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 > >> >> 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 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 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 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 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 a topic in the > >> Google Groups "CMLHope" group. > >> To unsubscribe from this topic, visit > >> https://groups.google.com/d/topic/cmlhope/sLiHn3iNSqA/unsubscribe. > >> To unsubscribe from this group and all its topics, send an email to > >> cmlhope+unsubscr...@googlegroups.com. > >> 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 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 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 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 a topic in the > Google Groups "CMLHope" group. > To unsubscribe from this topic, visit > https://groups.google.com/d/topic/cmlhope/sLiHn3iNSqA/unsubscribe. > To unsubscribe from this group and all its topics, send an email to > cmlhope+unsubscr...@googlegroups.com. > 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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