Re: [CMLHope] Breathing Difficulties [Dasatinib]
Hi Marty, Sorry I didn't update with the developments. I consulted the oncologist and it was diagnosed as fluid in lungs as a side effect. After three years of sprycel, it is the first time faced with this. Probably it has been accumulating over the period. Sprycel is stopped temporarily. It is already a week+ time. I have a consultation on Tuesday. Based on the results, I guess, doctor will recommend to restart the medicine. I will keep posted. regards, Ragavan On Tue, Jul 31, 2018 at 7:25 PM Marty Gartenberg 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 > 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 >> 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 ge
Re: [CMLHope] Breathing Difficulties [Dasatinib]
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 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 > 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
Re: [CMLHope] Re: Breathing Difficulties [Dasatinib]
Thanks for all the caring responses. I will take all your advice and act on it quickly. // Why did they increase your dosage? // Dosage was increased based on BCR-ABL results. Increase of dosage is from 50mg to 70mg. I don't have any other problems apart from this half-breathing. Counts are fine. BCR-ABL fine. Rest all fine. Thanks Perk :) On Mon, Jul 30, 2018 at 11:54 PM, perk wrote: > I had the same problem with Sprycel. I went into the hospital thinking > they were going to drain the fluid around my lungs. They took me off of > Sprycel and on Tasigna. They also gave me Lasix to assist in removing the > fluid. They cautioned that I may experience the same problem with Tasigna. > I started taking it every other day instead of everyday and so far, my > numbers have been good. I feel a little tightness in my chest sometimes but > I seem to do better by not taking it everyday. Why did they increase your > dosage? I think they prescribe too much sometimes and you should listen to > your own body. This may not be good advice but it has worked for me. > > Good luck > > Perk in Texas > > On Saturday, July 28, 2018 at 8:26:52 AM UTC-5, Ragavan 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-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.
[CMLHope] Breathing Difficulties [Dasatinib]
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.
Re: [CMLHope] A bit of good news today
Thatz lovely to hear. God bless you with all health and happiness :) Ragavan On Thu, May 28, 2015 at 12:34 AM, sherri swanson < swanson.sherri...@gmail.com> wrote: > Hi Everyone! > > In the mist of all the bad news I've been getting lately, I got some good > news this afternoon. My Onc called me to tell me that my BCR/ABL was > undetectable. So with that that good news still ringing in my ears, I went > for walk. AS I was walking it started to rain. I just didn't care. I > continued my walk like it was a sunny day and 85 degrees. I really needed > that good news. > > L'chaim > > Sherri > > -- > -- > [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.
Re: [CMLHope] Platelets
Please take care. Because low platelet counts need more self care. My counts also went low. But my oncologist stops the medicine once it reaches low and then allows to recover to restart the medicine. I didnt know organic papaya leaf tea is available readily made. I collect Papaya leaves from friends and make the powder at home. I live in Chennai, which is a metro city in south of India. Hope your platelet counts improve soon. regards, Ragavan On Sun, May 24, 2015 at 7:37 AM, ANGELYN ESDERS wrote: > Thank you very much, Ragavan, for your suggestion. > I immediately ordered some organic papaya leaf tea and I am awaiting its > arrival. > I can't wait to try it as my platelets are still so very low in number. > Minimum level is 150-450.I have 9. I have red spots all over me and > big, purple "bruises" from anywhere I am touched. > I have traveled in India 3 times. In which part of India do you live? > Angie > > ------ > *From:* Gopalsamy Ragavan > *To:* cmlhope@googlegroups.com > *Sent:* Tuesday, May 19, 2015 8:15 AM > *Subject:* Re: [CMLHope] Platelets > > I am in India. I have given the method below. > > You can prepare it very easily. Or you can drink two spoons of papaya leaf > extract in the morning. > > Procedure: > Dry papaya leaves completely. > Add cumin seeds and little black pepper and powder the dried papaya leaves. > Keep it safe in a container. > > Add water to spoon full of papaya leaf powder and boil it. > Filter it and drink warm. > > regards, > Ragavan > > > > > > > On Sun, May 17, 2015 at 6:33 PM, ANGELYN ESDERS wrote: > > Thank you very much for