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My story with GIST

My oncologist is Dr. Tawbi, my gastroenterologist surgeon is Dr. Blumberg
and my liver surgeon is Dr. Holtzman all of them have and are giving me
excellent care. Also I think Hillman Cancer Center is an excellent facility,
I'm very happy to be there.

Where to begin and so much to tell about my journey so far and I apologize
because this will be lengthy. I have read a few folks story's here and we
all have had similar journeys albeit not such pleasant ones.

My story begins Sep. 6, 2011 when I went to my Urologist who actually was
the doctor who I credit with saving my life, Dr. Roger Vega of Butler, Pa.
I had an on going UTI (urinary track infection) which after 2 rounds of
antibiotics would not clear up so Dr. Vega ordered a ultrasound. I had the
ultrasound and it showed shadows, but nothing definitive. As this is
unfolding I'm on my 3rd round of antibiotic this time 500 Mg of good old
fashioned Penicillin which did clear up the UTI.
Dr. Vega ordered a CT with contrast and when it was read we knew I was in
trouble with 3 tumors showing and possibly one more. I have to add that the
time line between Sept. 6, 2011 and Oct. 10, 2011 was filled with another
specialist appointment and further treatment with Dr. Vega which in
actuality prepared me for surgery just a few weeks away.
Dr. Vega referred me to Dr. Blumberg at Shadyside hospital in Pittsburgh who
I saw Monday Oct. 10, 2011.
I hand carried my CT / Ultrasound disc with me and after the initial consult
Dr. Blumberg took the disc to the hospital while my wife and I waited in the
exam room and reviewed it with a radiologist. When he returned he told us I
had a baseball size tumor growing out of the wall of the small intestine and
three tumors in the liver.
He said I'm admitting you immediately to the hospital to have the testing
done and there's no sense in having you drive the 60 miles home to have to
return early the next morning. I would have surgery the next day, he had a
cancelation on Tuesday Oct. 11, 2011 and Dr. Holtzman was also available to
operate on my liver.
To say the least my wife's head and mine were spinning.

I was operated on Tuesday Oct. 11, 2011 early in the AM (the time escapes
me) and after 4 hours in the OR I was on my way back to my room to see my
wife's beautiful smiling face along with my two daughters who have given us
4 beautiful grandchildren the little loves of my life.
My surgery goes as follows.
Dr. Holtzman came and told my wife the liver resection went well. My liver
had 15% of the left lobe resected which got two tumors and the margins were
clear, the third tumor which was on the right lobe and had an ablation done
to it and to quote Dr. Holtzman "I blasted the be Jesus out of it".
Dr. Blumberg came and told my wife that the resection of 6" of small bowel
went very well and the margins were clear and was put back together very
The recovery in Shadyside hospital went well and I must say I was given
excellent care by my doctors, the pain management team and the nursing
staff. My room was on a dedicated cancer floor so they really were in tune
with my needs.
The initial diagnosis through pathology was Gist which Dr. Holtzman and the
Pathologist both agreed on and in the final pathology report this all held
I was discharged in 7 days on Oct. 17, 2011 into my wife's capable care and
was so very happy to see my house as we drove up to it.

I spent the next few weeks regaining my strength and trying to get back to
normal, but as we all know it took longer then I expected. I was patient
with myself and allowed my body and mind the much needed time to heal.

I saw Dr. Tawbi my oncologist/researcher on Thursday Nov. 3, 2011 for the
first time and it was a good appointment and we had tons of information
given to us. We discussed Gleevec, Ct scans, routine blood work and many
more as you all know.

On Saturday Nov. 5, 2011 I had 2 CT scans done the first without contrast
the second CT with contrast.
So then the waiting game was on for the results, but I was able to separate
the anticipation and fear for most of the weekend.
On Monday Nov. 7, 2011 (our anniversary) Dr. Holtzman called and told me
that the CT showed no cancer, what better anniversary present could there
I saw Dr. Tawbi on Friday Nov.18, 2011 and had blood drawn prior to seeing
him. My blood work was good and Dr. Tawbi told me the CT was clear and I was
doing well for where I was at. We discussed Gleevec and he said I should do
well on it.
I started Gleevec 400 Mg. once a day with my main meal of the day on Wed.
Nov. 23, 2011 and to date I have had no side effects, thank God.

I saw Dr. Tawbi Fri.Dec.16, 2011 and he was concerned with my blood work
since my liver function and kidney function were both down to about 50%,
possibly due to the Gleevec which he wanted to rule out.
Although as we found out this was due to a nasty cold/ possibly a viral
infection which antibiotics didn't touch so it wasn't bacterial and was a
I started to hydrate myself with Gatorade many times a day and eat 1-2
bananas a day to get a low potassium level back up and get my kidneys
flushed out with the Gatorade.
I had blood work again on Mon. Dec. 21, 2011 and had the results Tues. Dec.
22, 2011 and my liver function was good @ 5.6 (was 6.6) liver Billyrubin
normal platelets 144,000 (were 108,00), my kidney function was good with the
BUN in good range and the creaton high normal, but within range. They still
wanted to see further improvement with the blood work so I had blood work
done again Wed. Dec. 28, 2011 got the results on Jan. 5, 2012 and my blood
work was much improved.

My next appointment with Dr. Tawbi is Tues. March 27, 2012 and prior to
seeing him that morning I will have a full body PET scan with contrast and
blood work done.
I do have to ask about having the Pet/CT scan both done at the same time as
recommended by our Janeen Ryan.
Janeen informed me that the CT has a better uptake with cancer cells and
they glow more and can be seen more easily if they are present then with the
PET, albeit if I understood her correctly.

This is my story so far and I hope I have been accurate. If I have misstated
facts other then my own history please correct me, I'm still a newbie with
much to learn about GIST.

In closing make no mistake, I'm not seeing my current medical condition as
being in a really good shape, but rather I'm hopeful and very guarded.
I'm not looking through rose colored glasses at all. I fully understand that
in 1, 3, 6 or 12 month's down the road I may have a reoccurrence and go
under the knife again.
I'm 64 years old and not a babe in the woods and when it comes to medicine.
I've seen a lot in my life time my mother who had breast cancer, my dad had
Prostate cancer, but died from heart disease and my father-in-law who had
prostate cancer that metastasized to the bowel.

Thanks for reading my story and God bless you all,

Jeff Bernstein

"With the shoes off, the world is no longer a sight, separated from you
by rubber soles. It is a living, breathing thing beneath your