Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 Sharon Just wanted to add my welcome to this group... you will find mighty nice people here. I just might add that things have a way of working out.. I guess you might call me the oldest CML patient (not age but dx time) you will meet. I was dx'ed long before they called it CML back then it was another name. but I do not really count that yet, although my records have been found they are not sure how long I had it before it was called CML, ( Granulocytic Leukemia)so you have a long road ahead of you, hopefully in the not far future they will have a cure a complete cure, but until a cure comes along here is where you will find information your doctors forgets to tell you and people who really care.. You never notice just how leaky the boat is when its full of others who are in it with you. have a great day, SkipD dx'ed 30++++ years ago. & nbsp; From: serenitywon & lt;serenitywon@... & gt; Subject: [ ] Big Thanks Date: Sunday, June 1, 2008, 3:13 PM Hello Everyone, I just wanted to thank everyone for the wonderful warm welcome I have recieved.I already feel at home..Thanks. I also wanted to wish everyone a wonderful day on this very meaningful day. Very happy to have found this great group. Thanks again SharonS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Skip, Thanks for your reply.Glad to see so many people are able to live a long life.30 years is a long time.I imagine you have this down pat now.I am hurting really bad tonight.I haven't started treatment yet.I have a bad back and need hip replacements.I take Norco and M.S.Contin daily and have for years.These meds are not touching my pain.My left abdomin area under ribs hurts feels swollen and even warm to the touch.My low back is worse than normal.I feel bloated for no apparent reason.Will this stuff get better after I start treatment? I sure hope so.. Thanks again SharonS(need to rest) In , Skip Duffie <skipd_2002@...> wrote: > > Sharon > Just wanted to add my welcome to this group... you will find mighty nice people here. > I just might add that things have a way of working out.. I guess you might call me > the oldest CML patient (not age but dx time) you will meet. > I was dx'ed long before they called it CML back then it was another name. > but I do not really count that yet, although my records have been found they are not sure > how long I had it before it was called CML, ( Granulocytic Leukemia) so you have a long road ahead of you, hopefully in the not far future they will have a cure a complete cure, but until a cure comes along here is where you will find information your doctors forgets to tell you and people who really care.. You never notice just how leaky the boat is when its full of others who are in it with you. > have a great day, > SkipD > dx'ed 30++++ years ago. > & nbsp; > > > > From: serenitywon serenitywon@... > Subject: [ ] Big Thanks > > Date: Sunday, June 1, 2008, 3:13 PM > > > > > > > Hello Everyone, > I just wanted to thank everyone for the wonderful warm welcome I > have recieved.I already feel at home..Thanks. I also wanted to wish > everyone a wonderful day on this very meaningful day. Very happy to > have found this great group. > Thanks again > SharonS > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Sharon S- Be kind to yourself Gleevec can cause some pretty severe side effets for some people and the journey is different for each of us. Ask your doc but I'm betting that pain on your left side is your swollen spleen-very common with CML. The Gleevec should help with that but be sure to talk to your doc. Someone suggested a symptom diary- that is a great idea. I wrote mine on a calendar like they used to give away free. So when I went into see my hem/onc he could see what had gone on in bewteen appointments. This group is also very helpful. I doubt there is a side effect taht someone here hasn't experienced. I woke up with red stripes on my neck that looked like someone had burned my skin off- not to worry just cosmetic. But unless your doc is a CML specialist he/she may never had seen some of the symptoms you may come up with. So hang in there we do this one day at a time. Chi --- serenitywon <serenitywon@...> wrote: > Skip, > Thanks for your reply.Glad to see so many people > are able to live > a long life.30 years is a long time.I imagine you > have this down pat > now.I am hurting really bad tonight.I haven't > started treatment yet.I > have a bad back and need hip replacements.I take > Norco and M.S.Contin > daily and have for years.These meds are not touching > my pain.My left > abdomin area under ribs hurts feels swollen and even > warm to the > touch.My low back is worse than normal.I feel > bloated for no apparent > reason.Will this stuff get better after I start > treatment? I sure > hope so.. > Thanks again > SharonS(need to rest) > > > In , Skip Duffie > <skipd_2002@...