Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 hi susan thankx for the welcome for a long time i was causious about joining a group, but it is important to connect with others going through the same experience, for a long time i have been in ignoring the cml but it has forced me to wake up ; thankx guys for the welcome advice i had no idea that there were specialists in cml now to find one in my area. once again thankx for the welcome do well and stay well. aliza rochester n.y. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 Alisa- I have been diagnosed for just under 3 years now. I was 33 years old at the time with 3 little children. I am doing much better. I still have good days and bad days but the good days far outweigh the bad now. I have shortness of breath too. I also have chest pain and find it most annoying as I become dehydrated. So, when you are having these pains, see if not increasing your fluid intake helps. Also, when my hemoglobin drops under 11, I notice more chest discomfort as well as increased shortness of breath. So, I can usually go in and have blood drawn as see why I am having increased symptoms. If I can relate it, then I am okay with it. Weird but, then I don't have to worry that it is something else. It usually last a day or two and then goes away until the next time. I would check with your insurance and make sure in fact that your counts have to be a certain level before procrit. My experience has been if you are symptomatic and your doctor feels it would benefit you, he can normally make a call or send in a letter of explanation and get it approved. This normally just involves a phone call. Use this site to verbalize your questions, comments, questions and fears. It is a great therapeutic avenue especially on the bad days. We have all walked in your shoes at on time or another and it is important that we are all here to support one another. Cancer is scary and we all need the support no matter where we are in our CML juorney. Hugs and Hope- 35 CML 5/13/05 Gleevec 800mg until 8/07 Spyrcel 100 mg since 9/07 Wife and mother of 3 (12,9,7) **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 Hi , the chest pains and shortness of breath is what goes along with pleural effusion, have you checked this out with your doctor? I put mine off too long, due to a dr. in emergency telling me it wa pneumonia, and had to have a thoracentesis done - not pleasant. I had to have my sprycel dose stopped, then decreased, then stopped again, and am now back on 40 mg a day. Please be sure you do not have pleural effusion, good luck. Bobby vegasrnjen@... wrote: Alisa- I have been diagnosed for just under 3 years now. I was 33 years old at the time with 3 little children. I am doing much better. I still have good days and bad days but the good days far outweigh the bad now. I have shortness of breath too. I also have chest pain and find it most annoying as I become dehydrated. So, when you are having these pains, see if not increasing your fluid intake helps. Also, when my hemoglobin drops under 11, I notice more chest discomfort as well as increased shortness of breath. So, I can usually go in and have blood drawn as see why I am having increased symptoms. If I can relate it, then I am okay with it. Weird but, then I don't have to worry that it is something else. It usually last a day or two and then goes away until the next time. I would check with your insurance and make sure in fact that your counts have to be a certain level before procrit. My experience has been if you are symptomatic and your doctor feels it would benefit you, he can normally make a call or send in a letter of explanation and get it approved. This normally just involves a phone call. Use this site to verbalize your questions, comments, questions and fears. It is a great therapeutic avenue especially on the bad days. We have all walked in your shoes at on time or another and it is important that we are all here to support one another. Cancer is scary and we all need the support no matter where we are in our CML juorney. Hugs and Hope- 35 CML 5/13/05 Gleevec 800mg until 8/07 Spyrcel 100 mg since 9/07 Wife and mother of 3 (12,9,7) **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 hi jenifer you sound like me always evaluating whats going on. In the begining i felt that i was producing symtoms and many of my friends made me feel as if I was, but in time i learned to ignore thier comments 'cause when there are symtoms they must be addressed. glad i found the site aliza **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Dear , Good Morning, I also feel same problem, when my RBC (Red Blood Cells) goes down, you take diets which increase the RBC i.e. Apple, Paneer etc. Since last 2 months I started a Antioxident called BIO C ( A product of NUTROLITE CO.) My counts are very good, my RBC increased to 5. With my best wishes J P Tiwari vegasrnjen@... wrote: Alisa- I have been diagnosed for just under 3 