Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 Hi , I was diagnosed with RA the first part of July. The Dr is still trying to pinpoint all causes of pain. I'm getting to the point I wonder how many more diagnosis I can really bare to hear. I think when you are first diagnosed you have a grieving process to go through. Same as you do if you lose someone . I felt the same as you when I first joined this group. My biggest concern was what was my quality of life going to be? How was I going to take care of my kids? Fortunately for both of us we found this group! Following everyones posts and participating every now and again has helped me out in a big way! Secondly I have a cousin ( married in to the family) that has RA. She had been diagnosed 40 years ago. She has just got to the point she can't hold anything in her hands anymore. Up to last year she was still baling hay! Her advice for me was to keep moving no matter how bad it hurts. So that's what I have been doing ever since. I don't know how old you are , but I'm 34 and I know I have atleast 40 years left in me. Keep your chin up and Hopefully you'll get on the right meds right away. Kim (Caldwell, TX) Lick <leslielick777@...> wrote: Hi , Thank you for responding so quickly. It's good to hear from members of the group who can help educate me, and help me get a handle on this. THe thought of what RA can do to your body is beyond comprehension just as the treatments that the Rheumy wants to start. THe side affects alone sound almost as bad as the RA. I don't quite know how to feel about that yet. It's all so sudden and frightening. THanks again for the support and I look forward to more discussions. Have a good evening. Les <dakirb1@...> wrote: >Hi , welcome to the group! Yes, the doctors want to dive right in with treatment, I know that's how it happened to me. My head was spinning so fast from the information overload the first few weeks after I was diagnosed in spring 2005. I hope your doc gets you on an aggresive treatment plan soon. I have joint erosion my my dominant right wrist, I've learned to use my left hand for most chores but the left wrist has active RA in it too...my doc says I probably had RA for years in my body and didn't know it-the level of inflammation was off the charts in the beginning. Keep us posted on your appts. ' > Hi everyone, > > I hope this is a pain free day for all of you. > > I want to start by saying that I have just been diagnosed with RA only > 2 days ago. It hasn't even sunk in yet. I have been given a lot of > paperwork to read and digest, but find it's a lot to absorb. > > I haven't started treatment yet because I have to have more blood work > drawn and chest x-ray and TB test, then they want to start me on the > Methotrexate protecol as long as the tests come back clean. > > The other factor for delay is that I have had AVN (avascular necrosis) > in 2 bones, (scaphoid and lunate bones) on one wrist and have to have > it fused soon, and a torn ligaments and other problems in the other > wrist that may need surgery as well. My rheumatologist tells me that I > can not start treatment until the wrist issues are resolved. So, I > may be having to rush to surgery which I had planned to put off until > mid next year after saving up for it. The doctor says that the longer > I wait the more severe my condition may become and so she is very > anxious to begin treatment ASAP. > > Is this a normal reaction? Is it really that necessary to rush to > treat? Yes, I'm in pain in many, many areas of my body, but have been > living with it for many years as well. I just don't know how to > respond or react to such scary news. > > Thanks for letting me be a part of this group and I look forward to > learning more from this group. > > All my best, > Les > --------------------------------- All-new - Fire up a more powerful email and get things done faster. --------------------------------- Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 > >THe thought of what RA can do to your body is beyond comprehension just as the treatments that the Rheumy wants to start. THe side affects alone sound almost as bad as the RA. I don't quite know how to feel about that yet. It's all so sudden and frightening. > > THanks again for the support and I look forward to more discussions. > -- I was diagnosed just under a year ago. I understand completely what you're going through. Just wanted to let you know it does indeed get better! One thing to remember is that the side effects of the medications will not necessarily affect you. In fact, most of the side effects only affect a small number of users. On the flip side of that, eventual joint damage with RA is almost a certainty. Currently I'm take 15mg MTX weekly. I also take Leucovorin (folinic acid) along with the MTX. I am lucky in that I don't suffer from any noticeable side effects of the MTX. I do get my blood work done every 6-10 weeks to make sure the MTX isn't affecting my liver. So far, my labs have been completely normal. If there ever is a problem, my doctor would stop the meds, so that my levels could come back to normal. As I posted a few days ago, I'm doing MUCH better than I was a year ago. But my doctor thinks there's still room for improvement. I'll probably be going on Enbrel in the next week or two, pending insurance approval. It sounds like you're doing the best things you can for yourself--educating yourself through groups like this and other websites and getting yourself a good doctor (rheumatologist) that wants to treat the disease agressively. Good luck and hang in there! dordale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 -Thanks dordale, I truly appreciate the advice and good wishes. It is a great help to know there are others out there and that I can gain needed knowledge from the group and other websites. I also belong to the Keinbocks disease support group since that's where my problems first began 7 years ago. I can't believe that after all this time trying to manage my pain from AVN in my wrist bones to just finding out that I probably had RA all along, but no one knew to check for it, and that it may be the primary reason why I developed the dead bones (Kienbock's) disease. Anyway, thanks again, and I'll continue to lurk around this group and search the web for additional info. All my best to you. Les > > > > >THe thought of what RA can do to your body is beyond comprehension > just as the treatments that the Rheumy wants to start. THe side > affects alone sound almost as bad as the RA. I don't quite know how > to feel about that yet. It's all so sudden and frightening. > > > > THanks again for the support and I look forward to more discussions. > > > > -- > > I was diagnosed just under a year ago. I understand completely what > you're going through. > > Just wanted to let you know it does indeed get better! > > One thing to remember is that the side effects of the medications will > not necessarily affect you. In fact, most of the side effects only > affect a small number of users. On the flip side of that, eventual > joint damage with RA is almost a certainty. > > Currently I'm take 15mg MTX weekly. I also take Leucovorin (folinic > acid) along with the MTX. I am lucky in that I don't suffer from any > noticeable side effects of the MTX. I do get my blood work done every > 6-10 weeks to make sure the MTX isn't affecting my liver. So far, my > labs have been completely normal. If there ever is a problem, my > doctor would stop the meds, so that my levels could come back to normal. > > As I posted a few days ago, I'm doing MUCH better than I was a year > ago. But my doctor thinks there's still room for improvement. I'll > probably be going on Enbrel in the next week or two, pending insurance > approval. > > It sounds like you're doing the best things you can for > yourself--educating yourself through groups like this and other > websites and getting yourself a good doctor (rheumatologist) that > wants to treat the disease agressively. > > Good luck and hang in there! > dordale > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Sorry about your diagnosis, Les, and about your wrist problems, too. Why do your docs think you have AVN in the one wrist? Yes, it's normal to want to begin treatment for RA with DMARDs right away. You don't want to give the disease a chance to gear up and get out of control. Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] newly diagnosed > Hi everyone, > > I hope this is a pain free day for all of you. > > I want to start by saying that I have just been diagnosed with RA only > 2 days ago. It hasn't even sunk in yet. I have been given a lot of > paperwork to read and digest, but find it's a lot to absorb. > > I haven't started treatment yet because I have to have more blood work > drawn and chest x-ray and TB test, then they want to start me on the > Methotrexate protecol as long as the tests come back clean. > > The other factor for delay is that I have had AVN (avascular necrosis) > in 2 bones, (scaphoid and lunate bones) on one wrist and have to have > it fused soon, and a torn ligaments and other problems in the other > wrist that may need surgery as well. My rheumatologist tells me that I > can not start treatment until the wrist issues are resolved. So, I > may be having to rush to surgery which I had planned to put off until > mid next year after saving up for it. The doctor says that the longer > I wait the more severe my condition may become and so she is very > anxious to begin treatment ASAP. > > Is this a normal reaction? Is it really that necessary to rush to > treat? Yes, I'm in pain in many, many areas of my body, but have been > living with it for many years as well. I just don't know how to > respond or react to such scary news. > > Thanks for letting me be a part of this group and I look forward to > learning more from this group. > > All my best, > Les Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 Several of my drs have told me that Plaquenil is a very safe drug. You must however have regular eye exams. I have a history of eye problems, including glaucoma, but even my opthamologist is not concerned about me taking it as long as I see him regularly. Of course you will discuss the pros and cons of each drug with your own dr. ! Patsy (63) El Mirage, AZ DX 2005 Stage 1 PBC RA/SLE/AIH ---- Parrish Blaszka <parrish_blaszka@...> wrote: Hi, I am new to the group (just joined last night). After a couple months of join pain, limited movement (primarily in my wrists & hands), swelling, I was diagnosed with RA. My RF & bloodwork came back negative as did my x-rays. However, MRIs of my wrists did show sufficient evidence to my rheumatologist that RA was likely. I am only 30 and feeling a bit of the " why me " . There is no genetic link nor other reason that I can attribute my getting RA to. Right now, I am trying to sort through the best medication option. I am likely debating between MTX or Plaquenil. My concern is that since I am only 30, I am looking at being on some medication for at least the next 50 years (I hope!). Most of my concerns are around long-term use and the risks associated. Would appreciate some insight into either medication. Good, bad, otherwise. Sorry to totally unload on you all. Just feeling a bit overwhelmed at the moment. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 > > I'm p.o.a. for a lady who the doctors just told me she has this. She > seems perfectly fine to me, she don't look, or act sick. Would anyone > mind sharing with me how life has changed for you. I know nothing > about this. > > Thanks > D > I was diagnosed with CML the first of May this year. I only problem I had was fuzzy eye sight at distance. I felt perfectly fine. I was put on Gleevec and had some side affects, but they are pretty well gone. I just listened to a teleconference about Gleevec. The doctor seemed to think a person can usually lead a normal life with the exception of blood test, bone marrow biopsy's. Anyway, I'm not a doctor, but think Gleevec is the best thing that has happened for people with CML. MB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 I think the bleeding part means if she has cuts or scrapes they might bleed easily. I take the gleevec in pill form. I think that the only way it comes. Good Luck, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Thanks for the reply, she told me her eyes had gotten blurry, I thought it was the onset of macular degeneration. The doctor said she can bleed easy. Are they talking outwardly or internally? The medicine you are on is it a pill? since she's 91, he didn't make it sound like they want to do anything harsh. thanks d > > > > I'm p.o.a. for a lady who the doctors just told me she has this. She > > seems perfectly fine to me, she don't look, or act sick. Would anyone > > mind sharing with me how life has changed for you. I know nothing > > about this. > > > > Thanks > > D > > > I was diagnosed with CML the first of May this > year. I only problem I had was fuzzy eye sight > at distance. I felt perfectly fine. I was put > on Gleevec and had some side affects, but they > are pretty well gone. I just listened to a > teleconference about Gleevec. The doctor seemed > to think a person can usually lead a normal > life with the exception of blood test, bone > marrow biopsy's. Anyway, I'm not a doctor, but > think Gleevec is the best thing that has > happened for people with CML. > MB > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Hi D, I was dx with CML in March of this year. I am on 400mg Gleevec. I went through alot emotionally with this but with time I got over it. I consider myself one of the fortunate ones. First 2 months on Gleevec I was physically ill most of the time. By that I mean, flu like symptoms and just feeling awful. Had to leave work a few times because of this and also cut down to 6 hrs per day. Had severe headaches and knee pain before I was dx'd. Now, 7 months later, I feel wonderful. Headaches and knee pain gone. I've been back to work for 8 hours a few months ago. I started working out again and live is good. Go for monthly blood draws of which have been good. Will get the results of my FISH on 10-30. Last FISH was 78% which isn't good. I know my percentage has dropped because I feel so good. I've lost alot of weight but plan to put some on in the near future. Taking the daily Gleevec is second nature to me now and my routine is back on track. So with this said I wish everyone is as fortunate as I am and wish everyone a healthy journey while dealing with CML. Pam ddlamonica <ddlamonica@...> wrote: I'm p.o.a. for a lady who the doctors just told me she has this. She seems perfectly fine to me, she don't look, or act sick. Would anyone mind sharing with me how life has changed for you. I know nothing about this. Thanks D --------------------------------- Stay in the know. Pulse on the new .com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Hi, I am glad for those that do not have or seem to have any problems with taking Gleevec. I was dxed in April of 04, and if memory serves me right I am in complete remission..well, as long as I remain taking Gleevec. I had severe side effects at first, you name it, I had it. All except for problems with my hair. I used to work as a credit card fraud investigator, but due to the side effects of the Gleevec, I lost my position. I tried to go back to work in July of 04, but it was a disaster, and I have not worked since. Shortly after that the lady I lived with for a long time, and had married five months before being dxed decided to bail, which lead me to where I am now. So far I have been lucky in the fact I had private disability insurance through my employer, and I am still considered a employee, they just removed me from the payroll and consider me a retiree. This December I will turn 40. Unfortunately for me, though the side effects are almost all managed by other medications, I still suffer from fatigue, diarrhea, muscle cramps, nausea, and bone pain. I have also developed some memory issues, though I cannot for sure say that is caused by Gleevec. I have a team of three doctors I see in Louisville and they have advised me that about half of the patients they treat do indeed live pretty normal lives, but then there are those like me that do not. I am presently waiting(to tie up loose ends) to move back from Ohio to Indiana back once again to my mothers house. After another failed attempt of having a relationship. My condition is not the total cause of my present relationship failing but it played a major factor, because the lack of income. I make half of what I did make while I could work. I am presently awaiting a judges decision about drawing SSD. The insurance company that pays my benefits has hired a third party company named Allsup to represent me. I rarely missed a day of work before being dxed, and loved my job. I keep hoping one day I can try again to go back to work(my former employer has sort of given me that option thankfully) but if things remain the way they are it is not going to happen. I am sorry to put a damper on things, and this is not a pity party for me, just stating the facts as they concern me personally. Once again I do not begrudge those that have no problems with Gleevec, I would say your lucky but none of us have that much luck since we have CML. Take care, Terry On 10/21/06, p miller <pmiller789@...