Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Dear Cheryl, Is there a chance that you could enter the Ariad trial for AP24534? I have read that a study is being done in AML patients with the Ariad drug. But I could be wrong. I want you to know that I talked to two patients at MDACC Friday that are both being treated for AML. They are in a clinical trial at MDACC with a drug that begins with a " v " , it reminded me of the word " vicodin " but I know that's not what it was called. Unless I see it in writing I'm not good at remembering. I apologize. I forget where you live, is it Canada? Have your doctor look into trials while waiting for your donor. It will be worth the time. Search the Md.org website under CML and AML to see what trials they have to offer. Then maybe you can find the same trial at a different, closer, facility for you. Don't ever give up, Cheryl. There is HOPE for you. You are in my thoughts and prayers. God's Blessings, Jackie S. Ia ________________________________ From: juliek423 <jakaylor@...> Sent: Fri, January 22, 2010 10:13:26 AM Subject: [ ] Re: searching for answers Cheryl, I have never posted to this group, but read all the posts. I too failed Gleevec and had a stem cell transplant in 2006. I was diagnosed in 2005 and was doing very well on Gleevec. However, in a two week period, I went from doing great to blast crisis. I started having rib pain after hiking the Grand Canyon for a Leukemia fund raiser. I thought it was just due to the heavy pack, but no so. I am treated at City of Hope and they immediately put me on Tasigna which at the time was not FDA approved. It did bring me back to chronic phase, but the MD's were very concerned at how quick I went into blast crisis. They recommended transplant because they wouldn't have much to offer me to put me back in chronic phase if the Tasigna failed like Gleevec. I can't fib and say the transplant was easy, and I'm still dealing with issues. I had very severe GVHD, but the graft vs leukemia effect is still keeping me PCRU. Due to the GVHD, I was on steroids for quite a long time as I couldn't tolerate the other newer line of immunosuppresants. The steroids caused a lot of side effects. I developed osteoporosis and have suffered fractures. It also caused my hip to to become necrotic and I had a hip replacement. I also developed cataracts. Those are just a few of the big issues. I seem to still come up with something new monthly related to transplant. I haven't been able to go back to work, but I really had so many problems on Gleevec that working as an RN was really hard as well. I have a " new normal " life and I have survived to be a grandma of two beautiful little ones. I truly believe that if I didn't have the transplant, I would have never been around to love these wonderful babies. I know it is a big decision, but if you choose to have the transplant, we are out here to support you. > > > > > > I want to say thanks for all the responses to my previous post - not good news - I did meet with the leading CML specialist in my area on Monday - and from that meeting he did confirm that it was not a normal case of CML - it seems that although the Gleevac is working to block the Ph+ cells from sending blast into the bloodstream -CML cells in the marrow are cloning itself quite quickly and most of the wbc that are left are quite immature and not able to fight the disease...what was 14% in the marrow back in November has now grown to 50% - so my case seems to be somewhat aggressive in nature and although didn't present with a high wbc at dx - I currently have a bleed situation that they are trying to keep under control...they have not suggested any change in the course of medication as of yet..however I will be emailing Dr. Lipton today myself in hopes of getting better answers..I just want to say thank you for all the support you have given me - there truly is nothing like the kindness of strangers and you all have been wonderful... I'm not sure if I will get to post much in the coming days - they are searching the registry for a donor and I was told that it could take up to 3 months to get ready for a transplant and they are hoping to do what they can to keep the disease at bay long enough for that to be done... > > > > > > Please keep me and my family in your prayers in the hopes that I can be well enough for the transplant to take place. > > > > > > Cheryl > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Jackie.... I'm not sure about other drug therapies..I have emailed Dr. Lipton today asking that question and also for the results of the PCR test that I'm sure he did last week...he said the cbc looked good but I am constantly anxious each week as my bloodwork is done...hoping that this won't be the week that the numbers start climbing again...I have also asked for more info regarding the BMT and whether alternative drug therapies would be tried before transplant... Keeping my fingers crossed and asking for prayers, Cheryl > > > > > > > > I want to say thanks for all the responses to my previous post - not good news - I did meet with the leading CML specialist in my area on Monday - and from that meeting he did confirm that it was not a normal case of CML - it seems that although the Gleevac is working to block the Ph+ cells from sending blast into the bloodstream -CML cells in the marrow are cloning itself quite quickly and most of the wbc that are left are quite immature and not able to fight the disease...what was 14% in the marrow back in November has now grown to 50% - so my case seems to be somewhat aggressive in nature and although didn't present with a high wbc at dx - I currently have a bleed situation that they are trying to keep under control...they have not suggested any change in the course of medication as of yet..however I will be emailing Dr. Lipton today myself in hopes of getting better answers..I just want to say thank you for all the support you have given me - > there truly is nothing like the kindness of strangers and you all have been wonderful... I'm not sure if I will get to post much in the coming days - they are searching the registry for a donor and I was told that it could take up to 3 months to get ready for a transplant and they are hoping to do what they can to keep the disease at bay long enough for that to be done... > > > > > > > > Please keep me and my family in your prayers in the hopes that I can be well enough for the transplant to take place. > > > > > > > > Cheryl > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Cheryl Will keep you in my prayers Anita ________________________________ From: thornton_cheryl <thornton_cheryl@...> Sent: Sun, January 24, 2010 2:32:27 PM Subject: [ ] Re: searching for answers Jackie.... I'm not sure about other drug therapies..I have emailed Dr. Lipton today asking that question and also for the results of the PCR test that I'm sure he did last week...he said the cbc looked good but I am constantly anxious each week as my bloodwork is done...hoping that this won't be the week that the numbers start climbing again...I have also asked for more info regarding the BMT and whether alternative drug therapies would be tried before transplant.. . Keeping my fingers crossed and asking for prayers, Cheryl > > > > > > > > I want to say thanks for all the responses to my previous post - not good news - I did meet with the leading CML specialist in my area on Monday - and from that meeting he did confirm that it was not a normal case of CML - it seems that although the Gleevac is working to block the Ph+ cells from sending blast into the bloodstream -CML cells in the marrow are cloning itself quite quickly and most of the wbc that are left are quite immature and not able to fight the disease...what was 14% in the marrow back in November has now grown to 50% - so my case seems to be somewhat aggressive in nature and although didn't present with a high wbc at dx - I currently have a bleed situation that they are trying to keep under control...they have not suggested any change in the course of medication as of yet..however I will be emailing Dr. Lipton today myself in hopes of getting better answers..I just want to say thank you for all the support you have given me - > there truly is nothing like the kindness of strangers and you all have been wonderful... I'm not sure if I will get to post much in the coming days - they are searching the registry for a donor and I was told that it could take up to 3 months to get ready for a transplant and they are hoping to do what they can to keep the disease at bay long enough for that to be done... > > > > > > > > Please keep me and my family in your prayers in the hopes that I can be well enough for the transplant to take place. > > > > > > > > Cheryl > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Cheyrl, You are right on target. Explore every avenue before BMT, but make sure everything is in place for a transplant. I was behind the eight ball on this because I waited so long to get advice from a real CML specialist. My local onc kept telling me we would do the transplant stuff only if it became necessary. Of course, neither he nor I knew that I would progress to blast in a matter of weeks. When I got to MD Cancer Center, they told me I should have been at least typed with my siblings early on. Don't let up on the gas pedal, you are pursuing a prudent course of action. Warmest regards, Don > > > > > > > > Cheryl, I'm sorry that the news isn't better but I must say how impressed I am that Dr. Lipton was able to do a bone marrow biopsy on Monday and get the results so quickly. I've literally waited months for results in the past. > > > > > > > > All the best, > > > > Tracey > > > > > > > > --- In groups (DOT) com, " thornton_cheryl " <thornton_cheryl@ > wrote: > > > > > > > > > > I want to say thanks for all the responses to my previous post - not good news - I did meet with the leading CML specialist in my area on Monday - and from that meeting he did confirm that it was not a normal case of CML - it seems that although the Gleevac is working to block the Ph+ cells from sending blast into the bloodstream -CML cells in the marrow are cloning itself quite quickly and most of the wbc that are left are quite immature and not able to fight the disease...what was 14% in the marrow back in November has now grown to 50% - so my case seems to be somewhat aggressive in nature and although didn't