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 <[email protected]> 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 <[email protected]> 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 <[email protected]> >> 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 >> > <[email protected]> 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 <[email protected]> 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, <[email protected]> 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 [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 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