> wrote: > > Hi D, > I was dx with CML in March of this year. I am on 400mg Gleevec. I went > through alot emotionally with this but with time I got over it. I consider > myself one of the fortunate ones. First 2 months on Gleevec I was physically > ill most of the time. By that I mean, flu like symptoms and just feeling > awful. Had to leave work a few times because of this and also cut down to 6 > hrs per day. Had severe headaches and knee pain before I was dx'd. Now, 7 > months later, I feel wonderful. Headaches and knee pain gone. I've been back > to work for 8 hours a few months ago. I started working out again and live > is good. Go for monthly blood draws of which have been good. Will get the > results of my FISH on 10-30. Last FISH was 78% which isn't good. I know my > percentage has dropped because I feel so good. I've lost alot of weight but > plan to put some on in the near future. Taking the daily Gleevec is second > nature to me now and my routine is back on track. So with this said I wish > everyone is as > fortunate as I am and wish everyone a healthy journey while dealing with > CML. > Pam > > ddlamonica <ddlamonica@...> > wrote: I'm p.o.a. for a lady who the > doctors just told me she has this. She > seems perfectly fine to me, she don't look, or act sick. Would anyone > mind sharing with me how life has changed for you. I know nothing > about this. > > Thanks > D > > > > > > > --------------------------------- > Stay in the know. Pulse on the new .com <http:///>. Check > it out. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 I sounds like you had the same symptoms as I did. I have been on Gleevec since the first of May. It took a little time for my body to become adjusted to the medication. I go to a cancer clinic and was told that CML is not something you pass onto your family. I was also told that the cause of it is not something you have done in the past, so please don't beat yourself up about it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Margaret, I am sorry for your diagnosis. I was dxed in April of 04. I am not a doctor but I can tell you, and I think almost everyone in the group will agree, that the drug Gleevec is the first, and most effective treatment. Having said that, I do need to tell you there is not a " cure " for CML, but with the advances in medications, you will very likely live a normal life span. The problem is that Gleevec effects those who take it in different ways. I for instance have had to stop working and am on private disability, and awaiting approval for SSD. Then there are those that have little to no side effects and live normal lives. You are at the right place for answers to almost any question you might have. There are allot of people within the group that are very very knowledgeable. One major piece of advice I can give you is find an oncologist ASAP. Also make sure you control your treatment and the oncologist has a decent bed side manner. Take care and hang in there, Terry On 10/22/06, mpraymond06 <mpraymond@...> wrote: > > > I just found out I have CML with 138,000 white blood cells, haven't > seen an oncologist yet. > > I'm wondering what's the most effective treatment? Can it be passed on > to my children/grandchildren? How does your life change with > treatment? > > The only symptoms I had was vision programs and fatigue. I also seem > to have a lot of foam-like mucus in my nose and throat every morning. > Anyone else with this? > > Thanks for responding. I'm still in the dark, trying to learn from the > web but need more information from other CML folks. > > Thanks much, > Margaret > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Hey All: I have written once in a while on the site and am a regular reader in a qwest of knowledge. I was DX in April 05 and have been on Gleevec since May of 05. As far as my counts, things look great, like everyone I have ups and downs with side effects of the drug. I need to get input on bone problems anyone is experiencing while taking this drug. In the last 4 months I have experienced stress fractures in both feet and have a strange pain in my left hip that feels like bone pain. Is Gleevec creating bone problems with extended use? I know some have written about bone density tests. Do we need a supplement for bones while on this drug? Anyone with any experience with this issue please respond. I need to know what direction to go with these problems. Thanks. Therese Stone jeffsm1@... wrote: I sounds like you had the same symptoms as I did. I have been on Gleevec since the first of May. It took a little time for my body to become adjusted to the medication. I go to a cancer clinic and was told that CML is not something you pass onto your family. I was also told that the cause of it is not something you have done in the past, so please don't beat yourself up about it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Dear Terry, Thank you so much for responding. I've been in the dark, trying to read what I can over the web but personal stories always mean the most. I will see the oncologist on the 24th and find out what the course of treatment is. It sounds like Gleevec will likely be the drug. I really fear the side effects but then the condition is worse. Was sorry to hear that you are on disability, I know that must be very difficult. I've been thinking about retireing so this may push me into it. Again, I very much appreciate your response. Please take care. Margaret Terry Dailey <terrydailey@...> wrote: Margaret, I am sorry for your diagnosis. I was dxed in April of 04. I am not a doctor but I can tell you, and I think almost everyone in the group will agree, that the drug Gleevec is the first, and most effective treatment. Having said that, I do need to tell you there is not a " cure " for CML, but with the advances in medications, you will very likely live a normal life span. The problem is that Gleevec effects those who take it in different ways. I for instance have had to stop working and am on private disability, and awaiting approval for SSD. Then there are those that have little to no side effects and live normal lives. You are at the right place for answers to almost any question you might have. There are allot of people within the group that are very very knowledgeable. One major piece of advice I can give you is find an oncologist ASAP. Also make sure you control your treatment and the oncologist has a decent bed side manner. Take care and hang in there, Terry On 10/22/06, mpraymond06 <mpraymond@...