Hi Jeanie, or should i say Grandma? I am quite filmier with Iclusig or ponatinib because i always research anything to do with them or CML. And yes there are a lot of bad things that could happen when taking it. However, if it does work for you or anyone else then you should consider it a life saving therapy because your still alive, and that is called 18's which i always end anything which i post because that is the way i feel about all of you. I remember more then thirty years ago that's three decades ago, it was done for me and i now do it for everyone.
Also you should know that it is not recommended for newly diagnosed patients first beginning therapy. One must get their eyes checked for what could be problems later. It is very simple to go to an ophthalmologist and have him or her check it out... Just do it! Remember no one is immune to death but it is yourself that helps to preserve yourself. With all that i have been through and most of you already know what i am talking about, then all you can do is to go on and try to preserve yourself as best as you can, and from what i am seeing then you are! And part of that is to enjoy your life. Two of my favorite sayings are what Forrest Gump said in the movie... "Life is just like a box of Chocolates, you never know what you get" As i read that to me it meant that you don't know just what you got but since his mother said that then since it came out a box of Chocolates then how could any of them be bad? And the other saying was.. "That's enough about that" Remember> 18's, Marty On Sun, May 13, 2018 at 11:12 AM, 'Jeanie' via CMLHope < cmlhope@googlegroups.com> wrote: > Hi Marty and all > I am so glad you told me about what to expect from a stroke. As they run > in our family I will know what to expect. > My chemo was taken off the market at first because of heart attacks and > blood clots. They then decide it would do more good than bad so they put it > back on. I know it had me in remission in three months. > Look up Ponatinib and you will see what I mean. > Happy Mother’s Day to all the mothers on this group. I started my family > when I was 18 and had 5 babies in 10 years. Those were the busiest years of > my life and I enjoyed every minute of them. > My youngest daughter and her daughter are picking me up for lunch. > Have a great day everyone. > ❤️ > > My Motto: > Faith and Pills > With Love > 🐠18's > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/ 2015 > New Doctor--Dr Martine Extermann > Moffitt Cancer center > > 0 CBL. ABL > > On May 11, 2018, at 6:22 PM, Marty Gartenberg <wa2...@gmail.com> wrote: > > Jeanie, > > Sorry to hear about your family having these such problems. If I could > kick that stroke man in where the sun don't shine i am sure that his butt > will never be the same. > > It all comes down to the doctor/s that take care of you. You may find that > the majority of them are good caring people with your best intentions in > mind then there are some that don't really care about you or me and i > happen to know thank GOD only a very few of them. > > While we were on our cruise and got back the buzz in the neighborhood was > that one of my neighbors went in for some back surgery and it was > successful for a few days and then died from a surgical sponge that was > left inside of her. > > You know what? the same thing also happened to me when I had what is > called a TURP procedure but it wasn't a sponge but one of the stents that > was left in me and blocked the output of my prostate causing the worst pain > that i had in a long time. I had to be rushed to my local hospital and they > had to remove that stent. Oh yes i almost forgot that the "doctor" had left > on vacation and no one was covering for him. > > Now there are some of the people of today that are very incapable of even > understanding what the meaning of the Hippocratic oath actually means. > > Don't get me wrong most of these doctors actually helped to save my life, > many times. And this is what i dedicate to them. > > Now there must have been a very good reason why someone would drill holes > into someones skull? Did you ever find out why he did that? It sounds on > the surface like Jeffrey Dahmer. I can not understand why surgical things > are left behind because every shred of anything is always counted and > counted again. > > I can tell you for a fact that there are so many good doctors in this > world, but you have to find them and that's what makes a very big > difference. One thing more: If it were not for the nurses that always took > such good care of me then i wouldn't be alive today. > > I give credit to all of the people that are so