[CMLHope] Medicare and presc drugs cost
Hi, I am getting close to retiring and checking out Medicare coverage for sprycel. Is anyone in the group on Medicare ? I must be missing something cause I can't afford these prices! I am sure someone has been through this beforeplease help Thanks Penny Cml 2002 -- -- [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] Tasigna
Thank you JeanieGleevec stopped working for me and am now on Sprycel. I am worried about side effectsss...I have been fighting a very bad rash...hope that is all that pops up. Thanks, Penny On Sunday, March 24, 2013 5:29:27 PM UTC-6, Jeanie wrote: Symptoms brain bleed Nausea headache blurred vision bad balance Numb tingling and others Make sure to get your blood checked often As your counts can drop fast Jeanie Sent from my iPhone On Mar 23, 2013, at 11:27 PM, patrickemai...@yahoo.com javascript:wrote: Penny, if something was making me wonder if I was having a brain bleed I would be on my way to the ER. Patrick --- On *Sat, 3/23/13, Penny boogie...@yahoo.com javascript:* wrote: From: Penny boogie...@yahoo.com javascript: Subject: Re: [CMLHope] Tasigna To: cml...@googlegroups.com javascript: Date: Saturday, March 23, 2013, 9:53 PM Hi, How do you know if you have had a brain bleed. I just started on Sprycel 2 weeks ago... Penny On Tuesday, November 1, 2011 1:22:54 PM UTC-6, rszi...@aol.com wrote: This is great news about Tasigna! I spoke yesterday to a doctor in charge of a clinical trial. He advised me with my history of bleeding in the brain to NEVER take sprycel, said it is well known that it causes bleeding. All my other doctors have been wanting me to go on it! He advised tasigna only, as it is the only one that does not have the slight side effect for those who are prone to have bleeding. Very very important news for me, as I've not been on anything for four and a half years. Gleevec caused bleeding. I am going soon for another bcr/abl test, it's been a year. I am so thankful I'm still in cellular remission. This doctor yesterday said don't wait until you come out of remission because you could go into blast phase. Pray that things come together for me financially to do this. By the way, what side effects come with tasigna??? 18's, Susan F. Zimmerman -Original Message- From: Suzan Collins skrac...@yahoo.com To: cmlhope cml...@googlegroups.com Sent: Mon, Oct 31, 2011 9:39 pm Subject: Re: [CMLHope] Tasigna Hi I don't post much. I was dxed in June 2004. I had never reached all zeros before and it always stayed around .004. I had so much trouble with severe side effects from gleevec and sprycel and sprycel also gave me skin ulcers. So he put me on tasigna . I have been on tasignafor nearly 2 years and from the beginning I continued to have trouble with bad side effects two months later. So my doctor decided to put me on 200 mgs once every other day. The side effects declined immensely and my last fish test was all zeros so even though it is only 200 mgs every other day tasigna has kept my CML under control. So good luck. I hope that you can get they same results that I have. Suzan *From:* kellyelise kelly...@aol.com *To:* CMLHope cml...@googlegroups.com *Sent:* Monday, October 31, 2011 8:24 PM *Subject:* [CMLHope] Tasigna Marty...tweet, tweet? Ha ha ha!! You are so funny!! AnywayMy PA from MDAnderson in compliance with Dr. Cortes have allowed me to take Tasigna @ 200mg daily. It is less that the recommended dose but they are hoping to lessen side effects but at the same time put the CML back under control. I think she said my PCR was 0.333% (does that make sense?). I have never come out of remission in 4 years until now (boo!). She also said I am showing no evidence of the Philadelphia chromosome. I have no idea what this all means since I cannot retain anything, but, I am hoping it is good news. Any advice, knowledge, etc., would be greatly appreciated. I am currently in the market for a heme/onc and will be looking 50 miles to the West (Cleveland, OH) or 50 miles to the East (Erie, PA). I asked my NP at CCF for some guidance and hopefully she can provide some. 18s to everyone! Kelly -- [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 cml...@googlegroups.com To unsubscribe from this group, send email to CMLHope-u...@ googlegroups.com For more options, visit this group at http://groups.google.com/ group/CMLHope http://groups.google.com/group/CMLHope -- [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 cml...@googlegroups.com To unsubscribe from this group, send email to CMLHope-u...@ googlegroups.com For more options, visit this group at http://groups.google.com/ group/CMLHope http://groups.google.com/group/CMLHope -- -- [CMLHope] A support group of http://cmlhope.com - You received this message
Re: [CMLHope] Tasigna