> wrote: > > > I just found out I have CML with 138,000 white blood cells, haven't > seen an oncologist yet. > > I'm wondering what's the most effective treatment? Can it be passed on > to my children/grandchildren? How does your life change with > treatment? > > The only symptoms I had was vision programs and fatigue. I also seem > to have a lot of foam-like mucus in my nose and throat every morning. > Anyone else with this? > > Thanks for responding. I'm still in the dark, trying to learn from the > web but need more information from other CML folks. > > Thanks much, > Margaret > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Hi Margaret, Don't get yourself to worked up just yet about the side effects, because honestly you may very well be lucky enough not to have allot of them, or maybe none at all. If you do, just do not freak out, because we are all here for you. I am in the process of moving but when I get back to Indiana if you need to chat just let me know. I unfortunately have allot of time on my hands, but would be glad to try and help as best as I can. I do not have allot of technical knowledge about test results, but I do have the life experience(as allot of us in the group) of living with CML and being on Gleevec. I presently take 400mg's a day. I take mine at night before bed to help manage side effects. The one thing I can tell you for sure is to *never * take it on an empty stomach, and try to drink as much water as you can. Just hang in there, Terry On 10/23/06, Margaret Peake <mpraymond@...> wrote: > > Dear Terry, > > Thank you so much for responding. I've been in the dark, trying to read > what I can over the web but personal stories always mean the most. > > I will see the oncologist on the 24th and find out what the course of > treatment is. It sounds like Gleevec will likely be the drug. I really fear > the side effects but then the condition is worse. Was sorry to hear that you > are on disability, I know that must be very difficult. I've been thinking > about retireing so this may push me into it. > > Again, I very much appreciate your response. > > Please take care. > Margaret > > Terry Dailey <terrydailey@...> wrote: > Margaret, > I am sorry for your diagnosis. I was dxed in April of 04. I am not a > doctor > but I can tell you, and I think almost everyone in the group will agree, > that the drug Gleevec is the first, and most effective treatment. Having > said that, I do need to tell you there is not a " cure " for CML, but with > the > advances in medications, you will very likely live a normal life span. The > problem is that Gleevec effects those who take it in different ways. I for > instance have had to stop working and am on private disability, and > awaiting > approval for SSD. Then there are those that have little to no side effects > and live normal lives. You are at the right place for answers to almost > any > question you might have. There are allot of people within the group that > are > very very knowledgeable. One major piece of advice I can give you is find > an > oncologist ASAP. Also make sure you control your treatment and the > oncologist has a decent bed side manner. Take care and hang in there, > > Terry > > On 10/22/06, mpraymond06 <mpraymond@...> wrote: > > > > > > I just found out I have CML with 138,000 white blood cells, haven't > > seen an oncologist yet. > > > > I'm wondering what's the most effective treatment? Can it be passed on > > to my children/grandchildren? How does your life change with > > treatment? > > > > The only symptoms I had was vision programs and fatigue. I also seem > > to have a lot of foam-like mucus in my nose and throat every morning. > > Anyone else with this? > > > > Thanks for responding. I'm still in the dark, trying to learn from the > > web but need more information from other CML folks. > > > > Thanks much, > > Margaret > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Hi Margaret, My name is Troy and I am a daily reader on this site, but not a frequent participant. It is a great site! I was lucky enough to find an incredible doctor who is very knowledgeable about CML. With the information/guidance I receive from him and this site, my journey has been much easier!! Like allot of the people here, I am a newbie to this CML stuff! I was diagnosed on July 5th of this year. I went in for a routine physical on July 3rd. My GP had the lab run a CBC and on July 5th he called me into his office to inform me my WBC was 127,000. Two hours later I met my onc. He performed the BMB and in about 5 days I had my diagnosis. The worst part for me was waiting the 5 - 7 days to find out if in fact I had leukemia and if so, what type. It was confirmed that the #9 and #22 chromosome had a make out session in my body and created an ugly little baby called the Philadelphia chromosome. All of this without my consent mind you!!! I started Gleevec on July 31st. I started with 800mg, but my body couldn't tolerate it. After coming off Gleevec twice, we dropped my dosage to 600mg and I am doing fine now! When I say, we dropped the dosage, I mean we. Dr. Doss, my onc, keeps me very involved in my treatment program. We make decisions together. At first, my side effects were pretty bad I had bone pain, nausea, diarrhea, loss of appetite, etc. I was starting to hate this little orange pill that I was told was going to save my life!!!! Margaret, I am writing all this to say, stick with it!!! Hopefully, you will be like me and many others and have few side effects from CML or Gleevec. I have been on Gleevec for 3 months now and, with the exception of moderate fatigue, I am doing great! So far, the initial fear and uncertainty was the worst part. Sure, when I sit and think about having CML it still gets a little spooky, but then I remind myself, I have CML, it doesn't have me!!!! I am a biker who plans to die of old age, sitting on his Road King and enjoying the view from the Continental Divide!! Up to this point, CML has been a huge inconvenience and major pain in the butt!!!! Hang in there Margaret!!! The best is still yet to come, CML or not!!!!! Regards, Troy Margaret Peake <mpraymond@...> wrote: Dear Terry, Thank you so much for responding. I've been in the dark, trying to read what I can over the web but personal stories always mean the most. I will see the oncologist on the 24th and find out what the course of treatment is. It sounds like Gleevec will likely be the drug. I really fear the side effects but then the condition is worse. Was sorry to hear that you are on disability, I know that must be very difficult. I've been thinking about retireing so this may push me into it. Again, I very much appreciate your response. Please take care. Margaret Terry Dailey <terrydailey@...> wrote: Margaret, I am sorry for your diagnosis. I was dxed in April of 04. I am not a doctor but I can tell you, and I think almost everyone in the group will agree, that the drug Gleevec is the first, and most effective treatment. Having said that, I do need to tell you there is not a " cure " for CML, but with the advances in medications, you will very likely live a normal life span. The problem is that Gleevec effects those who take it in different ways. I for instance have had to stop working and am on private disability, and awaiting approval for SSD. Then there are those that have little to no side effects and live normal lives. You are at the right place for answers to almost any question you might have. There are allot of people within the group that are very very knowledgeable. One major piece of advice I can give you is find an oncologist ASAP. Also make sure you control your treatment and the oncologist has a decent bed side manner. Take care and hang in there, Terry On 10/22/06, mpraymond06 <mpraymond@...> wrote: > > > I just found out I have CML with 138,000 white blood cells, haven't > seen an oncologist yet. > > I'm wondering what's the most effective treatment? Can it be passed on > to my children/grandchildren? How does your life change with > treatment? > > The only symptoms I had was vision programs and fatigue. I also seem > to have a lot of foam-like mucus in my nose and throat every morning. > Anyone else with this? > > Thanks for responding. I'm still in the dark, trying to learn from the > web but need more information from other CML folks. > > Thanks much, > Margaret > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Thanks so much. It means a lot to hear from people who are doing well in spite of CML. I'm mostly " up " about it too but have to admit I have my moments when I feel sorry for myself. It was especially nice to get your email as I'm getting ready to leave for the oncologist this morning. Margaret & Troy W <trocan722@...