Wishing you good luck on your hospital visit. Hope all goes well. Prayers & Blessings Jeanie 🐟🐟18,s Dx 1/2004 Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015
> On May 6, 2015, at 4:50 AM, Marty Gartenberg <[email protected]> wrote: > > Richard, > > That's what we are all here, to share our knowledge and experiences. > > Anyway, I go into the hospital again tomorrow afternoon to have my prostate > operation. If everything goes ok then this horrible catheter will finally > come out after more then ten weeks. It gave me a uti and I am on Cipro and it > seems to have cleared up but I still have to take it for another week. By the > way there will be another catheter put in to make sure all of the blood and > debris are drained out but for only a day or so. > Wish me good luck... > > 18's, > > Marty > >> On Wed, May 6, 2015 at 1:13 AM, Richard H <[email protected]> wrote: >> Yes, the cost of Gleevec has tripled since my first dose in 2002. But, >> everything else in my part of the world. Like Marti, if we didn't have >> Gleevec or six or seven other choices we would not have a chance to say, "I >> will probably did of something else. When I went off Gleevec Nov. 2006 >> because of the side effects the only major study (25 people in England) most >> had returned to Gleevec in 2 years. I did lose the coveted "non detected" in >> about 3 years, but I decided because of the CML groups with the positive >> thinkers to see how far I could go. Well, I made it 6 1/2 years before those >> counts started a steady climb and was asked to please return to Gleevec. >> The statics I am seeing are still claiming only about 5000 people are >> diagnosed each year. I would dare suggest that .the increased new people >> you are seeing is due to increased awareness of our band of CMLers that are >> willing to share our experience. Our CMLers that precipitate in the >> doctors conferences letting them know we welcome those newcomers to ask >> about our experiences. When I respond to someone it is always my personal >> story and what I have learned, at that point I can only hope another CMler >> will share their story. >> >> Richard H. >> >> >>> On Tuesday, May 5, 2015 at 10:35:31 AM UTC-5, Suzieq wrote: >> >>> Hello there fellow CML Survivors: >>> >>> My 1st question: Does anyone know about the patent on Gleevec and if it's >>> about to expire? I was thinking it had up till this month, or the last >>> time I saw the information on it, I thought their extension ended sometime >>> in May of 2015. I don't remember where it was that we could go and look at >>> that information. I told my husband that I thought for sure the price >>> would drop on Gleevec by now, but from what I've seen from some new cases, >>> it looks as if it's increased in price. Course, I didn't see the >>> quantity that the price was for, that could make a difference, I'm sure. >>> >>> 2nd question: How many TKI's are there now for CML (approved and also those >>> in trials)? There are two groups I am in on Facebook and so many new cases >>> being dx'ed every day that it's just unreal. I get upset with some of the >>> CML Survivors in these groups and what they will tell these newly dx'ed >>> people who seem scared to death & looking for good information. I even >>> talked to my doctor about some of this stuff that they are saying. One >>> told a new dx'ed person that his doctor told him when he was first dx'ed, >>> "well, will put you on this drug (didn't specify which one) and you will >>> take it every day. This and this will happen and you'll be cured within a >>> year." I about came unglued when I read that. And, I made sure in my >>> comment to this newly dx'ed person when I was trying to uplift her and give >>> her advice of what I went through and what helped me over the past 11 years >>> that I would be very leary of any doctor who told me that I would be >>> "cured" in a year! Infact, I would be finding another Hem./Onc quickly. I >>> told her that as far as I knew, there still is no cure for CML that they >>> know of. That these drugs are too new and not enough research to let them >>> know if it might be a cure one day. I told her that you can become >>> "undetected" or "non detected" after being on the TKI's after some time. I >>> told her that I call it a "drug induced remission" (those are my words, not >>> a doctors, lol). There are these "so called experts" who have CML and >>> looked at all the info and try and tell the new ones that there's studies >>> going on and some seemed to be cured. (that's false information) My doctor >>> told me (and I have read the info, too) that the one study that was done in >>> England, I believe it was, had several go off their Gleevec. Within a >>> year's time, 50% had their CML return. I'm thinking that discussion I had >>> with her (doctor) was about 2 & 1/2 years ago when I asked to lower my >>> Gleevec dosage. >>> >>> I always mention this group to those in the groups on FaceBook. I tell >>> them that after I was dx'ed in January 2004 & started Gleevec soon there >>> after, I thought I was going to die because of the awful side effects. I >>> said that I spent most of my time lying on my living room sofa or before >>> the throne in the bathroom. After about 4 months of this, I accidently >>> run upon this group(CML Hope) on line and it is what "saved" me. Back >>> then, I think Gleevec was the only drug at the time besides the trials for >>> Tasigna & Sprycel. We all had each other to help & we did. Whatever we >>> found that helped relieve a certain side effect, we shared. What worked >>> for trying to keep food down, we shared. If someone needed help >>> explaining all the tests and those numbers, we shared. >>> >>> So you see, I still appreciate each and every one of you. I miss those >>> who've gone on before us. God bless you and please have a wonderful day >>> today. Thank you >>> >>> Keep Looking up, >>> Breath in, Breath out, Move Forward, >>> >>> 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 >> --- >> 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/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 [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/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 [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/d/optout.
