Attention all tasigna users!! Hi Millie and everyone else. If you are currently on Tasigna or have ever been on the drug, even if not on it now, their is a research study/ going on..which has been modified to be one 90 minute skype interview with you..to share your experiences with the drug, how it worked or did not, what your side effects have been etc..quality of life....this is to help the maker understand how best people should take the med, it's to help them make it easier for the patient's to take the drug. That is my understanding. There is a 350 dollar payment to anyone who qualifies to participate. They are on a time crunch and really looking for people to share their experiences. The name of the person who is organizing this is Sari Kaplan. Email: [email protected] Her direct phone number is 312-698-4391. or 877-666-8863 for the general mail box. She is eager to speak to people and I personally have spoken with her and been inteviewed by Vanessa one of the people involved in the information gathering. This is legitimate, confidential, and by participating we may be helping others in some way with CML. so if you are interested, please call today! While the original study was in Chicago and the tri- state area, NY, New Jersey and Penn., it is now opened nationally with skype interviewing as opposed to in person...so anyone anywhere can call and learn about it.
Take care all....Beth I'll write more later, but wanted to get this out now... ! -----Original Message----- From: C.M. Houtz <[email protected]> To: cmlhope <[email protected]> Sent: Wed, Sep 18, 2013 4:22 pm Subject: Re: [CMLHope] Re: Taking a Poll! I know that I'm not on Srycel, but was for a very short while. My Oncologist checked it out, and due to the back, bone, muscle, etc. etc. problems I already was having, due to Arthritis, he pulled me off of it and put me on Tasigna. He said that he knew that it could cause a lot of problems with all of that stuff.....so....it's known by the manufacturers of the drug, and maybe the doctors you're talking to don't research the problem enough. The other side is that they all have side effects, some known, others, not so much. I'm only on 1/2 dose of the Tasigna right now, due to Liver disease and will know more after I see my Onc. on Monday. He's been working with the doctors from the company that makes it (can't think of the name right now) and they put me on half a dose. I had a liver function done last week, and if it hasn't changed, then they may increase the dose. This stuff is all still very new, and a lot of the side effects aren't known. I do know this, and that's that they all do something to our system, and they are toxic....but we're all alive to complain about it :<), and that makes us all happy. I don't know that I've helped anything. My muscle and bone problems have worsened, and who's to say if it's the Tasigna, or not? We all have to keep talking and trying to figure out the best way to handle these things. Isn't it wonderful that we have each other? You all take care and keep on trying to figure this all out....Can't hurt, and might help! Hugs, Blessings and 18's to you, Millie ----- Original Message ----- From: LearnToBallroomDanceOnline.com To: [email protected] ; [email protected] Sent: Wednesday, September 18, 2013 4:56 PM Subject: Re: [CMLHope] Re: Taking a Poll! Geez Peg! You got enough going on?? I think we are definitely on to something! and I believe that the lemon juice is certainly just as effective as the vinegar; and it makes total sense that you side effects would increase; my back spasms have been horrific! It is going to be interesting to see what my next PRC will be, especially since I was off all drugs for almost 3 weeks because of the bronchitis and the PE. And out of curiosity; I am going to ask you the same question that I asked Beth: Have I asked you whether or not you have taken the antibiotics Cipro, Levaquinn or Avelox? They are usually prescribed for Sinus infections, upper respiratory issues and UTI's. They have wreaked havoc on my body! We must stayed in touch, Michele On Wed, Sep 18, 2013 at 9:22 AM, peg <[email protected]> wrote: Hi Michelle, Thanks for your clarification on your dosing, it makes perfect sense now. I am really intrigued by your stomach acid theory. I had been maintaining PCRU for almost two years on a really low dose of Sprycel, but recently came up trace on the last two, prompting a slight increase in dosing. At the same time, I was developing more dietary distress after eating, almost like a gallbladder attack, only I have no gall bladder! I discovered that I could avoid that if I drank lemon juice before meals, which I did with my last dose of Sprycel with catastrophic side effects...the whole body pain, muscle spasm thing that actually reduced me to tears for about 17 hours. I thought it was the increase in dose, even though it had been two weeks since the increase. Now I am wondering if I simply absorbed more because of the lemon juice and if I could go back to the lower dose with lemon and get back to PCRU. Going to kick that thought around with my research doc today. Thought I was going to Tasigna...but the devil you know is always less scary than the one you don't...this might be worth testing. Since you asked, I have a 24 year history of MS, was diagnose with CML in Feb 2010, Melanoma Mar 2010. Started on Gleevec, switched to Sprycel after eight months due to life damaging side effects on Gleevec. Ended up on a twice a week dose because side effects are so severe that I must block two days out of my week to be bedridden. Just accidentally learned that I also have a tumor in my abdomen that in retrospect appears to have been there since CML diagnosis, but was omitted from scan reports. Still trying to determine diagnostically how bad it is and if it is treatable and (like that wasn't enough) while doing diagnostics on that they found something in my lungs...time to stop looking, huh? ;) On Monday, September 16, 2013 12:36:57 PM UTC-7, Michele, Loves to Dance! wrote: Hi All, So, I began taking Sprycel again after pleural effusion. Taking a poll of what YOU think my dosage should be! Here are the facts: http://www.leukemiasurvivor.co/2013/09/back-on-sprycel-side-effects-return.html Thanks, hope you all are having a great day, Michele -- [email protected] www.LearntoBallroomDanceOnline.com -- -- [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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- [email protected] www.LearntoBallroomDanceOnline.com -- -- [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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. 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 [email protected] To unsubscribe from this group, send email to [email protected] 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. 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