> wrote: Hi Margaret, My name is Troy and I am a daily reader on this site, but not a frequent participant. It is a great site! I was lucky enough to find an incredible doctor who is very knowledgeable about CML. With the information/guidance I receive from him and this site, my journey has been much easier!! Like allot of the people here, I am a newbie to this CML stuff! I was diagnosed on July 5th of this year. I went in for a routine physical on July 3rd. My GP had the lab run a CBC and on July 5th he called me into his office to inform me my WBC was 127,000. Two hours later I met my onc. He performed the BMB and in about 5 days I had my diagnosis. The worst part for me was waiting the 5 - 7 days to find out if in fact I had leukemia and if so, what type. It was confirmed that the #9 and #22 chromosome had a make out session in my body and created an ugly little baby called the Philadelphia chromosome. All of this without my consent mind you!!! I started Gleevec on July 31st. I started with 800mg, but my body couldn't tolerate it. After coming off Gleevec twice, we dropped my dosage to 600mg and I am doing fine now! When I say, we dropped the dosage, I mean we. Dr. Doss, my onc, keeps me very involved in my treatment program. We make decisions together. At first, my side effects were pretty bad I had bone pain, nausea, diarrhea, loss of appetite, etc. I was starting to hate this little orange pill that I was told was going to save my life!!!! Margaret, I am writing all this to say, stick with it!!! Hopefully, you will be like me and many others and have few side effects from CML or Gleevec. I have been on Gleevec for 3 months now and, with the exception of moderate fatigue, I am doing great! So far, the initial fear and uncertainty was the worst part. Sure, when I sit and think about having CML it still gets a little spooky, but then I remind myself, I have CML, it doesn't have me!!!! I am a biker who plans to die of old age, sitting on his Road King and enjoying the view from the Continental Divide!! Up to this point, CML has been a huge inconvenience and major pain in the butt!!!! Hang in there Margaret!!! The best is still yet to come, CML or not!!!!! Regards, Troy Margaret Peake <mpraymond@...> wrote: Dear Terry, Thank you so much for responding. I've been in the dark, trying to read what I can over the web but personal stories always mean the most. I will see the oncologist on the 24th and find out what the course of treatment is. It sounds like Gleevec will likely be the drug. I really fear the side effects but then the condition is worse. Was sorry to hear that you are on disability, I know that must be very difficult. I've been thinking about retireing so this may push me into it. Again, I very much appreciate your response. Please take care. Margaret Terry Dailey <terrydailey@...> wrote: Margaret, I am sorry for your diagnosis. I was dxed in April of 04. I am not a doctor but I can tell you, and I think almost everyone in the group will agree, that the drug Gleevec is the first, and most effective treatment. Having said that, I do need to tell you there is not a " cure " for CML, but with the advances in medications, you will very likely live a normal life span. The problem is that Gleevec effects those who take it in different ways. I for instance have had to stop working and am on private disability, and awaiting approval for SSD. Then there are those that have little to no side effects and live normal lives. You are at the right place for answers to almost any question you might have. There are allot of people within the group that are very very knowledgeable. One major piece of advice I can give you is find an oncologist ASAP. Also make sure you control your treatment and the oncologist has a decent bed side manner. Take care and hang in there, Terry On 10/22/06, mpraymond06 <mpraymond@...> wrote: > > > I just found out I have CML with 138,000 white blood cells, haven't > seen an oncologist yet. > > I'm wondering what's the most effective treatment? Can it be passed on > to my children/grandchildren? How does your life change with > treatment? > > The only symptoms I had was vision programs and fatigue. I also seem > to have a lot of foam-like mucus in my nose and throat every morning. > Anyone else with this? > > Thanks for responding. I'm still in the dark, trying to learn from the > web but need more information from other CML folks. > > Thanks much, > Margaret > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 This is Muse speaking. Who are the moderators here? I wish to ask a question about changing the setup, so that I can send my little love graphics through when I talk. PLEASE MUSE Ms. Muse " I believe that unarmed truth and unconditional love will have final word in reality. This is why right, temporarily defeated, is stronger than evil triumphant. " Luther King, Jr. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Hi Therese -- I am currently in the process of letting a foot fracture heal -- it broke somewhat spontaneously -- just while walking and a slight misstep. This is the third fracture I have had in the past two years. I have been on 400 mgs Gleevec for 3 years. I am becoming more and more convinced that the fractures are related to the Gleevec and/or the cml. Anyone have any thoughts on this?? in Minn Re: [ ] newly diagnosed Hey All: I have written once in a while on the site and am a regular reader in a qwest of knowledge. I was DX in April 05 and have been on Gleevec since May of 05. As far as my counts, things look great, like everyone I have ups and downs with side effects of the drug. I need to get input on bone problems anyone is experiencing while taking this drug. In the last 4 months I have experienced stress fractures in both feet and have a strange pain in my left hip that feels like bone pain. Is Gleevec creating bone problems with extended use? I know some have written about bone density tests. Do we need a supplement for bones while on this drug? Anyone with any experience with this issue please respond. I need to know what direction to go with these problems. Thanks. Therese Stone jeffsm1@...<mailto:jeffsm1@...> wrote: I sounds like you had the same symptoms as I did. I have been on Gleevec since the first of May. It took a little time for my body to become adjusted to the medication. I go to a cancer clinic and was told that CML is not something you pass onto your family. I was also told that the cause of it is not something you have done in the past, so please don't beat yourself up about it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Hi all and especially Margaret! I, too, read these emails all the time and never respond. My husband was diagnosed with CML on July 17th of this year. It was a VERY HARD SUMMER for us. We had our first baby on April 30th, so when our baby was 2.5 months old, my husband was diagnosed. But--not from a routine physical exam. He had brusing around the time our baby was due--needless to say he put off going to the doc since we were about to have a baby. Then, after our baby was born, the bruising disappeared. But then something worse happend...my husband (--age 33, NEVER sick before, rarely even gets a cold), had numbness on his left hand and the left side of his face. We went to the E.R. After running bloodtests, CT Scans and MRIs what they found was alarming: 's White Blood Cell count was 449,00, and he had a blood clot on his brain--the blood clot was causing him to have a stroke on the left side of his body. Yes, it was confirmed he had CML within hours, but more alarming and urgent was the blood clot. They were hoping that once he went through leukopherysis treatments and went on esclated doses of hydrea, that the blood clot would break up on it's own--it did not, in fact it grew. His pupils began to hurneate, and by the next day we had 2 top neurosurgeons frantically telling me they had to do emergency brain surgery--suddenly the word " leukemia " did not worry me at all...if only my husband ONLY had leukemia. All in all, after 3 emergency brain surgeries in 5 days, they were able to extract the blood clot. Slowly regained most feeling on the left side of his body, and then started Gleevec. He did well for about 6-7 weeks, but was on other meds as well because of all of the brain surgeries, so was experiening some side affects, but who was to say WHAT medication