Hi, How do you know if you have had a brain bleed. I just started on Sprycel 2 weeks ago... Penny On Tuesday, November 1, 2011 1:22:54 PM UTC-6, rszi...@aol.com wrote: This is great news about Tasigna! I spoke yesterday to a doctor in charge of a clinical trial. He advised me with my history of bleeding in the brain to NEVER take sprycel, said it is well known that it causes bleeding. All my other doctors have been wanting me to go on it! He advised tasigna only, as it is the only one that does not have the slight side effect for those who are prone to have bleeding. Very very important news for me, as I've not been on anything for four and a half years. Gleevec caused bleeding. I am going soon for another bcr/abl test, it's been a year. I am so thankful I'm still in cellular remission. This doctor yesterday said don't wait until you come out of remission because you could go into blast phase. Pray that things come together for me financially to do this. By the way, what side effects come with tasigna??? 18's, Susan F. Zimmerman -Original Message- From: Suzan Collins skrac...@yahoo.com javascript: To: cmlhope cml...@googlegroups.com javascript: Sent: Mon, Oct 31, 2011 9:39 pm Subject: Re: [CMLHope] Tasigna Hi I don't post much. I was dxed in June 2004. I had never reached all zeros before and it always stayed around .004. I had so much trouble with severe side effects from gleevec and sprycel and sprycel also gave me skin ulcers. So he put me on tasigna . I have been on tasignafor nearly 2 years and from the beginning I continued to have trouble with bad side effects two months later. So my doctor decided to put me on 200 mgs once every other day. The side effects declined immensely and my last fish test was all zeros so even though it is only 200 mgs every other day tasigna has kept my CML under control. So good luck. I hope that you can get they same results that I have. Suzan *From:* kellyelise kelly...@aol.com javascript: *To:* CMLHope cml...@googlegroups.com javascript: *Sent:* Monday, October 31, 2011 8:24 PM *Subject:* [CMLHope] Tasigna Marty...tweet, tweet? Ha ha ha!! You are so funny!! AnywayMy PA from MDAnderson in compliance with Dr. Cortes have allowed me to take Tasigna @ 200mg daily. It is less that the recommended dose but they are hoping to lessen side effects but at the same time put the CML back under control. I think she said my PCR was 0.333% (does that make sense?). I have never come out of remission in 4 years until now (boo!). She also said I am showing no evidence of the Philadelphia chromosome. I have no idea what this all means since I cannot retain anything, but, I am hoping it is good news. Any advice, knowledge, etc., would be greatly appreciated. I am currently in the market for a heme/onc and will be looking 50 miles to the West (Cleveland, OH) or 50 miles to the East (Erie, PA). I asked my NP at CCF for some guidance and hopefully she can provide some. 18s to everyone! Kelly -- [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 cml...@googlegroups.com javascript: To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com javascript: For more options, visit this group at http://groups.google.com/group/CMLHope -- [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 cml...@googlegroups.com javascript: To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com javascript: For more options, visit this group at http://groups.google.com/group/CMLHope -- -- [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] Re: rash
On Saturday, July 26, 2008 4:17:02 PM UTC-6, Jeanie wrote: Hi all, I just developed a rash on my upper thigh. It is real red and hot to the touch. Does this sound like the gleevec rash and if so, what is the treatment? Thanks and blessings, Jeanie3 -- Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football todayhttp://www.fanhouse.com/fantasyaffair?ncid=aolspr000520 . -- -- [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] Re: Thankyou
Hi, I am Pennydiag. 2002 my story is very close to yours. This year Gleevec stopped working for me and I am back to being extremely tired. My onc has put me on Sprycel we shall see how that works. I hope you have continued success with Gleevec. On Sunday, March 10, 2013 6:42:53 PM UTC-6, myli...@yahoo.ca 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] Re: Help paying for Sprycel
Hi, I know this is a little latebuthope it helps you. I just recieved help from Chronic Disease Fund. 877-968 -7233 Penny On Sunday, September 23, 2012 6:39:39 AM UTC-6, Tammy wrote: Does anyone know of any patient assistance programs to help cover the cost of Sprycel? I have been paying a co pay of 35.00 for the meds monthly an now my insurance is changing. I will have to pay 10% of the cost. Which I'm am thinking around 900.00 monthly. I need help I can not pay this. Sent from my iPhone -- -- [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] eye bleed yes I had them