your reply. > I will try to find papaya leaf tea. > I am in Canada...where are you? > Angie > > -- > *From:* Gopalsamy Ragavan > *To:* cmlhope@googlegroups.com > *Sent:* Sunday, May 17, 2015 7:08 AM > *Subject:* Re: [CMLHope] Platelets > > I have problems with platelet count. Diagnosed in 2012 Started with > Gleevec. Now with Sprycel. With Sprycel, platelet counts go down. Started > with 140mg per day and now taking 50mg per day. One moth of Sprycel > medication and two months rest for platelet recovery. This is how current > medication is going on. I take papaya leaf tea everyday to improve > platelets. > > > > On Sat, May 16, 2015 at 9:29 AM, ANGELYN ESDERS wrote: > > Does anyone have problems maintaining their platelet level? > Mine fall down to almost ZERO, which is a dangerous place to be. I am > covered with big purple bruises and petechiae and look like I have been in > a bar fight. Even a light scratch on my skin brings the blood to the > surface. It is called Thrombocytopenia. My red cells also plummet and I had > 6 blood transfusions last week. > My confidence waivers a little as it seems they don't really know what to > do about me. I have lots of complications. More specialists on the horizon, > but every step forward is followed by 3 steps back. I am on massive > prednisone for the moment. > Can anyone share info on this? > Angie in Canada > Gleevec pioneer since 2001 > -- > -- > [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 gro
Re: [CMLHope] Platelets
I am in India. I have given the method below. You can prepare it very easily. Or you can drink two spoons of papaya leaf extract in the morning. Procedure: Dry papaya leaves completely. Add cumin seeds and little black pepper and powder the dried papaya leaves. Keep it safe in a container. Add water to spoon full of papaya leaf powder and boil it. Filter it and drink warm. regards, Ragavan On Sun, May 17, 2015 at 6:33 PM, ANGELYN ESDERS wrote: > Thank you very much for your reply. > I will try to find papaya leaf tea. > I am in Canada...where are you? > Angie > > -- > *From:* Gopalsamy Ragavan > *To:* cmlhope@googlegroups.com > *Sent:* Sunday, May 17, 2015 7:08 AM > *Subject:* Re: [CMLHope] Platelets > > I have problems with platelet count. Diagnosed in 2012 Started with > Gleevec. Now with Sprycel. With Sprycel, platelet counts go down. Started > with 140mg per day and now taking 50mg per day. One moth of Sprycel > medication and two months rest for platelet recovery. This is how current > medication is going on. I take papaya leaf tea everyday to improve > platelets. > > > > On Sat, May 16, 2015 at 9:29 AM, ANGELYN ESDERS wrote: > > Does anyone have problems maintaining their platelet level? > Mine fall down to almost ZERO, which is a dangerous place to be. I am > covered with big purple bruises and petechiae and look like I have been in > a bar fight. Even a light scratch on my skin brings the blood to the > surface. It is called Thrombocytopenia. My red cells also plummet and I had > 6 blood transfusions last week. > My confidence waivers a little as it seems they don't really know what to > do about me. I have lots of complications. More specialists on the horizon, > but every step forward is followed by 3 steps back. I am on massive > prednisone for the moment. > Can anyone share info on this? > Angie in Canada > Gleevec pioneer since 2001 > -- > -- > [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.
Re: [CMLHope] Platelets
I have problems with platelet count. Diagnosed in 2012 Started with Gleevec. Now with Sprycel. With Sprycel, platelet counts go down. Started with 140mg per day and now taking 50mg per day. One moth of Sprycel medication and two months rest for platelet recovery. This is how current medication is going on. I take papaya leaf tea everyday to improve platelets. On Sat, May 16, 2015 at 9:29 AM, ANGELYN ESDERS wrote: > Does anyone have problems maintaining their platelet level? > Mine fall down to almost ZERO, which is a dangerous place to be. I am > covered with big purple bruises and petechiae and look like I have been in > a bar fight. Even a light scratch on my skin brings the blood to the > surface. It is called Thrombocytopenia. My red cells also plummet and I had > 6 blood transfusions last week. > My confidence waivers a little as it seems they don't really know what to > do about me. I have lots of complications. More specialists on the horizon, > but every step forward is followed by 3 steps back. I am on massive > prednisone for the moment. > Can anyone share info on this? > Angie in Canada > Gleevec pioneer since 2001 > > -- > -- > [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.
