Dear Joyce: Consolidadtions are other chemotherapy treatments. I had 3 after the induction for a total of 4. For all 4 I had to stay put in the hospital for a month. As I mentioned, they first treated my CML as if it was AML. It was really ruff. The othet thing is that I am at a University Hospital (which in a way wxplains why so many doctors). Here in Puerto Rico this is the only hospital that really treats leaukemia patients...they are a specialized unit. but sometimes I feel like running away!!!!
The problem that I have is that my doctors keep making reference to my blast crisis and still handle my case as if I was in the middle of one!!! ONly one of them, who graduated last year told me that I no ,longer have a problem with the blast crisis, that they took me out of it and that it is gone!!! Everybody else still clasiffies me as CML/AML which is really not the case. Now, about Sprycel. is your husband on a once a day or twice a day dose? I hate bone marrow aspirations :( Maria :) On Wed, Jul 16, 2014 at 10:47 PM, Joyce Mesnarich <joy...@htc.net> wrote: > 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. > 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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