Dear Marty, Thanks for the long caring reply. :)
I am from Chennai, India and part of this group from 2012. Somehow I ended up as silent observer. I think I was wrong to be so. I was diagnosed at the age of 37. I started with Imatinib 400mg per day in 2012. In 2015, after F359V mutation, switched to Sprycel. Initially dosage was very high. That brought down platelet count drastically. So the dosage was slowly reduced to check the suitable amount. 50mg was working fine. But BCR-ABL wasn't very good. So it was decided to check with 70mg per day. Everything is fine including BCR-ABL. The only problem is breathing difficulty. For the last four days, I am taking Indian Herbal medication (Siddha) to reduce the water retention in the body. Siddha medicines are usually made of herbs and the side effects are almost NIL. I see some improvements in face, especially while getting up in the morning. The puffiness under the eyes are reducing. Somehow today I find breathing is better compared to yesterday. Hope these are all not illusions. :) I am checking for the appointment with doctor. I was wondering whether anybody faced the same problem and mailed to this group. The wonderful responses are really lovely. :) I will keep you all updated on the progress. thanks, Ragavan On Sat, Jul 28, 2018 at 10:49 PM, Marty Gartenberg <wa2...@gmail.com> wrote: > Hi Ragavan, I see that your probably new here because I have not seen > your name before. Please correct me if I am mistaken. > > First my name is Marty and I would like to take this opportunity to > welcome you here with us. You will find that we are usually an ordinary > bunch of caring and helpful people that like to learn from each other. What > I call this "club" is the club that no one wants to join or be a member of. > And so be this. However, since everyone here is an equal member and partner > then,,, Well we are stuck with each other. And believe it or not this is > really a good club to learn as well as teach yourself and at the same time > to teach others as well. We are unique group of people because we all share > something with one and other, and that is CML. > > So what can I say about us and you as well? We all share the goal of > working together and keep on living and enjoying life. And now you know > that because of so many advancements in how we are treated as well as in > the future, then things will get better and better. > > I had CML CML well over thirty years ago and let me tell you that I > really suffered not knowing if I would die or would live on for a very > short period of time. Now it is 2018 soon to be, within five months 2019. > And in spite of everything that we are still living subjects of GOD. > > Thirty years ago I had no other choice but you do now. I'm sure that you > have heard, take it one day at a time. Truer words have never been spoken. > > Now if you don't know anything or everything about CML then please read > what I am sending you. All that you have to do is sit down and read it. You > will see about some of the side effects concerning Sprycel one which will > be about your lungs, and it will say this is a "normal" thing that happens > to a lot of people. Now how does anyone try to explain what "normal" means? > I don't know but considering that we are all different from each other so > maybe normal has different meanings for different people. > > IMPORTANT FACTS ABOUT SPRYCEL Most common side effects Side effects of > SPRYCEL that are considered common in adults. > > Be sure to read all about this and as I previously stated... Take one day > at a time. > > I will leave you with something that my father once taught me a very long > time ago, and a symbol of life... He said to me that if you take the time > to learn something new every day then you will become smarter, but if you > do not want or refuse to learn something new every day then you will revert > to going back to yesterday. > > 18's. = life > > Marty > > On Sat, Jul 28, 2018 at 9:26 AM, Gopalsamy Ragavan <graga...@gmail.com> > wrote: > >> I was taking 50mg Dasatinib per day. An year back it was increased to >> 75mg. For the last few months breathing difficulty is keep increasing. I am >> not able to take full breath. It is always half breath. I will discuss with >> my doctor in the coming visit. >> >> Did anybody else face the same problem? How did you handle? Please help. >> >> thanks, >> Ragavan >> >> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> ------------------------------------------------- >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to CMLHope@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-unsubscr...@googlegroups.com >> For more options, visit this group at http://groups.google.com/group >> /CMLHope >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to cmlhope+unsubscr...@googlegroups.com. >> For more options, visit https://groups.google.com/d/optout. >> > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to CMLHope-unsubscribe@ > googlegroups.com > For more options, visit this group at http://groups.google.com/ > group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. > -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
