Hi Richard lets see This will be my 34th year in December 2011 It may as well have been longer but that is when they told me ... My wife and I remember it well, the doctor said "how do you want the news standing or sitting". They did not hold much hope back then for any leukemia patient. It is funny but Lottie sent me an email, about the drug they put me on , It kept me alive for 27 of those years. No doctor has ever been able to explain why?
Lottie sends me great little articles, she is well informed, I may have it longer but she is much more informed than I. I hope she does not mind me sharing her email. The other name for Busulfan is Myleran. There is a difference once I re-read how it was given. I got 0.2mg until my wbc dropped to 20K then I was taken off and put back on when it reached 90K or above. Not sure if this made the difference of my survival or not.. SkipD "Skip, thought you might be interested in this article about Busulfan still being used in treatment of CML. It is also used for myeloma patients ready for transplatation. Conventional chemotherapy Busulfan (Busulfex, Myleran) and hydroxyurea (Hydrea) were the chemotherapeutic agents used most frequently in CML until the development of imatinib. Busulfan is usually given at a dose of 0.1 mg/kg/d until the WBC count decreases by 50%, at which point the dose is reduced by 50%. Therapy is discontinued when the WBC count drops below 20 * 109/L and is restarted when it rises above 50 * 109/L. Busulfan is associated with lung, marrow, and heart fibrosis and can cause an Addison-like disease. In 10% of patients, prolonged myelosuppression may be observed. Hydroxyurea has a lower toxicity profile than does busulfan. The usual dose of hydroxyurea is 40 mg/kg/d; this dose is reduced by 50% when the WBC count drops below 20 * 109/L. The dose is then adjusted individually to keep the WBC count between 2 and 8 * 109/L. Both busulfan and hydroxyurea can control the hematologic manifestations of CML in more than 80% of all patients, although hydroxyurea results in a longer duration of chronic phase and overall survival than does busulfan. Blesssings, Lottie" ----- Original Message ---- From: Richard H <[email protected]> To: CMLHope <[email protected]> Sent: Tue, January 11, 2011 12:22:21 AM Subject: [CMLHope] Re: Price of Gleevec keeps going up How long before you can say 34 years? I will began year 8 the end of Feb. While I keep reading about the rising costs of health care, I wonder why after 10 years of production that the costs of medicine ought to be leveling off and the start up costs should be at a level rate. That is the old cost accountant talking. I am thankful that they have found something that will control our CML. I know that it now serves other types of cancer as well but I would think the expanded sale of the original formula so why is this testing raising the overall cost so fast? So glad you and I are both still here to ask questions. Richard H. On Jan 9, 7:11 pm, Skip Duffie <[email protected]> wrote: > Good evening all, hope everyone had a wonderful new years. > I am 33 year survivor and the cost of keeping me alive in 2009, > was 143,000 for the year, not counting the many many > transfusions of Hgb and Plts, the trips to the hospitals etc > Single handed I am putting Canada's Health care in the red. > My military pension insurance plan is crying ouch. > > The only thing I wish I could do is to thank all those who donate > platelets and Hgb every week for me, I get single (Apheresis) donor platlets > and it takes around four hours for someone to give them. How do you thank > people for that.. I use to give blood but it was just to get the afternoon off. > > SkipD 33year survivor CML > > > > ________________________________ > From: Kelley Kimbrough <[email protected]> > To: [email protected] > Sent: Thu, January 6, 2011 12:22:29 PM > Subject: Re: [CMLHope] Re: Price of Gleevec keeps going up > > 7year survivor myself, I cannot believe they have raised patend to 2019. What's > up with that? > > On Wed, Jan 5, 2011 at 8:49 AM, <[email protected]> wrote: > > Amen!! Tom > > > > > > > > > > >In a message dated 1/4/2011 11:15:11 A.M. Eastern Standard Time, > >[email protected] writes: > >Iblaine, > > >> I couldn't agree more! I have people act shocked when I tell them the cost >of > >>continuing my life, but like you, I explain the millions of dollars it > >>takes >to > >>develop these drugs plus getting through the approval requirements is > >>extraordthey