present with a high wbc at dx - I currently have a bleed situation that they are trying to keep under control...they have not suggested any change in the course of medication as of yet..however I will be emailing Dr. Lipton today myself in hopes of getting better answers..I just want to say thank you for all the support you have given me - > > there truly is nothing like the kindness of strangers and you all have been wonderful... I'm not sure if I will get to post much in the coming days - they are searching the registry for a donor and I was told that it could take up to 3 months to get ready for a transplant and they are hoping to do what they can to keep the disease at bay long enough for that to be done... > > > > > > > > > > Please keep me and my family in your prayers in the hopes that I can be well enough for the transplant to take place. > > > > > > > > > > Cheryl > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 I got a response to my email to Dr. Lipton this afternoon...he said he would only try other drug therapies if the Gleevac failed to get me into a remission before transplant...he said drug response at my level would not be durable - for now Gleevac is still working so stay on same protocol...he did PCR but does not have the results yet. He said BMT needs to be done as soon as I have a complete response... It gets scarier by the minute - I know I need to trust in God to take care of the future and accept what I have been dealt but it is so hard... > > > > > > > > > > Cheryl, I'm sorry that the news isn't better but I must say how impressed I am that Dr. Lipton was able to do a bone marrow biopsy on Monday and get the results so quickly. I've literally waited months for results in the past. > > > > > > > > > > All the best, > > > > > Tracey > > > > > > > > > > --- In groups (DOT) com, " thornton_cheryl " <thornton_cheryl@ > wrote: > > > > > > > > > > > > I want to say thanks for all the responses to my previous post - not good news - I did meet with the leading CML specialist in my area on Monday - and from that meeting he did confirm that it was not a normal case of CML - it seems that although the Gleevac is working to block the Ph+ cells from sending blast into the bloodstream -CML cells in the marrow are cloning itself quite quickly and most of the wbc that are left are quite immature and not able to fight the disease...what was 14% in the marrow back in November has now grown to 50% - so my case seems to be somewhat aggressive in nature and although didn't present with a high wbc at dx - I currently have a bleed situation that they are trying to keep under control...they have not suggested any change in the course of medication as of yet..however I will be emailing Dr. Lipton today myself in hopes of getting better answers..I just want to say thank you for all the support you have given me - > > > there truly is nothing like the kindness of strangers and you all have been wonderful... I'm not sure if I will get to post much in the coming days - they are searching the registry for a donor and I was told that it could take up to 3 months to get ready for a transplant and they are hoping to do what they can to keep the disease at bay long enough for that to be done... > > > > > > > > > > > > Please keep me and my family in your prayers in the hopes that I can be well enough for the transplant to take place. > > > > > > > > > > > > Cheryl > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Cheryl, Would it be a good idea to email all the information you have about your CML and a questions on to DR Druker as well. Maybe he could shed a different light on this for you. Anita ________________________________ From: thornton_cheryl <thornton_cheryl@...> Sent: Sun, January 24, 2010 4:28:59 PM Subject: [ ] Re: searching for answers I got a response to my email to Dr. Lipton this afternoon... he said he would only try other drug therapies if the Gleevac failed to get me into a remission before transplant.. .he said drug response at my level would not be durable - for now Gleevac is still working so stay on same protocol...he did PCR but does not have the results yet. He said BMT needs to be done as soon as I have a complete response... It gets scarier by the minute - I know I need to trust in God to take care of the future and accept what I have been dealt but it is so hard... > > > > > > > > > > Cheryl, I'm sorry that the news isn't better but I must say how impressed I am that Dr. Lipton was able to do a bone marrow biopsy on Monday and get the results so quickly. I've literally waited months for results in the past. > > > > > > > > > > All the best, > > > > > Tracey > > > > > > > > > > --- In groups (DOT) com, " thornton_cheryl " <thornton_cheryl@ > wrote: > > > > > > > > > > > > I want to say thanks for all the responses to my previous post - not good news - I did meet with the leading CML specialist in my area on Monday - and from that meeting he did confirm that it was not a normal case of CML - it seems that although the Gleevac is working to block the Ph+ cells from sending blast into the bloodstream -CML cells in the marrow are cloning itself quite quickly and most of the wbc that are left are quite immature and not