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
> <[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...
> >>
> >> --
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