it was from. Last month he was in the hospital the entire month--his White Blood Cell count dropped to a mere 500...he was severly neutropenic and was susceptible to virtually ANY infection. After being OFF Gleevec for the entire month, his counts are now well within the normal range and he is back on Gleevec--starting at 100mg/day and over the next month we hope to work up to 400mg/day which is where he will stay. We love his new onc, and we also got referrals to the Cuty of Hope Cancer Research CEnter and have been lucky enough to see a team of leukemia specialists there--all of whom were involved in the trials of Gleevec. All in all I just want you to know that is doing EXCELLENT now---in such a short time. We have talked to so many people who really are leading pretty " normal " lives, but who are on Gleevec and who have CML. Yes, life will never go back to exactly the way it was, I mean, has a form of cancer. But having lost both of my parents to cancer at a very young age...wow...living with CML seems a blessing--afterall, my husband is ALIVE and able to raise our son who is now 6 months old! We, too, were very scared at first, but knowledge is power and the more we have learned through websites like this one, the " Easier " it is to handle. Good luck, Margaret, and to all of you who are battling CML--seems like more and more, with each passing day, you are WINNING the fight! Stay strong, Cervera >From: & Troy W <trocan722@...> >Reply- > >Subject: Re: [ ] newly diagnosed >Date: Mon, 23 Oct 2006 17:17:55 -0700 (PDT) > >Hi Margaret, > > My name is Troy and I am a daily reader on this site, but not a frequent >participant. It is a great site! I was lucky enough to find an incredible >doctor who is very knowledgeable about CML. With the information/guidance >I receive from him and this site, my journey has been much easier!! > > Like allot of the people here, I am a newbie to this CML stuff! I was >diagnosed on July 5th of this year. I went in for a routine physical on >July 3rd. My GP had the lab run a CBC and on July 5th he called me into >his office to inform me my WBC was 127,000. Two hours later I met my onc. >He performed the BMB and in about 5 days I had my diagnosis. The worst >part for me was waiting the 5 - 7 days to find out if in fact I had >leukemia and if so, what type. It was confirmed that the #9 and #22 >chromosome had a make out session in my body and created an ugly little >baby called the Philadelphia chromosome. All of this without my consent >mind you!!! > > I started Gleevec on July 31st. I started with 800mg, but my body >couldn't tolerate it. After coming off Gleevec twice, we dropped my dosage >to 600mg and I am doing fine now! When I say, we dropped the dosage, I >mean we. Dr. Doss, my onc, keeps me very involved in my treatment program. > We make decisions together. At first, my side effects were pretty bad I >had bone pain, nausea, diarrhea, loss of appetite, etc. I was starting to >hate this little orange pill that I was told was going to save my life!!!! > > Margaret, I am writing all this to say, stick with it!!! Hopefully, you >will be like me and many others and have few side effects from CML or >Gleevec. I have been on Gleevec for 3 months now and, with the exception >of moderate fatigue, I am doing great! So far, the initial fear and >uncertainty was the worst part. Sure, when I sit and think about having >CML it still gets a little spooky, but then I remind myself, I have CML, it >doesn't have me!!!! I am a biker who plans to die of old age, sitting on >his Road King and enjoying the view from the Continental Divide!! Up to >this point, CML has been a huge inconvenience and major pain in the >butt!!!! > > Hang in there Margaret!!! The best is still yet to come, CML or >not!!!!! > > Regards, > > Troy > >Margaret Peake <mpraymond@...> wrote: > Dear Terry, > >Thank you so much for responding. I've been in the dark, trying to read >what I can over the web but personal stories always mean the most. > >I will see the oncologist on the 24th and find out what the course of >treatment is. It sounds like Gleevec will likely be the drug. I really fear >the side effects but then the condition is worse. Was sorry to hear that >you are on disability, I know that must be very difficult. I've been >thinking about retireing so this may push me into it. > >Again, I very much appreciate your response. > >Please take care. >Margaret > >Terry Dailey <terrydailey@...> wrote: >Margaret, >I am sorry for your diagnosis. I was dxed in April of 04. I am not a doctor >but I can tell you, and I think almost everyone in the group will agree, >that the drug Gleevec is the first, and most effective treatment. Having >said that, I do need to tell you there is not a " cure " for CML, but with >the >advances in medications, you will very likely live a normal life span. The >problem is that Gleevec effects those who take it in different ways. I for >instance have had to stop working and am on private disability, and >awaiting >approval for SSD. Then there are those that have little to no side effects >and live normal lives. You are at the right place for answers to almost any >question you might have. There are allot of people within the group that >are >very very knowledgeable. One major piece of advice I can give you is find >an >oncologist ASAP. Also make sure you control your treatment and the >oncologist has a decent bed side manner. Take care and hang in there, > >Terry > >On 10/22/06, mpraymond06 <mpraymond@...> wrote: > > > > > > I just found out I have CML with 138,000 white blood cells, haven't > > seen an oncologist yet. > > > > I'm wondering what's the most effective treatment? Can it be passed on > > to my children/grandchildren? How does your life change with > > treatment? > > > > The only symptoms I had was vision programs and fatigue. I also seem > > to have a lot of foam-like mucus in my nose and throat every morning. > > Anyone else with this? > > > > Thanks for responding. I'm still in the dark, trying to learn from the > > web but need more information from other CML folks. > > > > Thanks much, > > Margaret > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Hi Have you heard about the recent research indicating that Gleevec actually may interfere with bone growth? I don't know if this means it's more likely that you will get a fracture, or that it may not heal as well, or that you're more susceptible to osteoporosis in the long run. The study, published in NEJM, was prompted by the observation that some patients taking Gleevec had low serum phosphate levels (hypophosphatemia). Phosphate plays a role in metabolism, nerve and muscle function, and the formation of bones and teeth. You may want to have your health care providers check your phosphate levels and have a chat with them about your fractures. Are you taking calcium supplements? I believe some doctors are strongly encouraging that now because of the phosphate findings, but as always, talk to your providers. G. www.upstairswindow.org www.cmlsupport.com Re: [ ] newly diagnosed Hi Therese -- I am currently in the process of letting a foot fracture heal -- it broke somewhat spontaneously -- just while walking and a slight misstep. This is the third fracture I have had in the past two years. I have been on 400 mgs Gleevec for 3 years. I am becoming more and more convinced that the fractures are related to the Gleevec and/or the cml. Anyone have any thoughts on this?? in Minn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Thanks for the story of your husband's courage. Staying strong is a priority. I am still waiting to go on Gleevec as per yesterday's visit with the oncologist. It's good to hear that life can be near normal. God's speed to you and your family. Margaret Cervera <weez_555@...