able to fight the disease...what was 14% in the marrow back in November has now grown to 50% - so my case seems to be somewhat aggressive in nature and although didn't present with a high wbc at dx - I currently have a bleed situation that they are trying to keep under control...they have not suggested any change in the course of medication as of yet..however I will be emailing Dr. Lipton today myself in hopes of getting better answers..I just want to say thank you for all the support you have given me - > > > there truly is nothing like the kindness of strangers and you all have been wonderful... I'm not sure if I will get to post much in the coming days - they are searching the registry for a donor and I was told that it could take up to 3 months to get ready for a transplant and they are hoping to do what they can to keep the disease at bay long enough for that to be done... > > > > > > > > > > > > Please keep me and my family in your prayers in the hopes that I can be well enough for the transplant to take place. > > > > > > > > > > > > Cheryl > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 Hi Cheryl: Your getting so many responses to your posts. I had sent a message to you regarding what I went through. I would proceed to get checked for the match in case a BMT is necessary. I just think I would try the Gleevec for awhile. Dr. Lipton said its working and to stick with the same protocol. I would just have everything lined up in case you needed the BMT. I told you all that in my post. I went all over the place getting ready to get the BMT, because it was the only option offered to me at that time. I still think because I did my own research and phone calls and appointments is how I got into the clinical trial when I did. Once the Gleevec started working for me. I put that BMT on the back burner, and that is where it is sitting since Oct. of 2000 Just do not rush into anything until you have no choice. Trust God for Everything and you will never go wrong. A. > > > > > > > > Dear Cheryl, > > > > Is there a chance that you could enter the Ariad trial for AP24534? I have read that a study is being done in AML patients with the Ariad drug. But I could be wrong. I want you to know that I talked to two patients at MDACC Friday that are both being treated for AML. They are in a clinical trial at MDACC with a drug that begins with a " v " , it reminded me of the word " vicodin " but I know that's not what it was called. Unless I see it in writing I'm not good at remembering. I apologize. I forget where you live, is it Canada? Have your doctor look into trials while waiting for your donor. It will be worth the time. Search the Md.org website under CML and AML to see what trials they have to offer. Then maybe you can find the same trial at a different, closer, facility for you. > > > > Don't ever give up, Cheryl. There is HOPE for you. You are in my thoughts and prayers. > > > > God's Blessings, > > > > Jackie S. > > > > Ia > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > From: juliek423 <jakaylor@> > > > > > > > > Sent: Fri, January 22, 2010 10:13:26 AM > > > > Subject: [ ] Re: searching for answers > > > > > > > > > > > > Cheryl, > > > > > > > > I have never posted to this group, but read all the posts. I too failed Gleevec and had a stem cell transplant in 2006. I was diagnosed in 2005 and was doing very well on Gleevec. However, in a two week period, I went from doing great to blast crisis. I started having rib pain after hiking the Grand Canyon for a Leukemia fund raiser. I thought it was just due to the heavy pack, but no so. I am treated at City of Hope and they immediately put me on Tasigna which at the time was not FDA approved. It did bring me back to chronic phase, but the MD's were very concerned at how quick I went into blast crisis. They recommended transplant because they wouldn't have much to offer me to put me back in chronic phase if the Tasigna failed like Gleevec. > > > > > > > > I can't fib and say the transplant was easy, and I'm still dealing with issues. I had very severe GVHD, but the graft vs leukemia effect is still keeping me PCRU. Due to the GVHD, I was on steroids for quite a long time as I couldn't tolerate the other newer line of immunosuppresants. The steroids caused a lot of side effects. I developed osteoporosis and have suffered fractures. It also caused my hip to to become necrotic and I had a hip replacement. I also developed cataracts. Those are just a few of the big issues. I seem to still come up with something new monthly related to transplant. > > > > > > > > I haven't been able to go back to work, but I really had so many problems on Gleevec that working as an RN was really hard as well. I have a " new normal " life and I have survived to be a grandma of two beautiful little ones. I truly believe that if I didn't have the transplant, I would have never been around to love these wonderful babies. > > > > > > > > I know it is a big decision, but if you choose to have the transplant, we are out here to support you. > > > > > > > > > > > > > > > > --- In groups (DOT) com, " thornton_cheryl " <thornton_cheryl@ ...