Hi Irene and thanks for the update on bosutimib. Any side effects and etc? Jeanie<3 In a message dated 12/18/2013 8:25:05 A.M. Eastern Standard Time, [email protected] writes:
Who is on bosutinib? that would be me. I am # 21 on the #1 Trail. It was called SKI 606 when I started but changed it name when it got accepted by the FDA. It works great for me. Irene -----Original Message----- From: [email protected] Sent: Dec 18, 2013 4:14 AM To: Digest Recipients Subject: [CMLHope] Digest for [email protected] - 9 Messages in 5 Topics ============================================================================ = Today's Topic Summary ============================================================================ = Group: [email protected] Url: http://groups.google.com/group/cmlhope/topics - Update. [4 Updates] http://groups.google.com/group/cmlhope/t/bd1d252cb56b066c - Holidays [1 Update] http://groups.google.com/group/cmlhope/t/fbf99d1b27bbf5bc - Happy Holidays [2 Updates] http://groups.google.com/group/cmlhope/t/f4e833eaca9f553a - Sprycel and Musculoskeletal pain [1 Update] http://groups.google.com/group/cmlhope/t/8c87684445baa235 - Tasigna and stomach issues proton pump inhib [1 Update] http://groups.google.com/group/cmlhope/t/ef888ce95da21cbf ============================================================================ = Topic: Update. Url: http://groups.google.com/group/cmlhope/t/bd1d252cb56b066c ============================================================================ = ---------- 1 of 4 ---------- From: Susan Zimmerman Date: Dec 17 08:34AM -0500 Url: http://groups.google.com/group/cmlhope/msg/73f4fc533b7cfcf2 So sorry to hear this, Richard. My numbers were quite a bit higher than yours, and I'm still without meds. I know I need to be careful, so will get tested real soon. I thank God every day for each free day without medicine. I'm also hoping they get that vaccination perfected and out of trial stage very, very soon. Merry again, Susan -----Original Message----- From: Richard H To: cmlhope Sent: Tue, Dec 17, 2013 12:15 am Subject: [CMLHope] Update. I saw my ONC today for my results. The news was not what I wanted to hear. My test broke our test level max of .10. I wll go back in March to redo the test and we will decide which protocol we will try. He is looking at 2 that are looking like a better treatment for me because of my problems with Gleevec. Richard H. -- -- [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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. For more options, visit https://groups.google.com/groups/opt_out. ---------- 2 of 4 ---------- From: [email protected] Date: Dec 17 05:15PM -0500 Url: http://groups.google.com/group/cmlhope/msg/635efbd16542ade3 HI Richard . So sorry to hear your numbers are up...hopefully they will be stable in March...I am glad there are several other meds for you to try. Stay strong and stay positive. I know it can be scary...my number got high very quickly off of meds, but they went right back down on a low dose protocol. I know this was not the news you wanted to hear, but I hope you have a great holiday and New Year and do all the things that make your body feel good and strong. Thinking of you Richard. YOU have been a staple around here, and just remember, we are here- for you. :) 18/s and warmest regards, Beth -----Original Message----- From: Susan Zimmerman To: cmlhope Sent: Tue, Dec 17, 2013 7:34 am Subject: Re: [CMLHope] Update. So sorry to hear this, Richard. My numbers were quite a bit higher than yours, and I'm still without meds. I know I need to be careful, so will get tested real soon. I thank God every day for each free day without medicine. I'm also hoping they get that vaccination perfected and out of trial stage very, very soon. Merry again, Susan -----Original Message----- From: Richard H To: cmlhope Sent: Tue, Dec 17, 2013 12:15 am Subject: [CMLHope] Update. I saw my ONC today for my results. The news was not what I wanted to hear. My test broke our test level max of .10. I wll go back in March to redo the test and we will decide which protocol we will try. He is looking at 2 that are looking like a better treatment for me because of my problems with Gleevec. Richard H. -- -- [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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. 