> wrote: Hi all and especially Margaret! I, too, read these emails all the time and never respond. My husband was diagnosed with CML on July 17th of this year. It was a VERY HARD SUMMER for us. We had our first baby on April 30th, so when our baby was 2.5 months old, my husband was diagnosed. But--not from a routine physical exam. He had brusing around the time our baby was due--needless to say he put off going to the doc since we were about to have a baby. Then, after our baby was born, the bruising disappeared. But then something worse happend...my husband (--age 33, NEVER sick before, rarely even gets a cold), had numbness on his left hand and the left side of his face. We went to the E.R. After running bloodtests, CT Scans and MRIs what they found was alarming: 's White Blood Cell count was 449,00, and he had a blood clot on his brain--the blood clot was causing him to have a stroke on the left side of his body. Yes, it was confirmed he had CML within hours, but more alarming and urgent was the blood clot. They were hoping that once he went through leukopherysis treatments and went on esclated doses of hydrea, that the blood clot would break up on it's own--it did not, in fact it grew. His pupils began to hurneate, and by the next day we had 2 top neurosurgeons frantically telling me they had to do emergency brain surgery--suddenly the word " leukemia " did not worry me at all...if only my husband ONLY had leukemia. All in all, after 3 emergency brain surgeries in 5 days, they were able to extract the blood clot. Slowly regained most feeling on the left side of his body, and then started Gleevec. He did well for about 6-7 weeks, but was on other meds as well because of all of the brain surgeries, so was experiening some side affects, but who was to say WHAT medication it was from. Last month he was in the hospital the entire month--his White Blood Cell count dropped to a mere 500...he was severly neutropenic and was susceptible to virtually ANY infection. After being OFF Gleevec for the entire month, his counts are now well within the normal range and he is back on Gleevec--starting at 100mg/day and over the next month we hope to work up to 400mg/day which is where he will stay. We love his new onc, and we also got referrals to the Cuty of Hope Cancer Research CEnter and have been lucky enough to see a team of leukemia specialists there--all of whom were involved in the trials of Gleevec. All in all I just want you to know that is doing EXCELLENT now---in such a short time. We have talked to so many people who really are leading pretty " normal " lives, but who are on Gleevec and who have CML. Yes, life will never go back to exactly the way it was, I mean, has a form of cancer. But having lost both of my parents to cancer at a very young age...wow...living with CML seems a blessing--afterall, my husband is ALIVE and able to raise our son who is now 6 months old! We, too, were very scared at first, but knowledge is power and the more we have learned through websites like this one, the " Easier " it is to handle. Good luck, Margaret, and to all of you who are battling CML--seems like more and more, with each passing day, you are WINNING the fight! Stay strong, Cervera >From: & Troy W >Reply- > >Subject: Re: [ ] newly diagnosed >Date: Mon, 23 Oct 2006 17:17:55 -0700 (PDT) > >Hi Margaret, > > My name is Troy and I am a daily reader on this site, but not a frequent >participant. It is a great site! I was lucky enough to find an incredible >doctor who is very knowledgeable about CML. With the information/guidance >I receive from him and this site, my journey has been much easier!! > > Like allot of the people here, I am a newbie to this CML stuff! I was >diagnosed on July 5th of this year. I went in for a routine physical on >July 3rd. My GP had the lab run a CBC and on July 5th he called me into >his office to inform me my WBC was 127,000. Two hours later I met my onc. >He performed the BMB and in about 5 days I had my diagnosis. The worst >part for me was waiting the 5 - 7 days to find out if in fact I had >leukemia and if so, what type. It was confirmed that the #9 and #22 >chromosome had a make out session in my body and created an ugly little >baby called the Philadelphia chromosome. All of this without my consent >mind you!!! > > I started Gleevec on July 31st. I started with 800mg, but my body >couldn't tolerate it. After coming off Gleevec twice, we dropped my dosage >to 600mg and I am doing fine now! When I say, we dropped the dosage, I >mean we. Dr. Doss, my onc, keeps me very involved in my treatment program. > We make decisions together. At first, my side effects were pretty bad I >had bone pain, nausea, diarrhea, loss of appetite, etc. I was starting to >hate this little orange pill that I was told was going to save my life!!!! > > Margaret, I am writing all this to say, stick with it!!! Hopefully, you >will be like me and many others and have few side effects from CML or >Gleevec. I have been on Gleevec for 3 months now and, with the exception >of moderate fatigue, I am doing great! So far, the initial fear and >uncertainty was the worst part. Sure, when I sit and think about having >CML it still gets a little spooky, but then I remind myself, I have CML, it >doesn't have me!!!! I am a biker who plans to die of old age, sitting on >his Road King and enjoying the view from the Continental Divide!! Up to >this point, CML has been a huge inconvenience and major pain in the >butt!!!! > > Hang in there Margaret!!! The best is still yet to come, CML or >not!!!!! > > Regards, > > Troy > >Margaret Peake wrote: > Dear Terry, > >Thank you so much for responding. I've been in the dark, trying to read >what I can over the web but personal stories always mean the most. > >I will see the oncologist on the 24th and find out what the course of >treatment is. It sounds like Gleevec will likely be the drug. I really fear >the side effects but then the condition is worse. Was sorry to hear that >you are on disability, I know that must be very difficult. I've been >thinking about retireing so this may push me into it. > >Again, I very much appreciate your response. > >Please take care. >Margaret > >Terry Dailey wrote: >Margaret, >I am sorry for your diagnosis. I was dxed in April of 04. I am not a doctor >but I can tell you, and I think almost everyone in the group will agree, >that the drug Gleevec is the first, and most effective treatment. Having >said that, I do need to tell you there is not a " cure " for CML, but with >the >advances in medications, you will very likely live a normal life span. The >problem is that Gleevec effects those who take it in different ways. I for >instance have had to stop working and am on private disability, and >awaiting >approval for SSD. Then there are those that have little to no side effects >and live normal lives. You are at the right place for answers to almost any >question you might have. There are allot of people within the group that >are >very very knowledgeable. One major piece of advice I can give you is find >an >oncologist ASAP. Also make sure you control your treatment and the >oncologist has a decent bed side manner. Take care and hang in there, > >Terry > >On 10/22/06, mpraymond06 wrote: > > > > > > I just found out I have CML with 138,000 white blood cells, haven't > > seen an oncologist yet. > > > > I'm wondering what's the most effective treatment? Can it be passed on > > to my children/grandchildren? How does your life change with > > treatment? > > > > The only symptoms I had was vision programs and fatigue. I also seem > > to have a lot of foam-like mucus in my nose and throat every morning. > > Anyone else with this? > > > > Thanks for responding. I'm still in the dark, trying to learn from the > > web but need more information from other CML folks. > > > > Thanks much, > > Margaret > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 : Thank you for your response. I talked to the nurse yesterday at my onc's office and told her what was happening with my feet and bones. I was slightly appalled with her answer. She told my that none of the info out on Gleevec suggested that it would cause this problem. This comment I couldn't believe, I was told by her it could be related to getting older! I am 48 years old and very active. I never had any problems like this until I started on the Gleevec. I believe it is related to the Gleevec also. I don't know if we need a supplement to help with the bones or not. I now am dealing with stress fractures on both feet and trying to work full time. I was also told by the same nurse that the the fish test I did three weeks ago had changed but they had to sent it out to get it read. They did not know how to read it. I am really questioning this onc right now. If you find out any info on this please share and I will do the same. Thank you. Therese Finsand <chrisfinsand2@...