years now. I was 33 years old at the time with 3 little children. I am doing much better. I still have good days and bad days but the good days far outweigh the bad now. I have shortness of breath too. I also have chest pain and find it most annoying as I become dehydrated. So, when you are having these pains, see if not increasing your fluid intake helps. Also, when my hemoglobin drops under 11, I notice more chest discomfort as well as increased shortness of breath. So, I can usually go in and have blood drawn as see why I am having increased symptoms. If I can relate it, then I am okay with it. Weird but, then I don't have to worry that it is something else. It usually last a day or two and then goes away until the next time. I would check with your insurance and make sure in fact that your counts have to be a certain level before procrit. My experience has been if you are symptomatic and your doctor feels it would benefit you, he can normally make a call or send in a letter of explanation and get it approved. This normally just involves a phone call. Use this site to verbalize your questions, comments, questions and fears. It is a great therapeutic avenue especially on the bad days. We have all walked in your shoes at on time or another and it is important that we are all here to support one another. Cancer is scary and we all need the support no matter where we are in our CML juorney. Hugs and Hope- 35 CML 5/13/05 Gleevec 800mg until 8/07 Spyrcel 100 mg since 9/07 Wife and mother of 3 (12,9,7) **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 gee thkx lotttie all your advice is wellworth it lov always is of help " aliza " means gay/happy in hebrew lov aliza **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 hi i would rather say that Aliza in hebrew is more cheerful, but that is symantic only. are you Israeli? best regards giora Re: [ ] Aliza gee thkx lotttie all your advice is wellworth it lov always is of help " aliza " means gay/happy in hebrew lov aliza **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 my mom lived in eretz Israel when she was a young girl before it became a state, and imigrated to latin america I think it had to do with my father , and thats where i and my sister noemi and brother ruben were born. then we all came to america.been here since. you are Israeli ?yes?my mom's maiden name was medinat aliza **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 hi i am Israeli born and i live here since i was born 56 years ago giora Re: [ ] Aliza my mom lived in eretz Israel when she was a young girl before it became a state, and imigrated to latin america I think it had to do with my father , and thats where i and my sister noemi and brother ruben were born. then we all came to america.been here since. you are Israeli ?yes?my mom's maiden name was medinat aliza **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 I don't think you guys should feel sorry about complaining or feeling bad. These bad days come and go and I think as far as myself, I usually feel the worse as far as down on myself and " why me " , when I am truly fatigued, overtired or not feel good (pain). Everything is worse when you don't feel good to begin with. We have cancer, we have earned our right to bitch or complain or simply lay around if we need to. You owe no one an explanation. Until someone has truly walked in your shoes, they can't possibly understand what you are going through. I have a VERY supportive family including my hubby, yet I don't think anyone will totally understand it all. They just give me support, let me rest when I need to and are a shoulder to lean on when I need it. We will all have up days and down days. Hopefully your up days will out do your down days but you'll get through it. Brighter days are coming. When you are having a bad days just remember tomorrow will be better, its something to look forward to! Sincerely- Hugs and Hope- 35 CML 5/13/05 Gleevec 800mg until 8/07 Spyrcel 100 mg since 9/07 Wife and mother of 3 (12,9,7) # 907 in Zavie's Zero Club **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 I completely understand. We are here for you! Almost 3 years into this, I still have those feelings. Hugs and Hope- 35 CML 5/13/05 Gleevec 800mg until 8/07 Spyrcel 100 mg since 9/07 Wife and mother of 3 (12,9,7) # 907 in Zavie's Zero Club **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 hi jenifer thats what keeps me alive expecting that tommorow or the day after will be a better day. but there's nothing more anoying than the " don't dwell on it so much or keep a positive attitude " when you fell frightened and without energy to breath and you're right no one can relate unless ( god forbid) they're in your shoes: you have no idea how much this group helps I can't thank everyone enough aliza > > I don't think you guys should feel sorry about complaining or feeling bad. > These bad days come and go and I think as far as myself, I usually feel the > worse as far as down on myself and " why me " , when I am truly fatigued, overtired > or not feel good (pain). Everything is worse when you don't feel good to > begin with. > > We have cancer, we have earned our right to bitch or complain or simply lay > around if we need to. You owe no one an explanation. Until someone has > truly walked in your shoes, they can't possibly understand what you are going > through. I have a VERY supportive family including my hubby, yet I don't > think anyone will totally understand it all. They just give me support, let me > rest when I need to and are a shoulder to lean on when I need it. > > We will all have up days and down days. Hopefully your up days will out do > your down days but you'll get through it. Brighter days are coming. When > you are having a bad days just remember tomorrow will be better, its something > to look forward to! > Sincerely- > > Hugs and Hope- > > 35 > CML 5/13/05 > Gleevec 800mg until 8/07 > Spyrcel 100 mg since 9/07 > Wife and mother of 3 (12,9,7) > # 907 in Zavie's Zero Club > > > > > **************It's Tax Time! Get tips, forms, and advice on AOL Money & > Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 -hi donna to be frightened i think is natural I mean it's cancer , but people are actually alive for years in this group so it gives me more stregth to fight actually I think I fell more anger at cml itself than sorry for myself I'm just a big cycy when it comes to sickness . ive delt with ulcerative colittis for years and other problems that weaken you.I can also get very tragic and I trust my dr. sometimes too much without realizing that they're human beeing I am begining to accept that and taking resposibility for the bug(cml) stay strong as you can. you have good friend here lov aliza -- In , donnaberry99 <no_reply@...> wrote: > > > Aliza, > I know what you mean about being frightened. Gosh, I freak out so > easily and go for days at times down in the dumps (my friends and > family, except Hubby don't know it though) I wonder if that all goes > away with time too, I hope so as I am naturally a really happy > person. If I let myself I can be quite melodramatic about it, not > wanting to listen to music I liked before DX etc. I feel guilty > feeling sorry for myself as I have minimal side effects compared to > some people who post here. > Regards, > Donna > Up and over LOL > > > > > > > I understand the remission but like when I was on Gleevec 800mg, > I > > was MMR > > > and CCR yet my platelets would be down in the 50-90's.(Low). > > > > > > Not sure if that is the reason but thought I might bring it up. > > Maybe you > > > have a hemorrhoid either internal or external that just got > > irritated? I > > > would watch it and if it is constant or anything more then a > smear, > > I would > > > notify the doctor. My feelings are its better to be safe then > > sorry. > > > > > > Keep us posted. > > > > > > > > > Hugs and Hope- > > > > > > 35 > > > CML 5/13/05 > > > Gleevec 800mg until 8/07 > > > Spyrcel 100 mg since 9/07 > > > Wife and mother of 3 (12,9,7) > > > # 907 in Zavie's Zero Club > > > > > > > > > > > > **************It's Tax Time! Get tips, forms, and advice on AOL > > Money & > > > Finance. (http://money.aol.com/tax? NCID=aolprf00030000000001) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 Hi Donna - what is TMJ? With the arthritis, I had a myriad of aches and pains in all my joints which disappeared after 2 weeks of Glivec treatment. The bone pain I was alluding to is some of the listers have said they had terrible pain in their legs and couldn't walk due to the severe pain they were in. Anti inflammatories and even morphine can't treat it, as you need a blood supply to the area to get the drugs to work. Regards, from Downunder _____ From: [mailto: ] On Behalf Of donnaberry99 Sent: Sunday, 23 March 2008 3:18 AM Subject: [ ] Re: Aliza I too was diagnosed with arthritis in the knees as I was in horrible pain, that was 18mos before dx. Now no knee pain at all. Another thing I had a strange bout with was TMJ and I have ironically heard others mention this too. Sometimes I wonder if this is all related especially when you try and determine how long you had CML for. Regards, Donna > > hi group > I knew something was wrong years ago when i felt low gradw fevers and bone > pains that were dianosed as inflamatory artheritis and as such i lived on xtra > strenghth tylanol. once dx in 2007 3weeks after taking gleevec, all gone, i > get ocational bone pain but nothing like b4. > aliza yaffa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2008 Report Share Posted April 2, 2008 Dear Aliza, Are you o.k. I didn't get any emails from the group for a few days, so I was wondering if you were o.k, haven't heard a peep from you. I know you live alone and wonder if you have anyone you can call on if you need help? Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
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