have raised the patteinary and if there wasn't a profit motive >at > >>the end, there wouldn't have been any reason for corporations to develop >them. > >>If you need any better example of capitalism at work, I can't find it. > > >>On Jan 4, 2011, at 9:46 AM, [email protected] wrote: > > >>I'm on Sprycel 100mg daily. If my husband did not have insurance, it would >cost > >>us $`17,534 every 90 days. Yes that was not a typo, Seventeen Thousand! >There > >>is a ton of research that goes into these drugs and millions of dollars to >fund > >>it. I feel very blessed just to have an option of the oral drug verses > >>what >had > >>to be tolerated before these drugs were discovered. They have come a long >way > >>in the last 11-12 years! Our life expectancy after diagnosis back then was >only > >>about five years! I'm happy to be alive and kickin still. > >>>Lenda > >>>----- Original Message ----- > >>>From: "judy" <[email protected]> > >>>To: [email protected] > >>>Cc: "jam 92842" <[email protected]> > >>>Sent: Tuesday, January 4, 2011 1:09:28 AM > >>>Subject: Re: [CMLHope] Re: Price of Gleevec keeps going up > > >>>I guess they don't want to pay the 3 months because they figure we might not > >>>last that long and they would be out the money. the gleevec here is almost > >>>5,ooo a month. I have help paying the copay from a cancer group but I still > >>>have to have the perscription coverage to start with and being on S.S. Its > >>>hard but better than none at all. Good luck all CML people we all need it. > >>>JUDY > > ________________________________ > From: "[email protected]" <[email protected]> > > > > > > > > >>>To: [email protected] > >>>Sent: Sun, January 2, 2011 4:37:33 PM > >>>Subject: Re: [CMLHope] Re: Price of Gleevec keeps going up > > >>>A very simple answer as to why the insurance company won't let you buy from > >>>another pharmacy: The insurance co owns the pharmacy that they make us >purchase > >>>the gleevec from. > > >>>In a message dated 1/2/2011 4:03:43 P.M. Eastern Standard > >>>Time, [email protected] writes: > >>>Dawn: > > >>>>When I was getting mine from Walmart Pharmacy, it was right around > >>>>2800$ to 2900$ for a 30 day supply. That was just about two years > >>>>ago. I received a letter from Anthem B/C stating I was going to have > >>>>to start mail ordering it from this place out of Indianapolis called > >>>>Px Specialty Solutions or start paying a percentage out of my > >>>>pocket. So, I called the Pharmacy people to begin mail ordering. The > >>>>woman said, "maybe we can get you a 3-month's supply at a time". I > >>>>thought, well that would be nice. Well, she called back later and > >>>>said my insurance would not ok a 90 day supply. (no reason given) The > >>>>first time I saw a price they included.....I told my husband it was > >>>>much higher than what it was when I got it from Walmart, so I do not > >>>>know why my insurance decided to do this. It made no sense to me then > >>>>and it still doesn't after two years of mail order. I do have to say > >>>>though, these people have been very good to me and helpful. And, so > >>>>far Anthem has not balked at paying for the Gleevec. Course, my > >>>>husband informed me what it's costing each month for my coverage. > >>>>It's awful, but what does one do but pay it if they can. I did > >>>>wonder though after seeing what you pay.....if they get a cheaper rate > >>>>for 90 days supply verses 30 days? If so, one would think an > >>>>insurance company would go that route in order to save money. > > >>>>Thanks everyone.....it does bring up questions, doesn't it? > > >>>>Keep on fighting with every breath you have, > > >>>>Suzieq > > >>>>-- > >>>>[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 > >>>>-- > >>>[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 > >>>-- > >>>[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-- > >>>[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 > > >>-- > >>[CMLHope] > >>A support group ofhttp://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 athttp://groups.google.com/group/CMLHope > >-- > >[CMLHope] > >A support group ofhttp://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 athttp://groups.google.com/group/CMLHope > > -- > [CMLHope] > A support group ofhttp://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 athttp://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 [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 -- [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
