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living with cml and side effects of chemo


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#1 Wendyjo

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Posted 29 April 2011 - 11:33 AM

living with cml and side effects of chemo



#2 jsmiddiebrush

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Posted 29 April 2011 - 01:00 PM

Hi WendyJo - it looks like maybe you are new to the Board.  Are you (or someone who is close to you) newly diagnosed with CML? This is a great place to get support and answers.

If you are new - you need to know right away that for most people, CML is a treatable illness with a very good long term prognosis!  Don't read ANYTHING that is more than two years old, it will scare you silly and needlessly so.

We can try to help, or at least share our experiences, but it would be helpful if you would post a little more detail about your situation, such as when you were diagnosed, have you started treatment yet and if so which drug, and any questions/concerns you have about CML and the side effects of the medications. 

We're here to help. Take care,

Joanne



#3 Guest_billronm_*

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Posted 01 May 2011 - 12:02 AM

Hi WendyJo,

I,m so glad you found our site. We all hate to say welcome because we wish you didn,t have to be here. But since you are you are among the most wonderful friends you,ll ever have and any questions you have about cml you will find the answers to on this site.

As Joanne said it would be nice if you would give us a little more info about yourself.or if you,re asking for somebody else.Like she said cml is a blood cancer not a death sentence! It can be controlled and you will live a long life, old age will get you first. Cml is not treated with chemotherapy where your hair falls out and all the other things we hear about it.Cml is treated by taking one of 3 different kinds of pills which are called tki,s there are many others on this site that can explain it better than me. Joanne is much better at this then me, I just wanted to let you know there is a whole group of us ready to help you through this. Some people have had cml 15 years, I have had it almost 4 years. There are side effects to all the 3 tki,s they affect everybody differently. But these side effects go away sometimes in 2 weeks or 4 months it depends on the person. Some people get no side effects at all. The bottom line is you can live with them you're life is not over and you will be fine. I was on Gleevac for over 3 years but I had a lot of trouble with diahreah oh hell I can,t spell that we call it the sharts. This isn't a morbid site we all become friends and sometimes we just joke around about our side effects but you will never find a more knowledgeable or sincere group anywhere.I just found this site last nov. I felt so scared and alone until I came here everybody understands because they are going through the same thing you are. As far as feelings and other people not understanding especially because some days we just don't feel good and nobody understands because we look so healthy.

I'm a nightowl but soon all the others on this site will welcome you meanwhile don't panic because you will be fine.

                                                           Sincerely Billie            I sure hope you have a sense of humor we don't let anyone stay glum!



#4 Susan61

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Posted 01 May 2011 - 06:35 PM

Hi WendyJo:  It looks like your trying to get onto our discussion board here, and that your new to all of this.  Just type in some information for us, so we know how to answer you.  Let us know if it is you or a family member who was diagnosed with CML.  In the beginning its so confusing, and your not sure what to even ask.  Just start out asking us anything that is on your mind.  Anything at all.  Somebody always has a answer for you to help you out.

I hope we hear from you real soon.

Susan



#5 Guest_billronm_*

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Posted 02 May 2011 - 01:10 PM

Hi Wendyjo,

We would really like to hear from you. I'm a real computer dummy,so when I found this site I couldn't get back to it. If you get this message and are trying to get back to us,just type this e-mail address  community.lls.org/community/bloodcancer/livingwith/cml when you get to that site just look For Trey's Blog or anything with his name on it and just click on this site I just gave you.It will bring you right to our discussion board.That is what you want cml discussion board. That will bring up a list of questions that we have discussed. At the right side of your screen it will say start a discussion just click on that and then type anything you want to know or just introduce yourself like you did before and we will all help you get started on this site. I hope that helps, we'll be looking forward to hearing from you. Trey is the man who put this site up and there isn't anything he can't answer about cml. There are a lot of other people that can answer your questions also.  Good Luck Billie






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