Maria, You are truly a miracle! So happy you had success with Sprycel. But these meds are very powerful and do cause serious side effects. It is a shame that our doctors do not always listen to our concerns. The fact that you had to see different doctors during this critical time is unfortunate....but you made it through. I am going to ask a question which may seem stupid, but I don't know what you mean by the term "consolidations". Can you explain that? You are questioning the advisability of continuing Sprycel at 70 mg. I would think that as long as you have periodic bone marrow aspirations to be sure you are not back-sliding, and Sprycel at that dose is not negatively affecting you, I would be inclined to stay with it until and if your bad side effects return. My husband was allergic to Gleevec and put on Sprycel at 50 mg. In 4 months he was PCRU (undetectable). He has had some issure, but nothing so far that is serious. I think all of those on these TKIs are a little on edge wondering what the long term effect of them might be since they have only been in use since 2000. I hope you continue to do well. God bless and keep you. Joyce in IL
On Jul 16, 2014, at 7:38 PM, Maria Cashion 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. 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