dedicated to all of us, > but... Well in my case, it's about about 98.6% My temperature, and the rest > of the 1.4% they can go to where the sun don't shine (one of my favorite > sayings and for good reason > > 18's, > > Marty > > On Fri, May 11, 2018 at 9:40 AM, 'Jeanie' via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Hi Marty and all >> That is so interesting about your stroke. My mother had the same thing in >> her late 70s. She lived alone but her son lived up the street and somehow >> she managed to call him. His wife answered and told her hubby it was a >> prank call because my mother was just jabbering in the phone. He looked at >> her and said that’s mom. They called 911 and soon she was in the hospital. >> By the time I got there I learned the only thing she could do was sign her >> name. She had to relearn everything. I took her to speech class every week >> and she had a tablet she was learning to write again. It took her about a >> year of therapy. My grandmother also had a stroke the same way. So far my >> sister and I have been lucky. My older sister died from the stroke she had >> and I always thought the doctor didn’t treat her right. They drilled s hole >> in her head and I think they should have just let the brain heal. >> Yes Marty. Learning and doing something daily will help keep our brain >> going. But also if you are tired rest >> Beth so sorry about your botched surgery. That is why I have refused to >> go under the knife for my pain. I may have to eventually but right now >> pills and faith are keeping me going. >> You guys are so uplifting and I look forward to your post. >> Marty I get s little sad when I hear about you and Shelly and how you >> help each other. I lost my hubby 20 years ago due to diabetes and heart >> failure. I was his caregiver and we had been childhood sweethearts. It >> was hard to let go. >> More later—— >> Love >> Jean >> >> My Motto: >> Faith and Pills >> With Love >> 🐠18's >> Dx 1/2004 CML Leukemia >> Started Gleevec 2/2004 >> Started Tasigna 9/2009 >> Started Sprycel 11/2009 >> Started Ponatinib 1/ 2015 >> New Doctor--Dr Martine Extermann >> Moffitt Cancer center >> >> 0 CBL. ABL >> >> On May 10, 2018, at 11:52 PM, Marty Gartenberg <wa2...@gmail.com> wrote: >> >> Hi Beth, >> >> Believe me once you put your mind to it there isn't anything that you >> can't do. All that you have to do is to try it. Yes at first you may fail >> but once you get it into your head you will thieve. >> It is a matter of will. >> A story for you: Several years ago right after my kidney transplant my >> wife and i went furniture shopping when i suddenly felt dizzy and clasped >> to the floor, i tried to get up but i just managed to crawl on the floor. >> Shelly was really trying to help me to a seat and the manager came over and >> told us that he just called 911. Within less then ten minutes i was in an >> ambulance on my way to the hospital. When one of the paramedics asked me >> how i was feeling i didn't know what he was saying, it was like someone was >> mumbling to me. Once they got me to the hospital they seemed to be moving >> there mouths but all that i heard were these funny sounds coming out of >> their mouths. When i came out of my coma i couldn't understand English. In >> my mind i was trying to ask for a glass of water but didn't know how to say >> it >> >> It was very frustrating and i knew in my mind that i could talk but not >> anything with English but i did remember that i was still able to speak and >> understand five different foreign languages and the Morse Code because ever >> since i was a young man i was a ham radio operator, but how could i try to >> convey it to anyone. I was in bed and badly needed some water. So i started >> yelling in different languages and tapping on the table with my fingers in >> Morse Code but only my right hand would work, until one of the nurses >> understood what i was asking for in Hungarian one of the languages that my >> parents taught me when i was a young child. From that day on while i was >> still in the hospital there was always a pitcher of cold water on my table. >> >> It took me over a year to teach myself how to learn English again, and i >> did it all by myself. An usual thing happened to me when i went to see my >> ophthalmologist because he was checking for any symptom that the stroke may >> have caused to my eyes, but he found nothing thank GOD. I then mentioned to >> him what had happened to me when i could not speak >> English This is what he told me. He has another patient that also had a >> similar stroke in the same region of the brain that i had mine in. He then >> tells