> wrote: Hi Therese -- I am currently in the process of letting a foot fracture heal -- it broke somewhat spontaneously -- just while walking and a slight misstep. This is the third fracture I have had in the past two years. I have been on 400 mgs Gleevec for 3 years. I am becoming more and more convinced that the fractures are related to the Gleevec and/or the cml. Anyone have any thoughts on this?? in Minn Re: [ ] newly diagnosed Hey All: I have written once in a while on the site and am a regular reader in a qwest of knowledge. I was DX in April 05 and have been on Gleevec since May of 05. As far as my counts, things look great, like everyone I have ups and downs with side effects of the drug. I need to get input on bone problems anyone is experiencing while taking this drug. In the last 4 months I have experienced stress fractures in both feet and have a strange pain in my left hip that feels like bone pain. Is Gleevec creating bone problems with extended use? I know some have written about bone density tests. Do we need a supplement for bones while on this drug? Anyone with any experience with this issue please respond. I need to know what direction to go with these problems. Thanks. Therese Stone jeffsm1@...<mailto:jeffsm1@...> wrote: I sounds like you had the same symptoms as I did. I have been on Gleevec since the first of May. It took a little time for my body to become adjusted to the medication. I go to a cancer clinic and was told that CML is not something you pass onto your family. I was also told that the cause of it is not something you have done in the past, so please don't beat yourself up about it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 That's an incredible story, . Thank you for sharing that with us. I hope that you and your husband can just focus now on enjoying being with your baby. I remember well the joyful times surrounding having our children (my wife and I have two daughters, ages 10 and 6) and I can't imagine what it would be like to have that special time be " intruded " on by what happened to your husband. I admire your courage and strength. Warmest regards. (Dov) > > > > > > > > > I just found out I have CML with 138,000 white blood cells, haven't > > > seen an oncologist yet. > > > > > > I'm wondering what's the most effective treatment? Can it be passed on > > > to my children/grandchildren? How does your life change with > > > treatment? > > > > > > The only symptoms I had was vision programs and fatigue. I also seem > > > to have a lot of foam-like mucus in my nose and throat every morning. > > > Anyone else with this? > > > > > > Thanks for responding. I'm still in the dark, trying to learn from the > > > web but need more information from other CML folks. > > > > > > Thanks much, > > > Margaret > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Hi all, It seems obvious to me just from reading the reponses that there very well could be something to this. Especially when you have people that are active had have not had allot of bone breaks in the past. I have been lucky so far and have not had any problems with bone breaks. For a while I did return to some light martial arts training after being dxed, but that got to be too tiring so I stopped, and now I am glad I did. When I was in my teens I was the king of breaking bones..hehe. I broke both hands(one twice) I broke several fingers with one that nearly had to be amputated because of a regular doctors mistake, and I broke my foot. All this happened between 15 to 17. These were all martial arts related. I am glad I have stopped doing that sort of training. Therese, not to try an alarm you or anything, but I would get out of that Onco's as soon as you can find another one. I cannot believe they cannot read FISH test in their office??? I fired my first Onco, and am happy with the doctors I have now. The first Onco I had seemed to have the bed side manner of the crypt keeper..hehehe. He always rushed me in and out, could not answer any questions I had concerning Gleevec. He would simply look at me blankly and say " I don't know " . The topper was when I was sitting in an exam room waiting for him, and he was on the phone across the hall.(he had left the door to my exam room open) I could hear him trying to cover his rear on forgetting to visit a patient at the hospital, and also finding a way to cover a mistake he had made with another patient. Needless to say that was the last time I went to him. The only good thing I can say about that office was his nurses were some of the best I have encountered when it came to being compassionate, and when he did my first BMB he did a great job, other than that the guy had no clue..hehe. The onco I am with has their own in office lab, and aside from having a bad run in with one of the four doctors on my team(he isn't on my team any longer) I give them an A+. I have noticed though that they are getting more patients and are a bit slower, but overall I cannot complain. Take care and I hope things get better for you, Terry On 10/25/06, Therese Stone <kidme2003@...> wrote: > > : > > Thank you for your response. I talked to the nurse yesterday at my onc's > office and told her what was happening with my feet and bones. I was > slightly appalled with her answer. She told my that none of the info out on > Gleevec suggested that it would cause this problem. This comment I couldn't > believe, I was told by her it could be related to getting older! I am 48 > years old and very active. I never had any problems like this until I > started on the Gleevec. > > I believe it is related to the Gleevec also. I don't know if we need a > supplement to help with the bones or not. I now am dealing with stress > fractures on both feet and trying to work full time. I was also told by the > same nurse that the the fish test I did three weeks ago had changed but they > had to sent it out to get it read. They did not know how to read it. I am > really questioning this onc right now. > > If you find out any info on this please share and I will do the > same. Thank you. > > Therese > > Finsand <chrisfinsand2@...> wrote: > Hi Therese -- > I am currently in the process of letting a foot fracture heal -- it broke > somewhat spontaneously -- just while walking and a slight misstep. This is > the third fracture I have had in the past two years. I have been on 400 mgs > Gleevec for 3 years. I am becoming more and more convinced that the > fractures are related to the Gleevec and/or the cml. Anyone have any > thoughts on this?? > > in Minn > Re: [ ] newly diagnosed > > Hey All: > > I have written once in a while on the site and am a regular reader in a > qwest of knowledge. I was DX in April 05 and have been on Gleevec since May > of 05. > > As far as my counts, things look great, like everyone I have ups and downs > with side effects of the drug. I need to get input on bone problems anyone > is experiencing while taking this drug. In the last 4 months I have > experienced stress fractures in both feet and have a strange pain in my left > hip that feels like bone pain. Is Gleevec creating bone problems with > extended use? I know some have written about bone density tests. Do we need > a supplement for bones while on this drug? > > Anyone with any experience with this issue please respond. I need to know > what direction to go with these problems. Thanks. > > Therese Stone > > jeffsm1@...<mailto:jeffsm1@...> wrote: > I sounds like you had the same symptoms as I did. I have been on Gleevec > since the first of May. It took a little time for my body to become > adjusted to > the medication. I go to a cancer clinic and was told that CML is not > something you pass onto your family. I was also told that the cause of it > is not > something you have done in the past, so please don't beat yourself up > about it. > > > Quote Link to comment Share on other sites More sharing options...
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