Happy Mother's Day everyone. Daughter grandson and granddaughter took me out for lunch. Pasta my favorite.
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 10, 2015, at 4:05 PM, "'Icandoallttc' via CMLHope" > <[email protected]> wrote: > > So sorry you had to go through that painful time. Glad it got better. You > are lucky the hospital took you right in. One my hubby was so sick and we > went to the emergency room-- they made him wait for hours to get treated. > Glad you are better. > > 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 7, 2015, at 12:23 AM, Richard H <[email protected]> wrote: >> >> I will wish you luck as well as a successful out flow (OOPs) come. >> >> Richard H. >> >>> On Wednesday, May 6, 2015 at 3:50:29 AM UTC-5, wa2yyx 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. -- -- [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.
