Hang in--it just takes time to heal. God bless. 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 5:36 PM, Marty Gartenberg <[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. > > Hi, this is a brand new hospital that is only about 5 miles from me. They are > usually not to busy especially around 10:00. Besides they saw just how much I > was suffering so within five minutes I was taken in for treatment, I let them > know that I needed a Foley Catheter and they had it in the treatment room. > > Yes I am very lucky. As soon as they put it in I had instant relief and both > bright red blood mixed with urine started coming out like a waterfall. I > already had this about eight years ago so I was ready for it. I hope that I > never get this again > > 18's, > > Marty > >> On Sun, 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 <emoji_u1f41f.png><emoji_u1f41f.png>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. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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