me that this man suddenly started speaking words with a heavy French >> accent but not French but English with a heavy French accent. This lasted >> for about almost two years and he is back to normal. Amazing what can >> happen. >> >> So this is another example of what your mind can do. All you have to do >> it to try and help yourself. >> >> To my understanding the human brain uses about 10% of it's capacity, more >> or less. If you know to the contrary please let me know. >> >> 18's, >> >> Marty >> >> On Thu, May 10, 2018 at 9:59 PM, bkbarney via CMLHope < >> cmlhope@googlegroups.com> wrote: >> >>> Just beautiful Marty!!! I love the stained glass... >>> >>> thanks for sharing!! >>> >>> >>> >>> -----Original Message----- >>> From: Marty Gartenberg <wa2...@gmail.com> >>> To: cmlhope <cmlhope@googlegroups.com> >>> Sent: Wed, May 9, 2018 8:40 am >>> Subject: Re: [CMLHope] Beth >>> >>> >>> >>> On Wed, May 9, 2018 at 9:38 AM, Marty Gartenberg <wa2...@gmail.com> >>> wrote: >>> >>> Beth, Jeanie your learning from eachother and i am also learning from >>> the both of you as you are learning from me. This is what it is. I always >>> say that life is a learning process and well, it is. You must learn >>> something new every day of your life. >>> >>> Now i would like to send you some pictures that i took of some of my >>> projects that me and my wife did together mostly when i wasn't feeling very >>> well, but i still did it. Shelly did the cutting for the most part and i >>> did the grinding and fitting and the soldering, sometimes switching off but >>> we did it together. And it made both of us feel that much better. >>> >>> Everything that you may see in these three pictures are things that we >>> personally accomplished by ourselves including the crown moldings as well >>> as the moldings on the ceiling. Both of us never said that maybe we should >>> stop, but sat down and rested for a while and had lunch or watched TV and >>> then got back to "business". Sure it sometimes taxed me out but i still >>> continued on for weeks at a time or even months. >>> >>> There is a point to all of this, just get your priorities together and >>> there is nothing that you can't accomplish. >>> >>> 18's, >>> >>> Marty >>> >>> On Wed, May 9, 2018 at 6:40 AM, 'Jeanie' via CMLHope < >>> cmlhope@googlegroups.com> wrote: >>> >>> Hi Beth and all >>> I know exactly what you mean Beth. Sometimes I just want to go back to >>> bed and do nothing. >>> I have found however if you make a plan of what you want to accomplish >>> that day it helps a lot. Even write it down. Start on it even if you don’t >>> feel like finishing it. >>> One time I made a plan to read the Bible again all the way through. I >>> have read it before but this was just another plan. So each day I read a >>> little and soon I had accomplished my plan. Well not soon but I did it. >>> Getting through Job is difficult but well worth it especially since he >>> fought disease daily. He had boils all over his body. Can you imagine! >>> I love the part where it got to Leviathan. My granddaughter even drew >>> me a picture of him. >>> Now today is walking and gardening as long as I feel like it. If I get >>> tired or weary I just rest. >>> I remember when I was in the hospital and they wheeled that big old >>> blood cleansing machine in my room I was in for it. They would hook it up >>> and I had to my still for about 4 hours while my blood ran through this >>> machine. I thought it would never be over. It never did any good. The next >>> day my platelets and whites were right back up. I learned from Moffitt they >>> don’t even do that. They just give you the pills and hope for the best. >>> This last chemo Ponatinib has been the best chemo yet with the least >>> side effects except for hair falling out. >>> What do you take? I developed mutants to all the other chemo >>> Just each day at a time and make a plan. Prayers. >>> You have helped me a lot Beth. >>> ❤️ >>> >>> My Motto: >>> Faith and Pills >>> With Love >>> 🐠18's >>> Dx 1/2004 CML Leukemia >>> Started Gleevec 2/2004 >>> Started Tasigna 9/2009 >>> Started Sprycel 11/2009 >>> Started Ponatinib 1/ 2015 >>> New Doctor--Dr Martine Extermann >>> Moffitt Cancer center >>> >>> 0 CBL. ABL >>> >>> On May 8, 2018, at 11:40 PM, Marty Gartenberg <wa2...