From: "Dr. D. Kossove" <doctordee@telkomsa.net>
To: "Dana and Tom Singleton" <Singsends@CS.COM>; "LMS List" <L-M-SARCOMA@LISTSERV.ACOR.ORG>
Subject: Subject: Questions
Date: Thursday, November 06, 2003 9:00 PM

1.  My husband had a PET scan that showed increased metabolic activity
in a node in the left mediastinal.  One of the docs (the one who
ordered the PET) says PETs are very reliable and extremely sensitive,
but our LMS doctor says he doesn't even order them for his patients
because they are so full of errors.  Any ideas?  Should we be
concerned?  All but one of the tumors in his lungs have disappeared
after the five rounds of chemo, so it's strange that this would show
up now, even though otherwise he's NED.  Any chance this is an
incorrect result?

Who is your LMS doctor?
Where does he practice?
What specialty is he in?

If you ignore the node and it is hot, it will be more difficult to
deal with it later.  Nothing is lost by investigating it..   Discuss
the PET scan with a
radiologist who is experienced in reading them.  The  intensity of the
spot is important.  LMS shows up on PET scans if it is high grade and
larger than 7mm.    While spread of LMS via lymph nodes is unusual, it
is not rare, and is probably more common where biopsies or
"cut-throughs" were done.  See the BIOPSIES page on the drafts page of
the website www.leiomysarcoma.info

My first surgeon did NOT take a node seriously, and did not preserve
my chance for cure.  I have spent the last year trying not to die from
his mistake, and don't know if I have succeeded.


2.  How long has it taken for you all who have had
adriamycin/ifosfomide
chemotheraphy to recover fully once treatment ended?

No one ever recovers FULLY 100% from chemotherapy.  Hair is often
thinner, mirroring other changes that have occurred.  Especially to
bone marrow.  While chemotherapy damage to normal tissue in the body
might not be very apparent, it is cumulative with further chemotherapy
and radiation.

Those people who have a history of having had
mononucleosis, often relapse with each chemo infusion, and might find
that it takes a year or more to rest up from the cumulative fatigue
from the relapses.

People DO get to feeling better, though.  And can return to normal
life and zest, if other factors allow for that.


3.  After treatment, did you (males) become sterile? (Sorry if that's
too personal.)  Our doc said my husband would probably be, but we were
wondering what other people's experiences have been with those
medicines.

Some women resumed their periods.  If you are concerned about your
husband's fertility, the test is very easy to do.  Collect a sample in
a condom WITHOUT spermicide, and deliver it to the lab for the
appropriate tests.  Rule of thumb:  Treat all males as potentially
fertile... otherwise Murphy strikes.

AIM shouldn't impair his ability to "shoot", and enjoy it with you,
even if he's shooting blanks.

It would help if you included a signature with your husband's potted
case history at the end of your letters, when you are asking
questions.

warmly,
doreen

Jan 2001 chest wall resection for deep, high grade, stage iii
Leiomyosarcoma

October 2001 laparoscopic adrenalectomy for stage iii Adrenocortical
Carcinoma

April 2002 resection of "hot" PET scan lymph node for LMS... surgeon
took wrong nodes

September 2002 large inoperable mediastinal mass grew from those nodes

Sept 2002- Feb 2003  exceedingly high dose epirubicin chemotherapy...
stable disease, no shrinkage

April 2003 resection of mass, aorta, left lung, etc in 12 hour
marathon operation at UCSF by Dr Jablons

July and August 2003  Proton Beam Radiotherapy to positive margins at
Loma Linda

November 2003 PET scan scheduled

 