bottom is so sore, muscle cramps and terrible bone pain. But life goes on and I'm determined to live my life, not focus on my death. That will happen whenever the Heavenly Father determines that it is my time. The point I guess I'm making is that there is so much isolation and fear because we have something rare and it is scary to us and others to hear the word cancer. The silver lining is that we have an illness that can be managed, albeit with horrific side effects for many, for quite a long time. Plus new treatment options. And we have one another which is a true blessing. Beth, I send good wishes your way and will say prayers for you. My heartfelt thanks to all of you for the kindness you always extend. One last thing. I'm going to Israel the end of May. There is a tradition in my religion, Judaism, that if you write a note or prayer on a small piece of paper and fold it up and place it in a crack in the Western Wall in Jerusalem that God will answer your prayers. I've had miraculous experiences, including that more than 28 years ago we were told it was IMPOSSIBLE for me to get pregnant. I gave a prayer to a friend who was going to Israel that asked God to bless us with a baby and within 6 weeks got pregnant. We only have one very beautiful 25 year old daughter. If anyone would like me to place notes for them, please let me know and I'll give you my private email. I figure a prayer to God is always a good thing and I am happy to do this for anyone that would feel some comfort and hope in this old tradition. Marcie Sent from my iPad On Apr 20, 2013, at 4:04 AM, "C.M. Houtz" wrote: > 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 receiv
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://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] Skip Duffie
Hi Beth, I just have one thing to say in answer to your post. You wrote "Isolation and fear are powerful tools" Indeed they are, but do you want to know a much more powerful tool? It's your Mind. 18's, Marty On Fri, Apr 19, 2013 at 1:28 PM, wrote: > Dear Skip, Marty, Millie, and all those warriors who are struggling right > now. I want to pass along a great big hug filled with hope, and light, and > healing and positive energy. We need each other during the rough times and > I am so glad we have one another. I too have been struggling mightily, but > find the one thing that helps, that I keep on working on, is trusting in, > believing in, knowing that we can live and love well inspite of and perhaps > in some cases because of our illness and how it informs our lives. > Isolation and fear are powerful tools that push against us. Community and > holding hope and faith for ourselves, our bodies and our spirits, here, > united together, will serve and guide us well. I read every day and think > of all my fellow warriors out there, those who write, and those who read, > and send a prayer to all for peace of mind body and spirit. > I tried bosutinib and had horrible side effects at a moderate dose, > muscle rigidity all over the body, elevated cpk, emotional distress... > after 8 weeks, the BCR showed it had not done anything for the cancer, the > cancer had actually grown threw it and I lost two logs. So now back on > sprycel at 50 and working on getting back into remission. As I had to go > off sprycel in December because of toxicity, it's a scary time. But I > remain positive and am researching alternative and complementary options to > aid with the toxiicity. If anyone has any suggestions about muscle > spasticity, please let me know. I can handle the rashes, migraines, muscle > wasting/fatigue/ weakness, But this one is new, ongoing and the greatest > challenge yet. > > thanks for yoru help. > > Beth > > -Original Message- > From: gene and guy Larcher > To: cmlhope > Sent: Fri, Apr 19, 2013 10:49 am > Subject: [CMLHope] Skip Duffie > > Dear Skip: > > So good to hear from you after quite some time. > > Very sorry to hear you have been so poorly but the good news is that you > are getting better. > > You, along with Marty, have given tremendous hope to the rest of us and > shown how to bear long illness with good spirits. > > Dear old warrior - we wish you the very best and hope to hear much more > from you in the future. > > Guy > > -- > -- > [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] Skip Duffie
Dear Skip, Marty, Millie, and all those warriors who are struggling right now. I want to pass along a great big hug filled with hope, and light, and healing and positive energy. We need each other during the rough times and I am so glad we have one another. I too have been struggling mightily, but find the one thing that helps, that I keep on working on, is trusting in, believing in, knowing that we can live and love well inspite of and perhaps in some cases because of our illness and how it informs our lives. Isolation and fear are powerful tools that push against us. Community and holding hope and faith for ourselves, our bodies and our spirits, here, united together, will serve and guide us well. I read every day and think of all my fellow warriors out there, those who write, and those who read, and send a prayer to all for peace of mind body and spirit. I tried bosutinib and had horrible side effects at a moderate dose, muscle rigidity all over the body, elevated cpk, emotional distress... after 8 weeks, the BCR showed it had not done anything for the cancer, the cancer had actually grown threw it and I lost two logs. So now back on sprycel at 50 and working on getting back into remission. As I had to go off sprycel in December because of toxicity, it's a scary time. But I remain positive and am researching alternative and complementary options to aid with the toxiicity. If anyone has any suggestions about muscle spasticity, please let me know. I can handle the rashes, migraines, muscle wasting/fatigue/ weakness, But this one is new, ongoing and the greatest challenge yet. thanks for yoru help. Beth -Original Message- From: gene and guy Larcher To: cmlhope Sent: Fri, Apr 19, 2013 10:49 am Subject: [CMLHope] Skip Duffie Dear Skip: So good to hear from you after quite some time. Very sorry to hear you have been so poorly but the good news is that you are getting better. You, along with Marty, have given tremendous hope to the rest of us and shown how to bear long illness with good spirits. Dear old warrior - we wish you the very best and hope to hear much more from you in the future. Guy -- -- [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] Skip Duffie