> wrote: > > > > Sharon > > Just wanted to add my welcome to this group... you > will find mighty > nice people here. > > I just might add that things have a way of working > out.. I guess > you might call me > > the oldest CML patient (not age but dx time) you > will meet. > > I was dx'ed long before they called it CML back > then it was another > name. > > but I do not really count that yet, although my > records have been > found they are not sure > > how long I had it before it was called CML, ( > Granulocytic Leukemia) > so you have a long road ahead of you, hopefully in > the not far future > they will have a cure a complete cure, but until a > cure comes along > here is where you will find information your doctors > forgets to tell > you and people who really care.. You never notice > just how leaky the > boat is when its full of others who are in it with > you. > > have a great day, > > SkipD > > dx'ed 30++++ years ago. > > & nbsp; > > > > > > > > From: serenitywon serenitywon@... > > Subject: [ ] Big Thanks > > > > Date: Sunday, June 1, 2008, 3:13 PM > > > > > > > > > > > > > > Hello Everyone, > > I just wanted to thank everyone for the wonderful > warm welcome I > > have recieved.I already feel at home..Thanks. I > also wanted to wish > > everyone a wonderful day on this very meaningful > day. Very happy to > > have found this great group. > > Thanks again > > SharonS > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Sharon, that sounds like spleen pain. Did they say how high your white cell count was? Has anyone looked at your spleen? I was dx because I my spleen ruptured, they had to remove it. But, I woke up one morning with a 'pulled muscle' feeling in my side. By 8pm I was in the emergency room SCREAMING when they laid the bed down it hurt so bad. Hopefully, this isn't where it is on you. But, if the pain persists, you may want to seek more medical attention. I didn't even know where my spleen was until they removed it. Normally, it is about the size of your fist. Mine was 3 fists big. They had to make the cut bigger to get it out. The spleen filters white blood cells. In the case of CML, there are too many white blood cells for the spleen to handle. Tammy _____ From: [mailto: ] On Behalf Of serenitywon Sent: Sunday, June 01, 2008 11:48 PM Subject: Re: [ ] Big Thanks Sharon S Skip, Thanks for your reply.Glad to see so many people are able to live a long life.30 years is a long time.I imagine you have this down pat now.I am hurting really bad tonight.I haven't started treatment yet.I have a bad back and need hip replacements.I take Norco and M.S.Contin daily and have for years.These meds are not touching my pain.My left abdomin area under ribs hurts feels swollen and even warm to the touch.My low back is worse than normal.I feel bloated for no apparent reason.Will this stuff get better after I start treatment? I sure hope so.. Thanks again SharonS(need to rest) In groups (DOT) <mailto:%40> com, Skip Duffie <skipd_2002@...> wrote: > > Sharon > Just wanted to add my welcome to this group... you will find mighty nice people here. > I just might add that things have a way of working out.. I guess you might call me > the oldest CML patient (not age but dx time) you will meet. > I was dx'ed long before they called it CML back then it was another name. > but I do not really count that yet, although my records have been found they are not sure > how long I had it before it was called CML, ( Granulocytic Leukemia) so you have a long road ahead of you, hopefully in the not far future they will have a cure a complete cure, but until a cure comes along here is where you will find information your doctors forgets to tell you and people who really care.. You never notice just how leaky the boat is when its full of others who are in it with you. > have a great day, > SkipD > dx'ed 30++++ years ago. > & nbsp; > > > > From: serenitywon serenitywon@... > Subject: [ ] Big Thanks > groups (DOT) <mailto:%40> com > Date: Sunday, June 1, 2008, 3:13 PM > > > > > > > Hello Everyone, > I just wanted to thank everyone for the wonderful warm welcome I > have recieved.I already feel at home..Thanks. I also wanted to wish > everyone a wonderful day on this very meaningful day. Very happy to > have found this great group. > Thanks again > SharonS > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Chi, Thanks for the info.I see I have a major ride ahead of me..I have started a journal to document things.Glad to know what I am feeling isn't unusual. Thanks SHaronS In , china neal <chimera46@...