Hi Maria, As you already know my kidneys failed and I am waiting for a kidney transplant.
Some words of advice to you. You must try to protect your kidneys because you don't want to end up like me. If you are not diabetic start drinking lots of cranberry juice. Not the kind that is blended with grape juice or anything else just plain cranberry juice. Try to avoid salt and spicy foods. Be kind to your kidneys and they will be kind to you. 18's, Marty On Wed, Oct 29, 2014 at 7:48 PM, Maria Cashion <mariacash...@gmail.com> wrote: > Geee!!! that's a new one...being classified as old news...JA<JA<JA<JA<JA > (laughter in Spanish!!!) Love you guys and I really hope all is well with > all of you!!!!! i do love you!!! > > Sprycel is stil giving me problems...my kidneys dont like it...It seems > that I will end up in a switch to something else... > > HAPPY HALLOWEEN!!!!!! > > Bless you all!!!!! > > Maria > > On Wed, Oct 29, 2014 at 10:24 AM, icandoallttc via CMLHope < > cmlhope@googlegroups.com> wrote: > >> >> That was old news. I hope everyone is good today. Spending Halloween >> with family. Be safe and don't eat too much candy hehe >> Jeanie >> Sent from my iPhone >> >> On Jul 16, 2014, at 10:35 PM, Maria Cashion <mariacash...@gmail.com> >> wrote: >> >> Thanks, Marty. It really helps a lot to have feedback from people who >> know what this is all about. You are also a warrior and your story also >> proves it!!! Never loose hope. I am praying for my doctors grey matter to >> multiply on time for my next appointment!!! :) >> >> Just thought you would laugh at that!!!! >> >> Maria >> >> >> On Wed, Jul 16, 2014 at 10:15 PM, Marty Gartenberg <wa2...@gmail.com> >> wrote: >> >>> Hi Maria, >>> >>> It sounds like you had an array of very non caring doctors and very >>> ignorant of exactly what medications are out there now, but you >>> survived through them. I always say that you are your own best >>> advocate because you know your body better then everyone else. >>> >>> Sometimes, which was in your case, these doctors don't listen to what >>> you have to say. Remember me telling you that your a very strong >>> willed person, well doesn't this prove it? >>> >>> I also told you that you were a miracle because of the very short time >>> it took you to go from a hefty blast into MMR. Things just are >>> happening right for you. I believe in GOD and HE is smiling down on >>> you. >>> >>> Maria, when I had CML I too was in blast with a white blood count in >>> excess of 486,000. At the time there were none of these TKI drugs but >>> only Alpha Interferon that was only on a blind study, and I was given >>> the opportunity of maybe or maybe not being on it. I knew that if I >>> chose it that I could possibly be put onto a placebo so the only other >>> option that I had was a bone marrow transplant. Since it was found >>> that my sister was a perfect HLA match I decided to try that. At the >>> time a perfect HLA match was considered to be a six out of six Antigen >>> match while today I believe it is 10 out of ten. >>> >>> I have to honestly say that I really suffered through the transplant >>> and way afterward. I had to live in a plastic bubble in the hospital >>> for seven months. Having total body irradiation and huge doses of >>> chemotherapy. That was more then 24 years ago and I am still here to >>> write about it. >>> >>> However, now I have some more health problems. My kidneys have both >>> failed and I am on dialysis for three times a week for more then 4 >>> hours each session. But I still am living just waiting for a kidney >>> transplant, hopefully it will come soon. >>> >>> So that's about my story and as I mentioned we all have our own >>> stories, but when one tells of his or her plight it just seems to help >>> the others on here. >>> So, Maria you just keep posting anything that you want to and I >>> guarantee that you will hear from someone on here with some valued >>> advice because they have or already going through it. This is what is >>> so good about this site because as you can see we all care deeply >>> about each other. >>> >>> 18's, >>> >>> Marty >>> >>> >>> >>> On Wed, Jul 16, 2014 at 8:38 PM, Maria Cashion <mariacash...