Hi, I have been on Gleevec for 9 years and I have had thousands of eye bleeds. The first sign is a sharp stinging in the eye and then it is filled with blood. I also have the little dots of blood on my body. Don't know if there is any connection. Small price to pay. Penny On Sunday, September 23, 2012 9:02:06 AM UTC-6, Jeanie wrote: Hi and yes, I had eye-bleeds on Gleevec. Have you rubbed your eyes hard lately? That is what I did, but I think you can get them anyway. Don't worry, they don't hurt and they clear up on their own in a few days. Good luck Jeanie3 In a message dated 9/22/2012 8:27:15 P.M. Eastern Daylight Time, vkre...@gmail.com javascript: writes: It's been a while since I've posted to the group but am doing so now because in the last week I've had two eye bleeds in the same eye. I used to get eye bleeds perhaps once or twice a year but often went for a year or two without having any. This time, I was on vacation and managed to telephone my onc to ask about this event. The PA got on the phone and recited a list of things that might bring about an eye bleed, not one of which included it being a side-effect of Gleevec, which I'd been told, early on, it very well might be. Has anyone in the group experienced this sort of event? I'd appreciate any info you can give me and thank you in advance for your response. -- [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 cml...@googlegroups.com javascript: To unsubscribe from this group, send email to cmlhope-u...@googlegroups.com javascript: For more options, visit this group at http://groups.google.com/group/CMLHope -- [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
[CMLHope] Re: Osteoperosis
Hi again Yes I know what you are talking about my last BMB I bent two needles! this is another reason this confuses me. Did your dr prescribe anything for the Osteopeorosis? my best to everyone...Thank you, Penny On Feb 9, 10:09 am, Suzieq sheila.a.wat...@gmail.com wrote: I definitely remember during one of my many BMB's BMA's being told that my bones were hard, too. But, for those who say how bad they hurt..I too, have that problem and more so when a weather front is moving in. People think I've lost my mind when I say this.but it is soo true. I got up this morning and eyes are swollen as are hands. Hands are burning..we have thunderstorms moving in this afternoon. I think someone says it has to do with the barometric pressure is rising..but, I don't know...not a doctor or weather person...just know how my body reacts. LOL! I am scheduled for a bone density test on the 20thso we will see. Suzeq --~--~-~--~~~---~--~~ [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 -~--~~~~--~~--~--~---
[CMLHope] RE: [CMLHope]
I don't know about your situation but my son and his wife (he has CML) had a baby boy 2 years ago and he is perfect and doing great. No one ever told then not to have children when he had the disease and he was on gleevec and so they did. Hope all goes well for you. Penny, CML mom From: [EMAIL PROTECTED] Reply-To: CMLHope@googlegroups.com To: CMLHope@googlegroups.com Subject: [CMLHope] Date: Wed, 18 Apr 2007 12:00:56 -0700 I am pregnet my husband has been on gleevec for two years, does anyone know if there are anyside affects for the unborn child? I called COH and they said it was not an easy answer and sent us an e-mail with all the side effects of gleevec, but not much on the question. thank you _ MSN is giving away a trip to Vegas to see Elton John. Enter to win today. http://msnconcertcontest.com?icid-nceltontagline --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Medical Articles 3/22
Rob, I don't get any atricles or information I only get an ad to sign up for orlean email. Can you find out or explain what this is about? thanks, Penny M From: Rob [EMAIL PROTECTED] Reply-To: CMLHope@googlegroups.com To: cmlhope@googlegroups.com, leukemia@googlegroups.com Subject: [CMLHope] Medical Articles 3/22 Date: Sat, 24 Mar 2007 00:30:55 -0500 Medical Articles 3/22http://cmlnewswire.wordpress.com/2007/03/23/medical-articles-322/ -- Powered by NewOrleansEmail.Com http://neworleansemail.com _ Watch free concerts with Pink, Rod Stewart, Oasis and more. Visit MSN Presents today. http://music.msn.com/presents?icid=ncmsnpresentstaglineocid=T002MSN03A07001 --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Disability
Hi, Thanks to everyone that replied to my question on the price of Gleevec. I hope someone will help me with this questionIs anyone on disability? I ask this question because I am in retail and my job is physicaly demanding. I pull carts around that weigh over 200lbs I can't quit because I need the insurance. Thanks to everyone for the input and thank you for being there my extended family. --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Eye Bleeds
Hello everyone, I am having a terrible time with eyebleeds. The white of my right eye is covered in blood. It looks frightening and is very embarrassing! Is anyone else having this problem? I am on 200 mg of Gleevec and doing very well:) My best to everyone. Penny --~--~-~--~~~---~--~~ [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 [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Gleevec mail order
I work for Wal-Mart in Idaho and Caremark administers the prescription benefit portion of my health plan. As you might guess I make a little over $9.00 hr. Why do I pay $283.00 a month for my gleevec? Penny