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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. For more options, visit https://groups.google.com/groups/opt_out. ---------- 3 of 4 ---------- From: Richard H Date: Dec 17 08:19PM -0800 Url: http://groups.google.com/group/cmlhope/msg/1542061ef1ba6e22 Thanks for all the kind words. They were much needed. I have had quite a ride so far on this journey with CML. Considering that my 11 year anniversary will be the end of Feb. that would be almost 50% on Gleevec and 50% without. (WOW!!) and to remember that I was told maybe I had about 5 years. I excerisised and option to wait and start my new med until March so that I could enjoy the holidays and family, as well as not have to get out during the worse pats of the winter. Happy Holifdays All. Richaed H. On Monday, December 16, 2013 11:15:15 PM UTC-6, Richard H wrote: ---------- 4 of 4 ---------- From: [email protected] Date: Dec 17 11:53PM -0500 Url: http://groups.google.com/group/cmlhope/msg/f40bf75c0d9e9c08 You have had quite a ride so far!! And your sharing it has meant the world to a lot of us. My 4 year anniversary is in February..and I look to you and others ahead of me every day....your story has always been a ray of hope for me, and even with the bump in the road, you continue to inspire. Have a great holiday with your family. B -----Original Message----- From: Richard H To: cmlhope Sent: Tue, Dec 17, 2013 10:19 pm Subject: [CMLHope] Re: Update. Thanks for all the kind words. They were much needed. I have had quite a ride so far on this journey with CML. Considering that my 11 year anniversary will be the end of Feb. that would be almost 50% on Gleevec and 50% without. (WOW!!) and to remember that I was told maybe I had about 5 years. I excerisised and option to wait and start my new med until March so that I could enjoy the holidays and family, as well as not have to get out during the worse pats of the winter. Happy Holifdays All. Richaed H. On Monday, December 16, 2013 11:15:15 PM UTC-6, Richard H wrote: I saw my ONC today for my results. The news was not what I wanted to hear. My test broke our test level max of .10. I wll go back in March to redo the test and we will decide which protocol we will try. He is looking at 2 that are looking like a better treatment for me because of my problems with Gleevec. Richard H. -- -- [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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. For more options, visit https://groups.google.com/groups/opt_out. ============================================================================ = Topic: Holidays Url: http://groups.google.com/group/cmlhope/t/fbf99d1b27bbf5bc ============================================================================ = ---------- 1 of 1 ---------- From: [email protected] Date: Dec 17 05:28PM -0500 Url: http://groups.google.com/group/cmlhope/msg/f649f36864dd6fa6 Happy Holidays Susan and Roy! What a lovely post. Best to you both.,.Beth -----Original Message----- From: Richard H To: cmlhope Sent: Mon, Dec 16, 2013 11:18 pm Subject: Re: [CMLHope] Holidays Congratulations!!!! On Monday, December 16, 2013 11:12:19 PM UTC-6, [email protected] wrote: Dear blood brothers and sisters, Thank you for your wonderful posts that I always read and reflect on. May your days be merry and bright, and may all your Christmases be white. May the Reason for the season be part of your daily life, and your lives be a wonderful testament of His love. Happy Hannukah to all our Jewish friends as well. So many of you have shared your hearts and been so uplifting to others. This group is wonderful and ripe with seasoned warriors. Thanks Millie for always lifting up everyone in their own particular trials. Marty is always there for those who need it, too. I read many and write little. But know that I'm praying for you all as we fight the fight together. We are victors, not victims! I still continue to go on without medication due to having problems with each one I've tried. I have one more to try, and that is bosutinib. I will get tested again after the holidays to see my numbers and do research on all the good and bad about bosutinib before going on it. Anyone on bosutinib? If so, please comment about the good, bad and ugly regarding it....thanks! Merry Christmas and Happy New Year, Susan and Roy Zimmerman -----Original Message----- From: John Barrons To: CML Hope Sent: Mon, Dec 16, 2013 10:53 pm Subject: [CMLHope] Holidays I don't email very often, but I read all the emails that come to me. I have had ML now for 14 years and have gone through gleevec, sprycel, omacetaxine, and ow I am on ponatinib. It is doing good job. I want to wish everyone a merry hristmas and a new year that is full of hope, and another drug that will keep s going. John Barrons Sent from my iPad -- - CMLHope] support group of http://cmlhope.com ------------------------------------------------ You received this message because you are subscribed to the Google Groups CMLHope" group. o post to this group, send email to [email protected] o unsubscribe