@gmail.com> >>> wrote: >>> > Hi! My blast crisis was terminal and was behaving as AML. I had high >>> dose >>> > chemo and Sprycel. After induction and much praying, my 70-80% blasts >>> went >>> > down to zero and have remained as such until now. This happened in 1 >>> month. >>> > I had 3 consolidations. Worked Sprycel to 140 mg for a while, but was >>> > lowered to 100mg. Right now I remain in complete molecular >>> remission. My >>> > doctors consider me a miracle, for I am the first person in blast >>> crisis >>> > that they have been able to save. I believe that they learned from what >>> > happened with me and have saved others. :) >>> > >>> > Last January I had a severe reaction to Sprycel. Everything that >>> could go >>> > wrong went wrong. Weight gain, edema (all over), heart trouble, >>> thyroid >>> > went crazy...I stopped Sprycel for a month and my doctor told me that >>> we had >>> > to change medications. Had an additional bone marrow aspiration and >>> biopsy, >>> > resulting in complete molecular remission. >>> > >>> > What is important to note is that Sprycel had been causing problems >>> little >>> > by little. I told my doctors about it, but they did nothing until all >>> went >>> > crazy. The main problem that I see is that they treat patiensts as if >>> they >>> > were all stupid and wont really listen to you. >>> > >>> > Well, back to the story...After being off Sprycel for a month, >>> everything >>> > went back to normal and I lost 37 pounds of water in that short >>> time...Came >>> > to the clinic for my next appointment, another doctor was attending, >>> didnt >>> > know me or my clinical history (he is a student in >>> hematology/oncology) The >>> > main physician had only seen me once while I was on a consolidation at >>> the >>> > hospital...She told me that she was really concerned about taking me >>> off >>> > Sprycel bcause it had worked so well for me...so I was put back on my >>> > regular 100 mg/day Srycecl dose. Slowly, but steadily everything began >>> > agai, weight gain, When I went to my clinic appointment early june, I >>> told >>> > my doctors. I wanted to have Sprycel withdrawn and change medications >>> as I >>> > was told earlier. My hemo/onco, the one that really saved me at >>> first; told >>> > me that theres was nothing else other than Sprycel and that ia had >>> three >>> > more years.. >>> > >>> > ON the following appointment, luck changed and I had the doctor that >>> first >>> > told me that there were other medications available for me. I told her >>> that >>> > I wante to try lowering Sprcel to 70 mg daily before changing to >>> another >>> > med. The Hema/Onco in charge agreed and told me that if this didnt >>> work, >>> > he would change me to Bosulif. >>> > >>> > I am really feeling better with Sprycel at 70 mg daily, but have >>> concerns as >>> > to whether it is a good idea... >>> > >>> > Maria Cashion >>> > >>> > >>> > On Tue, Jul 15, 2014 at 9:37 PM, 'Marcie Goodman' via CMLHope >>> > <cmlhope@googlegroups.com> wrote: >>> >> >>> >> Hi Maria: >>> >> >>> >> How have you progressed since diagnosis and what meds do you take. I >>> don't >>> >> believe I've "met" (since we all know each other through the internet) >>> >> anyone dx'd in blast stage. What an awful fright that must be. I >>> relate to >>> >> pushing off the symptoms and assuming it's just tiredness because I >>> did the >>> >> same for over a year. >>> >> >>> >> I hope you'll let us know how you are doing and you and your family >>> are in >>> >> my thoughts and prayers. >>> >> >>> >> Marcie >>> >> Baltimore >>> >> >>> >> Sent from my iPad >>> >> >>> >> > On Jul 15, 2014, at 8:10 PM, Marty Gartenberg <wa2...@gmail.com> >>> wrote: >>> >> > >>> >> > Hi Maria, >>> >> > >>> >> > First I am glad to see you posting. You might have seen all of the >>> >> > people on here welcome you to the group. >>> >> > >>> >> > It seems like a lot that you have been through but everything worked >>> >> > for you and you have your family to take care of. That was probably >>> >> > the main reason that you did so well. You seem to be a very strong >>> >> > willed person. >>> >> > >>> >> > Most people on here have similiar stories so your not alone, but the >>> >> > main thing here is that your doing so well. >>> >> > >>> >> > I always end any of my posts with two numbers, 1 and 8 which are the >>> >> > symbol for life. >>> >> > >>> >> > 18's to you Maria, and don't be a stranger here we all look forward >>> to >>> >> > continue hearing from you. >>> >> > >>> >> > Marty >>> >> > >>> >> >> On Tue, Jul 15, 2014 at 7:14 PM, <mariacash...