I had my first BMA in my oncs office without any meds; just the nurse
holding my hand. It was awful to say the least. I had just met this onc and
I
think he jumped the gun a little but he seemed to think right away that I
had leukemia, even before any test were done, except the cbc.
I had several more done but at a hospital with medication. I was really
sore after each one and told to put ice on it.
They say that the PCR blood test is just as useful as the BMA but I'm no
doctor so I don't know; I do know it's much more comfortable.
Good luck,
Jeanie<3
In a message dated 7/17/2014 2:58:54 P.M. Eastern Daylight Time,
[email protected] writes:
Maria,
Thank you for the clarification on consolidations. I guess you will have
to continue to tell the various docs that you are NOT in blast and please
review the records more closely. I understand the "running away" feeling.
But that never works, does it?
My husband in on a 50mg dose once a day. I understand the hating of BMAs.
The last two my hubby had were done by a CML specialist in Ann Arbor, MI,
at the Cancer Center at the University of Michigan. He goes to see this
specialist twice a year, which means a flight from IL to MI, a night's stay
in a hotel and a few needed expenses like food. But the
hemotologist/oncologist he was seeing locally nearly killed him. So we feel
the cost is
justified.
I digressed from my subject of BMAs. The last two were much more
comfortable than the ones done locally at a general leukemia doc in St Louis.
He
does so many of these that he is really accomplished at doing it the least
painfully.
How are you feeling now? Are you able to work normally at your job?
Joyce in IL
On Jul 16, 2014, at 10:01 PM, Maria Cashion wrote:
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 <[email protected]_
(mailto:[email protected]) > 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
<[email protected]_ (mailto:[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]_
(mailto:[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]_
(mailto:[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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