> wrote: > > > > > > > > > > > > > > > Tracey...Dr. Lipton did not do a bone marrow test - what he did was review the slides and samples from original BMB - and what he found was that the marrow was in blast crisis - not 14% as my local doctor told me - as for not presently with a high WBC, he said that presenting in blast crisis is much like AML but with the Ph+ gene...he said that the Gleevac seems to be working so far but it doesn't traditionally keep the disease at bay for very long - because there are a number of immature white cells that can't keep infections at bay for long...so that is why they are searching for a donor now as opposed to later... sorry if my previous info was confusing - having a hard time grasping this... > > > > > > > > > > > > > > > --- In groups (DOT) com, " traceyincanada " <traceyincanada@ > wrote: > > > > > > > > > > > > Cheryl, I'm sorry that the news isn't better but I must say how impressed I am that Dr. Lipton was able to do a bone marrow biopsy on Monday and get the results so quickly. I've literally waited months for results in the past. > > > > > > > > > > > > All the best, > > > > > > Tracey > > > > > > > > > > > > --- In groups (DOT) com, " thornton_cheryl " <thornton_cheryl@ > wrote: > > > > > > > > > > > > > > I want to say thanks for all the responses to my previous post - not good news - I did meet with the leading CML specialist in my area on Monday - and from that meeting he did confirm that it was not a normal case of CML - it seems that although the Gleevac is working to block the Ph+ cells from sending blast into the bloodstream -CML cells in the marrow are cloning itself quite quickly and most of the wbc that are left are quite immature and not able to fight the disease...what was 14% in the marrow back in November has now grown to 50% - so my case seems to be somewhat aggressive in nature and although didn't present with a high wbc at dx - I currently have a bleed situation that they are trying to keep under control...they have not suggested any change in the course of medication as of yet..however I will be emailing Dr. Lipton today myself in hopes of getting better answers..I just want to say thank you for all the support you have given me - > > > > there truly is nothing like the kindness of strangers and you all have been wonderful... I'm not sure if I will get to post much in the coming days - they are searching the registry for a donor and I was told that it could take up to 3 months to get ready for a transplant and they are hoping to do what they can to keep the disease at bay long enough for that to be done... > > > > > > > > > > > > > > Please keep me and my family in your prayers in the hopes that I can be well enough for the transplant to take place. > > > > > > > > > > > > > > Cheryl > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 I agree with Anita. Check everything out anywhere you can. From: anita <awristen1@...> Subject: Re: [ ] Re: searching for answers Date: Sunday, January 24, 2010, 5:50 PM  Cheryl, Would it be a good idea to email all the information you have about your CML and a questions on to DR Druker as well. Maybe he could shed a different light on this for you. Anita ____________ _________ _________ __ From: thornton_cheryl <thornton_cheryl@ .ca> groups (DOT) com Sent: Sun, January 24, 2010 4:28:59 PM Subject: [ ] Re: searching for answers I got a response to my email to Dr. Lipton this afternoon... he said he would only try other drug therapies if the Gleevac failed to get me into a remission before transplant.. .he said drug response at my level would not be durable - for now Gleevac is still working so stay on same protocol...he did PCR but does not have the results yet. He said BMT needs to be done as soon as I have a complete response... It gets scarier by the minute - I know I need to trust in God to take care of the future and accept what I have been dealt but it is so hard... > > > > > > > > > > Cheryl, I'm sorry that the news isn't better but I must say how impressed I am that Dr. Lipton was able to do a bone marrow biopsy on Monday and get the results so quickly. I've literally waited months for results in the past. > > > > > > > > > > All the best, > > > > > Tracey > > > > > > > > > > --- In groups (DOT) com, " thornton_cheryl " <thornton_cheryl@ > wrote: > > > > > > > > > > > > I want to say thanks for all the responses to my previous post - not good news - I did meet with the leading CML specialist in my area on Monday - and from that meeting he did confirm that it was not a normal case of CML - it seems that although the Gleevac is working to block the Ph+ cells from sending blast into the bloodstream -CML cells in the marrow are cloning itself quite quickly and most of the wbc that are left are quite immature and not able to fight the disease...what was 14% in the marrow back in November has now grown to 50% - so my case seems to be somewhat aggressive in nature and although didn't present with a high wbc at dx - I currently have a bleed situation that they are trying to keep under control...they have not suggested any change in the course of medication as of yet..however I will be emailing Dr. Lipton today myself in hopes of getting better answers..I just want to say thank you for all the support you have given me - > > > there truly is nothing like the kindness of strangers and you all have been wonderful... I'm not sure if I will get to post much in the coming days - they are searching the registry for a donor and I was told that it could take up to 3 months to get ready for a transplant and they are hoping to do what they can to keep the disease at bay long enough for that to be done... > > > > > > > > > > > > Please keep me and my family in your prayers in the hopes that I can be well enough for the transplant to take place. > > > > > > > > > > > > Cheryl > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 Are there other questions that I should be asking...I'm assuming he has told me everything I need to know...I asked how there could be so much in the marrow and not showing up in the bloodstream at CBC and he told me that that is the abnormality..he said at my level I should have been very sick and not functioning normally...he checked my spleen and said that he didn't think it had been compromised...I have had many of the so-called symptoms for many years..night sweats and joint pain, ringing in the ears but just figured that was part of getting older and nothing ever showed on bloodwork...I guess either it has come on very fast or my system has been fighting it well on it's own up to this point...whatever the case he doesn't feel that I will get a very durable response to drug therapy and that is why he feels I should choose the BMT as soon as remission is achieved. Cheryl > > > > > > > > > > > > > > > > I want to say thanks for all the responses to my previous post - not good news - I did meet with the leading CML specialist in my area on Monday - and from that meeting he did confirm that it was not a normal case of CML - it seems that although the Gleevac is working to block the Ph+ cells from sending blast into the bloodstream -CML cells in the marrow are cloning itself quite quickly and most of the wbc that are left are quite immature and not able to fight the disease...what was 14% in the marrow back in November has now grown to 50% - so my case seems to be somewhat aggressive in nature and although didn't present with a high wbc at dx - I currently have a bleed situation that they are trying to keep under control...they have not suggested any change in the course of medication as of yet..however I will be emailing Dr. Lipton today myself in hopes of getting better answers..I just want to say thank you for all the support you have given me - > > > > > there truly is nothing like the kindness of strangers and you all have been wonderful... I'm not sure if I will get to post much in the coming days - they are searching the registry for a donor and I was told that it could take up to 3 months to get ready for a transplant and they are hoping to do what they can to keep the disease at bay long enough for that to be done... > > > > > > > > > > > > > > > > Please keep me and my family in your prayers in the hopes that I can be well enough for the transplant to take place. > > > > > > > > > > > > > > > > Cheryl > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 Hi Cheryl: I can only tell you that my CML showed up in my blood work very early. I used to get my regular routine blood work, and maybe because I worked right there in the medical office I was very diligent about being tested all the time. My first WBC was only 11, and next week they did another test to see why I had a elevation. Even though it was so minimal, they repeated it and got a 18. No time was wasted to check me out. I am very grateful for the fast action of the Oncologist I worked for. I also had my spleen checked out and nothing was wrong. The thing with me also was that I had joint pain for years, and just always thought it was my Arthritis acting up. Just keep having Faith that you can be treated with medication. It may not be Gleevec, and there might be something else that will work. You have so many people here for you, and so many prayers going out for you. Lets pray the Gleevec does its job for you. From: thornton_cheryl <thornton_cheryl@...> Subject: [ ] Re: searching for answers Date: Sunday, January 24, 2010, 8:01 PM  Are there other questions that I should be asking...I'm assuming he has told me everything I need to know...I asked how there could be so much in the marrow and not showing up in the bloodstream at CBC and he told me that that is the abnormality. .he said at my level I should have been very sick and not functioning normally...he checked my spleen and said that he didn't think it had been compromised. ..I have had many of the so-called symptoms for many years..night sweats and joint pain, ringing in the ears but just figured that was part of getting older and nothing ever showed on bloodwork... I guess either it has come on very fast or my system has been fighting it well on it's own up to this point...whatever the case he doesn't feel that I will get a very durable response to drug therapy and that is why he feels I should choose the BMT as soon as remission is achieved. Cheryl > > > > > > > > > > > > > > > > I want to say thanks for all the responses to my previous post - not good news - I did meet with the leading CML specialist in my area on Monday - and from that meeting he did confirm that it was not a normal case of CML - it seems that although the Gleevac is working to block the Ph+ cells from sending blast into the bloodstream -CML cells in the marrow are cloning itself quite quickly and most of the wbc that are left are quite immature and not able to fight the disease...what was 14% in the marrow back in November has now grown to 50% - so my case seems to be somewhat aggressive in nature and although didn't present with a high wbc at dx - I currently have a bleed situation that they are trying to keep under control...they have not suggested any change in the course of medication as of yet..however I will be emailing Dr. Lipton today myself in hopes of getting better answers..I just want to say thank you for all the support you have given me - > > > > > there truly is nothing like the kindness of strangers and you all have been wonderful... I'm not sure if I will get to post much in the coming days - they are searching the registry for a donor and I was told that it could take up to 3 months to get ready for a transplant and they are hoping to do what they can to keep the disease at bay long enough for that to be done... > > > > > > > > > > > > > > > > Please keep me and my family in your prayers in the hopes that I can be well enough for the transplant to take place. > > > > > > > > > > > > > > > > Cheryl > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 ...That was the case with me as well...my wbc was 15 so my family doctor retested and it went up the next week to 20 - it was 29 the following week at the time of my BMB - but they tell me my marrow had almost 50% blasts...but they can't explain why...I had joint pain for awhile too and was told that it was probably because I was carrying extra weight on my frame... Cheryl > > > > > > > > > > > > > > > > > > I want to say thanks for all the responses to my previous post - not good news - I did meet with the leading CML specialist in my area on Monday - and from that meeting he did confirm that it was not a normal case of CML - it seems that although the Gleevac is working to block the Ph+ cells from sending blast into the bloodstream -CML cells in the marrow are cloning itself quite quickly and most of the wbc that are left are quite immature and not able to fight the disease...what was 14% in the marrow back in November has now grown to 50% - so my case seems to be somewhat aggressive in nature and although didn't present with a high wbc at dx - I currently have a bleed situation that they are trying to keep under control...they have not suggested any change in the course of medication as of yet..however I will be emailing Dr. Lipton today myself in hopes of getting better answers..I just want to say thank you for all the support you have > given me - > > > > > > there truly is nothing like the kindness of strangers and you all have been wonderful... I'm not sure if I will get to post much in the coming days - they are searching the registry for a donor and I was told that it could take up to 3 months to get ready for a transplant and they are hoping to do what they can to keep the disease at bay long enough for that to be done... > > > > > > > > > > > > > > > > > > Please keep me and my family in your prayers in the hopes that I can be well enough for the transplant to take place. > > > > > > > > > > > > > > > > > > Cheryl > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 Hi Cheryl, Dr. Lipton knows what he's talking about. The research has shown that people who go into blast crisis don't typically maintain their responses to drugs but if transplanted while in chronic phase, do much better. There's no point in doing a transplant while in blast crisis because that has shown not to work as well. The best case scenario is to get you back in chronic phase, preferably CCR then do the transplant. I know many of our members are encouraging you to try all sorts of new drugs before doing a BMT but your situation is not the typical situation as you've found out. You're in good hands with Dr. Lipton and can be confident that he will advise you well. Tracey > > > > > > > > > > > > > > > > > > I want to say thanks for all the responses to my previous post - not good news - I did meet with the leading CML specialist in my area on Monday - and from that meeting he did confirm that it was not a normal case of CML - it seems that although the Gleevac is working to block the Ph+ cells from sending blast into the bloodstream -CML cells in the marrow are cloning itself quite quickly and most of the wbc that are left are quite immature and not able to fight the disease...what was 14% in the marrow back in November has now grown to 50% - so my case seems to be somewhat aggressive in nature and although didn't present with a high wbc at dx - I currently have a bleed situation that they are trying to keep under control...they have not suggested any change in the course of medication as of yet..however I will be emailing Dr. Lipton today myself in hopes of getting better answers..I just want to say thank you for all the support you have given me - > > > > > > there truly is nothing like the kindness of strangers and you all have been wonderful... I'm not sure if I will get to post much in the coming days - they are searching the registry for a donor and I was told that it could take up to 3 months to get ready for a transplant and they are hoping to do what they can to keep the disease at bay long enough for that to be done... > > > > > > > > > > > > > > > > > > Please keep me and my family in your prayers in the hopes that I can be well enough for the transplant to take place. > > > > > > > > > > > > > > > > > > Cheryl > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 Tracey, I was in blast crisis when diagnosed and am doing well on Sprycel since last July I have no active CML cells showing. Anita ________________________________ From: traceyincanada <traceyincanada@...