> wrote: > > > Sharon S- > > Be kind to yourself Gleevec can cause some pretty > severe side effets for some people and the journey is > different for each of us. Ask your doc but I'm > betting that pain on your left side is your swollen > spleen-very common with CML. The Gleevec should help > with that but be sure to talk to your doc. Someone > suggested a symptom diary- that is a great idea. I > wrote mine on a calendar like they used to give away > free. So when I went into see my hem/onc he could see > what had gone on in bewteen appointments. This group > is also very helpful. I doubt there is a side effect > taht someone here hasn't experienced. I woke up with > red stripes on my neck that looked like someone had > burned my skin off- not to worry just cosmetic. But > unless your doc is a CML specialist he/she may never > had seen some of the symptoms you may come up with. > > So hang in there we do this one day at a time. > > Chi > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Tammy, How scarey that must have been.I also believe it is my spleen.I will try to post my labs and test reults tomorrow,It is late already but I am trying to reply to everyone who replied to me.Getting tired.. Thanks again SharonS In , " Tammy Ferns " <tammy@...> wrote: > > Sharon, that sounds like spleen pain. Did they say how high your white cell > count was? Has anyone looked at your spleen? > I was dx because I my spleen ruptured, they had to remove it. But, I woke up > one morning with a 'pulled muscle' feeling in my side. By 8pm I was in the > emergency room SCREAMING when they laid the bed down it hurt so bad. > Hopefully, this isn't where it is on you. But, if the pain persists, you may > want to seek more medical attention. I didn't even know where my spleen was > until they removed it. Normally, it is about the size of your fist. Mine was > 3 fists big. They had to make the cut bigger to get it out. The spleen > filters white blood cells. In the case of CML, there are too many white > blood cells for the spleen to handle. > Tammy > > _____ > > From: [mailto: ] On Behalf Of > serenitywon > Sent: Sunday, June 01, 2008 11:48 PM > > Subject: Re: [ ] Big Thanks Sharon S > > > > Skip, > Thanks for your reply.Glad to see so many people are able to live > a long life.30 years is a long time.I imagine you have this down pat > now.I am hurting really bad tonight.I haven't started treatment yet.I > have a bad back and need hip replacements.I take Norco and M.S.Contin > daily and have for years.These meds are not touching my pain.My left > abdomin area under ribs hurts feels swollen and even warm to the > touch.My low back is worse than normal.I feel bloated for no apparent > reason.Will this stuff get better after I start treatment? I sure > hope so.. > Thanks again > SharonS(need to rest) > > In groups (DOT) <mailto:%40> com, Skip Duffie > <skipd_2002@> wrote: > > > > Sharon > > Just wanted to add my welcome to this group... you will find mighty > nice people here. > > I just might add that things have a way of working out.. I guess > you might call me > > the oldest CML patient (not age but dx time) you will meet. > > I was dx'ed long before they called it CML back then it was another > name. > > but I do not really count that yet, although my records have been > found they are not sure > > how long I had it before it was called CML, ( Granulocytic Leukemia) > so you have a long road ahead of you, hopefully in the not far future > they will have a cure a complete cure, but until a cure comes along > here is where you will find information your doctors forgets to tell > you and people who really care.. You never notice just how leaky the > boat is when its full of others who are in it with you. > > have a great day, > > SkipD > > dx'ed 30++++ years ago. > > & nbsp; > > > > > > > > From: serenitywon serenitywon@ > > Subject: [ ] Big Thanks > > groups (DOT) <mailto:%40> com > > Date: Sunday, June 1, 2008, 3:13 PM > > > > > > > > > > > > > > Hello Everyone, > > I just wanted to thank everyone for the wonderful warm welcome I > > have recieved.I already feel at home..Thanks. I also wanted to wish > > everyone a wonderful day on this very meaningful day. Very happy to > > have found this great group. > > Thanks again > > SharonS > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Sharon sorry for your discomfort, but as Zavie said the side effects from most of the CML at least all the nibs I have been on)drugs will go slowly away. or at least be managable. & nbsp; As for the other problems you have check with Lottie I am healthy except for CML and needing infusions weekly. I feel good but there are times, ahhhhh well we all get them... keep ching up positive attitude and all will work itself out, Zavie and Lottie and others have this thing down pat. bye for now SkipD Dx'ed 3++++ & gt; & gt; From: serenitywon serenitywon@ ... & gt; Subject: [ ] Big Thanks & gt; groups (DOT) com & gt; Date: Sunday, June 1, 2008, 3:13 PM & gt; & gt; & gt; & gt; & gt; & gt; & gt; Hello Everyone, & gt; I just wanted to thank everyone for the wonderful warm welcome I & gt; have recieved.I already feel at home..Thanks. I also wanted to wish & gt; everyone a wonderful day on this very meaningful day. Very happy to & gt; have found this great group. & gt; Thanks again & gt; SharonS & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; Quote Link to comment Share on other sites More sharing options...
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