from this group, send email to [email protected] or more options, visit this group at http://groups.google.com/group/CMLHope -- ou received this message because you are subscribed to the Google Groups CMLHope" group. o unsubscribe from this group and stop receiving emails from it, send an email o [email protected]. or 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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. For more options, visit https://groups.google.com/groups/opt_out. ============================================================================ = Topic: Happy Holidays Url: http://groups.google.com/group/cmlhope/t/f4e833eaca9f553a ============================================================================ = ---------- 1 of 2 ---------- From: Marty Gartenberg Date: Dec 17 11:52AM -0500 Url: http://groups.google.com/group/cmlhope/msg/77fc22e6653a10d Hi Millie, Those cookies sound yummy. Sure wish I were there to share some with you. I'm sorry to hear about all of that "white stuff" your getting there. I am glad that you didn't mention that nasty four letter "S" word. Since living down in south Florida I haven't seen any of that anymore, and frankly I don't miss it at all. When I lived in PA my driveway was over 100 feet long all downhill. I had an atv with a "S" plow on it and would use it to clear off all of that "S". Sometimes we would get 5 or 6 feet of it. Our home up there is in a skii connunity and the elevation of the mountain is over 1,200 feet. There was a time that the "S" was over the stop signs in the streets up there. I wish you and everyone else a Merry Christmas and a healthy and happy New Year. 18's Marty ---------- 2 of 2 ---------- From: "C.M. Houtz" Date: Dec 17 05:01PM -0500 Url: http://groups.google.com/group/cmlhope/msg/23d2b35ddd6ff9ad Hi...If you and Shelly lived closer, I'd run some of these over to you. I have another bunch in the oven and more to go, and then tonight plan on making more dough up and I'll keep going until I can't any more. I love doing it, but this body doesn't always want to cooperate, so I do what I can. We had a little more of that fluffy white stuff today, but nothing much. We're on the edge of where they get the white stuff or ice. I hate the ice. It's the worst as far as I'm concerned. I never was in the "White Stuff" until I moved to the east coast. In the area of Calif I came from and the south pacific where I spent years.....it never did any of that. You and your family have a wonderful Holiday Season.... Hugs to all, Millie ----- Original Message ----- From: Marty Gartenberg To: [email protected] Sent: Tuesday, December 17, 2013 11:52 AM Subject: Re: [CMLHope] Happy Holidays Hi Millie, Those cookies sound yummy. Sure wish I were there to share some with you. I'm sorry to hear about all of that "white stuff" your getting there. I am glad that you didn't mention that nasty four letter "S" word. Since living down in south Florida I haven't seen any of that anymore, and frankly I don't miss it at all. When I lived in PA my driveway was over 100 feet long all downhill. I had an atv with a "S" plow on it and would use it to clear off all of that "S". Sometimes we would get 5 or 6 feet of it. Our home up there is in a skii connunity and the elevation of the mountain is over 1,200 feet. There was a time that the "S" was over the stop signs in the streets up there. I wish you and everyone else a Merry Christmas and a healthy and happy New Year. 18's Marty On Mon, Dec 16, 2013 at 8:37 PM, C.M. Houtz wrote: I also want to wish every one a very Happy Holiday Season. I have 4 batches of cookies to bake tomorrow. I made the dough today, so I'll get to that when I get up. I am taking it easy and only doing as much as I can. I wish you were all here to enjoy them with me. Marty, we're getting some of that white stuff starting tonight and into tomorrow with a couple more inches to shovel. We got at least 6 inches of it the other day, with ice, so it wasn't fun to get rid of. My Chris went out and pushed the snow blower through it. Thank God we have a big one, as anything smaller wouldn't have gone through the icy mess. It took him 3 hours to clear the driveway and the private road that goes past our house. He only does a small section of that. Enough to get us in and out of our driveway. As long as I stay inside, I can appreciate it. I don't want to get out in it. I must have some lazar surgery on both eyes this month. It's from scar tissue from the cataract surgery. They'll do one on the 23rd, and the other on the 30th, and hopefully, it will clear my vision up. It's really been messed up lately. I have to take my glasses off to work on here. Everyone have a wonderful holiday season, and I'll pray that they will find a cure for this thing soon. Hugs to all, 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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. 