> Sent: Sun, January 24, 2010 8:28:34 PM Subject: [ ] Re: searching for answers Hi Cheryl, Dr. Lipton knows what he's talking about. The research has shown that people who go into blast crisis don't typically maintain their responses to drugs but if transplanted while in chronic phase, do much better. There's no point in doing a transplant while in blast crisis because that has shown not to work as well. The best case scenario is to get you back in chronic phase, preferably CCR then do the transplant. I know many of our members are encouraging you to try all sorts of new drugs before doing a BMT but your situation is not the typical situation as you've found out. You're in good hands with Dr. Lipton and can be confident that he will advise you well. Tracey > > > > > > > > > > > > > > > > > > I want to say thanks for all the responses to my previous post - not good news - I did meet with the leading CML specialist in my area on Monday - and from that meeting he did confirm that it was not a normal case of CML - it seems that although the Gleevac is working to block the Ph+ cells from sending blast into the bloodstream -CML cells in the marrow are cloning itself quite quickly and most of the wbc that are left are quite immature and not able to fight the disease...what was 14% in the marrow back in November has now grown to 50% - so my case seems to be somewhat aggressive in nature and although didn't present with a high wbc at dx - I currently have a bleed situation that they are trying to keep under control...they have not suggested any change in the course of medication as of yet..however I will be emailing Dr. Lipton today myself in hopes of getting better answers..I just want to say thank you for all the support you have given me - > > > > > > there truly is nothing like the kindness of strangers and you all have been wonderful... I'm not sure if I will get to post much in the coming days - they are searching the registry for a donor and I was told that it could take up to 3 months to get ready for a transplant and they are hoping to do what they can to keep the disease at bay long enough for that to be done... > > > > > > > > > > > > > > > > > > Please keep me and my family in your prayers in the hopes that I can be well enough for the transplant to take place. > > > > > > > > > > > > > > > > > > Cheryl > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 Hi Anita, That is fantastic but unfortunately it isn't the norm with blast crisis patients. Anyone who has read my posts over the years will know that I'm not a big fan of transplants. Having said that, I do believe that there is a place for them for a few, select group of patients. With Cheryl having such an unusual case I can understand why Dr. Lipton is suggesting it. Tracey > > > > > > > > > > > > > > > > > > > > I want to say thanks for all the responses to my previous post - not good news - I did meet with the leading CML specialist in my area on Monday - and from that meeting he did confirm that it was not a normal case of CML - it seems that although the Gleevac is working to block the Ph+ cells from sending blast into the bloodstream -CML cells in the marrow are cloning itself quite quickly and most of the wbc that are left are quite immature and not able to fight the disease...what was 14% in the marrow back in November has now grown to 50% - so my case seems to be somewhat aggressive in nature and although didn't present with a high wbc at dx - I currently have a bleed situation that they are trying to keep under control...they have not suggested any change in the course of medication as of yet..however I will be emailing Dr. Lipton today myself in hopes of getting better answers..I just want to say thank you for all the support you have > given me - > > > > > > > there truly is nothing like the kindness of strangers and you all have been wonderful... I'm not sure if I will get to post much in the coming days - they are searching the registry for a donor and I was told that it could take up to 3 months to get ready for a transplant and they are hoping to do what they can to keep the disease at bay long enough for that to be done... > > > > > > > > > > > > > > > > > > > > Please keep me and my family in your prayers in the hopes that I can be well enough for the transplant to take place. > > > > > > > > > > > > > > > > > > > > Cheryl > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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