Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 Welcome Melody! Deidre Newbie - Introduction > > Hi!! > > I have recently joined the group and thought I should introduce myself!! > > My name is Melody Harnack, I am 39 (almost 40, yikes!!).......I have been > married > for 20 years this May to Mike. We have 5 children ( 17, Shaun 16, > Blaine 14, Colin 11 and 8). We live in an old schoolhouse (which we > are in the middle of renovating.......yuck!!) on 2 acres of land in > Southwestern Ontairo, Canada. I have fairly recently resigned my job as an > Employment Facilitator in order to study for a career change.......so I am > studying like mad and hope to be licenced in Alternative Dispute Resolution > (Mediation) by the end of the year...........my long term goal is Advocacy. > I also co-ordinate the Breakfast for Learning program at two local schools. > In my spare time (LOL) I am helping my Mom and Sister to start up a home > based business making soaps, toiletries etc...........and I am having lots > of fun!!! > > I am amazed at the vast amount of knowledge that people are willing to > share. I don't know much, but perhaps I might be able to contribute a thing > or two!!! > > Melody > > > > > > > ________________________________________________________________________ > ________________________________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2005 Report Share Posted October 16, 2005 At 05:31 AM 10/16/05 +0000, you wrote: >My concerns right now are survival, of course first and foremost but >also, we do not feel that our family is complete and had planned to >have 3 children. I know that right now I should not get pregnant >but I was wondering what you know regarding possible future >fertility of patients with CML. I know right now my first concern >should be my health and it is but I need to know and prepare myself >if I will not be able to have more children. >Thank you, > Hi , Welcome to the list.....sorry of course that you gained membership. It is not recommended that you get pregnant on Gleevec.....and Gleevec is not a cure, but a drug you stay on long term. Gleevec has not affected your fertility....but could cause harm to a developing baby. (The same is not true for men taking Gleevec, it is OK for them to father a child). I know there are some young women out there who have taken this approach. First, see how you do on Gleevec (also called IM, which is easier)....if you get to a good level of remission....like molecular.....then go off the drug to have a baby. Maybe some of these women will respond on this list....if not there are some other lists that I know they post on (try CML Discussion at www.newcmldrug.com). The other way of treating CML is with a bone marrow transplant....but that does take your fertility away with the high dose chemotherapy. It will be most important, as you say, to first treat your CML and see how you respond......then look into your pregnancy options. You will find that folks on this and the other list I mentioned will share their information and experience with you. Best wishes to you, C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2005 Report Share Posted October 16, 2005 Hi , Welcome to the group. I want to first tell you that CML is no longer the death sentence that it once was. Thanks to Gleevec and other new drugs, life expectancy has greatly improved. We even have one member here who's had it for 27 years! You have responded fantastically already in just one week so this is very promising. I hope you are getting blood tests every week at this point because at the rate your counts are dropping, I suspect that you'll have to stop the Hydrea very soon or your counts may crash too low. I understand all the emotions that go along with this diagnosis especially at a young age. I was diagnosed almost 4 years ago at the age of 31. Thankfully, I had already had 2 children when I was diagnosed but the thought of not being alive to raise them was (and still is) very heartbreaking. It's the unknown that plays on the mind and once we start with the " what if's... " , well, it's a very slippery slope. As said, there have been a handfull of women who have gone off of Gleevec in order to have a baby and have had sucessful pregnancies so this may be an option for you down the road. With every year that passes, more and more information is learned which will be to your benefit. Since you're new, you may benefit from reading our CML FAQ's in the file section of this website (on the left side you'll find " files " in the list of clickable words). There is also a file called " CML Glossary " which will explain some of the abreviations that we use regularly. Don't hesitate to ask any questions you may have. Someone will likely have an answer for you. In the mean time, take care and enjoy every day. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Thank you so much , I realy appreciate you taking the time to respond. With any luck it'll all work out, right? Anyway, thanks for the hope...that's what I needed. :} > >My concerns right now are survival, of course first and foremost but > >also, we do not feel that our family is complete and had planned to > >have 3 children. I know that right now I should not get pregnant > >but I was wondering what you know regarding possible future > >fertility of patients with CML. I know right now my first concern > >should be my health and it is but I need to know and prepare myself > >if I will not be able to have more children. > >Thank you, > > > > Hi , > Welcome to the list.....sorry of course that you gained membership. > It is not recommended that you get pregnant on Gleevec.....and Gleevec > is not a cure, but a drug you stay on long term. Gleevec has not affected > your fertility....but could cause harm to a developing baby. (The same is > not true for men taking Gleevec, it is OK for them to father a child). > > I know there are some young women out there who have taken this approach. > First, see how you do on Gleevec (also called IM, which is easier)....if > you get > to a good level of remission....like molecular.....then go off the drug to > have a > baby. Maybe some of these women will respond on this list....if not there are > some other lists that I know they post on (try CML Discussion at > www.newcmldrug.com). > > The other way of treating CML is with a bone marrow transplant....but that > does > take your fertility away with the high dose chemotherapy. It will be most > important, > as you say, to first treat your CML and see how you respond......then look > into > your pregnancy options. > > You will find that folks on this and the other list I mentioned will share > their > information and experience with you. > Best wishes to you, > C. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Thank you so much Tracey, It's realy nice to hear so much hope. I am being monitored weekly right now so that my levels don't get too low. What should I watch out for when my levels get close? Thank you, :} > > Hi , > > Welcome to the group. I want to first tell you that CML is no > longer the death sentence that it once was. Thanks to Gleevec and > other new drugs, life expectancy has greatly improved. We even have > one member here who's had it for 27 years! > > You have responded fantastically already in just one week so this is > very promising. I hope you are getting blood tests every week at > this point because at the rate your counts are dropping, I suspect > that you'll have to stop the Hydrea very soon or your counts may > crash too low. > > I understand all the emotions that go along with this diagnosis > especially at a young age. I was diagnosed almost 4 years ago at > the age of 31. Thankfully, I had already had 2 children when I was > diagnosed but the thought of not being alive to raise them was (and > still is) very heartbreaking. It's the unknown that plays on the > mind and once we start with the " what if's... " , well, it's a very > slippery slope. > > As said, there have been a handfull of women who have gone off > of Gleevec in order to have a baby and have had sucessful > pregnancies so this may be an option for you down the road. With > every year that passes, more and more information is learned which > will be to your benefit. > > Since you're new, you may benefit from reading our CML FAQ's in the > file section of this website (on the left side you'll find " files " > in the list of clickable words). There is also a file called " CML > Glossary " which will explain some of the abreviations that we use > regularly. > > Don't hesitate to ask any questions you may have. Someone will > likely have an answer for you. In the mean time, take care and > enjoy every day. > > Tracey > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Hi -- welcome to the group that nobody wanted to join. You've received great advice from others who are far more knowledgeable than I am -- I just want to say hi. I was diagnosed in 2003 & remember how frightened & confused I was. Hang in there, it'll get easier. Maybe not always easy, but easier. hugs & hope, Kathy > > Hey all, > I am only reading posts on the group site right now. I am pretty > busy trying to keep awake and educated and keeping up with real life > but I wanted to post since I just joined. > I am a 29 year old woman. I was diagnosed 1 1/2 weeks ago with > CML. My WBC was 250,000 at diagnosis and 183,000 one week later. > My spleen was 18 inches below my lungs at diagnosis and 12 inches > one week later. I had 2 blasts at diagnosis and none one week > later. I am on Hydroxyurea 500 mg 2 caps 2xdaily, gleevec 400 mg 1 > cap 1xdaily and Allopurinol, 300 mb 1 cap 1xdaily. I have one son, > 20 months old and a loving husband. > My concerns right now are survival, of course first and foremost but > also, we do not feel that our family is complete and had planned to > have 3 children. I know that right now I should not get pregnant > but I was wondering what you know regarding possible future > fertility of patients with CML. I know right now my first concern > should be my health and it is but I need to know and prepare myself > if I will not be able to have more children. > Thank you, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Thank you Kathy! View our family's newest photos at webshots The time goes by so fast.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Hi , The important counts to look at are your ANC (absolute neutrophil count) and your platelet count. Ideally your ANC should not go below 1000 and your platelets shouldn't go below 50. Take care, Tracey > > Thank you so much Tracey, > It's realy nice to hear so much hope. I am being monitored weekly > right now so that my levels don't get too low. What should I watch > out for when my levels get close? > Thank you, > :} > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 , Hi and welcome to the group. I don't post real often, but read through all of the posts. I am 32 and was dx in May of 2005. I have 2 children and am on Gleevec like most of the rest of us. I am so thankful for this drug and hopefully you will be able to stop the other treatments soon and only take Gleevec. I had and still have the same concerns as you as far as pregnancy goes. We have two beautiful healthy little girls, but I have always wanted 3 children. I am still not sure what we will do. I often feel the decision has been made for me, but there is still hope and there are other women out there who have cml and go on to have healthy babies. For me, I need to give the meds time to work and then re-evaluate the situation later. Sounds like your counts are coming down good and that is good they are monitoring you on a weekly basis. Take care, > > Hey all, > I am only reading posts on the group site right now. I am pretty > busy trying to keep awake and educated and keeping up with real life > but I wanted to post since I just joined. > I am a 29 year old woman. I was diagnosed 1 1/2 weeks ago with > CML. My WBC was 250,000 at diagnosis and 183,000 one week later. > My spleen was 18 inches below my lungs at diagnosis and 12 inches > one week later. I had 2 blasts at diagnosis and none one week > later. I am on Hydroxyurea 500 mg 2 caps 2xdaily, gleevec 400 mg 1 > cap 1xdaily and Allopurinol, 300 mb 1 cap 1xdaily. I have one son, > 20 months old and a loving husband. > My concerns right now are survival, of course first and foremost but > also, we do not feel that our family is complete and had planned to > have 3 children. I know that right now I should not get pregnant > but I was wondering what you know regarding possible future > fertility of patients with CML. I know right now my first concern > should be my health and it is but I need to know and prepare myself > if I will not be able to have more children. > Thank you, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2005 Report Share Posted October 18, 2005 Hi Kathy. Thanks for saying hi! View our family's newest photos at webshots The time goes by so fast.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2005 Report Share Posted October 18, 2005 Thanks Tracey, I don't have those numbers right now but I'll get them on Thursday! :} View our family's newest photos at webshots The time goes by so fast.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2005 Report Share Posted October 18, 2005 Thanks so much ! It's good to know I'm not the only one worrying about that. Hopefully there will be a solution for us sometime! :} View our family's newest photos at webshots The time goes by so fast.. Quote Link to comment Share on other sites More sharing options...
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