Re: [CMLHope] Thankyou
Hi Mylissa, Warm regards. This group has people across the globe. :) Like Mini Europe in Belgium, this group is mini world. :) The initial days look tougher. It will be one year for me by end of March after CML diagnosis. It was a long journey to this situation. Confidence and passion towards life helps a lot. I am a believer. That is also helping me. The muscle pain and cramps were there till few months back. Once I started back my worklife, I dont have many of the discomforts. Hope you will also be fine in all the aspects. :) Wish you all the happiness. regards, Ragavan On Mon, Mar 11, 2013 at 6:12 AM, wrote: > Hi there, > > I want to thank everyone for all the kind responses and helpful > suggestions. I can't tell you how much it means to hear that there is a > light at the end of the tunnel, I just need to be patient to get there. I > will absolutely try the dial soap trick and the tonic water to help with > the cramps. For cramps through the day, would it work to carry it in my > pocket? > > Marty, my name is Mylissa...didn't mean to be a mystery person - lol. I > live in Markham, Ontario, Canada. I am so glad I found this group...I > don't know anyone else with CML and my onc is not open to a lot of > questions and has told me not to research CML on the internet. Think he's > trying to keep me from getting scared. So it means a lot to hear from all > of you. It's reassuring to know that what I am going through is part of > the experience and not some new added problem. > > Have to say, this has been a frightening experience but things are > beginning to look up, with white cells normal now. I just had cytogenetic > testing done last Tuesday and should have the results back from that by the > end of March. In the meantime, in speaking to the onc about the bone pain, > he thought I should try one week at 200mg, and then try 300mg to see if I > tolerate that better. I sure hope so - one of the reasons I wouldn't want > to change from Gleevec is that the patent expires in April 2013 in > Canada.which will hopefully make it more affordable. This is a big > issue for me, as I was recently terminated at work, while I've been off on > sick leave - so no more benefits once the notice period is over. I'm sure > that I will be denied benefits at any new job I get as this will then be a > "pre-existing" condition. So affordable meds would definitely be good! I > never knew medication could be so expensive! I keep telling myself I am > not allowed to throw up, because it would be like throwing up $130...lol. > > Thanks again to all who replied. Pat and Michele - I will have a read > through the links you sent me tonight; thanks for the info. > > 18's back to you Marty. > > Mylissa > > -- > -- > [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/groups/opt_out. > > > -- -- [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/groups/opt_out.
Re: [CMLHope] CML Newbie
Hi, Sorry to know about the CML diagnosis. I was diagnosed at March 2012. I am also on imatinib. I too faced pain initially. Now I dont have body pain. I am not sure about the counts. Please check with your onco about the counts. Hope you will find comfortable soon. regards, Ragavan On Sun, Mar 10, 2013 at 2:47 AM, wrote: > Hi there, > > I was just diagnosed with CML in Oct 2012. Was put on hydroxyurea > initially, but am now on Gleevec. My white counts are now at the low end > of normal (4.8), but my platelets remain high. Anyone else experience > this? Is this normal with CML? > > Also have been experiencing excruciating pain in my shin boneshave > tried hot baths, A535, heating pad etc but nothing seems to relieve it. > Anybody found anything that helps with the pain? I've been told not to > take tylenol, aspirin or advil as they interact with the Gleevec. > > -- > -- > [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/groups/opt_out. > > > -- -- [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/groups/opt_out.
Re: [CMLHope] skin problems on tasigna
Hi Daniel, Very sorry to hear about the skin problem. Hope it will be fine soon. I have similar side effect with gleevac. I have psoriasis for last 10 years. It was under very much under control. I was diagnosed with CML 10 months back. From the time I started taking imatinib, psoriasis flaring was high. Managing it with the help of topical creams and moisturisers. regards, Ragavan On Sun, Feb 24, 2013 at 11:32 AM, daniel wrote: > hi all, > > i am having a lot of small red, scaly patches popping up in several areas > on arms and behind ears. also some inflammation on one eyelid. i have had > skin problems since starting tasigna 3 years ago (itchy scalp, slight > rash), but this stuff is new and seems a bit more serious. anyone familiar > with this sort of problem? any suggestions for treating it? > > thx, > daniel > > -- > -- > [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/groups/opt_out. > > > -- -- [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/groups/opt_out.
