Don’t want to scare you but some people have had to have the water drained off lungs. Glad you are better but as I said get it checked out right away. There are other tki you can take. Good luck
My Motto: Faith and Pills With Love Jeanie 🐠free 18’s to Marty Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 15 mg New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired Dr Gedia PCD 0 CBL. ABL Taking 0.05mg 50 mcg levothyroxine July 2018 dx with thyroid disease tsh 13 T4-normal t3-normal > On Jul 31, 2018, at 9:55 AM, Marty Gartenberg <wa2...@gmail.com> wrote: > > https://www.verywellhealth.com/the-lowdown-on-unani-medicine-90032 > > https://www.tandfonline.com/doi/abs/10.3109/10428194.2014.982639 > > Hi Ragavan, I'm glad that your feeling better, and as I have already > explained to you that you are not imagining this because your mind KNOWS when > you are felling better as well as when your feeling worse. And I am sure that > you already know this. > > Now I have included a couple of links that give you some information and I > want you to thoroughly read and understand about the side effects. You have > to remember that your not so much dealing with arthritis or cataracts but > with CML for the most part. > > When I try to help someone I may sit up until early in the morning trying to > understand more about the subjects I am looking for. In your case I want to > make sure that you know the best ways to help yourself try to help yourself. > Yes I know that I am not a doctor nor are you. There are doctors out there > that sometimes also have to learn new things, and as my father told me about > learning new things every day. So just let me repeat this once again: > > When someone learns something new every day then they become smarter. When > they refuse or or not willing then they revert back to yesterday. > > Raganvan that includes you, me and all of the doctors in the world. > > 18's, > > Marty > >> On Tue, Jul 31, 2018 at 1:32 AM, Gopalsamy Ragavan <graga...@gmail.com> >> wrote: >> 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-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-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-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-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.