@gmail.com> wrote: >>> >>> Just look at what your writing... >>> Each and every day is another day so keep on blessing your medication >>> because without it then it wouldn't be another day. Don't despair because >>> you may feel like life is trying to give you a difficult time but then >>> there are other days that that will restore your faith. >>> >>> I have been there and what i found out is that i am still here and by >>> the way so are you. >>> >>> I have always told everyone that Leukemia is a powerful disease and so >>> it is BUT so is your mind... Use it! >>> >>> 18's, >>> >>> Marty >>> >>> PS why do you think that all of my posts ends up with 18's? >>> >>> Because it means LIFE. >>> >>> On Tue, May 8, 2018 at 10:52 PM, bkbarney via CMLHope < >>> cmlhope@googlegroups.com> wrote: >>> >>> Dear Marty, >>> >>> >>> I sing praises every day....for my life and for sprycel. I even bless my >>> medication in my hand before I take it each night.. my little ritual. the >>> side effects of the medication coupled with the two botched surgeries have >>> left me with a great deal to navigate daily. I know I am blessed. But today >>> I am just very very very weary. Tomorrow is another day... >>> >>> Hope everyone is well and enjoying spring...one day at a time...breath >>> in the flowers and enjoy!!! >>> >>> Love to each and every one of you...and thanks for reading.. >>> >>> 18's B >>> >>> >>> >>> >>> -----Original Message----- >>> From: 'Jeanie' via CMLHope <cmlhope@googlegroups.com> >>> To: cmlhope <cmlhope@googlegroups.com> >>> Sent: Tue, May 8, 2018 2:21 pm >>> Subject: Re: [CMLHope] Beth >>> >>> Hi Beth and great news. Are you any pain? Marty I wanted to asked you >>> if you they gave you any meds for pain? Did you ever have to take anything >>> for leukemia ever again? Can you walk well? >>> My daughter bought me a wheel chair just in case I get to tired of >>> walking. >>> Do you walk well Beth? >>> So happy you are in remission. I’m in remission too but I know from >>> experience how leukemia can test it’s ugly head. >>> Prayer and pills is my motto and it’s working. >>> Good luck >>> Jean >>> >>> My Motto: >>> Faith and Pills >>> With Love >>> 🐠18's >>> Dx 1/2004 CML Leukemia >>> Started Gleevec 2/2004 >>> Started Tasigna 9/2009 >>> Started Sprycel 11/2009 >>> Started Ponatinib 1/ 2015 >>> New Doctor--Dr Martine Extermann >>> Moffitt Cancer center >>> >>> 0 CBL. ABL >>> >>> On May 8, 2018, at 8:40 AM, Marty Gartenberg <wa2...@gmail.com> wrote: >>> >>> Beth, Beth, Beth, >>> >>> What can i say, As you mentioned you are now UN-detectable, but what you >>> should have written should have more piazzas to it. Something like shouting >>> it at the top of your voice on the top of a high mountain with your hands >>> and arms reaching upward and stretched and extended out to HIM. >>> >>> Well Beth sometimes i get carried away but please scroll down. >>> >>> >>> >>> >>> >>> >>> >>> BUT NOT THIS TIME🌷 >>> >>> Do you know why? It took place more then 30 years ago. Once my bone >>> marrow transplant was finished after being confined inside of that bubble >>> that i was in about a week before i was to be finally discharged i still >>> had to wait that one week and i was fixated on the clock within that bubble >>> with that second hand ticking away. Tick Tock, tick tock, tick >>> tock............ I waited for the seconds to tick away the whole day and >>> night until i finally fell asleep, and then i was woken up again and it >>> continued on for most of that never ending week. I was in there for seven >>> months and let me tell you it was more then horrible but i had to do it >>> until the final seconds that i was able to finally to leave there, or so i >>> thought only to find myself back in there two weeks later because of a >>> severe infection from my in chest Hickman catheter that put me back in >>> there for another two weeks. >>> >>> Was it all over? Not until i was about to leave that plastic bubble and >>> at that time i raised my hands fully extended and ripped that clock right >>> off the wall and since i finally had my shoes on i STOMPED the life of that >>> clock to death. >>> >>> However, on that original day that i was discharged from the hospital it >>> was raining like cats and dogs coming out of the sky and i just stood there >>> in the street and let the rain populate on my face and then i remember >>> raising my hands and arms up toward HIM and it was finally over with. >>> >>> Oh yes i am not kidding, about a week later i received a bill in the >>> mail for $25 for the clock that i put out of my misery and it was marked >>> PAID. And there was a reason for that. To be continued. >>> >>> There is a Moral to this story... Beth all that you need to do it put >>> your hands and arms up toward the sky and HE will do the rest. >>> >>> 18's >>> >>> Marty >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> -- >>> -- >>> [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 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