Dear Skip: So good to hear from you after quite some time. Very sorry to hear you have been so poorly but the good news is that you are getting better. You, along with Marty, have given tremendous hope to the rest of us and shown how to bear long illness with good spirits. Dear old warrior - we wish you the very best and hope to hear much more from you in the future. Guy -- -- [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] Skip Duffie
Good luck and God Bless Skip -- [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] Skip Duffie
My prayers are with Skip. Date: Tue, 24 Nov 2009 18:49:19 -0800 From: maggy...@bellsouth.net Subject: Re: [CMLHope] Skip Duffie To: cmlhope@googlegroups.com Sending a prayer out to Skip ! --- On Sat, 11/21/09, Zavie Miller wrote: From: Zavie Miller Subject: [CMLHope] Skip Duffie To: c...@yahoogroups.com, CMLHope@googlegroups.com Date: Saturday, November 21, 2009, 1:09 PM Hi all, I spoke with Skip this morning and he asked me report on how he is doing. When I spoke to him a couple of weeks ago he was in really bad shape. I didn’t think he was going to make it. Today sounded well and back to his old self. At the moment he is off all medications waiting for what is left of his marrow to recover. It turned out that it was the Exjade side effects that were causing him most of his problems. Here are some of his current counts. They are not in error. WBC = 0.5, Platelets, 4.0 and Hemoglobin=80. He is still transfusion dependent, but not as often as the past couple of months. His case was presented to a panel doctors with Dr. David Marin from Hammersmith moderating the session. One of the doctor’s opinion was that this patient should be dead. Dr. Marin has suggested that he go off all treatment to give his blood and marrow a chance to recover. This has helped dramatically and we will see what the future brings. Dr. Marin doesn’t think he should be subjected to any of the CML drugs. Skip has had CML for over 32 years. Zavie Zavie Miller (age 71) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 e-mail: zmil...@sympatico.ca Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 Yahoo ID: zaviem -- [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] Skip Duffie
Sending a prayer out to Skip ! --- On Sat, 11/21/09, Zavie Miller wrote: From: Zavie Miller Subject: [CMLHope] Skip Duffie To: c...@yahoogroups.com, CMLHope@googlegroups.com Date: Saturday, November 21, 2009, 1:09 PM Hi all, I spoke with Skip this morning and he asked me report on how he is doing. When I spoke to him a couple of weeks ago he was in really bad shape. I didn’t think he was going to make it. Today sounded well and back to his old self. At the moment he is off all medications waiting for what is left of his marrow to recover. It turned out that it was the Exjade side effects that were causing him most of his problems. Here are some of his current counts. They are not in error. WBC = 0.5, Platelets, 4.0 and Hemoglobin=80. He is still transfusion dependent, but not as often as the past couple of months. His case was presented to a panel doctors with Dr. David Marin from Hammersmith moderating the session. One of the doctor’s opinion was that this patient should be dead. Dr. Marin has suggested that he go off all treatment to give his blood and marrow a chance to recover. This has helped dramatically and we will see what the future brings. Dr. Marin doesn’t think he should be subjected to any of the CML drugs. Skip has had CML for over 32 years. Zavie Zavie Miller (age 71) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 e-mail: zmil...@sympatico.ca Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 Yahoo ID: zaviem -- [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] Skip Duffie
Hi all, I spoke with Skip this morning and he asked me report on how he is doing. When I spoke to him a couple of weeks ago he was in really bad shape. I didn't think he was going to make it. Today sounded well and back to his old self. At the moment he is off all medications waiting for what is left of his marrow to recover. It turned out that it was the Exjade side effects that were causing him most of his problems. Here are some of his current counts. They are not in error. WBC = 0.5, Platelets, 4.0 and Hemoglobin=80. He is still transfusion dependent, but not as often as the past couple of months. His case was presented to a panel doctors with Dr. David Marin from Hammersmith moderating the session. One of the doctor's opinion was that this patient should be dead. Dr. Marin has suggested that he go off all treatment to give his blood and marrow a chance to recover. This has helped dramatically and we will see what the future brings. Dr. Marin doesn't think he should be subjected to any of the CML drugs. Skip has had CML for over 32 years. Zavie Zavie Miller (age 71) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 e-mail: zmil...@sympatico.ca Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 Yahoo ID: zaviem -- [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