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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. For more options, visit https://groups.google.com/groups/opt_out. ============================================================================ = Topic: Sprycel and Musculoskeletal pain Url: http://groups.google.com/group/cmlhope/t/8c87684445baa235 ============================================================================ = ---------- 1 of 1 ---------- From: peg Date: Dec 17 07:24AM -0800 Url: http://groups.google.com/group/cmlhope/msg/9e5c95be55fb1a97 Hi Michelle, Sorry I didn't see this post until now, been down my own road for a while. You are right...Sprycel can cause pain! This was my entire problem with sprycel. They are absolutely clear that it triggered fibromyalgia in me. I also believe that it targets weakened points, such as all the areas in my body that are arthritic due to years of MS. For me the pain, which started two hours after each dose like clockwork, would last for 17-21 hours and was so severe it would put me in bed. This was the reason we had gone to a twice a week dose...so I could block two days a week out of my life to be in a bed ridden pain fog. When I added lemon juice to the mix the pain almost killed me, or at least made me wish it could. Dr. P could never really explain the pain, but it was clear that it was because of Sprycel...as evidenced same as you with short vacations. Since I am allergic to pain meds, this was the reason I finally made the switch to low dose Tasigna...but no idea yet if it is working. I hope you have more success with a lowered dose than i did...for me, even at 20mg a day, the pain was bad. However, many folks take Sprycel without this severe a problem, so perhaps your reaction will not be as severe at a lower dose as mine was. I hope you can get this worked out, pain definitely alters quality of life! Fight on! peg On Wednesday, December 4, 2013 3:00:05 PM UTC-8, Michele, Loves to Dance! wrote: ============================================================================ = Topic: Tasigna and stomach issues proton pump inhib Url: http://groups.google.com/group/cmlhope/t/ef888ce95da21cbf ============================================================================ = ---------- 1 of 1 ---------- From: peg Date: Dec 17 07:06AM -0800 Url: http://groups.google.com/group/cmlhope/msg/2d04b12cf6125ec9 Hi Jeanie, So sorry that it has taken me this long to respond to you. I have been dealing with other cancer diagnoses beside CML...like CML wouldn't be enough, HA! However, when you mentioned pain in your side, you didn't say which side. I had pain in the right side until they removed my gall bladder, it seems that while I had gall stones, they were happy gall stones until Gleevec inflamed my gall bladder. I have had pain in my left side since the beginning of my diagnosis in 2010. Turns out it is my spleen, that is slightly enlarged. It was not enlarged enough that anyone would have thought it should have caused pain, but in my case even a slight enlargement presses on nerves around the bottom of my diaphragm causing anything from mild to acute pain. Not a GI problem at all. If you pain is left side, could be you have the same problem, I know I got patted on the knee and told it was not my spleen for the longest...they like to cookie cutter all of us and treat our symptoms and dosing like one size should be the same for all. Don't know yet if the Tasi is working. My last PCR was up from .05 to .14. I had been off of Sprycel for several weeks when we got the .05 and only on Tasi for three weeks when we got the .14 this month. The next couple months should tell. I hope this low dose is going to do it, so far this is the easiest of all the TKI. Seems with the latest diagnosis, CML may be the least of my problems, but it would be nice to catch a break. I am wishing you and everyone, whatever you believe and where ever you hang your star of faith, the brightest and most blessed holiday and miracles in the coming year. Fight on, and holiday hugs! peg On Thursday, December 5, 2013 3:04:06 PM UTC-8, Jeanie wrote: -- -- [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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. 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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. 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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. For more options, visit https://groups.google.com/groups/opt_out.