@gmail.com> wrote: >>> >> >> Well guys, here is how it all started, and how I was diagnosed. >>> >> >> >>> >> >> I am an anthropologist (physical anthropologist and archeologist), >>> a >>> >> >> wife >>> >> >> and a mother. Of course, I am used to working hard, almost like a >>> >> >> slave >>> >> >> (all mom’s are J). I guess about 7 years ago, I started feeling a >>> >> >> little >>> >> >> more tired than usual...I mean, field work is hard, working from >>> 7:30 >>> >> >> AM >>> >> >> until 3:00 PM at construction sites doing archaeological >>> monitoring, >>> >> >> pickup >>> >> >> my daughter at 4:00 PM or so and spending the rest of the day with >>> her, >>> >> >> cooking, waiting for my husband to come home from work. Putting >>> the >>> >> >> kid to >>> >> >> sleep at night. Then, I would have to write my reports and if >>> lucky, >>> >> >> slept >>> >> >> a couple of hours to start a new day… >>> >> >> >>> >> >> Mom can’t get sick…I started to feel more tired than usual, heavy >>> night >>> >> >> sweats, pain in the back, left side just above the waist…Doctors >>> said >>> >> >> it was >>> >> >> nothing, probably my imagination…It got to the point that I would >>> come >>> >> >> home >>> >> >> exhausted. I couldn’t even do house work. I would move the >>> furniture >>> >> >> to >>> >> >> sweep and mop, then I had to sit for half an hour in order to be >>> able >>> >> >> to put >>> >> >> everything back in place, Once I had my white blood count high >>> and my >>> >> >> doctor told me that that only meant that I had an infection… >>> >> >> >>> >> >> On December 18th 2011 I had to go to the ER of my nearest >>> hospital. >>> >> >> After >>> >> >> examination and testing, xrays, ct, etc, they even considered >>> sending >>> >> >> me >>> >> >> home until the CBC arrived. I was hospitalized just when the >>> x-mass >>> >> >> season >>> >> >> was getting good and my 14 year old was on vacation from school. >>> WE had >>> >> >> so >>> >> >> many plans that were never accomplished!!!! Knowing that my >>> daughter >>> >> >> was >>> >> >> suffering my absence was the main factor that gave strength >>> specially >>> >> >> because not even my family came through. We were and still are >>> just 3, >>> >> >> my >>> >> >> husband, my daughter and I… >>> >> >> >>> >> >> I was then transferred from the hospital I was in to a government >>> >> >> operated >>> >> >> hospital area known here in Puerto Rico as CENTRO MEDICO. The >>> HOSPITAL >>> >> >> UNIVERSITARIO DE ADULTOS has a specialized unit for leukemia >>> patients. >>> >> >> THEY >>> >> >> SAVED MY LIFE. >>> >> >> >>> >> >> I had my first bone marrow aspiration and biopsy done at the first >>> >> >> hospital. >>> >> >> Results were in soon, 2 days or so and results were given to my >>> husband >>> >> >> to >>> >> >> take over to the new hospital. Results were horrible, although at >>> that >>> >> >> time >>> >> >> I didn’t pay much attention to them. Thank GOD I did not!!! I >>> would >>> >> >> have >>> >> >> given up then and there. >>> >> >> >>> >> >> Final Diagnosis: >>> >> >> >>> >> >> Comprehensive Assessment: BLAST PHASE OF CHRONIC MYELOGENOUS >>> LEUKEMIA >>> >> >> WITH >>> >> >> T(9,22) AND DELETION OF 9Q. >>> >> >> >>> >> >> The patients peripheral blood smear shows markedly increased >>> blasts. >>> >> >> The >>> >> >> bone marrow core biopsy also reveals a large population of blasts; >>> >> >> including >>> >> >> 80% of the maroow spaces. The blasts are small to intermediate in >>> size >>> >> >> with >>> >> >> high N:C ratio, immature chromatin and a small amount of cytoplasm >>> with >>> >> >> occasional cytoplasmic granules… the blasts are positive for >>> MPO,CD66, >>> >> >> LYSOZYME with no significant expression of CD34 AND CD117… >>> >> >> >>> >> >> >>> >> >> >>> >> >> PRONOSTICATING RESISTANCE TO TYROSINE INASE INHIBITORS AND >>> UNFAVOURABLE >>> >> >> PROGNOSIS… >>> >> >> >>> >> >> -- >>> >> >> -- >>> >> >> [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 >>> >> >> 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